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
32 Comments
September 1, 2009 at 10:29 am
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!
September 1, 2009 at 2:04 pm
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!
October 4, 2009 at 8:31 pm
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.
December 3, 2009 at 12:13 am
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
October 10, 2009 at 8:41 pm
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.
December 3, 2009 at 12:02 am
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
December 2, 2009 at 1:26 am
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
December 3, 2009 at 12:09 am
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
January 23, 2010 at 11:11 pm
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
January 27, 2010 at 1:36 am
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!
February 21, 2010 at 12:34 am
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
February 23, 2010 at 2:30 pm
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.
February 23, 2010 at 10:34 pm
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).
February 23, 2010 at 10:55 pm
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 =]
March 2, 2010 at 6:57 pm
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!
)
December 30, 2009 at 8:30 pm
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
January 18, 2010 at 8:33 pm
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.
January 24, 2010 at 11:16 am
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
January 27, 2010 at 1:27 am
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.
February 18, 2010 at 8:45 pm
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?
February 19, 2010 at 9:08 pm
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 -
April 6, 2010 at 9:10 pm
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
April 13, 2010 at 12:26 pm
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…
May 19, 2010 at 5:36 pm
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.
June 24, 2010 at 1:56 am
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
June 19, 2010 at 6:37 am
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.
June 24, 2010 at 1:52 am
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
June 23, 2010 at 7:58 pm
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?
June 24, 2010 at 12:26 am
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
July 13, 2010 at 6:36 pm
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.
July 13, 2010 at 11:57 pm
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
July 14, 2010 at 12:11 am
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!