Tell Your Story

Have you been diagnosed with New Daily Persistent Headache? If so, I would love to hear from you. Send me your story, share your frustrations, ask your questions and I will publish them here. I have found it to be extremely therapeutic to share my story and listen to what others have tried and are going through.

Contact me directly at alandisman (at) gmail.com


Comments

Tell Your Story — 163 Comments

  1. Hi AmyJane,

    I came across this blog (via Twitter) and am delighted to have finally found some more information on NDPH. I have not been diagnosed with the condition as yet although I have had a constant 24/7 headache since the 22nd December ’08. No one seems to know what it is. Having read about NDPH and Hemicrania Continua I believe it may be one of these two conditions.

    I thought you’d be interested in having a look at my blog http://www.permanentheadache.blogspot.com as you mention that it helps you to see what others are doing to fight the headache – as you will see, I have been trying a number of alternative therapies lately which seem to be improving my condition. The headache is, however, still always there.

    Let’s hope we can somehow fight this all together!

    • Thank you for getting in touch! I will you add your blog to my blogroll so others can find you as well. I learned something new from your blog, even at a quick glance (I have never considered the parasite connection). I am so sorry to hear of your struggle. It is similar to many other NDPH patients that I have been in contact with over the years. I hope you can get a definite diagnosis soon, as it does help with treatment.
      Please keep me up to date on your progress!

      • I am convinced that I have Lyme and/or co-infection. I have had NDPH for 10 years and have ruled out most of the other possibilities. I have daily, all day headaches, chronic fatigue, arthritis in my shoulders and neck, tinnitus, pain in my ears and my left eye is seemingly getting worse.

        I was tested for Lyme early on and never had a tick bite so it made sense that I didn’t have Lyme. Only recently did I read that 30% of the lyme tests don’t identify lyme disease or the co-infection. I also didn’t realize that 50% of people bitten by ticks do not get a rash.

        Does any one recommend a good doctor who specializes in Lyme disease?

        Thanks,
        Bob

        • Bob, you need to find a LLMD- Lyme literate medical doctor. Where do you live? I might be able to track one down for you. I’ve had all of those symptoms and it is definitely Lyme. After treatment, I’m much better, though not everything has healed. But I have improved enough to function somewhat normally.

        • I have had NDPH for 10 years and was very close to putting a pistol in my mouth. I wrote a suicide note. I have seen countless doctors (neurologists, ENT, pulmonologists, psychiatrists, etc.). I spent 2 worthless weeks in the michigan neurological headache clinic. I have had my teeth drilled. I’ve tried every drug know to man. I had nerve blockers injected into the back of my neck and my eye brows. The inpatient treatment cost my insurance about $60,000 and the hospital is billing me about $8,000 that my insurance didn’t cover. In the end, I lost hope. I was tired of people thinking that I was making it up or exaggerating. No one can imagine having the head pain every day 24hrs a day for 10 years. I was a hard charging financial executive and now I was being accused of being lazy or just not trying?

          Do yourself a favor, go to a (http://www.ilads.org/) Lyme disease doctor. Ensure that they give you the complete Igenex lyme test (roughly $1500). I went to the (http://www.lymecenterne.com/) Lyme center of New England. It is run by a nurse practitioner, Susan Neuber, who has had Lyme similar to us and is by far the best medical professional that I have ever worked with. Incidentally, she charges about half of what the normal lyme doctors charge ($450 per visit). She ran the Igenex tests on me an turns out I have Lyme and 3 co-infections (mycoplasma, babesiosis, anaplasmosis). She also has a phlebotomist on site and has staff to get approvals from insurance for drugs, IV, blood tests etc. This doesn’t sound like a lot but when you are suffering, it is a nightmare tracking this stuff down yourself. The first Lyme doctor’s staff was having me do all the leg work which was making my head explode.

          I am getting a PiCC line next week which will give me IV antibiotics. The need for the IV antibiotics to to battle the infection across the blood brain barrier which seems to be very difficult when you have been infected as long as we have.

          Some quick stats: Standard Lyme Tests (Western Blot and Elisa test) only catch 70% of Lyme cases. Only 50% of people who have been bitten by a tick, actually recall being bitten by a tick.

          I had been tested several times over the past 10 years and the standard Lyme test turned up negative. And every doctor will ask “have you been bitten by a tick?” Then they ask “Did you have a bulls eye rash?” It turns out that all of these questions are worthless in diagnosing Lyme. Instead they lead to 10 years of suffering mentally and physically, losing house, investments, dog, wife, career, friends, etc.

          My symptoms were:
          NDPH – nonstop 24hr/day headache – sudden onset
          Chronic Fatigue
          Tinnitus with pain in my ears
          Sensitive to sound
          Sensitive to Fluorescent lights
          Arthritis in my shoulders
          Body pain
          Night sweats
          Sleep problems (if I missed a night of sleep, it could turn into 2 nights and the head pain to skyrocket)

          • Bob,
            I have been having symptoms very similar to yours (pain in the back if my head and neck, ringing ears, pressure that builds in my head and ears, and constant fatigue, just to name a few). I’m addition, the pressure that builds in my head has presented itself as imbalance when walking. I constantly feel like I’m slipping on ice or being blown by a stiff breeze while walking on a tight rope. The dizziness has gotten so bad that I’ve been using a wheelchair and walker for the past month.
            I was tested for Lyme disease last week by the Houston headache institute and I had a rheumatologist run a full auto-immune workup on me. I haven’t heard any results yet.
            My primary care nurse practitioner is convinced I have anxiety issues. I 100% disagree with her, but she is trying to convince me to see a psychiatrist.
            I hope your new diagnosis leads to effective treatment. I can’t imagine feeling this way for 10 years. It’s been two and a half months for me so far, and I’m reaching the end of my rope when it comes to finding an answer. I’ve exhausted all of my possible options.

            Aaron May

          • If you take a look at the symptoms of neuropsychiatric Lyme, anxiety and a variety of other issues are listed. Also, how could you be this ill and not be anxious? I hope you find answers and relief soon.

        • Yep it turned out to be Lyme, babesia, anaplasma and mycoplasma. I’m so frickin angry that all those doctors let me suffer for so long.

  2. Amy,

    I came across your blog in attempting to understand my constant headaches and how to deal with the pain. I’ve been suffering from severe headaches since I was 14, now 25 and have yet to be diagnosed. Like you I’ve tried many medications to no avail and regular over the counter pain killers do nothing for me. Although I haven’t suffered from a constant headache everyday for the last 9 years, I have periods of persistent headaches for months on end and then the pain seems to disappear for a little while. To my dismay it always returns. I’ve currently been suffering for the last 2 months with a series of pretty severe headaches and find myself frustrated and defeated. The more research I do, the more I believe it is NDPH, but my doctor continues to tell me nothing, another frustration. It helps to know I’m not alone, but saddens me to know that other people are in as much pain as I am.

    Thank you for sharing your story, and allowing me to share mine. Like you said, no one understands what you are going through, until they go through it too. I’m glad there are people out there who understand.

    • Hi Brandy,
      Thanks for sharing your story. I’m so sorry to hear you are going through this, and that you haven’t gotten an accurate diagnosis yet.
      Seek out a doctor who knows about NDPH. There are so many things that you can try, but it is necessary to know what you are dealing with – or you will just be throwing medication at the headache blindly!
      I hope that you will get a much needed break from the pain soon.
      Amy

  3. Hi Amy,

    Just found your blog and wanted to share my story with you. I developed a headache in late Nov 2007. It has never really gone away. It was so intense for 10 days that I couldn’t function. Thankfully the pain level “broke” and I was aware of neck/shoulder pain too. All on the right side. Since then I’ve been dealing with constant pain and it is so overwhelming. I have multiple bulging discs in my neck so for awhile the docs were saying that was the cause and tried to treat that with PT, etc. No improvement.

    About six months ago I stumbled upon NDPH on the internet. I prayed to God that I didn’t have it b/c basically every piece of info you read says we’ll never get better. But when I read the symptoms it fits me pretty well.

    You’re one of the few others I’ve read about whose pain comes and goes. That’s one reason I’ve tried to convince myself it’s not NDPH but I guess it really is. I recently started seeing Dr. Rozen too.

    I admire how positive you stay. I’m failing miserably at that. Right now I’m in a bad pain flare and I feel so hopeless. This pain has already changed my life in so many ways and I’m afraid it’s going to continue to rob the few things I have left. There has to be some reason for the pain – I don’t believe we just developed a headache for no reason. I wish we could figure it out. Take care and I look forward to continuing to read your story and sharing our experiences.

    • Hi Wendy,
      Thank you so much for sharing your story.
      I have to be honest, I am not always so positive about the situation. I do believe that this will not go on forever. I’ve convinced myself that this pain is temporary – which pretty much goes against what most doctors would say about NDPH.
      It’s the only was I can get through it I guess.
      Please stay in touch and let me know how you are doing…
      Amy

  4. Amy,
    September 16 2006 was the morning I woke up unable to walk, see, or function at all. I never thought that that would be the day that would change the rest of my life, at least life up until this point.
    I went misdiagnosed with Chronic Intrinsic Migraines for 2 years until I was referred to the Michigan Head and Neck Pain Institute and a Godsend, Dr. Todd Rozen. He has been doing all of the major studies and research on NDPH and he diagnosed me in 5 minutes, literally. However, along with this diagnosis came the sad news that my condition is the refractory form and not the responsive form.
    Having just passed my 3 year anniversary months ago, I admit, I am feeling quite defeated. I have tried so many things to fight this constant headache to no avail. Medications, yoga, exercise, changing my diet, physical therapy, nerve blocks, shots, ER visits, and now they are saying that I have maybe a handful of options left, one of them being hospitalization at the headache clinic.
    I am starting to notice that my head is progressively getting worse and that my comprehension and memory are weakening as the time passes, but where do we go from here? People just dont understand the struggle I (and we) go through just to get out of bed in the morning, concentrate in class, finish my homework, even having fun takes effort at times.
    Finding your blog made my day today. Thank you so much for letting me share my story and lifting my spirits =]
    Sincerely, Caitlin

    • Hi Caitlin,
      I’m glad to hear that my blog has helped you in some way. It has helped me so much to know that I am not alone in this struggle.
      Still, it breaks my heart every time someone shares their story. Although I don’t want to be alone in this, I wouldn’t wish NDPH on my worst enemy.
      I agree, no one else understands and it often takes great effort just to get through the day.
      I hope that something will change soon and you will have a break in the pain. I don’t remember exactly when things changed for me, but I now have times where my headache stays beneath a 4 or 5/10 for a week or two at a time. I can resume a normal life for a time, and it’s wonderful. I’m coming up on my 5 year anniversary. Yay.
      Please feel free to stop by here again and let me know how you are doing, or contact me directly.
      Wishing you a low pain day,
      Amy 🙂

      • Amy,
        FANTASTIC NEWS!!!!! I have started some new treatments, and although I am not yet pain free, I have been at the lowest level of pain in over 3 years! I have started using a TENS unit daily on my neck and shoulders, sleeping in a soft neck brace, and doing phsyical therapy for 5 weeks now and it has been truly remarkable how much better I feel. I have been working on strengthening my muscles in my shoulders and neck and it has helped greatly. I also started a new regiment of meds that has helped give me my life back. I encourage you to speak with your doctors about those things in hopes you and others can find even the slightest bit of relief like I have. Good luck! I hope this news helps some other NDPH sufferers =]
        Best wishes, Caitlin

        • Caitlin, that is wonderful news! I want to know more! Please tell us everything! 🙂 I am definitely going to ask my doctor about this type of treatment. I have heard that it takes time (months to a year) to see positive results from PT, so the fact that you are feeling better at all is a great sign. I’m cheering for you here. 🙂 I know that reducing the pain is a major accomplishment and I can imagine how happy you must be about it.
          Please keep me updated!

      • Amy, wanted tto see how your doxy treatment was going because my doc just took me off mine. The toll it has taken on my body the past year has been significant and I wanted to be sure your doc went over everything that it can cause and effect over the long term. As much as I had hoped it would help, sadly I am back in a bad cycle and my dizziness and fatigue has returned thus making me somewhat of a hermit who needs to nap all the time. Any suggestions to help the dizziness and constant run down feeling? Hoping to find you well and relatively pain free, Caitlin

        • Hi Caitlin – I stopped with the Doxy / minocycline treatment in early December (without consulting my doc) because I had so many other things going on – a sinus infection, root canal / infection there – and I was on so many more antibiotics that I thought I needed a break. I haven’t gone back on, but was considering it.
          I am not aware of the long term side effects. What have you been experiencing? Please share, or email me privately! The majority of the visitors I get to this site are looking for information about the doxy/singulair combo and I would like to be able to share as much honest information as possible.
          I hope that you are feeling well (head wise) other than the side effects. 🙂

          • As much as I hoped and felt the doxy helped me out, I must say the side affects were not exactly desirable. Ill be quite blunt and some of the things arent too pretty so be prepared!
            To start off, my stomach would get upset very easily and I would get nauseous constantly like a morning sickness kind of deal. Then I began having a hard time digesting things and would pay the price for it later with the runs or throwing up. I began experiencing heartburn every time I layed down and Tums would barely touch it sometimes. The worst side affect I must say has been the constant yeast infections I began suffering. Nearly 1 a month since september. I found out that Doxy kills all of the GOOD bacteria in your body, in this case in the vagina/cervix, that provide the right pH balance for your feminine areas and once they are killed, yeast can take over often and fast. I had never gotten a yeast infection before the Doxy and hope to never have them one! As most women know, they are uncomfortable and irritating. Many times the over the counter stuff just wasnt enough and I had to get on anti-fungal meds from my OBGYN anyway(we all know what its like to be put on ANOTHER medication).

          • Sorry, I dont know why it did not post the rest but here it is!
            In addition to the yeast infections and upset stomaches, the Doxy made me photosensitive. I could not be out in the sun without SPF 50 or higher! Literally, any SPF under 50 and I would still fry. I would get swollen, burned, and “hivey” after being in the sun and would feel these weird numb/tingley/hot sensations all over my extremities (similar to the blood rushing to your head and you feeling hotter). Thus, I lost basically my whole summer to being too scared to venture outside without 500 layers of clothing on and spent my time looking quite like a snowman with no color.
            I feel the Doxy helped to “jumpstart” my treatment but after being on it a year, it just wasnt worth it any more. I suggest taking it for a few months to get you on a lower pain level but then stop it. 1 year was far too long in my opinion. I felt it helped me manage my pain a little bit better, but I feel these newer meds that I am on work better. The side affects will get progressively worse the longer you are on the Doxy but in the short term they are not bad.
            Ive been on plenty of other meds too if you need more personal, truthful opinions on things. Idea though, maybe you should make a forum or link on your site where patients can talk openly and honestly about their experiences with their meds, patient to patient and ask questions express their side affects and see if others felt the same way etc…Just an idea!
            Let me know how things are going! I love this “community” and that I now have a sounding board of othr NDPH patients who I can relate with =]

          • Thank you Caitlin, for explaining your experience! I may move this over to the new post section or include it in a future post so that more people can get a clear idea about what to expect from the doxy /singulair combo.
            I only took it for 3 months, and was kind of glad to be off of it when it was over! I can certainly see that longer term use would throw your system way out of balance. It would, of course, be completely worth it if it cured the headache! I guess it does for some people.
            Thank you for the forum idea – I had not even considered that before! I think it would be really helpful and people might be more inclined to leave their opinions.
            I have no idea how to go about adding a forum, but I will look into it and let you know! Thanks again, and I hope you are having a low pain day!

            (oops – forgot to ask – what new meds are you taking? Curious minds want to know! 🙂 )

  5. Hi Amy, I too am going through the same as yourself. I woke up one morning in August 2008 with a headache that I have never felt in my life that I honestly thought that I was about to Die. It is now just over a year and a half and every day from the moment I wake up I have to get on with my normal life working and looking after my 2 young kids while suffering from this headache 24/7. At first my doctors said it was stress due to having young kids etc.. and I was put on all different types of anti depressants however they didn’t work and I also could not tolerate any of the side effects. I was transferred to a specailist who deals with head pain and straight away he diagonised me with daily persistant headaches. I have tried about 20 different drugs including anti convulsion drugs, acupuncture, botox, lumper puncture, last week I have 2 nerve block injections into my occipital nerve however this also did not work. I am not booked into hospital next week for a 4 days were each day I will get a infusion of dihydroergotamine injection each day for 4 days. I hope that this works!! I will let you know how I get on after next week once I come home from hospital however I so don’t feel positive due ot all the other treatments that have failed. I will be back in touch and so glad to have found this website to share my story x

    • Hi Annette, thank you for sharing your story. I’m sorry to hear that you haven’t had any success with your treatments yet. Unfortunately, that is all too common with NDPH. Did you even get a few hours of pain relief from the nerve blocks?
      Please let us know how the infusions go, as that is on my “future treatments” list as well. Hope you are having a low pain day. 🙂

  6. Hi Amy,

    Well I came home from Hospital on Friday evening after having 9 sessions of the DHE Infusion however it has made no difference at all. I am now just going to take some time off work for a few months and try and concentrate on getting better. My younger daughter starts nursery next week so with both kids out for a few hours I am going to start going for a swim etc.. and take some time out for myself. It is very hard to life with the fact that I might have these headaches for a few years or maybe ever but I just need to try and get on with things the best I can. I will continue to take douselpin medication as it is the only medicine I can tolerate and does help my mood. Thanks for replying to me and let me know how you are xx

    • I’m so sorry to hear that this didn’t work better for you. I have heard of it being successful with someone who had NDPH for 18 years.
      Please do take time for yourself. Treat yourself well, treat your self gently. You are doing the best you can with the situation you have been given. So many people with NDPH take responsibility for their headache, as if it’s some how their fault.

      I think when I finally got to the stage of “fine, I’ll just get on with my life” I started to feel a little better on some level. I took a break from the doctors and the medications for a while, until I was ready to try things again.

      It is still very frustrating at times because I know my life could be so much better if I was pain free. Life would be so very different.
      Please come back and let me know how you are doing. 🙂

  7. Hi,I was just diagnosed with NDPH yesterday,I woke up with a headache nearly 2 years ago and have had a headache everyday since, thankfully I have good and bad cycles but unfortunitally I’ve been in a bad cycle for a few weeks!!
    I was diagnosed with a Chairi malformation right after my headaches started and so I’m still trying to figure out if that has anything to do with the headaches,anyone else have this malformation?And my neurologist is trying me on 12mg of melatonin for the NDPH anyone had luck with that?

    • Hi Rachel, I’m sorry to hear that you have been diagnosed with NDPH. At least you now have some direction on how to treat your headache. I hope that you will go into a good-low pain-cycle again soon. I’ve been in a bad cycle myself the past couple of weeks and it is always frustrating.

      I have heard of people with NDPH also having a Chairi malformation, though I don’t know much about it. Check the MD junction support group for NDPH (there is a link in the side bar). It has been discussed there at length and you may be able to get some treatment ideas or advice from the people there.

      As far as the melatonin, I can’t really say that I have heard of any success with it for NDPH. I’ve heard it has been helpful for people with other types of headaches. It is all natural at least, won’t have negative side effects and should help you sleep and may help with depression symptoms, so those are all good things! I hope it helps with the headache as well – please come back and let us know how you are doing with it and if it gives you any pain relief.
      If you don’t see any change, definitely get back in touch with your doctor because there are many, many medications you can try.
      Wishing you a pain free day –
      🙂 Amy

  8. I’m so excited to find your site. Well, not really. Actually, I’m angry and heartsick that I’m back on the computer searching NDPH. I started Singulair+Minocycline last May, and it worked great until last month. I’m so scared and upset; I can’t believe this is happening to me again. But I AM enjoying your blog. I blog about Headache, too, among other things.

    Do you know many people who have been on the Singulair/Mino/Doxy combo for very long? Or anybody who’s experienced it suddenly NOT WORKING? I see Dr. Singer in Seattle, and now he wants to repeat all my initial workup tests. First, another MRI of my Sphenoid Sinuses. Didn’t you also have some kind of Sphenoid Sinus trouble?

    I’ll be glad to share my real name with you if you want, just email me at the gmail address. For my blog, I use a pseudonym. Just sign me,

    Baby

    • I did have an issue with the Spheniod sinuses – so please let me know if you find anything out with the MRI. It still seems kind of hazy to me.
      I’m sorry that you are back searching for info again. I know how you feel. I think it becomes more difficult to tolerate that pain after you have had a nice break in the pain.
      I know that generally, with NDPH, treatments work for a time and then they stop working and you have to try something new. So I don’t think that what you are going through is strange for NDPH.
      I hope that Dr. Singer finds something new for you to try that works just as well. Please keep us up to date here! I have lots of readers that check in for new ideas.
      Going to check out your blog now… 🙂

  9. It all started back in September 2009, I got a sudden headache. I blew it off and took some pain killers. A week later, i knew something wasn’t right, the pain got so unbearable i went to my local ER. The ER thought “oh, it’s just a migraine.” They drugged me up and sent me home. After weeks of persistent pain, i went to my family doctor. He diagnosed me with migraines but gave me a referal to Neurology which wasn’t for months later. After no pain pills worked i went back for a second opinion, then it was TMJ Syndrome and got put on meds for that. Still didn’t even touch the headaches. My Neurology appt was nearing, until i got the phonecall no-one wants, it was cancelled. The re-scheduled it for another 2 months ahead! I got new symptoms that disabled me, i was in the ER 3 times in less than a week hooked to various IVs and getting CT scans, Spinal Taps and all kinds of migraine meds. FINALLY, i got to be seen by a Neurologist again, who diagnosed me with NDPH, it brought tears to my eyes to finally after 9 months, finally have an answer. I start a course of new meds soon and hope to get results.

    • Hi Bethany,
      I’m sorry for the delayed response. I hope by now you have started a course of treatment and are getting some pain relief.
      Your story is so similar to many I hear. NDPH patients are rarely diagnosed quickly, and unfortunately it is pretty difficult for most of us to find a treatment that works.
      Please feel free to contact me if you have any questions or could use a little support through this.
      Wishing you a pain free day,
      Amy

  10. Hi,
    I just wanted to write and say I’m still out here (in Washington, DC) with NDPH and doing ok. I too had a sphenoid sinus problem, an infection that required surgery to fix. The headache that started with it never went away though. So, I’m at 1.5 years with it. What’s weird is that mine seems to have moved mostly into my nose and middle two upper teeth. My nose is just always sore. If I touch it, it feels sore.

    However, I’m doing pretty good all things considered. I started taking Nortrypiline (sp?) and Cymbalta that seems to have helped a good bit. I still have a bad day now and then, but overall the pain is way down.

    So, rambling here to say thanks for this site. It’s good to know I’m not alone in this. Also, anyone reading this, know there is some hope and people do experience improvement. We may not be able to end the headache, but we can manage it. I’ve gotten back into traveling abroad, working out with a trainer, doing great at work, and feeling happy again. I know I have this pain in my nose, but it doesn’t have me.

    • Hi Michael,
      Thanks for the info – I need to follow up and see if my sphenoid sinus infection is gone or if it needs further treatment. I’m thinking it needs more treatment, and I am wondering if this is what triggered my headache initially.
      I’m so glad to hear that you have gotten back to your life! I think we appreciate being able to get through the day more than most people! I hope you continue to keep the pain down. And keep us updated from time to time on how things are going!
      Best,
      Amy

  11. I recently went into the hospital for the DHE therapy with the Montefiore Hospital Department of Headaches in NYC, I was admitted on Mother’s Day and released the following Thursday. My headache did break my final day there and it felt like a taste of freedom, and thats exactly what it was a small taste. I got home and ended up with an arsenal of medications and had to come down off the IV’s – not any easy task, it took me about 3 full days to get back to my normal self, and best of all – not literally, my headaches came back with vengeance. My Dr. said its a good thing because I can realize my triggers and see what things set of my headaches. They changed my meds here and there and told me I am on medication management from here on out until a new possible solution opens up. I tried Biofeedback before and after the hospital stay as well – neither time it worked. I am starting Allergy testing tomorrow just because you can never be too sure of what causing what. In more recent weeks my medication have caused me to gain a great deal of weight approx 10lbs in the last 2 weeks, which is a lot to someone who weighs 120lbs to begin with. I am on other medications to manage and offset the weight gain but obviously it is not working. I am frustrated and at the end of my rope, I am ready to come down off all medications and see where my headaches lie and what levels I am at. Have people done this? What happened, how did you feel?

    • Hi Lindsay,

      I have been off medication for about 6 months now and I am doing pretty well. I recently passed the 5 year mark with NDPH and I can say that I am definitely better this year than I was in the first two or three. I have weeks that are bad, days that are awful, but then I have a fair amount of time that I am functional enough to work and care for my kids, so I guess I’m doing better than is typically expected.
      I get really sick of taking meds that have side effects and don’t seem to help my head very much. Sometimes it is just easier to deal with the pain for as long as I can before taking anything. When I get a real break from pain, it is always very difficult emotionally for me to cope with the pain when it returns. It always returns, for me at least.
      My doctor also said that to see any break in the pain is a good sign. It means there is some hope, even if they don’t know how to help, it is not a lost cause. You are not the first person that I have heard from that has used this treatment and had complete relief for a short time.
      Please hang in there. I hope the pain lets up for you. It is always hard to deal with when you remember what life was like without it. I’m sorry that you are going through this, but know that you are not alone.
      Please check back in and let me know how you are doing,
      Amy

      • I went to see my Dr. today and asked him to take me off all my medicines and he wasn’t thrilled with the idea, but understood why I wanted to do it. So slowly but surely under his guidance I will begin the decent to a medication free life style something I haven’t had in 3 years. He told me about a new procedure they are doing for people who have headaches, a surgeon puts a pacemaker type machine in your upper chest area and there are “wires” that run to your optical nerves to stimulate them. I may have the actual function or some of the words mixed up, but thats a new solution apparently. He had a woman who was taking 7-9 prescription drugs a day, heavy duty ones and now she takes nothing. In addition I was also to have an echo by someone I work with because a friend of their’s had one and ended up having a hole in their heart, once the hole was closed – the patient had no headaches anymore and originally suffering like all of us. My doctor also mentioned the option of using narcotic drugs or anti-psychosis drugs as a last resort- things are not looking up for us NDPH sufferers, seems that there is not one thing we can all do to get rid of these bad headaches, no cure, no solution, no simple quick fix. Very frustrating. I resume allergy testing thursday, but so far all negative.

        Amy – have you ever thought of turning this section of the site into a forum set up? May be easier to comment and talk to different people if there are topics posted, etc.. Just a thought.

        • I would love to turn this area into a forum somehow, but I’m not sure how to go about it. I will see if I can find a WordPress expert who can help!
          I hope that coming off of all the meds goes well for you. You may find out that they were doing nothing to help you after all. My doctor has never offered narcotics, though my dentist has given them to me. I admit it, I saved them! I take one every now and then when the pain gets unmanageable. It’s the only thing that works, although they don’t even get rid of the pain entirely.
          Wow, no allergies? That’s great. At least that is one more thing you can cross off the list. I’m taking a cooking class this month called “Food for Life” which is designed for cancer survivors, but I think this type of diet should – in theory – help us too. Certain foods will work as an anti-inflammatory etc.. I will write about it soon, hopefully there will be something positive to take from it.
          I don’t think I could tolerate having a machine stuck in me – the idea of it completely freaks me out. I guess that means the pain isn’t bad enough these days, so that’s a good thing. 🙂 Keep us updated – and I’ll look into getting some kind of forum on here!
          Thanks,
          Amy

  12. I do not have NPDH but my wife does. I was wondering if you know of any resources for those of us who can’t understand what you go through but deal with it in other ways. I love my wife very much and want to do whatever I can to help. Life is very difficult at times for both of us because of NPDH and anything that might help me to be a better husband in light of this would be greatly appreciated.

    • Hi Carl, I wish I had some great advice for you. I think the fact that you are trying and that you are patient with her and her pain will be a very big help. I think the most difficult thing for many of us is that we feel alone in our pain, as if no one understands. It’s constantly with us, yet, we don’t usually talk about it constantly. I am sick of hearing myself complain about it.
      The forum at mdjunction (see link in sidebar) has a few spouses of NDPH sufferers that go there for support for themselves and to try to find solutions. They are always very welcoming.
      Also, taking the time to try to understand what she is going through, just that effort, would make many of us feel better. We don’t all have someone who would even take the time to research the disease to understand what it is – and what it isn’t. That would be a big deal to me. 🙂
      If there is anything else I can help you with or if you have any questions, please just ask!

  13. Amy,
    I am going in for the same treatment that “Lindsey” just underwent through the Montefiore Headache Center on Sunday and I am nervous. I started having a lot of sinus infections and debilitating headaches about 15 years ago and resorted to sinus surgery for relief but got none. I also have had a lot of TMJ issues for many more years than that but never had a history of migraines. These headaches were most likely sinus related (and maybe some tension headaches thrown in there) and may have triggered what my previous neurologist of six years labeled as intractable chronic migraines and have led me down the path of daily headaches for at least the last 8 or 9 years. No one has been able to give me a real answer and I have tried just about every medicine they could throw at me along with botox injections, magnesium injections, nerve blocks, nuerocranial reconstruction (desperate I am), acupuncture, PT, bite plates for the TMJ and I went to some very good doctors in NYC, traditional and non-traditional. It seems at the headache center all the doctors want to say is that I have rebound headaches due to overuse of medication but that is not why I started getting such terrible headaches in the first place. All of those “preventative” medications really did a number on me physically and psychologically over the years and after the hospital they have to find the right ones like they tried with Lindsey and now I am worried it will be like starting all over again once I am off the pain meds. They believe I may have never responded to traditional treatments because of the other medications I might have been using through out the years.
    Do you get this a lot with NDPH that pain medications you have taken are why you haven’t responded to treatment from physicians? And to Lindsey, were you taking pain medications before the hospitalization that the doctors felt were part of the problem? You are the only one on-line so far I have found who has been through the treatment at Montefiore.

    • Hi Christine,
      How did it go with this treatment? Did you get any relief from the pain? I hate taking the preventative med, for the most part, and I don’t take any at all at this point. All they do is make me ill in some other new way, and they never help my headache. I know doctors would say that I have to keep trying, but when do you say enough is enough? And how much damage are we doing along the way?
      I hope that you are doing better at this point. I certainly understand your frustration. You are brave to try the out the surgical options. I’m sorry to hear that they weren’t a success.
      Please give us an update when you get a chance – and I apologize for the delay in responding.
      Amy 🙂

    • Christine –

      I can’t believe its been so many years for you to be in pain! People think my three years is long, wow you definitely have me beat – not that its for the good either. 🙁

      I was taking pain medications before the hospital, and I had tried all other options it was a last resort type thing for me. I had tried Botox, nerve blocks, biofeedback (waste of time) etc etc and juggled meds before they got me into the hospital. Since I was released I have been back to Montefiore about 3 times and my medications have been changing each time. They never once have thought my medications were a problem with my headaches- more of that I seem to be one of the few patients that cant get relief from anything they try and do to me. It has gotten to the point that I am going to the Bronx every month and getting monitored and having my medications adjusted and still not finding any relief. I am the only person I know of with this problem, let alone the only one I know of who got admitted to the hospital for such a crazy thing. It’s “comforting” to see someone from the area, reassures me that I am not crazy and this is a real thing we suffer from.

  14. Hi Amy,

    I spoke to you a few months back and thought I would just drop by to see how you are doing. Since January I was taking a drug called Amitriplyne which I have tried twice in the past 2 years however I took some time off work at the start of the year to have a go again and to tolerate the first few weeks of the side effects. Well after 6 months of giving it a good shot I have now came off it as not making any difference. I done some research on line myself and came a cross a drug called Zanaflex which is not a licenced drug for headaches however my specialist as prescribed it for so will give it a go tonight and let you know how it goes. Have you ever had botox injections? In April this year I got it done and if made huge difference to the pain in my head as it totally relaxed my muscles and I was virtually pain free for about 8/9 weeks until it started to wear off. At that time I had to pay for it so it can be quite pricey however as from last week Botox has now been approved in the UK to treat patients with chronic headaches so I have made an appointment with my doctor to get this done again and best of all it is free!!! Will keep you updated xx

    • Hi Annette,
      I’m so glad to hear that the botox treatments worked for you and that they are going to be covered by insurance. They are not currently covered by my insurance and I haven’t determined if it would be worth the expense for me, because I have heard many mixed experiences. I’ve been very busy around here this summer. I’m still adjusting to the new school schedule and my head pain has been bad over the past two weeks. I haven’t tried anything new lately. Just trying to do what has worked in the past – a vegan diet, exercise, etc…it’s hard to follow when I’m feeling awful and I am almost to the point of giving in and trying some new drugs. Please let me know how things go with you and how the Zanaflex works out.
      Hope you are doing better,
      Amy

  15. Hello,
    My name is Alessa and I am thirteen years old. It all started March 21, 2010. I was diagnosed with a sinus infection and put on antibiotics. That week, I got worse and worse and then there was so much pressure in my head that I thought I was dying. I was brought to the ER, being put on IV. I stayed overnight. The next day, the doctors diagnosed me with migraines. Two weeks later, I am back in the hospital again;put me on IV again. Another diagnoses of migraines. Two weeks later, back in the hospital again. I went to go see the neurologis May 25. It was a long struggle everyday!!! I saw him and he said I have chronic daily headaches. Everyday was a struggle to go to school and to go out in public. It is Know, 5 and half months living with this condition; almost 6. This was the worst summer I have evr had and My birthday was in July and I didnt enkoy it. I have tried everything from going to physio,osteo and reflology.

    anybody can help , i will appreciate it grately.

    • Hi Alessa, I am so sorry to hear that you have been going through this. It is so similar to what I went through in the first year with NDPH. I wish I had some answers for you. Every day is a challenge, I know. Trying to get on with your life seems impossible. I know you and your family must be so frustrated with the situation. Did you get a diagnosis of NDPH, or are they still calling in chronic migraine? Has any one mentioned NDPH as a possibility? In some ways, it only helps to know so that you can get the support you need, and also find a doctor that has a clear understanding of what NDPH is and how it differs from migraine. There are many different meds and treatments you can try (as you probably know), and a few specific to NDPH that would not be given for migraine.
      Keep trying new medications or alternative treatments to try to manage the pain. For me, acupuncture helped manage the pain a little and some people insist that it has helped them. Also, take a look at your diet and maybe consider the Eat to Live headache diet. I spoke with someone recently who has reduced his pain drastically this way, and it has helped me bring my pain levels down a little.
      If you have any other questions, please just ask and I will try to answer.
      Amy

  16. Has anyone tried Zyprexa for NDPH,its my Neurologists newest attempt to cure my 2 year headache,its only been 2 weeks and I’m feeling pretty good but I do tend to cycle through the bad phase every 4-6 weeks so we”ll see!

      • No side effects so far,I’m a little scared that I might gain weight on it,at the moment I’m on 5mg and I’m working my way up to 10mg every evening,Its hard to judge if its working yet because my headaches seem to cycle so much.I’ve just had a bad week but I think I’m coming out of that today,and we”ll see if the headaches come back in a week or 2 on the zyprexa,I’ll keep you updated!!

  17. Hi! My name is Hannah .I am a Junior at a University in Minneapolis. My headaches started on February 18th at 9:20pm, when I was a Sophomore in college. It had just been a normal day with no stress and nothing out of the ordinary. I don’t have a history of headaches and had always been able to get rid of one by taking medication. But this one would not go away. I took Motrin and went to sleep and expected it to be gone when I woke up.

    It wasn’t. Over the next week or so, I noticed that my headache never really went away no matter what medication I took. 6 days after the onset I went to a clinic where they said it was just a bad migraine and gave me a shot of Toradol. Although this gave me relief for about 12 hours, as soon as it wore off my headaches returned in full force. One week later I returned to the same clinic where they told me that I had tension headaches and should just stop chewing gum (that made me angry).

    I returned home to Michigan for Christmas and saw my family doctor. He did tests that all came back normal. And of course, like everyone else he thought it was migraines brought on by lack of exercise or stress. However, he referred me to a Neurologist.

    Since then I have been on at least 10 pain medications as well as a daily dose of Lamictal XR and have had no relief whatsoever. I’ve been through tons of tests: MRI, MRA, Catscan, EKG, bloodwork and a Lumbar Puncture, and everything came back normal. I was also told that I have TMJ and that sleeping with a bite splint would relieve my pain…which it did not.

    I am back at college now. I have been suffering for 8 months now I am having a very difficult time with this constant pain. I wake up everyday with the same headache I fell asleep with. I struggle in my classes because my eyes get heavy and blurry when I have a severe headache and I get very sleepy. I have trouble concentrating and remembering things at my job because the pain gets in the way. On top of that I am constantly dizzy and fatigued during the day. And recently, my headaches have been disturbing my sleep schedule. It takes me longer to fall asleep and I feel like I’ve only gotten 4 hours of sleep when I really got 8.

    I stumbled on the diagnosis of NDPH because I was so frustrated with not getting any help with my pain. I have not officially been diagnosed but I fit all the symptoms and I have an appointment at the Headache Clinic in Ann Arbor in November.
    Until then I am just trying to make it through one day at a time.

    I really do feel like no one understands how I feel. I have very supportive and helpful family and a very understanding boyfriend. However whenever I complain about my pain and someone responds, “I know, It’s okay,” It takes everything in me not to get angry and explain that they definitely DON’T know…and they definitely don’t understand. But, without them, I know I couldn’t take this…

    I guess all things happen for a reason right? Maybe, whether I get diagnosed with NDPH or not, this is whole thing is just to make me stronger…

  18. Hi! My name is Hannah. I am a Junior at a University in Minneapolis. My headaches started on February 18th at 9:20pm, when I was a Sophomore in college. It had just been a normal day with no stress and nothing out of the ordinary. I don’t have a history of headaches and had always been able to get rid of one by taking medication. But this one would not go away. I took Motrin and went to sleep and expected it to be gone when I woke up.

    It wasn’t. Over the next week or so, I noticed that my headache never really went away no matter what medication I took. 6 days after the onset I went to a clinic where they said it was just a bad migraine and gave me a shot of Toradol. Although this gave me relief for about 12 hours, as soon as it wore off my headaches returned in full force. One week later I returned to the same clinic where they told me that I had tension headaches and should just stop chewing gum (which made me a little upset).

    I returned home to Michigan for Christmas and saw my family doctor. He did tests that all came back normal. And of course, like everyone else he thought it was migraines brought on by lack of exercise or stress. However, he referred me to a Neurologist.

    Since then I have been on at least 10 pain medications as well as a daily dose of Lamictal XR and have had no relief whatsoever. I’ve been through tons of tests: MRI, MRA, Catscan, EKG, bloodwork and a Lumbar Puncture, and everything came back normal. I was also told that I have TMJ and that sleeping with a bite splint would relieve my pain…which it did not.

    I am back at college now and am having a very difficult time with this constant pain. I wake up everyday with the same headache I fell asleep with. I struggle in my classes because my eyes get heavy and blurry when I have a severe headache and I get very sleepy. I have trouble concentrating and remembering things at my job because the pain gets in the way. On top of that I am constantly dizzy and fatigued during the day. And recently, my headaches have been disturbing my sleep schedule. It takes me longer to fall asleep and I feel like I’ve only gotten 4 hours of sleep when I really got 8.

    I stumbled on the diagnosis of NDPH because I was so frustrated with not getting any help with my pain. I have not officially been diagnosed but I fit all the symptoms and I have an appointment at the Headache Clinic in Ann Arbor in November.
    Until then I am just trying to make it through one day at a time. I really do feel like no one understands. I have very supportive and helpful family and a very understanding boyfriend.

    However whenever I complain about my pain and someone responds, “I know, It’s okay,” It takes everything in me not to get angry and explain that they definitely DON’T know…and they definitely don’t understand. But, I couldn’t do it without them.

    All things happen for a reason right? Maybe, whether I get diagnosed with NDPH or not, this is whole thing is just to make me stronger…

    • Hannah – As frustrating as it may sounds, welcome to the group that can understand your pain the best. I’d like to say it gets easier but if you’ve read above – some of us have been suffering for years. My neurologist is fairly certain that some people will just wake up and the pain will go away. I am patiently awaiting that day to come. In the meantime – we are all here to support each other during this stressful and uncompromising ordeal we deal with everyday…. You and every other NDPH suffer are in my thoughts.

    • Hi Hannah,
      I’m so sorry that you are going through this. It’s true that no one understands unless they’ve experienced it. Eventually, hopefully, you’l be able to let it go when people say insensitive things to you about it. (Though I’m still working on it! 🙂 ).
      This whole thing really will make you stronger. It’s amazing how much a person can learn to tolerate.
      It’s still difficult to work and focus, but as the years go by for me, I get better and better at working though it.
      Keep taking things one day at a time. In the beginning, I think it’s the only way to get through it.
      Let us know how things go at the Headache Clinic. If you have any questions, please don’t hesitate to ask or email me.
      Amy

    • Hi Hannah, I’m Anne. I’ve been going to MHNI for 9 months and haven’t had any releif yet. Just pills and nerve block injections, a few months of PT and big bills. I’m getting Botox on Wednesday and if that doesn’t have an effect, I’m considering spending my copay dollars (sometimes a couple hundred every month) on alternative therapies like acupuncture. I’m changing doctors at the next visit so perhaps the next doc I get has a new approach. Hope you’re having a low pain day, Anne

    • Sounds like you have NDPH. The thing thAt helps me fxn is Adderall xr. Adderall. Vyvanse. Then at the end of the day sometimes I give in and take a Percocet. To other people I could Be a druggy but I am not. I had never taken anything stronger than Advil pre-NDPH. For my general depression take Effexor and Deplin. I hate the adderall but it makes u functional. If u take it right when u get up it will somewhat mask the pain too. I have had NDPH for 7 years. I sometimes wonder if this is just normal but I can still remember what it feels like to not have a headache. No one shows u any mercy for longer than a day. No one can imagine what NDPH is like. The thing that really makes me happy is coming home to my puppy. He makes it all go away. At least for a while.

  19. Hi Hannah, my name is John. I live in Mankato, MN. I am 33 years old and I have had constant moderate to severe pain 24/7 for 23 years. I was diagnosed by the Mayo clinic back in 1988 (before NDPH was mainstream). I went to MHNI in Anne Arbor Michigian under Dr. Saper in 1998. I was in- patient for a month in Chelsea hospital. You have chosen one of, if not, the best places and the first thing theyprobably did was to wean you off of narcotics and stop all otc pills immediately and then educate you about rebound headaches. Dr. Saper discovered that connection years ago. It’s important for you to follow their advice because constantly increasing the level of your pain by overusing otc drugs will complicate the pain process and could make things worse down the road. Also, taking narcotic meds is a very bad idea because over time it actually increases your sensitivity to pain making it worse. It’s not the decreasing narcotic effect of the drug that I’m talking about but an actual change in brain chemistry caused by the narcotics.
    I can give you some tips on dealing with people. First, talking about the pain a lot is counter productive and very hard on yourself and your family. The idea is not to get people to completely understand…that is impossible and unrealistic. But you should be able to get validation that they are attempting to understand your situation and feelings. The best thing you can do is educate them. It works best to verbalize your pain and feelings, in an articulate and assertive manner. If someone “blows you off” understand that is normal and natural for most people not to comprehend severe, literally constant, pain. People are typically stuck in their own subjective reality and they project their life experiences onto others….since they are not in pain all the time, it becomes almost impossible for them to comprehend or remember that you are, especially when you are up and about and going to class or otherwise behaving normally.
    Think of a way to verbalize your feelings and state it to the appropriate people at the appropriate time and do it in a clear, direct and confident manner. I highly recommend keeping in touch with MHNI after your visit and using the doctors (in your area) that they recommend.
    BTW, Mayo clinic and MHNI believe my head pain was caused by accumulated head trauma. I never had any mental impairment beyond a mild concussion and whiplash but the brain is fragile and it’s enough to cause NDPH. There were several people with similar stories at MHNI as well as two people who got the pain after giving blood.
    Good luck.

  20. Oh, how sweet it is to be vindicated! Thank you Amy and I thank all of you, for your posts. I have not been diagnosed with NDPH rather just found out about it today after researching, yet again, unusual causes for SEVERE, CHRONIC, Headaches! My first one hit when I was 26 and lasted for 3 months. My second one came a few years later and lasted for 2 years, this last one hit over 7 years ago and it is still here. I am now almost 44, on depression medicine, anxiety pills and have had numerous tests and treatments done. The verve blocks made it worse, the botox did nothing…etc. I don’t know if I could be suffering from NDPH or something else, but it is so nice to prove to myself that I AM NOT CRAZY! The headache is not just “in my head”, which is the way other people (have seriously, no lie) worded it. The pain gets me so down sometimes, but it is worse when I feel that other people are judging me because of it. I am me. I am not a headache. Unfortunately, just like others, I even sometimes confuse the two. I have to stay strong and be thankful it is not cancer, it is not terminal. I need to remind myself often to count my blessings. But after suffering so long with this amount of pain and knowing that some doctors and even past friends have given up on me, it gets difficult. Please Amy, write that book!

    • I am back again and excited that I may have found my cure! I have started a blog also to help others like me, like all of us! headachesruvival.wordpress.com
      I encourage all of you to check it out as my answer may be yours as well!
      I still have my daily headache but the severity level has become much more doable! There is a major controversy in the medical field regarding Thyroid levels. Hyperethyroidsim has many symptoms, one can me a severe daily headache! My levels kept testing “normal.” However, I fought it after realizing how many other symptoms I had for hyperthyroidism. I am now with a endochronologist whe believes in treating the PATIIENT not the numbers!
      PLEASE…ALL OF YOU HAVE THIS CHECKED OUT! It might be your answer as well. Also please check out my sight as it can offer support to all of us. I welcome suggestions and comments! Thank you and God bless you all! Angie

  21. Just stumbled on this doing some research. 2nd of August 2009 was when it all began. I turn 18 on Sunday (24th of July) and my headache’s 2 year anniversary is not long after. I’ve been told it’s all in my head, depression, stress, anxiety. Because i generally do well at school easily (only way im kind of keeping up, with 40% attendance in my final year) i was told i was stressed and i should put less pressure on myself. Neurologist sent me to a psych, who i only saw to prove the neurologist wrong. The psych promptly told me it was not stress or anxiety or depression and that all things considering i was extremely mentally healthy, almost abnormally so. Neurologist still insists that it is stress and will stop as soon as i finish year 12. I have seen nearly 15 doctors/medical professionals (multiple GPs, paeditrician, paediatric neurologist, osteopath, physio/acupuncturist, psychologist, hypnotherapist and a whole lot more) been on countless medications and have not had a diagnosis. I do not think that NDPH is much known in Australia.
    On Friday my parents are dragging me back to the second (read: 10th) opinion doctor, and Mum’s pushing for an MRI. I’ve had a CT and my normal GP thinks that an MRI is not suitable. He has recently told me that he thinks it is something that the medical world simply doesn’t understand yet. It was a relief to have him say that he believes me, after being told so many times I’m making it up, or that i can’t possibly be telling the truth. It’s such an impossible thing to fathom. My parents don’t accept this answer and at the moment I am just so so tired of chasing for an answer, being poked and prodded, having to explain, and not being understood.
    I had a small amount of success with Topamax, until it both stopped working and made my lose nearly 15%of my bodyweight, when i never really had any to spare.
    It has flared up very badly in the past few months, and after a slightly better period of nearly 4 weeks it’s back at full throttle.
    If you have any questions, let me know.

  22. Hi Amy,
    My name is Amy too. I am sorry to say that is not all we have in common. This damn unremitting headache is so depressing.
    I got it on March 18 2008 when I was at the gym on an exercise bike. It started with an aura (which I had had a few times previously, with no monstrous headaches attached) and was followed by a terrible headache. It worsened and worsened until I was in agony 24/7. I won’t go into all the specific details because they are probably similar to everyone else. At this point I have tried:
    Topomax, Lexapro, beta blockers, calcium channel blockers, NSAID’s to beat the band, nerve blocks, botox, amitriptyline etc… I even went to Houston to the good doctors Perry and Blake and had Occipital Nerve Decompression surgery (Which helped, but did not cure). I have done acupuncture, cranial sacral, myofacial release, massage, chiropractics, dietary changes and I am sure I am forgetting a few things.
    The weather (changing barometric pressure) is the worst thing for me. Other than that, I live with a level 3 headache (Having done natural childbirth twice I use this scale conservatively) with a bi-weekly classic migraine. I have seen Dr. Elizabeth Loder, Dr. Carolyn Bernstein, and Dr. Todd Rozen. I am hoping Dr. Rozen, who I just began seeing in July will provide some extra help. My current drug regimine is: Flunarizine (cc blocker not available in the US), Salsalate, Wellbutrin, botox every 2 months.

    I also am the mother of two beautiful daughters, and after taking one year off work, I have been back about a year and a half. I am able to do much less than before. I have very little energy, and feel like I live with Morning sickness or altitude sickness…not so much the nausea but the full systemic response to SOMETHING BEING WRONG.
    I am both discouraged and trying so hard to stay positive. Your website helps. thanks. Amy

  23. Dear Amy,
    I just had a fascinating phone call with Dr. Shevel in South Africa. I am eager to speak to a fellow sufferer about what i am learning, and what I am considering doing. Would you ever talk to me on the phone??? 978.314.0373

  24. Post Partum Headache…..It has been a year for me since I developed NDPH. The headache started at 38 weeks of my pregnancy. They thought I had preclamsia…no it was just a migraine. Either way, I delivered via cesarean (my baby was breech) and continued life as a first time mom. I wanted desperetly to breastfeed so I did for about 7 months and during that time just took the occasional percocet for the pain. I thought it was going to stop. Soon I realized I wasn’t doing my daughter any good sleeping all the time and being in pain so I listened to neurologist and started seizure meds as a preventive. Now here I am 6 months later on 3 different epilespy meds and enough other drugs “to bring down an elephant” according to another doctor. I have decided to slowly wean myself and face the pain because I am in pain anyway. Last week I received my first round of “botox” injections and I have to admit I feel some relief. I will post and let everyone know if I feel more relief as it sets in more. The doc said it would take 2-3 weeks for full results. My hope is to continue to wean from drugs. First is the blood pressure meds, then the seizure meds, then the anti-depressant. I haven’t taken an NSAID in a month. The pain is always there though. I have found that DHE can help sometimes and the occassional muscle relaxer. Percocet makes life manageable but that’s addictive and not a full time option, only a rescue med. During this time I have felt like I have jumped into someone else’s body. To go through this post partum and not be able to work out and lose my baby weight has made me incredible depressed. I also want to have more children and don’t know how I can do that with extra weight on my frame or with this condition. All I know is somehow I need to get off of these meds and lose 20 lbs. I know this could all be hormone related but any stories of people going through pregnancies with NPDH would be comforting. I feel like I’ve started to live in fear, fear of pain. I know that I know what the worst feels like so I know I should move forward. I’m also praying that the botox injections will give me some relief for the next few months. I am trying to act like my old self and pretend like the pain isn’t there and at the same time not overdo it. I have faith that this is not a permanent condition. I am glad a found this site. I have read all of your stories a bunch before I chose to share my own. I have been in too much emotional pain to share but now I am ready, ready to move forward, accept my condition and hope for the best.

    • Hi everyone, a follow up- I’m going to put this post in two places since I sort of started to mention it on another thread. Basically, I have tried all sorts of medications and IV’s, ect. had every test done…I went to my neurologist two weeks ago and told him the only thing that gives me any “relief” is the occasional percocet, which is not a daily option. But I couldn’t continue living in this fashion. I hadn’t left my house in 3 weeks. He put me on tramadol, 50 mg, two tablets three times a day. Would I say I’m totally better, no. Would I say my quality of life has increased dramatically- YES. I have been out every day. I can drive and not be drowsy. I know this is an addictive medication and it’s “tricking” my brain into thinking it’s not in pain. Basically, my plan is to wean from all other meds, work off the 20 lb extra lbs of baby weight and hopefully wean from this drug so I can get pregnant again. Some days, it is like NDPH never happened to me. I just felt like I needed to reach out and tell you all about my positive experience.

  25. I have just been diagnosed with NDPH by my neurologist, but we are still looking for a lesion just in case, and I think I may be one of the few people who actually want a brain lesion, just so I have a cause of action. I have only had this headache for 53 days now (it began on April Fool’s Day, which is a source of amusement for everyone but me, apparently). Reading all your posts just makes me cry in despair, I can’t deal with this for another month, let alone a year, 5 years or a decade! I have had to suspend my university classes as I can’t even leave the house most of the time, and studying has now become the most excruciating task I set out to do. Even reading this, I feel like someone is crushing my eyeballs, and I have the screen dimmed all the way down. I have had some success with endep, but it makes me sleep for about 17 hours a day, and about 5 of my awake hours I only have a pain level of a 4 or 5, but after that it’s invariably 7-8.

    Do any of you get vision problems when it gets bad, accompanied with very severe tinnitus? I went to an ophthalmologist and after they shon their torch in my eye I immediately went to an 8 and couldn’t see on my left side. I can’t think properly anymore and I’m so angry and exhausted.

    I hate the way everyone around me treats this as though it’s no big deal. It’s ruining my life.

  26. Hi there, I feel so bad hearing you go through this. Your sound exactly like me about 5 months ago. I went into despair and thought that everyday I woke up with the headache was another failure. I am now being treated with tramadol and methylergonovine and am doing about 70% better. My pain definitely escalates during the day, but through knowing my body and reaching out to a support system, I am doing much better. I also see a chronic pain pyschologist to help me deal with all the stress this causes as well as working on biofeedback (which has helped immensely as well). For some reason accepting my condition and acknowledging that I am sick has helped in someway, now I look forward to the good days. I still get very frustrated and look at healthy people and wonder what it is like to wake up and feel fine. Just this past weekend my husband and I took a trip to my hometown, which is a 5 hour drive, and we had to pull over often for me to vomit. Somehow though, I have found a way to keep living. Keep working with your neurologist. There is hope, people do get better from this, they just aren’t on here writing because they are out being healthy. Lucky ducks.

    • Thanks Strongcook, it has been 5 months now and I am doing a lot better. I have quit caffeine, cut alcohol, dairy and fun from my life as well as taking Lyrica for neuropathic pain. I inject myself with B vitamins and get intravenous C as well as taking a load of supplements (magnesium, Sam-E and Keto DHEA 7). My doctor seems to think it’s connected to my thyroid, so we’re working on fixing that. It is very expensive trying to be healthy. I still get headaches and it makes it really hard to study, but I am managing a lot better than I was, but it is frustrating how much work goes into being at this level, which still isn’t really that healthy. I am just learning to pretend it’s not there.

  27. My name is Shawna and I have been diagnosed with NPDH after dealing with the possibilities of sinusitis, migraine, and being crazy. I am only 28 and have been married for almost 3 years. Like most people with NPDH I know exactly when this started (June 25, 2011). My headache came on suddenly after I was down with fever for two days. I am fortunate in some aspects. After reading some stories about this disorder I realize that my pain is not as great as some who suffer and I am still able to make it through work and school. However, no matter what your pain level, having a headache of any magnitude day in and day out from the time you wake up to the time you fall asleep can put a burden on anyone’s life. I have seen too many doctors to count and though most have given me the diagnosis of NPDH due to lack of anything else, others have came up with their own ideas. I tried nearly every migraine medication under the sun until I fired my first neurologist. My second one was the first to bring up NPDH. Injections, pills, nerve blocks, emergency room trips, chiropractor, massage therapy….. no cure yet. To date, I am on enough medication to bring down a horse and that’s just so I can make it through the day without cutting my head off. I have seen Neurologists who specialize in headache, but it soon becomes apparent that they know mostly of migraines. I’m sure that most of you can relate to this. My biggest pet peeve is when my “concerned” friends or medical professionals ask me “So, how are your headaches?” I want to smack them, but instead fight back the tears and let them know that I do not have headaches rather one headache that has lasted 368 days and counting. No one understands this. I would gladly trade a 4 hour long migraine a few days a month for this. The truth is, I’m scared. I’m supposed to start nursing school in 2 months and I don’t know what else to do. Who wants to have a nurse who has to be drugged up just to get through the day? I wouldn’t wish this on anyone.

  28. My name is Connor and I’m only 16. I was diagnosed with NDPH sometime in April. Unlike many people who know the exact date their aches started, I’m not sure of mine. I always had fairly frequent headaches for as long as I can remember, and one day after a string of them every day my mom decided to take me to the ER. We were referred to the pediatrics and then to a neurologist etc until I reached today. I had a check up appointment with the neurologist today and today is the date we’ve given up on the first medication. I’m switching from Gabapentin to something else (I actually forget what it’s called right now, amatriptamine or something like that?). I haven’t told anybody but I am honestly unsure as to whether or not I really have NDPH. I do have daily headaches, and I have had an MRI that showed there was nothing physically wrong with me, but I’ve also never had an extremely debilitating headache that lasted for more than a day like many people have been saying happens to them. Reading these stories about how they’ve had this for years really scares me, but I think that if I do have NDPH I need to accept it and can’t be scared because it will happen regardless.

  29. Hi Amy,
    I’m so glad to have found this site. My name is Nichole and I am almost 23 years old, I have suffered with NDPH since I was 16. I was a Sophomore in high school, it was near the end of 2006 when I got sick with bronchitis and the flu and coughed and coughed and noticed I had a really terrible headache with it. Once the sickness went away I noticed that the migraine, that pain in my head that had been so foreign to me prior to this, had not gone away, and still has not to this day… I had to be home schooled and quit all of my sports I was a part of… My ”friends” went on with their lives and forgot about me while I had a constant 24/7 pain that I could not get rid of no matter how hard I tried or how much it killed me, physically and mentally. We began with Chiropractors, decompression machines, adjustments, etc. I traveled hours to probably 20 different Chiropractors that all said that they knew what I had and exactly how to treat it. I’ve tried natural supplements, over the counter medications, 6 Occipital nerve blocks in the back of my head, massage, diets of no wheat, no gluten, no sugar, vegan only, all with no progress. I have never been an alcohol, pop, or coffee drinker. My family understands the pain and how I can be ”ok” one minute but then pick up something slightly too heavy, walk a little too fast, sit down a little too hard and I will have to be in my room with blankets over my windows and absolutely no sound because the pain is so unbearable. But it is hard to explain to other people. I try to never talk about it but when I do it is so frustrating because I feel like a burden… Like ok you have a headache so what? Why can’t you stay out late or get up early or work long shifts or run around and be active? But it is so much more than a headache… It’s become a way of life and although I think I handle it well I know that deep down I am depressed and deeply saddened by it because anytime I stop to think about it or talk to anyone about it I cry instantly. NDPH has altered my life drastically, I can’t work as much, I can’t run around and just be free, I can’t take a full load of classes at a time… Basically I just want to thank you for having this site Amy, it is really more helpful than you know, just knowing that I’m not the only one to suffer from this and that I’m not the only one that has this pain to think about every single second of every day…
    Bless you and bless all your readers, may you all find relief from the pain –
    Nichole
    silentlaughter2486@gmail.com

  30. Hi Everyone- I haven’t posted in a while. I have spent the past 20 months dealing with my NDPH and have had many highs and lows. I am finally going to a migraine clinic- Jefferson Headache Clinic in Philedelphia and was blessed that something opened up tomorrow instead of March when my appointment originally was scheduled. We drove 6 hours and I am excited about a new take but also catious because I have learned to stop putting all my hopes into these apt’s because of past failures. Has anyone gone to this clinic. I just read about someone getting a “occipital nerve stimulator” and it stopping their headaches/migraines at this clinic and then googled it. I can’t believe I never heard of it, and trust me I have tried EVERYTHING short of cutting my head off and spent 10 of the 20 mos on the internet trying to solve this issue. Has anyone had this done? Know cost or coverage by insurance? I am going to beg for this tomorrow.

  31. My name is Stacey and I am the mother to three daughters–one of whom has been suffering in agony since November 19th. Yes, we know the date. She woke up that morning with an intense migraine and it has yet to go away. Sound and light sensitivity started to kick in. Nausea. And then the visual disturbances (blurred vision) that came and went. She went to the ER twice to get IV medication and have a CT scan done before seeing a neurologist who ordered blood tests, a MRI, full eye exam (with dilation) and neurological exams. She passed all with flying colors. That’s good and bad news, isn’t it? The neurologist is now considering the diagnosis of NDPH. She is turning 15 next month. Oh and did I mention that last year, after simply tweaking her foot while wearing high heels to a wedding, she was diagnosed with RSD/CRPS? She was in unbearable pain for 6 months before intense physical therapy put her into remission. She has suffered headaches from time to time but for a blissful 3 months, she had almost no pain in her head or her foot (her sight of the RSD flare up) and now? Now for 7 weeks, she has had non stop unspeakable pain in her head. Her RSD flare up-IE the worst pain of her life–is her pain scale for this headache. A good day now is a level 6 to 7. Level 9 and she has a hard time even forming thoughts. And yet this girl is maintaining honor roll in all of her honors high school courses, volunteers, runs 2 miles at a time and is active in her school’s drama club. Needless to say, she is my hero. No one else in this house could deal with what she does, keep on going and be so optimistic.

    She has been on about every medication you could think of–all of which she hated. She loathes medication. I can count on one hand the number of times she took meds for even her RSD flare up. She even did a round of steroids to now effect and now is on Topamax but her dr has said she can forgo that if she’d like and try more natural options like B2 and acupuncture.

    I just stumbled upon your website tonight and want to thank you in advance for all the information I know I am about to get from it.

    Best Wishes,

    Stacey

  32. Hi, this isn’t the first time I’ve read some of the posts on this blog but I’m back again…maybe it’s because my headache(s) are persistently worse again and it’s somehow helpful to read other people’s posts and be saying YES! I know what he/she means! No, I haven’t been diagnosed with NDPH but from how you describe it, it sounds very probable that could be me….. Drugs, pain meds….my headache seems to laugh them off. I have been to a variety of doctors and chiropractors and know what it’s like to face the feeling of…”I’m not going back there, that doctor doesn’t know what to do with me, except to recommend another ‘useless’ drug! I have, thankfully, met some doctors who are understanding and LISTEN better and really try…bless their hearts! I’ve tried eating different, staying away from some foods known to make headaches…or have ingredients like MSG. Still…the pain goes on. I can never tell when it will get worse. Perhaps there is some social event I want to attend and only hours before…groan…perhaps some tears as I realize..it’s out of the question. It’s not worth the extra effort to hide the pain and be ‘normal’ to the crowd who has no idea what you’re dealing with. I’m better off in my easy chair! My journey began nearly 3 years ago. The same day I started with the headaches, I also got sick. Doctors wanted to treat me for sinus infection. The journey has been by no means easy…especially when I feel really rough and my emotions are shot! Were it not for some caring friends who let me vent again and again and don’t let me say I’m crazy!….family that cares….and most of all a God who gives me a strength not my own… I don’t know how I could have come this far!!!

  33. Well, I’ve tried a lot and I’m wondering what everyone is doing as far as diet that is helping. I tried the elimination diet at one point and also the low tyramine (or everything having to be fresh) diet. Any other suggestions. Medication isn’t helping yet except for lidocaine and dhe infusions and those are too far from home. I’ve had NDPH for 4 yrs nonstop.

  34. 2nd week of July 2012. Seems like I’m one of the “lucky” guys around all you gals. So it’s been abt 8 months. After awhile, you stop counting. I’ve tried the basics, noretriptyline, amitriptyline, lamictal, neurontin etc. current cocktail 1mg klonopin, 75 mg of topamax and 15 mg remeron.
    I guess I should be considered a blessed ndph’er. I walk around with a level 2-3 most of the time. I have no trouble sleeping, I go to work, in the gym 4 days a week. Still this is no way to live life. My depression and anxiety are taking over. I started to isolate my neck and shoulders from the pain and tension. My home life is becoming stressful mess.

    I just can’t believe in 2013, with all science and technology we have, all the power and knowledge we can harness as a human race, no one can fix this or even has a definitive idea of how we all have acquired it. Just boggles my mind.

  35. Hey, everyone, read this: http://www.hemicraniacontinua.com/ My teen just started on the indomethacin (after going on a bad downward spiral 2 weeks after Botox by pediatric neurologist ) and it seems to be working!!!!! We had tried all those other meds for 2 years, got nothing but bad side-effects. Also doing hypnotherapy from man who did this 14-hr course http://www.hypnosis.edu/distance/ and encouraged me to learn so I can help my son but I haven’t tried it yet. Hope it helps others. Will let you know how he does in coming weeks.

    • still using indomethacin, but only to keep pain down a bit, it’s no cure; scheduled for ketamine infusion – anyone know about that?

      • Susan, I haven’t personally had a ketamine infusion but have been with people who are on it IV (I work in a hospital). Many do well but others have very scary hallucinations. Just something to watch out for.

  36. The day was October 15, 2010. I decided that I would quit smoking, as a mother of 2 small children, I thought it was the best thing for me and for them. That day was the first day of the agonizing headaches I have fought ever since. It came on all of a sudden, me thinking it was nicotine withdrawal, I ignored the terrible pain in my head, over my eyes, and down the right part of the back of my head. I was told it would go away. The dizziness from the pain, and feeling out of it all the time sent me into a depression that no one could see. I must be happy, for my kids, my husband. How can such a happy person, be ruined by something so simple, a headache, from the moment I wake up till the time I go to bed, even in the middle of the night, if I wake up, it’s there, throbbing, making my head spin. My family is supportive, but they think it’s stress, being a Mom, it will get better, stop worrying they would say, you need to relax. After several months, I finally went to my GP, since then have been through every specialist you can imagine. 3 MRI’s, Cat Scans, a sinus surgery for terrible Sinusitis that was promised to cure this terrible daily headache that I suffer from. 6 months after the surgery, and numerous times of the surgeon saying there is nothing we can do, back to my GP. They state that it’s nerve damage from the surgery (I knew it wasn’t because its the same pain I had before the surgery) and that I should go on pain management pills. But the pills cause other side effects, make you sleepy, possibly seizures, so I refuse. I have tried garlic, steam, massage, acupuncture, exercise, gluten free, dairy free, every holistic thing you can imagine, nothing helps. I finally see a Neurologist. He suggests another MRI, and there he finds, nothing. No migraine symptoms, just a healthy brain. He suggest that I stop taking Advil, as I take about 8 a day, it could be a rebound headache, you get from taking Advil every day just so I can deal with my life, the kids, work. I stop talking it, and within a few days my headaches subside. I went 4 weeks without a headache in December. It was like heaven on earth. The fog had lifted, and I was so happy to have my life back. My first Christmas in years, I celebrated as a whole person, it was wonderful. After New Years, I could feel it coming back, even when it’s not there, it’s there. You all understand. That light ache that is in your head. I have now had a headache for 3 months, some days are 3’s (out of 1-10) today is a 9, I can hardly think, sitting at my desk at work. My neurologist states he is now convinced its NDPH. I am happy to at least know I have a name for this damn headache, and that you can’t die from it, though some days I do feel like I might. What can you do for it, he says there really is nothing. He want’s to prescribe the medicines that treat migraines, maybe that will help. I refuse, as I have read that it really does nothing for this disease. So I pray every night that I will have another month or two, without this headache, to be normal, for my kids, for my husband, it seems to ruin most days, and that is not fair. Trying to pretend to be normal is the most tiresome thing, no one can see this NDPH. If you mention it, they all have a answer, a cure to try, but we all know they don’t work. I appreciate being able to tell my story on here, as it most times feels like your the only one in the world with this NDPH. I pray we all find a cure, soon. This is no way to live life.

  37. Hi Everyone –

    I was diagnosed with NPDH by a neurologist and suffered with it for half a year. She prescribed Propranolol (sp?) which she explained as a BETA blocker. But I wasn’t satisfied with her explanation of how it would (or wouldn’t work) and it just seemed like it wasn’t a cure, which is what I wanted.

    I figured it had something to do with my diet and started to read about ‘triggers’ for migrains. After not that much experimenting around I settled on the combination that worked for me and it quickly reduced the headaches to zero in about three days – I gave up caffeine and alcohol. Because I understand the ‘inner feelings’ of my body I suspect it was the alcohol that was the main culprit.

    I’ve always been able to drink and have had a glass or two of wine or booze, in the evenings, wind-down time, never to excess, for the past 15 years. (I’m 52 now.) It was a pleasant routine. I think somehow this year I simply hit my ‘life quantum’ of alcohol consumption. It was hard to give up but getting rid of the headaches was worth it. Plus I sleep better and look better and think better…

    I switched to decaf at the same time.

    It’s been four months now completely NPDH free. I’ve had a couple sips of regular coffee and champagne since but that hasn’t thwarted my cure.

    I hope this helps.

    Sincerely,
    FSM
    Del Mar, CA

  38. I’ve posted before on here, but just an update. I had the botox 4 weeks ago. At first (after three days) I had 5 PAIN FREE days in a row. I was so happy. I woke up before my alarm went off, I had energy, I thought I was on to something. Then they came back. I’m back to having 7/8 pain daily, but I wouldn’t trade those 5 days for anything. They were the only pain free days in the 12 years since the headaches started. The clinic says the treatments haven’t historically been covered by insurance, so I’m bracing for that bill and the appeal I’m planning. I changed neurologists and I am emotionally preparing for an inpatient stay for facet nerve blocks, DHE infusions as well as a spinal tap for additional diagnostics. Has anyone else had these treatments? I feel like any time I walk into the clinic, I’m going to cry just because I’m going to be given something else, some pill, some painful treatment that isn’t going to work all over again.

    • Hi Anne- so glad you got some relief. I have been getting botox regularly for almost a year now, and each time it works a little more. I know it’s working too because the severity of the headache increases as it wears off. ALSO, in Dec. I went to “The Headache Clinic” in Philadelphia, where they admitted me for an entire week. It was only migrainers in there so it was very quiet and I had my own room and nurses/doctors who knew how to treat any kind of head pain. While I was there the just continuously pumped lidocaine, dhe, Benadryl and then a few different migraine meds continuously through a “pic line” (like an IV) into my arm. Ever since then, I have not been headache free but the severity has gone from a 6-8 everyday to a 1-3 and I’m even slowly going off of my meds. My insurance covered everything and I have even been granted disability for my condition. If your worried about $, you should try for disability too- we deserve it after having countless drugs, injections, shots, mris, ect. ect. As long as you have documented that you have tried lots of options your insurance should cover botox and a hospital stay if you want to do that. Not sure where you are but I know of another headache clinic in Chicago and one in Missouri (I think…). I think after 12 years of suffering you deserve to try out a new approach. I’m over 2 years in and wish I had gone to the hospital sooner, it was a whole different ballgame. Oh, and yes I also did the spinal tap- it made me feel better even though my levels weren’t high- it was probably because I got to lay for two days while people took care of me 🙂 I’ve had occipital nerve blocks done and to me those are horrible and make my headache worse. Weight some options, talk with your insurance, and perhaps look into disability. I just think we can’t sit around and wait to get better, we have to take charge because I totally know the feeling of putting all my hope into something and then it not working. One last thing, you don’t need a referral for Jefferson Hos. in Philly- I thought you did. It’s a long wait so call sooner than later if you want to go that route. And if botox helped the first time, it will just keep getting better. I’m still sick, but I’m no longer scared the way I used to be. Hope I helped perhaps a bit. Best of luck. Below is a link to the hospital: http://www.jefferson.edu/jmc/departments/neurology/programs/headache.html

  39. Thanks for the info 🙂 I definitely need to take this on more than just an appointment every two months armed with some new prescriptions. I agree the occipital nerve blocks were terrible. I’m not yet to the point where I want to consider disability. I’m only 32 and in all honesty, going to work is the best thing for me some days. At home no one cares if the laundry doesn’t get done, etc., but when I’m working I’m accountable to and for people, so its a distraction. At home I tend to lay down and there’s nothing to distract me from hurting. I know being totally pain free isn’t likely, I just want some semblance of my life back.

  40. Hi everyone,

    I have only just stumbled across this blog. I am 34 and have had chronic daily headache for 10 &1/2 years – from reading all your posts I think I have NDPH although I had never before heard that term. Like you’ve all said I can remember the exact day it began & how. I was in the 3rd year of my marriage and we were due to fly home to South Australia from a holiday in Queensland. I was struck down with a migraine & bed bound for a fortnight. Since that day I have had chronic daily headache. It has never left. I like everyone else searched everywhere for answers…mri/ct scans, chiro, dental, acupuncture, massage, naturopath, pain management clinic etc etc etc!! with no results. The neurologist admitted me to hospital for a week on a lignocaine drip which did nothing! I suppose after all that searching I became despondent & just gave up for quite a long time.

    I am very sad to say that it has worn me down in ways I never thought possible. I have been in severe depressions & have to this day a major anxiety disorder which in turn has led to alcohol & prescription drug problems over the last 5 years or so. I have not heard one other person mention any substance abuse issues – I’m not sure if this is due to embarrassment or just proves that I’m as weak as I feel. If there are any others out there please let me know. I am religious and never, ever would have thought that I would become an ‘alcoholic’ or addict. It’s extremely unaccepted in my social circle – need I say more…

    I so relate to your frustration & venting. NO ONE understands… My family (parents/sisters) are very supportive, but they don’t know the half of what I (& all of us) go through. The most frustrating thing is that I don’t look very sick, unless I have a migraine which I also suffer from. I think that most people, my husband included, just FORGET that I have a headache 24/7 and I hate the pressure of not “coping” like everyone else can….Only others who are experiencing this awful cursed ‘disease’ know how hard – how frigging draining and debilitating it is! I have zero energy which makes life difficult with an active 3 yr old. I would give anything for it to be taken away or even swapped to another part of my body.

    Of course this has affected my marriage…and due to my issues with alcohol & prescription drugs I am now on my last chance. My husbands ultimatum is that I never ever again have any alcohol or strong pain medication which really scares me. A lifetime ahead of constant severe headache with no relief is terrifying….I honestly don’t know if I’m strong enough. At the moment I am only on cymbalta for anxiety & using immigran for migraines & life sucks. I am not able to work at the moment because of the pain, anxiety & not being able to be totally reliable.

    I have recently tried botox which I think may have helped slightly with the degree of the pain but only for a few weeks, not the whole 3 months. I am hearing people talk of medications that I have not heard of before but I live in Australia. Reading all of these comments however has made me resolved to start searching again… I don’t want to give up hope that there’s an answer (but I’m also terrified of being disappointed all over again).

    Sorry for the ranting & raving but if anyone’s going to understand it’ll be you guys.

    Thank you Amy for this blog….it may very well be my lifeline!

    Fi

    • Hi Fi,

      Let me just say firstly that you’re not weak, you’re just run down. Being constantly in pain with no one around to understand takes its toll. Hearing your story makes me want to cry, as I can’t bear the thought of having a headache for a decade, and I think that I would struggle with substance abuse if my headache went for ten years too.

      I have had a headache since April 1st last year and have tried almost everything. I was on propranolol, oxycodone, cymbalta, endep and neurontin, all having little relief. My doctor has me take magnesium and vitamins B, C and D, as well as Lyrica 150mg twice a day and that seems to have helped, although I am still in pain all the time, and sometimes I have migraine-like headaches too. It hasn’t “cured” me, but it has taken my pain level down from an 8 to usually a 2 or 3. If you haven’t tried Lyrica, I suggest you try it out, as it’s been the only drug to help me without putting me to sleep for 16 hours a day. Lyrica has now been put on the Medicare PBS, so it’s not as expensive if you get it prescribed for neuropathic pain.

      I suggest you try to cut down on the alcohol and heavy pain killers, as they will only be making the depression that comes with chronic pain worse. I’m going to see a psychiatrist this week to try and deal with the depression and anxiety that comes with being constantly in pain, and I’ll probably get prescribed an antidepressant/anxiety drug to try and stabilise my moods. This might be a good idea for you too, I understand you’re already on Cymbalta, but you may need a higher dosage, or something on top of it. I have cut down on alcohol significantly (instead of 3 times a week, I now drink maybe once a month) and quit smoking. I have also cut out caffeine, wheat and dairy as well as reduced my sugar intake. All this has helped to feel less lethargic and run down, and though I still have a headache 24/7, the increase in energy definitely brings my spirits up. Exercise as well, light weights or yoga seems to be helpful, once or twice a week.

      I hope this is of some help.

      Kaylie.

    • Hi Fi,

      I read your post as I was going to sleep last night and it broke my heart. I have been in the same boat as you for the past two years since the birth of my daughter. I totally feel the “not looking sick” thing but for me it’s really hard because I cannot exercise and get the babyweight off especially with all the meds, so I am now 40 lbs overweight. Even if I have a good day, when I look in the mirror, I don’t see me. I just gained disability so I’m going to get a personal trainer and am also weaning from my meds without my doctor’s blessing. I want to see what’s under all the pharmaceuticals and give my body a chance to heal and I also want to have another child.

      I also hear you on the substance abuse issue. Before I had my daughter I used to drink heavily- I was brought up by drinkers and just didn’t think twice about having 2-3 glasses a night. Now the only time I drink is when I run out of meds, which is bad in and of itself too. I used to take oxycodone on a regular basis but then I did a week at the Jefferson Headache Clinic in Philly where they officially weaned me and I have to admit that I am doing much better with out it. I used to be on a pain scale of 7-9 everyday, I went to a very dark place….I felt like I was a burden on my family and they would be better off without me. In the hospital, I was flagged as being suicidal, which I never thought I was. It shocked me how bad I was, and how my attitude was perceived from others. They must have been so frightened for me.

      Now I am on a 1-3 level everyday and as I said, weaning on meds. My old neurologist dropped me bc I missed 2 apts. in a row, so I haven’t got the botox which helps so much and am getting no real advice, and am actually doing better than when he was coaching me- ha. I additionally see a psychiatrist who specializes in chronic pain. So right now I am coming off of Wellbutrin and Cymbalta and am on Nuycnta, which is where the substance abuse comes in. It won’t get you high if you take it as prescribed but I often take more than I should to numb myself from the struggle I have had for the past 2 years. My husband realized when I was taking too much oxycodone and I have never been more ashamed of myself. I am trying my hardest to take it as prescribed so I don’t have to live with this extra demon. I need to prove to myself that I can overcome the pain, but like you said, no one gets it. Thank you for bringing this issue up, I couldn’t imagine 10 year like this.

      I highly suggest you do what you can to move past drinking and narcotics. Easier said than done, I know. Your at war right now, truly. We all are. After my husband saw how much oxy I was taking, I “turned” myself in to my primary and was honest about everything and he helped me. I plan on ditching the nuycnta as soon as I am done getting off of these drugs. I meet with a new neurologist this week and I know I’ll get a raised eyebrow about it. Tramadol is good too, you will not get a high from it, but it’s not as strong.

      I could write about this forever but I have to get my daughter to gymnastics. Please feel free to write me back- I admire your honesty and you need to know your not a lone. You do have a lot at stake right now which is why it is so important to take care of yourself.

  41. Hi everyone,

    As others have said before, I’m saddened to see that so many other people are going through what I’m going through as well. I’ve had a constant headache since September 2012. It started with a tingling sensation on the back of my head and then I had a fever for about a week with terrible head pain. I went to the ER and they did a spinal tap (that was fun, not) and I’ve still had the same headache since then. I’m being retested for Lyme disease and I’m honestly hoping it comes back positive, so I can have a conclusive answer and fight it. I went up to the Mayo Clinic a few months ago and they said I have NDPH and told me to take anti-depressants and see where I’m at in 6 months. Well, here I am, not feeling any better.

    I would do anything to feel normal again and to have all you feel normal again. Everyday is a struggle, but what else can we do other than persevere each day? Be strong and never give up. I will keep you all in my prayers.

    God Bless,

    Tim

  42. you’re not alone, Fi. Sometimes, a couple extra drinks you think will numb the pain, but for me it just makes it worse and I end up sobbing because I’m hurting so badly. Almost want to make the whole thing go away. The depression and anxiety that go along with it (am I doing enough? Am I carrying my weight at work? am I talking about my headache too much? Are my friends and family getting tired of the word? Am I going to lose my friends because I don’t like going out??? and on and on and on). I have a remarkable network of people who are pulling for me and are helping me through this. I’ve had NDPH for 11 years and have really taken it by the horns in the last year. Its almost as if they’re getting worse now that I’m paying more attention to them. Keep up the fight. The more of us they see, the more they’ll know about what we have. I’m going in for a one week hospitalization in a couple days. I had my pre-admit meeting today to review the plan of care. I had to trust that they’re going to be “throwing the kitchen sink at me” (the doc’s words) and that they’ll know what worked and what didn’t. Take care of yourself first, and let the people who love you take care of you, too.

  43. hey Amy, I came across your blog and i think it’s wonderful! I’d like to share my medical story with you and I’m hoping that you or perhaps some other veteran NDPHers will be able to help me in some way.

    I am a pre-med student that has had to withdraw from college and almost all other activities because of the chronic pain I’ve endured over the last 3 years. The pain is unrelenting and has brought my life to a screeching halt.

    The pain I experience is a non-stop, bilateral, dull, aching soreness in my eyes and in my forehead. It is not throbbing, or sharp, or pulsating. It is a static, steady ache. When different specialists have asked me about my “headaches” I always respond that I don’t have “headaches”. Rather, I’ve had one long continuous headache that has lasted 3 years.

    I reside in Texas and I’ve traveled all over America to see many excellent physicians across the various specialties who have done careful evaluations. Unfortunately, despite all of these efforts, my diagnosis remains in doubt by many and none of the medical or surgical treatments have alleviated the pain I experience.

    My father (a physician) and I have created a website that contains my full medical information, including imaging reports, pictures from my surgeries, and various medical articles we’ve pulled over the years.

    there is a lot of information on the website, but if you’re willing to read through my medical history, you may have a better understanding of what I’ve gone through the past 3 years, what meds I’ve been prescribed, what surgeries I’ve undergone, etc

    here is the link: https://sites.google.com/site/pleasehelpmyson99/

    I’d be so very grateful for any kind of helpful suggestion, recommendation, or referral.

    thank you in advance for your time and consideration

    my email: medstudent29@gmail.com

    sincerely,
    Austin

  44. Wow- Austin, my heart breaks for you even as I’m going through the same thing. I always say, thank god this happened after I had some accomplishments (college, grad school, married w/a daughter)..I’m 29 and have had a continuous headache for 2 years. I’m sorry you had to leave college- I know how hard this on you socially too. I have seen a psychiatrist on and off who specializes in chronic pain and that has helped the most actually…I highly suggest. I do have to say that I’m do 70% better than I was doing a year ago, and am trying to drop all meds to see who lays under the pharmaceuticals….it’s been a rough past two weeks. I hope you find some relief and will keep an eye on your website…I can barely look at it even though I’ve been through most of what you have. If you ever need someone to talk to my email KristenASWhite@gmail.com. Good luck.
    Kristen

  45. Kristen, thank you for your kind words. I just wanted to say how deeply thankful and grateful I am that you read through my case and sent me this thoughtful message. I’m sorry to hear that you’ve been suffering with the same horrible condition for so long. I’m blessed to have a long, supportive, and very understanding family and they’ve helped my emotionally a great deal. Again, thanks for reaching out to me and I wish you all the best

  46. Hellooo
    I’m Kelly I’m 20 and I’ve recently been diagnosed with NDPH. It came on last march in my right eye and hasn’t gone away for a second in 14 months. It’s now spread all over my head and is getting progressively worse. Ive had a MRI and CT scan of my head and everything is clear. Thank god:) but that doesn’t make this any easier. I’m living for the day I wake up and the pain has disappeared. Ive been to doctor to doctor and have been given different treatment including botox, acupuncture different tablets (topomax, amitriptyline, high dose ibrufen and aspirin, gabapentin) nothing seems to be workings for me. I also suffer with alot of face pain and this only started in December. After going to a London neurologist he didn’t see anything abnormal with my face pain and said it was rare but some people with NDPH complain of face pain but it is just referred pain branching off other trigger points. For months I’ve been stretching my face and it’s been clicking my mother noticing that this shouldn’t be happening searches the Internet and found out about TMJ. We then went to the dentist which we have been to before but not for my specific jaw pain and he has now diagnosed me with TMJ. He seems to think since having my migraines I’ve become stressed and in the nights when I’m sleeping Ive started grinding my teeth and I have caused a disfunction in my jaw. I’ve now been fitting with a splint so hopefully that will take some of my pain away and will make life easier for me to live with. I’m going back up to the neurologist in July and I’m going to ask him about the injection indomethacin has anyone tried this injection? If so have they had any relief from it? Thanks 🙂

  47. Hi Kelly, my teen gets some relief from daily indomethacin 75 MG ER capsule but never tried the injection. He tried all the treatments you listed and none helped him, either. Well, accupuncture may have helped a bit, but hypnosis clearly helps immediately, so I suggest you try that. Also, I read that face pain can be referred from the neck (I suffered from neck pain for years and at times had eye and tooth pain, but when the neck pain was cured, I no longer had eye or tooth pain.) Wishing you the best in finding help soon.

    • Thank you Susan ill have to go back to my gp and see if he allows me on that medication along with the ones I’m on at the moment. On a few and been turned down a few times when someone has suggested one. But will definitely try it once my trial on these tablets are over! I have been to a few physios and chiropractors over the last 14 months as I suffer from back/shoulder and neck pain but I’m a hairdresser and always put it down to my job. I have another appointment in two days with a Physio so ill just have to see what she says on Monday. Thank you for getting back to me:)

  48. Kelly, my son has gotten trigger point injections (of lidocaine plus an anti-inflammatory) in his upper shoulders for pain relief from the tightness. Have you tried that? if you do, we have been told that daily gentle stretching/exercising necessary to keep the muscle knots away. Susan

    • Hiya Susan no I havnt who do I get these from? Physios? Or pain clinic? I will ask the Physio on Monday about the stretching for my knots thank you:) im sorry that your son suffers from migraines. Has he ever said that when he has his trigger point pressed on does his head pain increase?

  49. Hi All– I recently had a 6 day in patient stay at a pain clinic affiliated with my neuro/pain office. While there, I had DHE infusions, magnesium infusions and a rapid fire of other meds to see what helps. I’m now on a daily regimen of meds. While there, I had facet nerve blocks and C2 blocks. The facet nerve blocks were hopeful, I was down a few notches while the lidocaine was working. The C2 was not effective. I have to do another diagnostic of the facet nerve blocks before they go in and do the real thing. The botox didn’t help me much, but am going to give the new meds a try. I had to advocate to not be on so many since they left me feeling really disconnected and emotionally labile. Has anyone else had the nerve blocks?

  50. Woke up with a headache August 4, 2012. Had a history of headache and migraine before that though, so no one would call it NDPH. Lost my job, had to move back to my parent’s house in my old hometown. I was/am in constant, debilitating pain. Did a 5 day stay with Baylor Headache Clinic in Dallas for DHE. Had Lidocaine, Ketamine, all kinds of infusions with Dr. Krusz at Anodyne Headache. Severely in debt. On a whim, went to a LLMD to get tested for Lyme. Sure enough. I tested positive for that and a clinical diagnosis of co-infection Bartonella. I’ve only been on antibiotics for two months, but already tell a difference. No pain-free days yet. But I’m still praying for my miracle. Anyways. There’s a lot to the lyme theories.

    • I hope you continue to find success with your Lyme treatment. I’ve come a long way since I started – it took a year and a half to get to a place where I felt like I had my life back.
      Keep in touch. I hope your pain free days will come soon!

  51. Hi Amy
    I have had headaches since November 2012. I felt like there wasn’t a single person on this planet who would understand what I am going through, until I came across your blog. I am 13 and I have no clue how to cope with NDPH. What do you do when you can’t stand your headaches?

    • I wish I had some great advice for you. I’m sorry you are going through all of this. When I can’t stand the pain I try to get rest, which doesn’t help much. I try to take good care of myself and not push myself to do things that I really don’t have the energy for. I hope you have support at home and a good doctor to help you through this.
      If there is anything I can do, any questions you have please let me know. There are many readers here who know a lot and are willing to answer questions also. And there a many teens and young adults who are suffering with NDPH. You are not alone in this.

        • Hi Makenzie,

          My name is Tara and I am also 13. I have had headaches since I was 11. I would love to have a friend to chat with that is going through what I am going through. I have not tried acupuncture but have gone to a lot of doctors who have not helped me much. How are your headaches; have they gotten better?

  52. Hi, I have been suffering with migraine headaches for almost 12 years now. During this period I have tried all sorts of treatment which included medication, Botox, chiropractor, mouth plate and recently the muscle surgery at the headache clinic. None of this treatments have worked. My last visit at headache clinic Dr Shevel recommended an arteries surgery. To be quite honest in as much as I am in a desperate situation I am not convinced with the diagnosis and therefore the success. Is there anyone who can share some testimony on the success

  53. Hi Amy,
    I am 24 years old and currently living in South Korea teaching English to elementary students. Last July I suffered with daily headaches for 3 months, I returned home to America and visited the dentist. He told me I was grinding my teeth at night so he gave me a night guard. I also went to a neurologist who told me I was having migraines and tension headaches and he gave me 10mg of amitriptyline to take at night and imitrex for severe headaches. About a week later my headaches ceased! I thought it was the tension from grinding my teeth. I continued to wear my mouth guard and take the amitriptyline each night. Since then I would get headaches every couple of days but less than 15 a month and aspirin would take care of the pain. Then this April my headaches came back and have not stopped. I had sinusitis and took medicine to clear that up, but the headaches continued. I have had some days of no headaches. About 5 sporadic days throughout June where I have had no headaches. Same with May and April. Does that mean I do not have NDPH? The neurologist in Korea put me on Topomax, which I have been on it for about a month, but without much sign of a difference. The headaches are about the same. I’m scared to admit I have NDPH since there is no cure, but by reading this site I feel like my symptoms sound more and more like everyone on this site. It is such a struggle to get through the day and my boyfriend has been a huge support, since we live so far away from our families. Thank you for this website, it is nice to know I am not alone. My heart goes out to everyone who deals with this each day.

  54. Amy,

    I’m 29 and living in NYC. A few days after Christmas, I started to have neck pain on the right side of my neck whenever I turned to the right. New Year’s Day I woke up with what I thought was the world’s worst hangover. I figured after a day of rest, Advil and gatorade I would be good as new. The following days the headache lessened but I had a head cold that I could not shake along with the persistent neck tightness/discomfort. I tried my primary care doctor, got rid of the cold with a zpack, and tried muscle relaxers for the neck and headache but nothing worked.

    In short, I’ve seen two neurologists (brain and neck MRIs done, complete blood work and thyroid panel), a dentist and oral surgeon who thought I had TMJ (I bought a night guard for “clenching”), a chiropractor, an acupuncturist, an allergist, physical therapy for several months, all to no avail. Finally last week I saw a headachae specialist who diagnosed me with NDPH. In addition to the consistent headache, my neck is always constantly tight and I have discomfort in my back near my shoulder blades. I don’t know if there is any correlation, but I have had two herniated discs as well in my lower back L4-L5 several years ago. My headache specialist prescribed me with Doxycycline and singulair however they have not provided any relief although I am told it may take several weeks to see a change.

    I can work, work out and go about my life, but some days the pain is worse than others. I am training for the NYC marathon, which will be my first, and it’s incredibly frustrating that some days I am in too much pain to go for a run. Some times, the running helps, and when I focus on running, I forget about the headache for a short while.

    My headache specialist said that in September we might try the pain injections but who knows if that will be effective. I may go back to physical therapy as that provided some relief to the neck (not the head), but honestly, I am at a loss as far as what to try next as I feel like the past 7 months I have lived in doctors offices.

    It’s good to read the stories of others that I am not alone.

    Matt

  55. Dear Amy & all,

    I would like to thank you for creating this community. My headache started in January 2005 (and yes, I can pinpoint the minute), and one of the most-difficult things for me has been to be very alone in this. While supported by my husband, friends, and colleagues, this is just a very unique condition. I attend many charitable functions for people with other health issues, and see the validation — not to mention fund raising for a cure.

    I would also like to offer my heartfelt empathy to everyone who has and who will post. I rarely shed a tear for myself but I was left in tears after reading these stories, esp the young people. It takes a remarkable skill set to navigate this. Every minute. Of every day.

    Next, “the only thing that has helped me”: Diazepam. 5 mg can cut the pain by 2 numbers on the 1-10 scale. 10 mg, which I use rarely, can break a really, really bad patch in the 8 range.

    I wanted to offer that in the third paragraph because I too have tried everything. My Neuro and I discovered this as we were in the process of addressing a sleep disorder he thought may be contributing to the headache. (The Diazepam stops parasomnia, otherwise known as sleep walking and talking, something I am quite excellent at). He assured me I could wake up and function — “5 mg is like drinking water, you won’t know you are taking it” — and he was right. It took some observation and a few experiments but I noticed the Diazepam seemed to affect the pain. The Neuro sanctioned waking use of it and the results were telling. This is now the only pharma intervention.

    I offer in case this helps someone else. I definitely have the “hyper-flexible neck,” so if you are in that category, this may be related to that (?).

    The rest of my story: Last week, I started with a new Neuro as my former one retired. She reviewed my case and concluded by asking me what I thought my dx was. I know it’s not migraine although I’ve always been treated as if on the migraine spectrum with the NDPH dx on the table. She did a very nice job of coaxing this dx out of me and agreed. So here I am.

    I stopped the healthcare and alternative healthcare merry-go-round several years ago and just concentrate on being the highest-functioning person living with pain that I can be. I accidentally wandered into the land of migraine surgery and its diagnostic injections. I must say, I have had some positive change from the “brow lift” cosmetic Botox injections, administered as a diagnostic for surgery but the “dimmer switch” can still make it to 8. This exploration required me to re-establish with a Neurologist and have the dx affirmed. Since Botox is only approved for migraine and now I have the NDPH dx, I have probably backed myself into a corner with my insurance company, but c’est la vie, I’d rather have the dx.

    When I say I’ve tried everything: I have. I don’t have it in me to list it here. But it includes many migraine med cocktails, a blood patch, a couple years of intensive PT/massage/acupuncture, TMJ treatment (yes, I bit a hard splint in half), meditation training, and pain behavioral health ETC.

    Seeing a psychologist specializing in pain helped me enormously. I did not believe when this started that I would ever accept this and I have. Regardless of the root cause, the mind-body connection can help and the research is just pouring out that mindful meditation can improve –well just about anything. In therapy, I learned the difference between pain and suffering, and I’ve tried to organize my life to limit the suffering.

    (And I totally agree with post above: exercise, activities, intellectual challenge, doing things for others: 90% of the time those things really help me get away from pain. When it tops an 8 though I stop functioning. At my trainer yesterday, I hit an 8 and went from some awful donkey-kick thing lifting a weight with my leg to just wanting to dig with my bare hands through the concrete floor to get away from my head).

    One of my worst faults is talking smart, and so I would like to say that I do suffer. It is often inconceivable to me that I am as productive as I am while in continuous, unrelenting pain. I do not get extra credit for this. People expect me to do what I’m supposed to do and be who I am supposed to be and at the end of the day I don’t get a break. It does make me bitter to see (fill in the dx) receive public acknowledgement and private accommodation.

    Which brings me to perhaps the next chapter in my story: Reading these posts, it’s evident that we are on pretty quixotic journeys in very individual ways. What Amy has created is perhaps a way to organize around promising interventions or at least promising coping mechanisms. Or at least I want my own freaking plastic bracelet.

    Thank you all again. I said to my husband yesterday after reading the whole site, “I wanted a community but now that I’ve found one, I would rather be alone.” Because I would not wish this on another human being ever.

  56. Also, for anyone with NDPH, and u feel like suicide, there is a drug called Deplin that gets rid of the suicidal thoughts. It allows seratonin to be absorbed better. For me it was a lifesaver. It starts working very quickly if u take Effexor. The only way that u notice that it is working is that u don’t spend countless hours thinking about the best way to kill yourself. Especially, if u aren’t going to kill ur self, it saves countless hours of misery.

  57. Hi- I don’t know why it took so long for me to find your blog. September 10, 2005 I had a really bad cold. Just when my nose started to clear up, I started to get the worst headache I had ever had. I lost my balance and was having trouble thinking. I seriously thought I was having an anuerism or something. I went to the ER, but they did nothing. I went to see a neuro who tortured me with tests for 8 months, but had no clue what was wrong with me. Finally he decided my dizziness was caused by migraines. I tried a combination of meds that allowed me to live a pretty normal life. Then, in 2010 I caught Mono from my students (I teach middle school). I haven’t felt well since. I have had to leave work for months at a time, but I still hang in there. I always worry if I will make it through the day. All of my triggers from a 2 to a 10 are there-lights, noise, smells. I had occipital decompression surgery, but nothing really changed. The meds that I used to take no longer work for me. I keep hoping something new will come along. Oh- I have been diagnosed with ON and NDPH because of the sudden onset after a cold.

  58. About 6 years ago I experienced severe nausea, vomiting, and fever for 2-3 days. I figured it was a bad bug. After it was all over I was stuck with this “headache” that I liken more to sinus pressure in my frontal and maxillary sinuses. Took about a year to get an NDPH diagnosis, but it hasn’t really helped me much in the way of finding an effective treatment. Since the onset of my symptoms, I’ve developed progressive fatigue, persistent eye redness, strange rashes, and depression (which is very unlike me). I’ve been so frustrated with this constellation of symptoms and am so tired of thinking the next treatment is going to work, only to be let down. Amy- I’m interested to hear about your Lyme diagnosis. I think you are in Connecticut(?) I am too and was wondering if you have any LLMD recommendations?

  59. Hi Amy,

    I want to say that I got a big big laugh out of “having some recommend imitrex cause it work on there cousins’ friends daughter.” I have had 2 fillings drilled cause a buddy was relentless about heavy metal poisoning. It is funny because it is true – Homer Simpson 1992.

    I was talking to my father in law who does sleep studies. He recommended that we participate in a study for NDPH. I have emailed a couple of docs to gage interest. So far 50% were interested.

    There are huge benefits to being in a study vs. seeing 1 doc at a time. Things like the long process of convincing them that these aren’t rebound headaches or migraines, not having to redo countless MRI, spinal taps, pills, injections, and not having to convince anyone that these are not caused by problems at home. Then only to give up and go to next doc.

    Having u done any data mining on this site? It would be nice to talley, symptoms, past, histories, etc to understand the common threads (i am seven years and I remember the exact time/date) beyond just knowing when it started. For instance, I just remembered that as a 5 year old, I feel from the monkey bars, back of my head hit the asphalt, knocking me unconscious. In true fashion, my siblings and cousins made up a story so they didn’t get in trouble but I was rushed to the emergency room. Could it be the source of NDPH – 30 years later after the incident? Could it be sleep? I do have a Cpap. Could it be depression? Tinnitus? Stress? Etc

    It would be really awesome to have data to see the trends and have groups of participate in a study. Let me know if u and ur community are interested.

    Best wishes. Bob

    • Hi Nick,
      I’m not sure where it went. I’ve been having a terrible problem with spam lately, and it is possible it may have gotten caught in the filter. It takes me quite a bit of time to sort through it all, but I’m working on it!

  60. Hi Amy,
    I’ve just passed my one year mark for the headache… I’m a sophomore in College and just thought I’d share… Ive been on countless drugs but none helped, I’ve seen about 10 doctors, and I have been hospitalized twice. The headache slowed down after the second hospitalization where I was given migranal, but it has started to go out of control again. I’m so glad that I found your blog (not that I’m glad you had to make it ) Anyways I’ve tried everything: gluten free, sugar free, trapping myself in a dark room, vitamins … I’ve had every scan and blood test you can think of… the whole nine yards.. But nothing will help. The pain is the only thing I can depend on… he’s always with me.

    From my experience the one thing I can say is don’t start taking narcotics because its so hard to stop, and DO NOT take tomapax… Thanks so much for making this blog!

    • Hi Val,
      Thanks for sharing your story. I hate that I can say I’ve been there! And I totally agree re: narcotics. I actually find that they help me – not by getting rid of the pain – but by helping me not care at all that the pain is there. So I don’t take them (though I would often like to).
      I hope you can find something to bring the pain down soon.

  61. I left this on another part of this site in error so I am also writing here.

    I have just found this site and it is good to see acknowledgement of this condition. I recently saw an independent doctor. He said it is very rare (translate, impossible) for anyone to have a continuous headache such as mine and that I didn’t need medical treatment or meds. I needed to see a psychiatrist. He all but told me to my face that I am crazy.This has left me deeply depressed though I don’t know why.

    I have a great Headache Specialist, Dr. Edmund Messina, who diagnosed me with NDPH 4 years ago and has worked with me in every way to find a solution. He is one of 2 headache specialists in Michigan and I am so glad I have him.

    My headaches started in October 2008 after a nasty virus that put me in bed for a week. Five years in constant pain. I do see a psychiatrist to help me cope with the stress of living this way. Its not easy living with a condition that most people do not understand or believe in but I am lucky to have a sister and a best friend who believe me. My place of employment is not quite so understanding so I may be forced to retire.

    I have tried all of the drugs used for Migraines, Neurontin, Migranal, Baclofen ,etc. Loved the topamax for the weight loss, though it did nothing for the headaches and made it hard for me to concentrate. They don’t call it dopemax for nothing. I been to the Diamond Headache Clinic in Chicago and in the hospital there for IV treatments, have had Botox, myofacial (sp) physical therapy twice (first time helped for a short while, 2nd time no relief ) The few drugs that have seemed to work I cannot take due to the severe side effects. The last was amantadine. I had no headache after starting it, then about 2 weeks later, woke up one morning with feet and hands swollen like balloons, every muscle and joint in my body were in pain and I was so weak, I could not even stand up long enough to shower. After an emergency room visit, I stopped the amantadine and lo and behold 2 weeks later, headache is back.

    I want to say please be careful with NSAIDs. I took tons when my headaches began, to try to stop the pain, and have recently discovered that I have 3rd stage kidney disease. I don’t know if it was caused by the NSAIDs but they certainly didn’t help. I will be ok, but must avoid any NSAIDs such as Aleve, and Motrin, Ibuprophen etc. It isn’t only hard on the liver, it affects the kidneys

    • I’m sorry to hear that you have been through so much. You are definitely not the only one who has been told they need a psychiatrist and that these symptoms are due to stress or a need for attention. I had a doctor tell me I was just tired and stressed and give me antidepressants. I wish it was that simple!
      Thank you for mentioning the NSAIDS – I was not aware that kidney damage was a possibility. I don’t use them much (because they don’t work for me) but I’m sure a lot of people do.

  62. Hi Amy,

    I just got my diagnosis of NPDH after over 14 months of headache that started after a sore throat. Just having a diagnosis is wonderful for me. I did go to Diamond Heache Clinic and spent over a week in inpatient care and I fell Sooo much better.

    What I learned from my visit is to only see doctors who listen to you and believe you. I had many other docotors question the severity, frequency and even truth or my headaches, and I kept going back to them thinking that I was doing something wrong. The DHC people took what I said as fact from the moment I walked in, they diagnosed and treated. I wish I had gone there a year ago.

    So if you feel like your are spending time trying to believe you, change to a docotor who does.

  63. Hello to all, I too have suffered with ndph , I have been through all the same meds and different docs. Jefferson headache center was my most recent stop. I had high hopes when I first started there,but found after a number of visits that treating the pain was all they do. Like everyone else I wanted a cure. I have tried other avenues off treatment Like acupuncture ,regular chiropractic and meditation with little or no relief. One day by chance I was talking to a coworker and they mentioned a friend that had similar symptoms. When I approached this person they suggested I see an orthogonist. It turns out this is a specific type of chiropractic therapy.To all out there ,I suggest looking into it. I have some good results with this therapy and although I still have headaches I feel I am going in the right direction. I realize chiropractic is frowned upon, this is definitely not your everyday crack your neck type of therapy. Hopefully this will be of some help to someone out there.
    Good luck to all .

  64. Hello everyone,

    I’ve had NDPH for 5 1/2 years now – currently in the middle of treatment for Lyme. I wanted to post this recent article published by Dr. Todd Rozen. I think that, like myself, so many NDPHers’ headache began with this “thunderclap” type headache. I’d be interested in knowing if anyone has tried this calcium-channel blocker for the headache? If anyone has, or does try it and gets relief, please come back to post. As Bob H. has mentioned, it would be great to get a study going to discuss commonalities, treatments, etc. Several NDPHers, again like me, at some point during the headache course, have tested positive for Lyme and/or reported some sort of “strange rash.” I wonder how many with NDPH have been tested through a specialty lab for Lyme or other tic-borne illnesses? Here is the link to Dr. Rozen’s article:

    Warm regards,

    Laura P.

    http://www.thejournalofheadacheandpain.com/content/14/1/100

  65. Hey Amy, Michelle from from Wisconsin here. Have you had any acid reflux problems months after all the antibiotics. All of a sudden, have acid reflux and can’t swallow supplements. I gag & they just seem to stick & cause pain. Trying to figure out if the antibiotics are the culprit. Thx!

  66. I Feel Like A Record Most Times When I Try To Describe My Headaches. My Name Is Tracy, I Am 38. Headaches Started 12-13-08 When I Woke Up. I Waited 2 Weeks Before Going To My Primary Care Physician. She Sent Me For My 1st MRI. Normal. Catscan Followed That. Normal. I’ve Had Sinus Scans, Brain Scans, Brain Change Scans, More MRI’s. ALL NORMAL. This Can’t Be. Something Has To Be Different. Anyway My Story Goes Like This. Feel Free To Grab A Coffee, Blanket Or Anything Else You May Need To Feel Comfortable. 12-13-08 I Awoke With A Very Intense Pinchy All Over Headache. Everything Hurt. I Went About My Day The Best I Could. 2 Weeks Later I Went To The Dr. She Asked Me What Was Different About My Activities. Our Daughter Had A B-DAY On 12-18-08, Then Christmas A Week Later. Ok Yes Very Stressful Times. She Decided I Was Stressed. I Had My Gallbladder Removed On 2-18-08 And Started To Crash On The Table, I Was Diagnosed Stress Induced Cardiomyapothy, Also With P.T,S.D. A Few Months Later. So Now I Have These God Awful Nerve Pinching Feelings Going On In My Head. Months And Years Later I Have Named Them…. Pinchy, Thundering, Throbbing, Bad, Terrible, Borderline Migraine And Bed Bound. For The 1st Couple Of Years They Were Your Basic Headache ( what a normal person gets) Last Year My Dr Realized I Drank 2 Much Bottled Water. My Water Of Course Had Chemicals In It. So I Stopped Drinking It. Within Days I Was Able To Go Outside, Tan On Beach For An Hour Or 2. Then A Few Weeks Later I Was Right Back To The Terrible Pain. My Dr Started Me On Topomax In 2009, I Stopped It In 2011. No Difference. I Also Stopped The Antidepresants Soon After.Last Summer, I Can Remember This Day Like It Was Yesterday…. I Woke Up With A Migraine, The WORST By Far. It Escalated Through The Day, My Husband Took Me To ER. They Gave Me A Shot Of Tigan, Nothing. Sent ME Home With Migraine As My Diagnosis. That Evening We Had A Terrible Storm. After Storm Passed My HEad Started To Ease Up A Little. During This Time Everything Hurt. My Teeth, Ears, Skin, Even Moving My Hair Around Hurt. The “weather headaches” Have Continued To This Day. I Can Wake Up ( on days i can sleep properly) And Tell You If It’s Going To Storm. I Get This Incredible Pressure, I Can’t Eat, Sleep. I’m Emotional. It’s Horrible. The Dr Has Tried Me On Tylenol 4…. No Help. Tylenol …. No Help…. Vicoprophen ( lowest dose) And It Helps Dull The Ache But NOTHING And I Honestly Mean Nothing, Works To Take It Away. I Have Seen 3 Chiropractors, 2 Neurologists, Last Month I Went To Kennedy Memorial Hospital Headache Center. The Dr There Told Me I Have Rebound Headache From Taking To Many Things. My Heart Dropped. I Knew This Wasn’t The Case Because My Dr Has Taken Me Off Of Everything For 3 Months And They NEVER Went Away. I Talked To My Estranged Sister Last Week And Guess What? She Has Them Too And Takes NOTHING. No Advil, Excedrin Etc.I Am Disabled With Health Issues And The Headaches. Most Of The Days I Can’t Even Stand The Sound Of The Vacuum. Through The Years I Have Seen My Allergist ( chronic post nasal drip) He Did A Skin Test To See My Allergies. Many Pollen And Many Different Molds.My Whole Emotional Wellbeing Has Changed. I No Longer Go Out To See Friends. I Can Only Go Outside When The Sun Goes Goes Down. It Is The Craziest Way To Live. I Feel Myself Slipping Into Depression Often And No One 100% Believes Me (besides my husband and children) I Am A Shell. I’ve Drastically Lost Weight Through The Years Also, I Had A Diagnosis Of Chronic Intractable Migraine From My Primary Physician, The Dr At Kennedy Took That Diagnosis Away And Labeled Me Chronic Daily Headache. I Need A Dr Who Is Going To Listen To Me And Not Tell Me It’s Rebound. I Just Know It Isn’t. I Feel Helpless Most Days.I Really Hope Someone Can Talk To Me And Give Me Encouraging Words And Avenues To Go Down.

  67. Hey Guys,

    I’m 19 years old, I had my first headache 5 1/2 years ago… and it never went away. I’ve been to many a doctor, numerous specialists, chiropractors, massage therapists, naturapaths, had botox done, nerve blocks and been on a special diet. I’ve been to the ER many times, only to be released on one occasion to end up back there only a few hours later, with loss of vision and immobilized. NDPH has a tough diagnosis… knowing in all likelihood it won’t go away. Which is why when I was in sick kids they suggested pain therapy to learn how to deal with the diagnosis and fight the depression that began to set in. Due to my NDPH I had to leave high school and switch to home schooling, I lost a love interest and have put a lot of strain on my family, I had to leave a job and now I have to have special treatment in school so that I am able to attend university.

    My story doesn’t have a happy ending… at least not yet. But I just wanted to say hi, say that there’s more of us out there and that even on days when you don’t want to move out of bed… its okay. You can be happy, someone will accept you for everything you are – just remain positive 🙂

  68. Wow, after a week of reading almost everything on NDPH I can find & reading all of your posts I have to say I am beyond depressed. I’ve had this 14 months & there are people on here who’ve had it 18 yrs…….I can’t imagine enduring this the rest of my life. Other than being hospitalized I’ve done everything medically possible (western, eastern & everything inbetween !). NOTHING has even taken the edge off. All it’s done has made me financially tapped ontop of the 24/7 headache. This sucks.

    • It does suck. I’m sorry that you are going through this. I took several breaks from treatment over the years (because none of it worked), and I am now closer to normal health than I have been in 10 years. Take a break from it all if you need to and focus on managing the pain as best you can. I know it isn’t easy. But don’t give up on finding relief. Finding relief from the pain seems to be different for everyone.

  69. Hi Everyone~

    I have not been diagnosed with NDPH, but with migraines. After reading about NDPH it sounds more like what I have. I got a non-stop headache about 12.5 yrs ago. It hit out of the blue and hasn’t really stopped since then. I have been to about 50 Dr.s, 6 hospitals, 2 Neurologists who gave up on me after a year each. At one time the Neuros had me on 18 different meds at the same time. My headache dies down some but never goes away. I have tried all the migraine/ headache meds and none of them have worked, or they started working and the side effects got me. It’s hard for me to do thing most days, I push myself to get things done, but pay the price for it later.

    I haven’t been able to work in almost 13 yrs because of these headaches. I suffer from depression because of this. I have high blood pressure now because it’s hard to exercise with a constant headache. I feel like I’m letting everyone down.

  70. I am so glad I found this. I am 20 years old and have been living with NDPH for nearly 9 years. In fact, I never really received a diagnosis (other than anxiety/stress-induced headaches) but after reading about it it is clearly what affects me and I felt let down by the medical system so many times and I thought I was alone with this. In my worst episode, at 16, the headache was so strong that it drove me this close to kill myself right before I was hospitalized in the psychiatric unit for 2 weeks. Sometimes, I feel like living with this constant 24/7 pain is so surreal. It is especially hard when you know it may be psychosomatic or that it will never go away. I could go for hours describing my story but that would be for another time….But this blog may very well have saved my life. Thank you.
    Louis

    • I’m glad that the blog helps and that you realize that you are not alone. 🙂 And it is not psychosomatic! We all hear that at some point from a doctor or relative who thinks they know what is going on with you. I hope that you can find a doctor who can properly diagnose you and possibly find a treatment that will help you manage the pain.

  71. I started getting NDPH about 8 years ago. It took about 3 or 4 years and about 5 neurogists before I was diagnosed with NDPH.

    It is a relief to find out there are other people like us out there. The bad news is that this is a waste basket diagnosis. Meaning that everyone with NDPH has similar symptoms but the cause could be greatly different. And there is no cure.

    The good news is that there are a few docs that specialize in NDPH. Dr Schulman at Lankanau Hospital in Philly and Dr Todd Rozen. I have only seen Dr Schulman who identified that I had sleep apnea and sent me to a psychiatrist. These measures only serve to make me functional. I still have the headaches and sleep is still an issue.

    I would like to get with a medical researcher to segment the population of NDPH but after working a full day, I just don’t have the energy. I am very sympathetic to your feeling that u are letting everyone down. I am not lazy, but there is only so much I can take. I believe it is impossible for someone that doesn’t have the disease to comprehend how we are even able to get up day after day. No one shows any mercy cause no one can believe that everyday all day we have a headache. It is very frustrating.

    The only thing we can do is to hope that somehow, somewhere some one does believe us and comes up with a cure.

    Best of Luck,
    Bob
    267-872-0134

  72. I am going to keep my story truncated a bit.

    The headache began Feb 14, 2008 at 6 PM. One month later my primary doctor diagnosed it as Tension headache and sent me to a Chiropractor.
    After 30 days of treatment, the Chiropractor gave up.
    I returned to a surgeon who had performed a cervical fusion on me a couple of years earlier and asked him to check me out. He injected my spine with a die, took some pictures and said I had Hydrocephalus and sent me to a Neurologist.
    The Neurologist, after many months of trying different drugs, said I didn’t have hydrocephalus, just migraines. He told me to go to a headache clinic. He had given up.

    At this time I joined a ‘medical club’ Pinnacle Care, a group that finds the best doctors in the world, for a fee. They hooked me up with a hydrocephalus expert in Maryland. She did a ICP test over night and announced I had SHYMA, Syndrome of Hydrocephalus in young and middle aged. She recommended a VP shunt with very specific directions on how to adjust to treat for headache.

    Pinnacle Care located a neurosurgeon a bit closer to home in Dallas area to install the shunt. The shunt was installed, but this surgeon followed his own path of adjustment, so for the next six months we adjusted the shunt up and down with no good results. He literally said, ?I give up” and sent me on my way.

    About this time I remembered a dentist some 30 years earlier telling me I had TMJ and that one day I might have headaches. Pinnacle found me a dental specialist to try this approach. Three months of wearing a fake set of teeth, and the dentist gives up.

    I ask Pinnacle to find me the best headache clinic in the states and of I go to MHNI for a 13 day stay. Here is where i first hear the term NDPH. This is also where I learned that most headache clinics deal with rebound headaches. At the end of my stay they told me there was something wrong with my neck, gave me bunch of prescriptions that didn’t do anything for me, and sent me on my way.

    About this time, I gave up on Pinnacle.

    The internet steered me to the Reed procedure. I got a Neuro stimulator installed. Six months of trying it out, I had it surgically removed.

    I am currently going to a Doctor Patton in Sugar Land, Tx. We have had some successes with occipital nerve blocks, and failures with Botox. He has me on Lyrica, Amitryptiline and Tramadol and the combination takes the intensity off. He now is giving up with his only advice is get a nerve decompression operation. My insurance won’t cover it, typical. They cover the Botox that doesn’t do anything, but won’t this new operation, that my doctor says has an 80% chance.

    I skipped some of the alternative things I tried, like acupuncture, Vitamin D treatment, High Blood pressure medicine, food triggers etc, etc, etc.

    Dr Patton is recommending I get a 2nd opinion, and I am waiting for the appt.

    Hope I didn’t bore anybody.

  73. If anyone out there is near Denver, there is a NDPH Support Group Meeting on June 6, 2015 from 1-3 pm at Children’s Hospital. There will be doctors, therapists, and other families there. IT is held on the second floor of the hospital. For more information, you may call 720-777-0911

    Children’s Hospital of Denver
    13123 East 18th Street
    Aurora, CO 80045

  74. Has anyone had any experience with Mayo Clinic in dealing with NDPH? My husband has an appointment with them next month in Minnesota. I’m apprehensive about going because of the uncertainty of them being able to help him. We are from Tennessee, so it will be a costly and time-consuming trip. Plus, I want him to see someone knowledgeable about this headache, and that can be difficult because of the rarity of it. Dr. Rozen is supposed to be going to the Mayo Clinic in Florida, but won’t start scheduling appointments until August or September. My husband doesn’t want to wait that long.

  75. My advice is to not get his hopes up – set his expectations very low. I have only read about controlling the pain level. It is a grim diagnosis but NDPH is a garbage pail of causes. NDPH patients’ daily headaches can be caused by something completely different. Many people have Lyme’s disease (I don’t believe I ever had Lyme’s disease) and if your husband started with that, it is important to get treated for Lyme’s as soon as possible. But if it isn’t Lyme’s disease, then the treatments are month by month testing of different migraine drugs and epilepsy drugs.

    When the headaches first started for me, I had to wait for 2 months to get into Jefferson Health’s Headache clinic. They then told me to take caffeine pills and gave me a spinal tap. Worthless for me. After that I went to the head of neurology at Temple and every month for a year, I tried a new drug and none of them worked. Eventually, he prescribed me percocet which gave temporary relief but the headaches are just masked. That was 9 years ago. I am still looking for even something that will allow me to function for more than an hour without having to lie down.

    If he does find something that works, please update us!
    Best Wishes.

  76. My name is Katie, I’m 31 and I have been suffering from chronic head pain for 6 years. My head pain varies from mild headache to migraine but my daily struggle is that I’m generally ok until the late afternoon and that’s when my head starts hurting and doesn’t stop until I go to sleep. Luckily my head doesn’t hurt when I’m sleeping and if I take a nap while my head is hurting, I usually have about 2 minutes of being pain free when I wake up until it sets back in. I take 75mg of Zoloft daily and used to take 1/4 of a 5mg tablet of Zomig a few times a week when the pain came on. Now 2 5mg pills barely does anything. I self medicate with alcohol and marijuana nearly every eveninh, but I hate it. I hate being in pain more though. I won’t go down the pain pill route as my brother has/and is currently addicted to heroin which stemmed from using OxyContin. I am looking to try propanalol or amitriptyline next. I wish we knew more about this. I’ve often wondered if this is something I gave myself. I’ve always been a nervous person. I had stomache aches chronically as a kid and developed IBS in high school. Around the time my daily headaches started, my IBS went away and I have a perfect digestive system now. It’s almost like my IBS migrated to my brain. I also suffer from emetophobia (fear of vomiting/seeing vomit) I’m curious if anyone else out there can relate and feel that internalizing stress brought about their NDPH. Also something peculiar, when I was younger if I had caffeine, it made me insanely euphoric. Since my NDPH I am very sensitive to it and can only handle half a cup of coffee or tea in the morning and it doesn’t make my euphoric, just a little more awake and nauseous if I have too much. I also can’t tell if caffeine is keeping my migraines at bay during the day or if the caffeine wearing off is what is initiating the pain daily. Also, when this all started I had a severe headache for 2 weeks straight and then it went away and I was dizzy for a couple months chronically with vertigo spells that would happen every afternoon/evening. I miss being dizzy because it’s just been chronic tension-like headaches and migraines since then. I would just love it if anyone out there can relate because I haven’t read anything out there that I can for the majority relate to.

    Thanks,
    Katie

    • Oh my gosh, Dear Katie, your story sounds a lot like mine and my heart goes out to you. As I write, I am hoping Gabapentin can take a seven down. I am into year 11. A few things: (1) I too get relief from sleep and when I wake up have a few minutes of blissful low pain. I have always that this should be a major clue. I still don’t understand it. (At one point, my neurologist thought this was because I had a cerebral spinal fluid leak that got worse with getting up and standing. That led to a blood patch. Which was a total waste of time and not an insignificant procedure.) (2) I also wonder about the “somatic” nature of my pain. As a kid, I had terrible stomaches every day before school. In college and for about a decade later, I had debilitating neck and shoulder pain. I have been a great integrative medicine MD and his theory was that I basically stuff my feelings into my body. When the headache started, the neck and shoulder pain stopped. (3) As a result, I have become the queen of self care — meditating, yoga, clean eating, good sleep, all the things you are supposed to do. Whatever the mechanism of this pain is, it has not responded. The onset of my headache was sudden and was at a time of almost unbearable stress and agony in my personal life. It’s like it just burst forth as a headache that never left no matter how I changed my life and how much I have healed. Long story, but I discovered that 5 mg of valium could cut my pain in half. Our cases sound so similar, you might check that out. Very small dose, can’t even feel it. Extremely helpful. I’ve always thought it’s somehow tied to my feelings/emotions. Don’t take it with booze. (4) I also self-medicated with alcohol. I really don’t apologize about it because it worked when nothing else did but it was also destroying me in other ways. It is no way to live. I have had moderate success with Gabapentin. You might try it, and don’t be shy about asking for a big dose (4000 mg ish). There are guesses that it works on the same receptors as alcohol and in fact there is some evidence it helps people quit drinking (replace the alcohol). (5) I also have the range of pain and use the word “migraine” to describe the worst of it, but my neurologist and I have agreed that it is NPDH. Which is a bitch because migraines don’t come to stay. People don’t understand. (6) Pot that is the indica strain might help — as told to me by an AODA counselor of all people. You are right to stay out of the pain killers. They don’t work on chronic pain but can kill you. (7) Most of all, you didn’t “give it to yourself.” People don’t “give themselves” type I diabetes etc. but now you have it. Learning how to live with it — and live well with it — is the challenge for people like us. In the beginning, I saw a psychologist who specialized in pain management, and he said “learn the difference between pain and suffering.” Learning to enjoy life while still managing the pain is a constant quest. If you are internalizing stress, do try to meditate, try yoga, long walks, get a dog: Whatever. It will improve your overall quality of life and while it may not help your pain, it may enable you to better live with the pain. You are not alone. I am evidence that despite the pain and despite bad days there can be plenty of good days.

  77. I live in Philly but I am can travel anywhere. I am not working. Best if they take insurance but not the end of the world.

    Many thanks. Bob

    • Hi Bob, my doctor is Daniel Cameron and he’s in Mount Kisco, NY. He’s well known in the Lyme world for his research and treatment. He doesn’t take insurance- most will not- but you can submit and try to get insurance to pay for some of the cost. Insurance will probably cover blood work and meds. Do a search for him and give his office a call- I will try to add a link here when I can get to my computer. The staff there is very helpful and they can usually get you in to see the doc within days.

  78. Hi all, I just got diagnosed with NDPH this morning. My headache started about 8:30 on the morning of March 23, 2016. I had just gotten back from my first morning run after being sick with a cold for a week and it hit me like a sledgehammer to the back of the skull.

    Compared to a lot of others, it seems I’m pretty early on in the process of trying the various treatments/medications. I’ve been on gabapentin/Maxalt for several weeks now and the Dr just switched me nortriptyline today; he said Doxycycline is the next option if that doesn’t work. I’m lucky though- my neurologist actually conducted a study on NDPH several years ago so he seems to be pretty familiar with it.

    Here’s my question for the group: has anyone tried pregnancy? My husband and I have been discussing for several months now on whether we want to try for a 3rd child (we have two girls, 18 months and 5 years). I was diagnosed with Rheumatoid Arthritis several years ago and it seems that the inflammatory processes that cause RA may also contribute to NDPH (the post-infection component; Doxy is a TNF inhibitor, Enbrel- the RA med that I was on before getting pregnant- is also a TNF inhibitor; for that matter, has anyone tried Enbrel for their NDPH?? It seems like it would have fewer side effects than the Doxy.) Anyways, I had spoken with my rheumatologist about our intention to have a 2nd child and he had advised that there was a good chance that pregnancy would put my RA into remission. He was right: I was in full remission for the 2 years I was pregnant and breastfeeding. Incidentally, my headache started at about the same time my RA returned and just a few weeks after I stopped breastfeeding (until the Dr got the MRI results today, one theory was the RA was causing the headache).

    So I’m wondering has anyone with NDPH gotten pregnant and did it provide any relief or break the cycle?

    • I got pregnant about 18 months after my ndph diagnosis and would say that my head pain was less intense during my pregnancy, but still there. I did have success with doxy though, but my underlying cause was Lyme disease and coinfections.

  79. Hi Amy,

    I’m a 43 year old male who has had NDPH for 13 years now. I have tried just about all migraine medications, treatments (including DHE in the hospital), and supplements known to mankind. The ONLY thing that has ever helped is EXCEDRIN. It used to help a lot but now the relief is very minimal. As you know migraine meds including EXCEDRIN can cause rebound headaches if taken too much. I have an appointment at UCLA in October. I am willing to travel anywhere to seek treatment. My pain is mostly in my (left) eye and my whole scalp is very tender all the time. The pain in my eye is sharp and my daily head/eyeache is usually a 9-9.5. Any suggestions for me??

  80. Dan, I have had NDPH for 10 years and was very close to putting a pistol in my mouth. I wrote a suicide note. I have seen countless doctors (neurologists, ENT, pulmonologists, psychiatrists, etc.). I spent 2 worthless weeks in the michigan neurological headache clinic. I have had my teeth drilled. I’ve tried every drug know to man. I had nerve blockers injected into the back of my neck and my eye brows. The inpatient treatment cost my insurance about $60,000 and the hospital is billing me about $8,000 that my insurance didn’t cover. In the end, I lost hope. I was tired of people thinking that I was making it up or exaggerating. No one can imagine having the head pain every day 24hrs a day for 10 years. I was a hard charging financial executive and now I was being accused of being lazy or just not trying?

    Do yourself a favor, go to a (http://www.ilads.org/) Lyme disease doctor. Ensure that they give you the complete Igenex lyme test (roughly $1500). The first lyme doctor that I saw didn’t give me the test but was treating me with antibiotics for 4 months and I started to lose hope again. Then i went to the (http://www.lymecenterne.com/) Lyme center of New England. It is run by a nurse practitioner, Susan Neuber, who has had Lyme similar to us and is by far the best medical professional that I have ever worked with. Incidentally, she charges about half of what the normal lyme doctors charge ($450 per visit). She ran the Igenex tests on me an turns out I have Lyme and 3 co-infections (mycoplasma, babesiosis, anaplasmosis). She also has a phlebotomist on site and has staff to get approvals from insurance for drugs, IV, blood tests etc. This doesn’t sound like a lot but when you are suffering, it is a nightmare tracking this stuff down yourself. The first Lyme doctor’s staff was having me do all the leg work which was making my head explode.

    I am getting a PiCC line next week which will give me IV antibiotics. The need for the IV antibiotics to to battle the infection across the blood brain barrier which seems to be very difficult when you have been infected as long as we have.

    Some quick stats: Standard Lyme Tests (Western Blot and Elisa test) only catch 70% of Lyme cases. Only 50% of people who have been bitten by a tick, actually recall being bitten by a tick.

    I had been tested several times over the past 10 years and the standard Lyme test turned up negative. And every doctor will ask “have you been bitten by a tick?” Then they ask “Did you have a bulls eye rash?” It turns out that all of these questions are worthless in diagnosing Lyme. Instead they lead to 10 years of suffering mentally and physically, losing house, investments, dog, wife, career, friends, etc.

    As a note, no Lyme doctor takes insurance, so it is out of pocket. I searched as well as I could for one that did take insurance with no luck. I came to the conclusion that the money is worthless if I am dead, so I paid out of pocket.

    Some other good words about Susan Neuber, she sent me to a Ophthalmologist who sees Lyme patients. He confirmed via an OCT scan that I had brain damage due to the Lyme disease. She also is very helpful about telling exactly which probiotics, vitamins, extended release magnesium (I was having body pain) to buy. The other Lyme doctor was very vague and not specific. I don’t think he understood that having NDPH makes it very difficult to do anything, so researching which probiotic to use just adds to the nightmare.

    As a note, I believe I wrote on this blog in 2009 or 2011 that I had never been bit by a tick so I clearly didn’t have Lyme. Complete nonsense that I was regurgitating from the first 3 neurologists that I saw.

    My symptoms were:
    NDPH – nonstop 24hr/day headache – sudden onset
    Chronic Fatigue
    Tinnitus with pain in my ears
    Sensitive to sound
    Sensitive to Fluorescent lights
    Arthritis in my shoulders
    Body pain
    Night sweats
    Sleep problems (if I missed a night of sleep, it could turn into 2 nights and the head pain to skyrocket)

    Best of Luck to you,
    Bob

    • Bob, I’m so glad to hear that you have found a Lyme doc to treat you effectively. I’m five plus years out with treatment and still struggling, but significantly better. All of your advice is spot on.
      I’ve always had to pay out of pocket for Lyme treatment as well. There is no choice. And the brain damage- I don’t know what to say about it except that it is real for me too.
      I hope your iv treatment goes well and that you see some progress soon. With aggressive treatment, my head pain declined rapidly and I hope it is the same for you.

  81. Thanks Amy. You are a great inspiration. I genuinely appreciate that you have done so much for the cause.
    Best Wishes, Bob

  82. I live in Dayton, Ohio. My 10yr. old daughter started a headache on Oct. 4, 2016 and the only relief she has had was maybe 2 weeks after being on a “headache cocktail” IV in the hospital. The headache spikes at bedtime, makes it difficult to sleep, and wakes her during the night. It’s bad through the morning, then gets to a more tolerable level around 2PM. She is taking 25mg amitriptyline (and has gained 5 lbs. in 6 wks.), 250 mg magnesium and 200mg coenzyme Q 10. She has missed almost 40 days of school this year and is going on home tutoring through our school system. Just before the headache became constant, I took her to the Dr. Sept. 20th when she woke for a 2nd day with a bad headache and we were surprised to find she had strep. They tested just to rule it out. One more day at home and she got back to school, then Oct. 4th it started again and never went away. She’s also started to have high/borderline high blood pressure readings too. I’m waiting to hear back on urinalysis, h. pylori, and hormone testing. Her thyroid came back normal. I found a pain management Dr. who has prescribed a cream we can massage her with and a tens machine. I’m waiting for that to come in. It’s scary to read that people deal with this for years. She’s out of school now and that can’t be the rest of her life (fortunately I am a stay at home Mom). She loves school and her teachers and wants to be there. When I encourage her to go, there are tears and her telling me she’ll just end up at the nurse. I regret not pushing it – I felt the problem would get better. I am open to ideas or advice anyone has to give.

  83. Do your daughter a favor and get her tested for Lyme and coinfections. The standard test is garbage. You need the Igenex test. Any Lyme doctor will do it. It is pricey to see a Lyme doctor and get the Igenex test about $2,400 for first visit with the test. But take it from someone who suffered for 10 years, it is worth every penny and is literally a life saver. I can’t emphasize this enough, don’t let a standard doc do the standard Lyme test and tell you it came up negative. The standard test is only 70% accurate. The other 30% of us spend the next 10 years in and out of doctors offices spending thousands of dollars with no relief. Show your daughter mercy and take her to a Lyme doctor.

  84. My son had NDPH for 9 straight months. In January 2017 he was treated at Jefferson Hospital in Philadelphia as an in-patient for 7 days after which he was headache free. They treated him with a combination of meds – Lidocaine, DHE, Magnesium, Haldol and toradol.

    there is hope

  85. My son had NDPH for 5 years. His started when he was 11 years old, immediately following a sinus infection. No treatment worked, and we tried everything. Finally this past year, we opted for Nerve Decompression surgery with Dr. Bardia Amirlak. Joe is 7 months post op and living pain free.

    • Mojosports, Please tell us details of your sons experience, ie: headache type, intensity, all the failed therapies etc. “have tried EVERYTHING”, did you all try: Mexilitine, Memantine, Flunarizine, Ketamine, IVIG, or LDN??? If nerve decompression worked, did nerve blocks help and that lead you to the surgery?? Thanks for any info and congrats to your son

      • I believe I posted Joe’s whole story earlier on the blog. Joe has NDPH, missed 2.5 year’s of school and his pain remained a constant 8-9/10. I know they tried Katamine, not sure about the others you listed, but we did numerous infusions over the years. We had tried Nerve blocks. The fist we did was successful for about a week, the second and thirds did not help. We have since found out, nerve blocks like botox, require a doc that really knows how to do them. The nerve blocks were done as a diagnostic pre-surgery and they helped for a short time. You are welcome to reach out to me if you can’t find the earlier posts on Joe. We were finally told in September of 2015 that there was nothing more for the doctors to try on him to lessen the pain.

        • I didn’t read your sons story but NDPH is a worthless diagnosis that leads to misery. Usually NDPH means that they have Lyme disease. Have your son take the Igenex test. See a Lyme literate doctor. However, if you are not in a Lyme area of the country, it could be an autoimmune disease.

          Best wishes, Bob

          • Bob is correct. NDPH is a symptom not a diagnosis. After $90,000, on headache treatment, inpatient, meds, botox and top neuros all telling us headache is primary, we stumbled onto a immunologist at UCLA that ran tests: IgG, IgA, IgM, eDNA, ANA etc. Finally diagnosed with Primary Immune Deficiency and LUPUS. Listen to Dr. Todd Rozen who says to run these tests.

  86. My daughter started to have severe headaches 5 years ago after she got pneumonia. At first she still could enjoy life with a few hours of activity a day. The condition gradually developed and since October last year the symptoms are 24h/7days a week. She has : headache (dull, not pulsating, in her temples and forehead),constant fatigue, eyes pain, limbs pains. As she has hyperacusis our life is completely crazy – we cannot talk or run a normal live around her. She also has photophobia. Sound and any light make the headaches unbearable. Also, she was diagnosed with a heart condition – ventricular tachycardia. Certainly, no drugs give any relief. She just stays in bed. Many doctors tried to diagnosed her, in vein. She has no neurological disease. No viral infection, no sign of Lime. No psychological problems. It is a relief for me to find people talking about similar cases. We live in Poland (Eastern Europe), no doctor ever heard about NDPH. All they ever do is sending us to psychologists. My daughter is a happy person despite her illness but I am afraid she cannot go on like this forever. We have a possibility to go abroad for diagnosis/ treatment and I would be grateful for any recommendation. Also, do you have such experiences that when you are very excited, surprised you do not feel pain? As if adrenaline cut off feeling of pain. I never found any information on such phenomenon and I would be grateful if you could share your experiences.

    • Is she on Mexilitine? Talk to her cardiologist, it’s used for heart conditions and also has the benefit of adding lidocaine in her blood stream that can, at high enough doses provide headache relief.

  87. Anna – you may want to consider posting your daughter’s experience also on MDJunction in the NDPH forum. There are two excellent moderators who also suffer from NDPH, along with a lot of other folks. The moderators are extremely knowledgeable and caring and reply to every story to help guide folks like you in the right direction. For myself, as an NDPH sufferer for nearly 9 years, the only time I do not feel pain is when I’m asleep. Distractions are helpful, but they do not take away the pain. If you are traveling to the States, Dr. Todd Rozen at the Mayo Clinic in Florida, is an expert on NDPH. Best of luck to you and your daughter — I hope you find something helpful for her.

  88. Hello Amy and other NDPH sufferers,

    After discovering what NDPH was through this blog, doing research and consulting other forums, I have found that it has helped me greatly to deal with my pain to know that there were others just like me.

    I am a journalism student here in Montreal and for one of my classes I was asked to write a feature on the topic of my choice, and considering I have been wanting to tell my story for a while now, I thought making a feature on ”my life with NDPH” would be great. However, I would love to have some input from other sufferers. The final article will be pitched around media outlets in order to be hopefully published and get the NDPH story talked about in mainstream media. Now, I don’t know if it is in Amy’s blog’s guidelines to ask for testimonies, but I would love to hear from some of you (and your anonymity will be guaranteed). If anyone is interested to give their input and be part of my article, message me at louloumontreal@hotmail.com.

    Louis

    (P.S.: Amy, feel free to delete my comment if it doesn’t fit your guidelines 🙂 )

    • It is definitely fine with me if people share their stories with you. Please return and link up any articles that you write. I’m sure we would all love to read them. 🙂

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