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
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!
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
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
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!
)
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.
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.
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.
Amy
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 -
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…
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
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
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!
Keep us updated – and I’ll look into getting some kind of forum on here!
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.
Thanks,
Amy
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!
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.
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
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
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!
I haven’t tried it – please let me know how it works for you. Any negative side effects so far?
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!!
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…
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, 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.
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
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.
A new daily persistent headach blog for your blogroll.
http://refractoryme.wordpress.com/
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
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
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.
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.
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.