What is NDPH?

If you have been diagnosed with NDPH / New Daily Persistent Headache, you could easily answer this yourself. Most of us have had the exact same experience. You are going about your life, when one day, out of the blue you get a headache. It’s worse than any headache you have had before. It doesn’t lessen when you take a hand full of Motrin. It doesn’t ease up when you lay down to relax. If you are lucky (or just plain exhausted), you can sleep through it most nights. You may notice it if you toss and turn at night.

You begin the search for answers, because the headache is still with you. It never fully goes away. You probably end up in the ER, getting scanned every which way and poked and prodded. Maybe someone takes pitty on you and gives you some morphine. Good stuff, eh? You still have a headache, you just don’t care all that much that you have a headache.

Time goes by and you see some docs, many docs. You try many different medications, with varied results, but limited relief. Everyone and their brother gives you advice because they are sure that their once-a-month migraines are just as debilitating (they are not). You are so desperate you try everything from drinking more water to hanging upside down over your couch. Kidding on that last one – that may be the one thing I haven’t tried. Maybe that’s because my cousin’s best friend’s mother didn’t recommend it.

Got the idea? New Daily Persistent Headache starts with the rapid onset of an intense migraine quality headache with no known cause. And it just seems to go on endlessly. The doctor who diagnosed me explained it clearly. Imagine a light switch with a dimmer. The headache goes up and down, but never really shuts off.  When the dimmer switch is turned all the way up, you have intense pain. This intense pain often goes on for days, months, and sometimes years with out getting turned down much at all. When it is all the way down you have a dull ache that, after enough time, you become so accustomed to, you hardly notice it. The person at the desk next to you may complain and need to leave work early with a headache that wouldn’t phase you at all. You are thankful for such an ache, because you know it could be so much worse.

NDPH seems to be resistant to most migraine medications. Gee, maybe that is because it is not a migraine.  So people with NDPH just go on as best they can, trying new meds, testing out folk tale medicine, exploring natural alternatives, supplements, herbs and snake juice with the hope of getting some relief.

Hope. It is essential to your daily life.  I have to believe there is some solution out there for us. I have to believe this. The thought of living my entire life this way is unthinkable.


Comments

What is NDPH? — 170 Comments

  1. That sounds very familiar. My story began almost 15 years ago , December 8, 1994. I was a passenger in a car and all of a sudden, out of nowhere, I got a severe pain in the back of my head. I have never felt anything like it. I just remember holding my head. It was hard to lift it up. Fifteen years later, I have had a headache, different levels, every day since that day. After many ER visits and many many neurologists, I have no answers.

    • That is how so many NDPH stories begin. We can always remember the time/ place when it started and it never really goes away. I’m sorry that you still haven’t found an answer after all this time. It is so hard to keep trying new meds or treatments, getting hopeful and then having the headache remain the same. The ups and downs – between hopeful and hopeless – are the most difficult for me.

    • Hi All. Thought I would just keep myself anonymous in the meantime. I had “NDPH” for a few months. I had been to all types of doctors and on various medications. The symptoms I had were dry mouth, tiredness, breathing heavily, actual pains around my body, etc etc. While i do not have the time to go into detail as to how I cured my “NDPH” and the logic and understanding behind it, I can quickly explain how I did it, if you can identify with a problem in the jaw. However, please do not take this as a medical diagnosis, it is purely the way my headaches were solved. I noticed that I bit skew and grinded my teeth (causing tmj), and was constantly thinking (causing stress / lack of relaxtion). I got a mouth guard from the dentist and relaxed my jaw for about 2 weeks. Simultaneously, I learned methods to relax and switch off my brain. Once my jaw straightened and released the pressure to my head, goodbye headaches.

      • Looks like my headaches did not go away. I think i was just excited with thinking that my headaches were going away. I was pumping adrenaline through my body and diverting the pain to other parts of my body, that is how my pain reduced. The problem with that is that the fall after pumping that much adrenaline and diverting the pain is no good. In the 6 months of having this, I have already tried all the GP, ENT, Neurologist, Eye Specialist, Dentist, Psychologist and Psychiatry testing. While they managed to find the true sources of how my headaches came about (which is logical, emotional and physical stress), they do not have the answers to cure the headaches. I think it is important to go through the process though, so that one day when these headaches go away, I know how to ensure they do not return as often. For Maria / Anthony and anyone else who have gone the surgical route, please keep us updated.

        • I am so interested in your story. Exact same to mine! Thought my new Rolls Royce mouthguard was going to resolve everything! but it hasn’t. I am now trying (and have just started muscle relaxants to help me cope with the daily pain) What made me reply was that you stated “I know how to ensure they do not return as often” … I would be so grateful if you wouldn’t mind letting me know how you do it! Thanks

  2. Dear Amy,

    I came to know about you from hubpages. I liked your articles on “10 little ways to show your husband that you care”. It is a good one and I liked it very much. I’m reading more articles which you had posted in websites. It is mind blowing information.

    I’m sorry for NDPH which is troubling you as you had mentioned. I appreciate your efforts in creating this blog specially for NDPH people. It is well organized and good information to all visitors.

    I would like to introduce you to a gr8 physician who is in the town who can cure your NDPH. He is well renowed person and He has cure for everything. Do you want me to tell the name & location of this doctor?….

    His name is Jesus and He is right beside you waiting u 2 call Him and talk to Him. Jesus created you in His beautiful image and He knows what is good for U. Jesus is your daddy and He takes care of you always. You are set free from all health problems in Jesus name.

    You know how much blessed you are. He has given you wonderful wisdom to be a blessing to many in your writings in all websites.

    Please spend talking to Jesus in your closet and He will reveal you many things which He will use to bless many people thru your writings.

    Remember “Jesus is The Way, The Truth and The Life”

    Be blessed & encouraged. Keep on writing!..

    Agape – PJ

  3. Great description of NDPH. I’ve suffered for 22 years now, and can’t really remember what it’s like to NOT have a headache.

    I’m intrigued by Prajeeth’s comment. Did Jesus give me this headache so I’d become religious? Or does he just not care that non-religious people are in pain?

    • Thanks Mark. Reading “22 years” is painful for me. I hope you find something that works to control and manage the pain. Please feel free to tell us more about your experience – and what keeps you going. I just passed the 5 year mark in March, and I think I have come to some strange kind of acceptance of my situation.
      I don’t know that Prajeeth will return to answer you. I, for one, don’t believe that this is some sort of punishment. At least not most of the time, even though it feels like it. We suffer, regardless of faith.

  4. My headaches started only 6 months ago, (happy easter weekend for me) so I understand that I’m hardly a foot in the door to the process of finding out what’s wrong, but already I’m past frustration and have settle dinto a pattern that revolves around my headaches. I don’t have a diagnosis yet. Actually, I havent gone to a doctor yet because on a student budget it leads to some tough expense choices, but because of my worrying mom I finally made an appointment. I’m only 18 years old, and the thought having this headache for the rest of my life is terrifying. I sincerely hope there is an answer out there for all of us.

    • Hi Lindsay,

      I’m glad to hear that you are seeing a doc. It’s really important that you go through the tests just to be sure that there is not an underlying problem that could be causing the problem.
      I hope that it isn’t NDPH, and that your pain is caused by something they can treat more effectively. Good luck and let us know what happens! 🙂

      Amy

    • Lindsay,

      I have a daughter your age, and one of my biggest fears is that she or her younger brother will inherit headaches from me, like I did from my mom.

      What gives me hope is that every year, medical researchers are finding out more and more about headaches and how to treat them. When I first got these headaches, there was little or no talk of preventive meds. Now, there are a huge number of preventives that your doctor should explore with you. NDPH is particularly resistant to treatment, but some sufferers have had good luck with various meds. And I think the options for treating us are only going to improve over the years.

      So, the good news is, even if you have NDPH, the odds of you suffering for many years are much lower than if you were diagnosed 20 years ago!

  5. I have had a headache similar to what you described for the last 6 months, and the neurologist believes it is ndph, but I also have a lot of dizziness and lightheadedness that accompanies it. Is this something that any of you have also experienced. I am not convinced that this is what I have, and would like some feedback from some people who have been suffering form this condition. I wasn’t given a very good description of it form my dr. and haven’t been able to find a god source of information about it online.

  6. My favorite part about having NDPH is being treated as a drug addict. Or being told that my headaches are rebound headaches.

    I am a hard working successful exec. So when I first started having them, I went repeatedly to neurologists and had every test done and every migraine medication as well as the epileptic meds. I was hopeful at first but stayed on lexapro to keep me from jumping out a window. After a few months of daily all day headaches, I started to panic. I had to turn the lights off in my office because the flouresent lights intensified my headaches. The ringing in my ears was intolerable and I had to beg and plead with doctors to get ambien to sleep at night. They were so worried that I would become addicted. I finally convinced my primary that if I couldn’t sleep, I couldn’t work. I told them that I am also addicted to brushing my teeth, shaving, showering, etc.

    The biggest problem with NDPH is that no one can imagine having that type of headache for such a prolonged period. So you must be a drug addict or making it up for attention.

    Long story short: I have nothing wrong with me that is detectable. I have had All sorts of MRI, spinal taps, hearing tests, psychological tests. I have seen 5 neurologists, gone to headache clinics, chiropractors, tried remedies from everyone and their dog. I had these headaches for almost 2 years before a neurologist showed me mercy and prescribed percocet. Percocet is great in the short term but you still have the headache, your ears still ring but you feel better. The side effects are irritability, memory loss and increasing doses. And if you are not careful, you can act stupid. The other thing to take note is that most doctors have given up on you at this point. Go to another doctor.

    Finally after 5 years, Dr Schulman diagnosed me with NDPH. I was so relieved to find out what I had but discouraged that there was no cure.

    He changed my meds from lexapro to pamelor and effexor. He had me do a sleep study which revealed I had sleep apnea. Then he had me go to a psychiatrist which I was very, very skeptical due to my past experiences. He diagnosed me with ADD which I am not 100% convinced I have, but he did prescribe adderall xr.

    So 6 years after that first day that I remember so well, I am now very functional. The headaches and ringing in my ears are still there but they don’t rule my life. I feel confident that I will be able to work and excel at work. I dont have
    any big worries and don’t feel like hurling myself infront of bus.

    • Dude!! That sucks!! My neurologist has been extremely respectful. I haven’t had any luck finding a medication that helps, but he hasn’t insinuated that I am being dishonest, neglecting my health, or using drugs in any way.

  7. The Jesus guy, the herbal people and the people who say I have rebound headaches are about as helpful as a lobotomy.

    Every doc I went to concluded rebound headache with really nothing to base their finding. However, I had to prove to every single one by going off the meds resulting in unbearable suffering just so they could check it off their list. It genuinely makes me mad.

    • Wow you just described my interactions with most neurologists… something like this:

      Me: I’m having clusters of migraines that go on for days. I take Imitrex, which stops the headache, but then it comes back the next day. Rinse and repeat for 3-4 days, then I have a few good days without a headache.

      Dr: You’re having rebound headaches. It’s because you’re taking too much Imitrex.

      Me: If I don’t take Imitrex, I can’t function at all, can’t work, etc. Plus, if Imitrex is causing the headaches, why do the headaches stop? Wouldn’t they go on forever, if I took Imitrex every time I had one?

      Dr: I’m the expert here. Even though I don’t have migraines myself. Here, try taking this anti-psychotic medication that sometimes reduces migraine frequency for reasons no one understands. It will turn you into a zombie and cause crazy mood swings, but you may see a 2% reduction is your attack rate (or not).

      • Ugh. I’m so sorry to hear that you are having this experience! So typical of doctors. Have you been diagnosed with clusters? Are you taking lithium? I’m asking because although I don’t have clusters, my brother has suffered from them for 20 years and has tried just about every treatment out there. Imitrex is a life saver for him – though he takes it so frequently I worry about the side effects. When he is in a bad cluster cycle, he will take an imitrex shot as much as 3 times a day. It does kill the pain, he doesn’t get rebound headaches (which don’t present with the same pain pattern as a cluster). He tried the lithium for a while and it helped a little until it stopped helping at all. But he hated being on it.

  8. Hello Amy,

    Thanks for the excellent description of the disease. I have had a headache now for two and a half years. It came on all of a sudden during the middle of my final college exams. somehow I managed to finish my exams and get a decent result. My GP told me that it was either stress or a sinus infection and got me an appointmnet with an ENT. after waiting almost a year I finally got to see an ENT who told me that it was my jaw that was causing the headache and recommended me to see a specialist in TMJ disorders. the TMJ specialist put me on everything from iboprofen to antidepressants (which made the headache worse). I have tried physiotherapy and it seemed to have relieved it some bit but after 6 months it stopped working. at the moment I just try to keep positive and just get on with my life.

    • I think trying to get on with your life is a good idea, but don’t stop looking for a cure. It may be out there. I hope it is out there. As time goes by, I go up and down with hope and despair. Some times I can get on with things, but I know I have been fooling myself into thinking that this is “life” as it could have been without the pain. I hope you can find some relief and keep pushing on. Life is waiting.

  9. Hope this doesn’t disappoint any of you, but my headache arrived 37 years ago and I’m still counting the days since I can remember what it felt like not to have a headache. I haven’t had a smart enough doctor to even know what NDPH is! None of the vast array of meds prescribed to me for migraines, pain, or depression has ever worked. I won’t bother taking any more since there are always side effects and none of them actually removed the daily pain that is just a part of my everyday life. I have just learned to accept the pain and try to ignore it the best I can by staying busy enough not to think about it. Hope someone out there with NDPH has better luck than I’ve had. Terri

    • Hi Terri, it is so sad to hear your story. I couldn’t respond initially because, really, what can I say? Six years seems like a life time to me. 37 is unthinkable. I hope that somehow you find something to help you cope with the pain or alleviate it. You are a strong woman to have been able to get through this for so long. I can’t say that I would have hung in there that long. I wish you a pain free day and all the strength to carry on.

    • Terri, I have been suffering with NDPH for more than 21 years and I know what you are going through , I get so frustrated wondering why I can’t solve this problem or that no one understands it.

  10. How can you get diagnosed with NDPH? Because I have had a headache for the past 6 years and the way it is discribed here sounds familiar.

    Thanks,

    Laura

    • Hi Laura,
      The best way to get a diagnosis is to find a doc/ neurologist who specializes in NDPH or chronic headaches. If you check out the support group at MDJunction (see link in the side bar) there is a list of doctors who could help. If you can’t find the list, just ask in the forum and someone will answer with a suggestion. Unfortunately, having this diagnosis is not a great thing, but I know that having some sense of what to expect and what to call it can bring some peace of mind. Best of luck and let me know if you find any answers or treatments that help you.

  11. Hi Amy

    Well done on keeping such an interesting and compassionate site.

    As someone recently diagnosed with NPDH, I thought I would make two comments.

    1. Has anyone any views on the theories about headache advanced by Dr Eliot Shevel of South Africa. Dr Shevel concentrates on migraine but contends that headache pain in general is very often a result of problems with the extracranial arteries of the head and not the intracranial arteries or brain (as most neurologists believe). He argues that this fact has been ignored by neurologists, who have focused on preventive medication that is often of limited efficacy. He has pioneered a form of arterial surgery for headache sufferers at his clinics that is minimally invasive. His theories are controversial (and my own neurologist dismissed them). Nonetheless, he has been published in a number of eminent academic journals, including Brain, and has been the subject of considerable press interest recently following collaboration with Italian and American neurologists. A quick google search on his name will furnish all the necessary details.

    2. Nerve decompression surgery, which is also somewhat controversial, does appear to have some positive results. Do any NPDH sufferers have comments on its value for people with our rather unusual headache disorder?

    Thanks again for this site.

    I hope all reading are having a good day.

    Cal

    • Hi Cal,
      Thanks for the lead on the South African doctor. I will definitely look him up.
      I am writing because I had the Occipital Nerve Decompression Surgery 1.5 years ago. I was, of course, hoping for a cure. I did not get a cure, but I got about a 30-40% reduction in the pain intensity of my chronic headache. They are great doctors in Houston. I am happy to talk to anyone who wants to talk about the doctors, the process, my experience. I am very glad I did it. I had to pay 15,000 dollars out of pocket.
      Amy G.

    • Hi Cal,
      Thank you so much for leaving the information about Dr. Shevel here. I have been in contact with him by phone and email, and I certainly think, at this point in my research, that it might be a useful technique for me.

      I did have the OND surgery 1.5 years ago. It gave me some relief…about 30-40% reduction in the intensity of my headache. Nothing has every touched the frequency. It is with me ALL the time.
      I am now wondering if the OND surgery was moderately successful because the procedure disturbed the landscape of my extracranial arteries.
      THe worsening of my headaches is always preceded by a powerful throbbing in my carotid artery on my left. I have always suspected some vasculature component to these headaches. They started almost 4 years ago.
      amy g

      • I am glad you are encouraged by conversations with Dr Shevel. I too have been in email correspondence with him.

        As you know his views are controversial. Further (as in my case), lack of any positive response to triptans or to IV DHE treatment (which I have had) makes it more difficult for him to determine that one’s headache is primarily vascular. In correspondence with me, he expressed surpirse that I had no relief from DHE and stated that this result made it more difficult to say that his surgery would be effective. A further point worth making is that he is really concerned with classic migraine; he does not seem to have published or commented on NPDH, which, as you know all too well is distingushed by the fact that it does not respond to treatment.

        As I mentioned in my original post, my neurologist is very skeptical that some arterial ligation could cure something as seemingly complicated as migraine. It would be great if another doctor or neurologist could comment on Shevel’s theories and surgery. I do not find the testimonials on Dr Shevel’s website especially convincing.

        I live in Europe and the cost of travel to South Africa and subsequent treatment is prohibitive. For such minor surgery, the fee is very high. Nonethless, Dr Shevel is generous in replying to patients that is not treating, something that is very commendable. I wonder also what he makes of botox and nerve decompression.

        In any case, I will post again soon if I discover any more about the extracranial theory re headaches. I hope you are doing well.

        Cal

    • Hi Cal,
      I had Nerve decompression surgery. I would say it helped some….maybe 20 -30 percent.
      I thought very hard about going to South Africa but both my doctors, Dr. Rozen ,and Dr. Loder said it would be a very unhelpful thing to do. At best it could help for a short time until the headache found new vascular pathways to create havoc.
      What helps me is a high dose of a drug called Salsalate, and high dose of wellbutrin.
      Nothing else helped…I tried everything….I am now doing hypnosis which though it doesn’t help the headache diminish it helps me feel stronger and calmer.

      • Hi Amy,
        I’m wondering if you would share the dosing that you have found helpful with Salsalate and Wellbutrin. Also, are there any side effects, stomach issues, etc with Salsalate?

  12. Hi Cal,
    Thanks so much for your generous reply. I have talked to a few excellent neurologists about this procedure. I saw Dr. Rozen a few weeks ago, and he was very discouraging. He seemed to think that though this procedure might give some temporary relief, the relief would not be permanent, as the migraine would find new vascular pathways to express itself.
    My biggest problem with Dr. Shevel’s claims is that no one else is commenting on them. He says he has had 85% success in 500 people, but no studies are written up. I sort of want to ignore “common sense” and just fly to S. Africa and give it a chance. Dr. Rozen, not disrespectfully, said, “desperate people will do desperate things”. He suggested there were still quite a few things for me to try before I decide I am that desperate. Also for me it is cost prohibitive. I live in the Boston area. If it were in NY and cost a few thousand dollars, I would just try! I have not ruled out the possibility of going to SA for this procedure, but just not going yet.
    I hope you are having a good-ish day. Dr. Rozen put me on an NSAID called Salsalate at a very high dose. I was having great success…40% reduction in pain level, but had to decrease the dose due to increase in migraine with aura on top of the daily headache. I am now on a lower dose of salsalate, but still getting more relief than on other NSAIDs. I have started the Minocycline and Singulair protocol, but notice no change in the past two weeks.
    amy

  13. Hi Amy

    Yes, I agree that it is strange that no one is commenting on Dr Shevel’s theories. His work is published in respected journals and he himself very kindly fields questions from people such as ourselves, but there is simply nothing else in the literature about his surgery. As all headache sufferers know, there are innumerable medics and others on the Internet claiming to have a cure of some sort for headache; it puzzles me that no other doctor in the world would offer this straightforward surgery if it has such great .success.

    My own headache is largely located in the occipital region and has no migranous features. I have had no luck with elavil (other than bad luck, the elavil/amitriptaline gave me unilateral tinnitus, which is hellish) or depokate as preventers but am soon to try botox. My neurologist also wants me to take topamax. I am weary of these strong drugs and am resistant to starting another one.

    I too have thought of just flying to South Africa but, in the absence of any commentary, it would be hard to justify. Other solutions that Dr Shevel suggests, including the use of a mouth guard/dental device, do not sound promising.

    I hope you woke up today and your headache was gone!!

    Cal

  14. Cal,
    I share all your thoughts about Dr. Shevel. If he is on to something why wouldn’t they be doing it in other places???? I suppose every idea that is controversial starts small somewhere, and perhaps will be the next big thing.
    I am getting alot of relief from Salsalate at 2000mg a day. I was originally on 3000 mg a day which gave me TREMENDOUS relief, but I started getting auras on the high dose.
    I had no luck with amitriptyline or topomax or beta blockers. I get botox 200 units every 3 months or so, and that definitely helps. I think I mentioned I had the OND surgery as well, which really helped alot…like 30-40% improvement.
    I am waiting to see what the new cocktail of minocycline and singulair does.I have also explored transcranial magnetic stimulation (TMS) which I have on the back burner.
    I am also considering an inpatient stay to do infusion therapy over the course of a week or so. Dr. Rozen recommends this before heading to S. Africa.
    I hope your headache disappears too. Just back into the nowhere it came from.
    All the Best,
    Amy

  15. Hi Amy

    The very best of luck with your infusion treatment. I had a DHE infusion myself, but it did not help. However, strong vasoconstrictors have proved hugely beneficial to many people with headaches, so you have a good chance of success. I am soon to take topamax at a small dose. I am rather worried about the side-effects. How did you get on with it? It is also good that you are seeing Todd Rozen. By all (internet-based) accounts, he is the man to see for this cursed thing.

    If you do bite the bullet and go to South Africa, it would be great if you could report back on your experience. Dr Shevel sounds so definite in his views, a feature which is attractive when neurologists are, understandably, so vague when discussing the cause of headache. Like you, part of me wants to believe that a simple arterial surgery could stop the pain. It does seem unlikely though; the very experience of head pain suggests complexity to me rather than simplicty.

    Anyways, stay strong. You will get better.

    • Hi Amy,
      Thinking about the nerve decompression with dr ducic or dr guyuron. Still really unsure about my diagnosis as it seems to be one of occipital neuralgia, Daly Persistant. I did have a mountain biking accident and then after a chiropractic adjustment-after that the headaches just seemed to get worse. The problem is that they seem to be located on the to/front part of my head and they I get a migraine on the top right sometimes. I also have a vice grip on my head at all times as if me skuil is dry and is going to crack or something. I can see why people become desperate and fly to south africa. What tests did they do to you to diagnose you? Thank you for your reply!

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  17. Hi All

    My boyfriend has been going to Dr Shevel for the last 3 months for treatment. Unfortunately, we have tried everything and nothing has worked. On Monday he will be going for the operation which will be performed by Dr Shevel. This is our last resort so fingers crossed that it works. Will let you all know if there is any improvement.

    • Hi Maria

      That sounds very interesting. Does your boyfriend have NDPH? It would be great if you could post back about his experiences with Dr Shevel’s operation. Best of luck.

      Bill.

      • Hi

        Yes Anthony does suffer from NDPH.

        He went for his operation last week Monday with Dr Shevel. When I drove him home Monday afternoon he told me how the constant pressure that he has felt for years in his head was gone. I can also report that for the last week he has not had a headache, at all. Fingers crossed!!!

        Will keep you posted as we need to go back soon for a follow up with the doctor.

        Regards
        Maria

        • Hi Maria,

          Thank you so much for replying. You know how it can be with forums – sometimes you never hear back if a person is doing well. I am delighted for you and, particulalry, for your boyfriend. It would be great if you could post back and maybe answer a question or two. I am considering a trip to South Africa to see Dr Shevel (I live in Europe) but my neurologist is skeptical and advising against. Hope all still going well. Thanks again.

          Cal

          • Hi Cal

            I would be happy to answer any questions you may have with regards to what we went through. Dr Shevel never gave us any guarantee that it would work, but as so many people are aware, when you are that desperate you will do anything to become a normal person again, even paying for the operation out of our own pockets due to the fact that our “Medical Aid/Insurance” refused to pay. I guess we are luck to live in South African and to have been blessed with Dr Shevel. From my perspective I have never come across a more kind and dedicated doctor (took all our phone calls on Easter weekend, even though he was on leave). In fact all the staff at the Headache Clinic have been unbelievable since Anthony started treatment with them in January 2012.

            Anthony had his stiches removed and the cuts seem to be healing nicely. We are keeping our fingers crossed that the pain never comes back.

            Maria

        • Hi Maria

          Thanks again for the reply. I am delighted that Anthony is doing well; it’s so rare to hear a positive story with this cursed condition. Thanks for the offer to answer some questions (as before, I live in Europe so making the trip to SA would certainly be a risk for me, financially). Don’t think you have to give cast-iron answers! All information would be welcome. You are certainly right about Dr Shevel being a generous doctor. He has emailed me on a number of occasions despite the fact that I live thousands of miles away. He seems to be an exemplary and compassionate doctor. Anyways, some questions:

          1. Had Anthony ever responded to migraine medication (e.g. triptans or DHE infusion)? These medications are vasoconstrictors, so I think a good response to them helps Dr Shevel in his diagnosis. I have had no response to any treatment.
          2. Was Anthony’s NDPH of the ‘standard’ sort: sudden onset, unremitting, bilateral, tenderness over certain parts of the head, bilateral, without migraine features (i.e. auras, photophobia, etc)?
          3. Did Dr Shevel diagnose a vascular or muscular component to Anthony’s headache? As I understand it, his surgery involves closing off certain blood vessels in the head/scalp. If the blood vessels are not the problem, he turns to muscles.
          4. What tests were done in advance of the surgery and what conclusions were drawn from them?
          5. How familiar was Dr Shevel with NDPH? It is, as I’m sure you know, an unusual and rare headache disorder.

          All and any other info very welcome.

          Best wishes to you and your boyfriend. I hope you have a headache-free weekend.

          Cal

          • Hi,

            I am also interested in the surgeries Dr. Shevel is doing. I am wondering what sort of side effects there might be, and what is the safety factor of closing off blood vessels. It seems to me like you need your blood to keep flowing through all the vessels… If you could explain this to me I would be very grateful 🙂

            ~Melissa

          • Hi

            I will try and answer these questions to the best of my ability.

            Cal hope this helps:

            1. Anthony has not responded well to any migraine medication for many years. He has tried everything imaginable without success. Dr Shevel did recommend things like Maxalt, Cafergot and Tramecet. The Maxalt and Cafergot he took while we were waiting for Dr Shevel to come back from Austria where he attended the World Congress for Controversies in Neurology.
            2. Anthony’s headaches/migraines have always been very strange to me. He does not suffer from vomiting, photophobia or any other symptoms that I have when I get a migraine. He explains his headaches as a constant, dull, pressure that is sometimes manageable and lately have been crippling. This has affected his work (been off work 2 – 3 days a week for the last 6 months), he takes a great deal of medication to try and “knock himself out” so that he does not have to deal with anything or anyone, especially the constant pain in his head.
            3. Dr Shevel diagnosed both vascular and muscular components. So they ligated the arteries where they cross the capsule of the temporomandibular joints, then they ligated the occipital arteries in the occipital area, the frontal arteries in the temporal area and the posterior auricular arteries behind the pinna of the ear. They then also cauterized one of the muscles on the top of his head that has a trigger point. Further muscles may need to be cauterized but that all depends on how Anthony is feeling in a few weeks.
            4. No particular tests were done prior to the surgery, although you have to remember that this was a last resort for us as Anthony tried everything else that the Headache Clinic had to offer. Prior to the operation they do blood tests and a CT Scan.
            5. How familiar the doctor is with NDPH I think you would need to ask him. In South Africa the basic advice you get from GP’s, Neurologists and others is – do some physiotherapy, eat healthy food, cut out stress, take a holiday, get a new job, take a pill and get over yourself. Not many people including Anthony and I had ever even tried to put a name to what he had, until we decided on the operation and like so many people I was sceptical about Dr Shevel and his cure. I was looking for someone on the internet to tell me that this was just going to be a waste of time and a great deal of our money. Unfortunately I found nothing to help us decide. So we took the plunge, like I said, we had nothing to lose.

            In response to Melissa’s question – Anthony spent 5 days at home after the operation. He has some muscular pain (which is normal after an op), some discomfort sleeping, as he has two cuts on either side of his head and two at the back. He takes anti inflammatories and that’s about it. Like he says, everything else he can live with for two reasons, firstly the headaches are gone and secondly the current side effects he is dealing with he knows will go away eventually. For a better understanding of what Dr Shevel does I would suggest you go to the Headache Clinic’s web site as this will explain everything.

    • Dear Maria,
      Can I ask you. Are you from the US? I am not sure but might have DPH or occipital neuralgia? Do you know if he does the nerve decompression there as well for occipital neuralgia?
      thank you ,
      christine

    • Hi Andree,

      I have had one course of botox injections. They made no difference. However, I am told it can take several rounds for efficacy. Best of luck with them.

      Cal

      • My 17 yr old daughter has had NDPH for 3 yrs we have as most of you have tried almost everything! Dentist, chiropractor for a year, CT scan, acupuncture, altered diet, many different meds, neurologist…nothing has worked ! She just had botox in June with no effect at all. They want her to go to a social worker to teach her to ” live with the pain” as they don’t think it will change. They are also talking of sending her to a psychiatrist for anxiety meds ? I am not so sure?? No wonder the poor kid is anxious it must be awful. I am at a loss…..interesting about the SA doc..look forward to hearing more.
        Concerned Mom

        • I think most people that have lived with NDPH for more than a year have also dealt with some degree of anxiety and depression. It is very difficult to deal with, especially for someone as young as your daughter. Learning to live with the pain doesn’t need to mean that you are giving up on treatment or finding a cure. The pain may not change for a while, so learning to deal with it is a good idea so that she can get back to living her life as best she can, BUT keep looking for a way to reduce the pain.

        • My 17 year old daughter has had NDPH for 3 1/2 years now and we have tried everything we can think of. She is now on anxiety/depression meds as she has been diagnosed with severe depression (as a result of chronic pain). I wouldn’t rule out anxiety/depression meds or talking to a psychologist.

  18. I tried Novocur injections last October in Scottsdale, Arizona. The commercials on tv claimed to help with migraine, tension, and cluster headaches. After two treatments with no pain relief, the doctor at Novocur said that he didn’t think I needed to spend the money for a third treatment since they usually see improvement right away. (My insurance will not cover anything to do with my headaches.) These are non-steroid nerve and muscle blocks, which I would assume, to be similar to botox treatments. The pain management experts at this clinic are used to having excellent results for many types of pain including fibromyalgia, arthritis, back pain, etc. With a local anethestic,they injected my head at the temples and base of the neck on both sides. Dr. Southwick, M.D., who gave the treatments was disappointed. However, he had never heard of NDPH so I gave him an article to read. No positive results of any kind to report. Terri L

  19. Hi all – there is so much information in this comment thread that I would like to put some of it in a full post so all of our readers can see it, particularly any information about the surgery. I will try to do this in the next few days, so please add any comments soon so I can include them.
    Thank you all for sharing your experience-
    Amy

  20. Maria, I don’t know why it won’t let me reply directly to you, but I hope you see this. I just wanted to say thank you very much for your response. I really appreciate that you took the time to think about it, and answer my questions.

      • Hi Maria

        Thanks you so much for your very detailed response. It was kind of you to take the time to answer my questions. It is great when people return to forums to clarify points rather than disappear. Anthony’s headache sounds identical to mine! If I win the lottery I will be booking a flight to South Africa.

        I hope he contrinues to do well; you might update us all on his progress.

        Best wishes to you both.

        Cal

      • Hi Maria,

        I was just wondering if you have any update as to your boyfriend’s progress following his surgery for NDPH? Is he still doing well? Has his head pressure/pain disappeared? I do so hope so.

        Any and all information gratefully received.

        Best Wishes

        Cal

  21. After reading these posts, I’m both saddened and relieved.
    Saddened that I will live the rest of my life with these headaches. However relieved to know that my life won’t be cut short due to it.
    Just keep faith In The Lord, perhaps the answer is out there sooner than we hope.
    I started getting my headaches July 2011. I remember the exact day.
    No flu illness prior. Just a random day. And headaches virtually everyday thereafter. at first it was so bad I had to cease all physical activity and pretty much stay in bed after work. After the 3month period the severity decreased, but remains constant nonetheless. I’m at least able to exercise and do my best to enjoy my life now, and I’m thankful for that.

    All the best everyone.

  22. Does anyone know if the procedure for the man in South Africa completely relieved his headache? also what does it mean about the headache in general if it did? i have ndph and i can also feel it in my sinuses, under my eyes, but there is no infection. let me know if any of you have this same symptom and know how to relieve it. thanks M

    • I have had NDPH for two years, and i have pressure around my eyes (like goggles would feel almost) and sinuses also, but no problems with either have been found. i’ve had a LITTLE luck with cold/ hot therapy for the pressure, but nothing that made it go away completely.

      • hi i know that you may have been tested for various infectious diseases but the pain you describe is exactly what i have, and it has been known in both bartonella and lyme to cause sinus pain (which less competent neurologists had identified as NDPH). the tests do not allows show up positive for these diseases when you take them thats why you need to find the right doctor to not give up on you. my headache was gone after 3 weeks of doxycycline now im still fighting the face pain for a year but its nice knowing ive got this doctor. check out dr lesley fein in NJ if you want to get rid of your pressure especially since your thing seems chronic like mine is.

  23. Good Day
    An update on Anthony is that it has been 6 weeks today since he had his operation. I am glad to report that he has not had a single headache for 6 weeks. He is however going back to the Headache Clinic on Thursday this week for a “follow-up” operation where they will cauterized some more muscles, as he still has the muscular pain. Hopefully after that he will be 100%.

    Will let you know next week how it is going, but this has really changed our lives for the better.

    Cheers
    Maria

    • Hi Maria,

      Thanks so much for the update. As you can imagine, those of us still suffering with this endless headache are very interested in how Anthony is doing!! What does cauterizing muscles involve? My neuro remains super skeptical unfortunately. Anyway, I am delighted to hear things are still going well. I hope the headache days are behind you both. Have a good week.

      Cal

  24. Thank you so much for keeping us posted.
    I am so curious about Anthony’s progress.
    100% sounds too good to be true!!! May it be so.
    Good luck and thanks.
    amy

  25. Hi All

    Just to let you all know, it has now been almost 6 months since Anthony had his operation at the Headache Clinic, and still no headaches 🙂

    Regards
    Maria

    • Just curious what is the cost of this surgery? I know that dependent on the patient it may be a bit different but just wondering if you could give us a ball park figure? We are in Canada so would have to budget in the flight, hotel etc etc… Thanks AG

      • Hi

        The surgery is not that expensive, the biggest issue for you would be that the Headache Clinic only do the operation as a last resort, which means there are other things they like to try out before they recommend the surgery. Your best option will be to contact the Clinic directly (web site: headacheclinic.co.za and email: info10@headclin.co.za) .

        Maria

        • Hi Maria,

          Great news re your boyfriend. Thanks for coming back online to let us know how he is doing.

          For international patients, the consultation and (if advised) surgery at Dr Shevel’s clinic costs around $20,000. So, it is not at all cheap. Patients would then have to add the costs of travel to South Africa, hotels, etc. The costs for South African residents are far, far less.

          As I understand it, Dr Shevel only recommends surgery if he diagnoses an arterial component to a patient’s headache. He does so by seeing whether the headache (his main focus is migraine) stops when pressure is placed (using a tight, hat-type device) on various arteries on the outside of the head. This does not sound like a particularly promising diagnostic tool for a headache type like NDPH (which is generally a constant, non-pulsating ache or tightness of varying severity), but there appears to have been success in the above case. Dr Shevel’s other main approach is to fit a specially designed dental splint. I can’t imagine international patients traveling to South Africa for that; dental splints, of all sorts, are offered to headache sufferers. I have not come across anyone with NDPH who has responded to them.

          So, the key questions are: (a) Does your headache have a strong arterial component? If so, it may have responded to triptans or to other drugs (IV- DHE) that have a vasoconstrictive effect (again, rare for NDPH sufferers). (b) Will Dr Shevel be able to accurately diagnose such through simple compression of arteries on the scalp? (c) Will ligating arteries stop the headache?

          Dr Shevel is extraordinarily helpful in advising patients and clearly believes that he has come upon a real solution for some migraine sufferers. NDPH is different from migraine, however. It is continuous rather than episodic and it is often very difficult to tell whether any drug or treatment is making a difference. Further, the issue of vasodilation/vasoconstriction is even more complicated in NDPH than in migraine. Most NDPH sufferers don’t appears to have a headache that is ‘vascular’.

          It would be great is Dr Shevel could advise upon, and a doctor in the US/Europe provide, the test he performs to determine if a headache has vascular components. A positive diagnosis made in the US or Europe might encourage some international patients to travel to South Africa for the surgery.

          Thanks again Maria for the update. Best of luck to you and your boyfriend.

          Cal

          • I have been emailing Dr Shevel in South Africa and he has quoted just over 11,000 rand which equates to @ $1,300 australian. I do not consider that expensive. Obviously accommodation and flights need to be taken into consideration.

      • Apologies for only replying today. Things have been really busy and life has started to go back to normal for us. Things have improved considerably for both of us, we are now able to do the things we have not done in many years, like walking our dogs on a regular basis. Anthony has even improved so much he will be starting his new job on 2nd April 2013. That is definitely a lucky date for us as it will be 1 year on the 2nd April since the operation and I can frankly say that if Dr Shevel had not done the procedure, Anthony and I probably would not be together any more.

        In December we were also privileged to help someone else from Cape Town in SA to come and stay with us for three days. We took her for her tests and also for her operation. It was truly amazing watching someone else go through this and come out at the other side with a positive outcome.

        Don’t get me wrong it was not easy, the operation itself is not the difficult part, it is being patient and allowing the body to recover afterwards, but it was worth the money and time.

        Wishing you all the very best.

  26. My son has been complaining of headache pain for almost 2 years now. He is 12, the thought of his having to go through life like this makes me both frustrated and mad. Have any of you people tried pain pills (Percocet, codeine, Vicodin, Diludid) if so, do they work ? i don’t want my son on narcotics but am wondering if they relieve the pain. Thanks

    • Hi Mark. I’m sorry to hear that your son is going through this. It must be very difficult at his age. I have, over the years taken some of those narcotic pain killers (Diludid/ vicodin), but they were prescribed for different things(like post-c-section and root canal). They did ease the head pain along with everything else, but not entirely. I wouldn’t want to continue to use any of them on a regular basis as they are highly addictive. I don’t know if you will find a doctor who thinks it’s a good idea to give them to a 12 year-old.
      Has he tried some of the non-narcotic pain killers? Unfortunately, most people with NDPH do not have a lot of success with pain killers in general.

    • hey, im 21, and I had a constant headache that was diagnosed by neurologists as NDPH and was unresponsive to any painkillers, and then after awhile I got a ton of tests done because that diagnosis was not enough for me. I tested positive for lyme and took the antibiotics for it and the headaches went away, then after that treatment i had constant face pain i got tested for all tick born diseases and came up negative, i had this debilitating pain for about a year until 4 days ago i got a blood test back finally positive for Bartonella, i start treatment today. do not give up, and get your son tested for everything, i had the top neurologists in the country in NYC and they basically sucked. many tests yield false negatives which is why I say keep trying and find a doctor who will do anything to get your son better, that’s what i found. good luck!

      • I am so glad to hear that you are finding your way out of this pain. I have so many questions for you! What was your Lyme treatment like? I was told that the treatment I was on would also knock out the coinfections such as bartonella. What doc are you working with in the NY area and what will your treatment consist of now? I have been off of antibiotics for 5 months and some of my symptoms are returning, including the headache. After a year and a half of antibiotic treatment, I thought I was done. I was pain free for a while (which was amazing). I am starting to wonder if there is more to this than my doc is catching.

        • it depends which antibiotics you took for that year and a half. if you took a typical lyme treatment such as a tetracycline like doxycycline it will not knock out bartonella, it does however help with other coinfections such as ehrlichia. my treatment is rigorous but that is because my doctor is taking into account everything, it accounts for viruses that come up as part of a weakened immune system, for chronic fatigue, fibromalgyia, lack of sleep and everything else needed for a successful treatment. Rifampin kills bartonella, i am also on doryx and one week a month i add tindamax. i am on an anti viral since lyme/bartonella had caused an activation of EBV and CMV in my body. my energy level is amazing compared to just a couple months ago before i had started the anti viral. the doctors name is Dr Fein in West Caldwell NJ, she is the best you will find in the area, but of course it takes awhile for an appt, but when I finally got mine, she spent 3 hours with me going over my medical history and symptoms and check up. it is definitely worth it, she has really saved some people. let me know if you have any more questions.

        • Dear Amy,
          My 14 year old son started having his headaches on Sept.12 2012. He is now on dococycline and singulair as suggested by Dr. Rosen. How many months were you on the antibiotic treatment before your pain was relieved and how many months did you have no pain. Regards Marli

          • I was on that combo of meds for about three months and I was not entirely pain free, but close to it for (if I can remember right) two months while on it and then a couple of months after. The intensity of the pain returned gradually over six months of going off of it. My case maybe slightly different – I’ve also been diagnosed with Lyme / erlichiosis (which the main symptom is a constant headache) and I’ve been on and off antibiotics for the past two years. When I go off of them, the headache slowly returns.
            I had trouble tolerating the doxycycline and only took that for a total of 5 months.
            I hope your son gets results soon.

            Also – I have been discussing a support forum / group for parents and teens suffering from NDPH.A counselor with very personal experience has volunteered to help. Would you have any interest in that?

          • Hi Marli. My 14 year daughter’s headaches began in October 2012 after what seemed like a normal sore throat viral infection. She just started the doxy/singulair combo today -along with topomax and amitriptiline. I am very interested in finding out as much as I can about your son’s case and how he responds to this treatment. Tomorrow she is getting her braces off and getting an mri and mrv. She seems to meet so much of the criteria for NPDH but they need to do these tests without the metal in her mouth to rule out the mimicking conditions. Her pain gets worse with change in head position which is the only thing that doesn’t “fit”. Her neurologist agreed to start the doxy/singulair. He seems confident that many adolescent cases resolve themselves within the first year. I am not nearly as optimistic so I pushed to start treatments. Thank you for your time – Denise

          • How is your son doing on the doxy/singulair treatment? My daughter was pulled off of those after a week when we had her hospitalized just before easter. IV valproic acid seemed to help for awhile but after 3 weeks of low pain – she had a pretty bad pain spike. We recently had her hospitalized again – her depakote levels were not built up to therapeutic value yet. ANyway, I believe you sent me your email address and I cannot find it- I am interested in hearing your son’s story and sharing any information about Natalie’s case that may be helpful. Hoping your son is doing better. – Denise

          • Hi Marli and Amy, my son has Lyme and co-infections and has benefited from antibiotic treatment in terms of most of his symptoms, but the headache has been constant for over 11 years now. I’m trying to get our LLMD to prescribe a course of Singulair even though I know it seems to be most effective when tried earlier…but he would be willing to prescribe if I could show him a study or evidence of what the protocol is.

            Do you know if Dr. Rozen’s study was published? I have heard that the dosing is Doxy 100mg/twice a day and Singulair 10mg/twice a day…is that the dosing that was used for you?

            We are thinking about trying to see Dr. Rozen, but some people are discouraging this since we know that he struggles with Lyme and co-infections. The problem is that he has never had a decent neurologist to be part of his treatment–only saw a couple who tried a few things or were downright hostile when they heard about Lyme.

            My son is 23 now. The headache got worse over a year ago and in order to keep working part-time and maintain some sort of social life he began to take pain medication. Of course, this is a slippery slope and he would like to stop, but the pain is unmanageable at this point.

            It’s so hard to watch our children suffer and my heart goes out to all.

          • I apologize for the delayed response. Yes, Dr. Rozen’s study was published. I have a hard copy of it and will try to track down a link to it online somewhere.
            I think it would probably be worth the effort to see Dr. Rozen. There is a possibility he could help with the headache and I think that is all that matters!

          • thanks, Amy, that would be great if you find a link! I will get my son’s history together and send it to Dr. Rozen’s office–I appreciate your encouragement to do so. It’s feeling like he’s reaching a critical point in his ability to cope.
            He is going to do a trial of low pressure hyperbaric oxygen–there is a pediatrician in town who has a chamber. It has reportedly helped with headaches in patients with Lyme and others with brain injury–worth a try. Will post if there are changes.

          • Just wondering if the hyperbaric oxygen therapy had any effect on the pain? I’ve heard a lot about this and suspect that it could be helpful…it seems like it *should* be helpful, in theory.

          • Amy,
            So far the jury is still out regarding HBOT…he’s had a total of 4 or 5 treatments and will have two more this week. Then we go back to his LLMD in NY at the end of the week. When we get back we’ll try to do 3 sessions/week–they recommend trying a course of 40.
            ….still considering Dr. Rozen, but found a local neuro who at least was sympathetic and is making a referral for pain mgt. He’s started a trial of Lyrica…so far makes him tired, but maybe helps with anxiety a bit. Rough times as the pain meds he’s on now are not effective.

    • Mark, my 13-yr-old son has had constant NDPH for 2 yr, too. Every drug has caused side-effects and no relief. Trying Nucynta which had a very brief effect, now increasing dose but not helping again at all. Undergoing aggressive tick disease treatment. Hypnotherapy and acupuncture helped somewhat. Please let me know if you find help. Saw specialists in 4 hospitals including Harvard, Georgetown U, Children’s Nat’l plus many other MDs, OD, PT, etc. May try that Dr Rozen. Please let me know if you find help. Thank you, and wishing you the best.

  27. i’m so glad i just found your blog. i’ve been living with ndph since the summer of 2006. reading this page made my eyes well up with tears because i totally understand all of this. i guess it give me a small amount of comfort to know that i’m not the only one with this same exact story. no one truly understands unless they live with chronic headache. every so often i will have flare ups, and right now i’m dealing with one. i’ve had an intense headache for the past 4 days & i’m struggling with whether or not i want to return to the doctor’s office(s). i’ve been getting acupuncture regularly which helps with my fibromyalgia (which appeared a few years after the onset of the ndph) but i get little relief from the headache. i can’t wait to explore your blog some more!
    -crystin

  28. I’ve been living with ndph since I was thirteen. I remember the exact moment of my first headache. It’s five years later and after tons of treatments, medications and procedures my headaches are no better and my body is suffering from side effects of the medication I have taken. I recently went to a chiropractor, might as well try everything, right? And learned that my spine is very crooked and my neck has completely altered itself to try and release some pressure from my nerves. I have had only two realignments with no change but my hopes are still high. I hope for the best for all of you guys.

  29. Pingback: Surgery for NDPH | Living with NDPH

  30. I am heartsick after reading many of the posts on this site. I have been searching the internet about headaches because my 17 year old daughter has had a headache for 3 months with no relief in sight. She has had blood work, sinus xrays, MRI, CT scan, lumbar puncture, and 2 sleep deprived EEGs. Both EEG’s showed abnormalities and she started to go into a seizure during the flashing light part of the second one. She had never had a seizure before and hasn’t had one since. She sees a neurologist and is being treated for migraine with Amytryptalyne (I’m sure that is spelled wrong) and a generic Topamax. The doctor is still trying to determine a cause for the headaches so my daughter does not have a diagnosis yet but her headaches seem a like the ones many people on this site have. The first one came on suddenly and was so severe that she came to me in tears and said that she was scared. We made 2 visits to the emergency room that first week. Her headache migrates over her head and somtimes it is tender to touch the spot that is hurting. My heart breaks to think that there may not be a solution for my child. I am sorry for each of you who suffer with this.

  31. I have just been diagnosed with NDPH. I passed out on Oct 28 at 4:30 pm and have had a headache ever since. After multiple tests, the neurologists at Cleveland Clinic came up with NDPH. The thought of this forever scares me. The whole month of November I spent vomiting, passing out, or just falling. I am functioning alot better now, just wear out easily. Is this normai? As much as I hate to see so many other people feeling my pain, I am so thankful that I am not alone.

  32. Just diagnosed this is a living hell. I do not want to manage the pain I want to be cured. No one really gets it. It is like the person parking in the handicap parking space with no visible disability. I don’t want pity I want to get better.

  33. I have lived with my daily headaches for 6 years this April. I feel exactly like you guys. The dimmer that is turned up and down, but never really gets turned off. My neurologist have told me she thinks I might have ndph, but she tries to treat me with migrenes medications. I have tried botox without luck.
    I do believe I do have ndph, but I am not going to let myself believe I will have this every single day for the rest of my life. I hope none of you believe that either. Never loose the hope that you will get well.

    I am very interrested in how Anthony is doing Maria? It’s almost been a year, and I pray that he is still doing well, totally free of his headaches?

    I also live in northern Europe Cal. Have you had any good neurologists? I do have one now finally that actually takes me seriously. (Nothing hurts more than a doctor giving you a box of paracetamol, pats you on the shoulder and says she hopes it will be over soon… This is not a 3-day headache… )

    I want to thank you all for helping me feel I am not alone in the world by sharing your stories. Also I do hope that we all will find a cure so we can break out of this daily invicible pain.

  34. HI All

    Well It is interesting to read this page. Some people it seems are being diagnosed incorrectly or diagnosing themselves incorrectly based on the requirement of the diagnosis NDPH. Having a headache for a long time is not NDPH. Please, I am not trying to stir trouble, but if you read the symptomolgy of this headache, you will see what I mean. In addition to the list below,. MOST can say exaclty when their headache started.

    A. Headache that, within 3 days of onset1, fulfils criteria B-D -( I dont know what B-D is…)
    B. Headache is present daily, and is unremitting, for >3 months
    C.At least two of the following pain characteristics: 1.bilateral location
    2.pressing/tightening (non-pulsating) quality
    3.mild or moderate intensity
    4.not aggravated by routine physical activity such as walking or climbing

    D. Both of the following: 1.no more than one of photophobia, phonophobia or mild nausea
    2.neither moderate or severe nausea nor vomiting

    E. Not attributed to another disorder

    So reading this and to read people having sharp stabbing headaches at a very high level of pain is not NDPH. People who say they are physically ill with the pain is not suffering from NDPH. Having a headache on and off a few time s a month, for many years is not NDPH.
    I comment on this as I do not want this to be the new catch-all phrase that is used to encompass anything that we or Dr.’s or psychologists cannot explain, like ADD, and fibromyalgia, and migraines. Please do not assume that you have this, because you dont know what else to call this pain.

    Have you noticed that there are very rarely people who just have headaches any more. It is always a migraine. Those people diminishes the suffering of those that really do have migraines. I have never had one, but I have heard how awful they are.

    No. I do not have a migraine. Migraine meds do not help. NSAIDs and other over the counter drugs do nothing. I take no pain medication, as there is absolutely no point. They are useless to me. No, I do not have sharp stabbing hide in the bed under the blanket, needing dark and quiet debilitating pain. My pain and those suffers of NDPH, have pain all the same. The difference? Ours doesn’t go away… EVER. Not for an day, and hour or a minute. It is always there, but at different intensities. Sometimes its a 1 and others maybe a 5. It doesnt often go above a 5. However, after living with a headache everyday 24 x 7 x 365 the 5’s soon become 3’s, because you get used to it. You have to get used to it, because there is nothing that takes it away.
    I have been seeing a renowned headache specialist in BC, Canada for nearly 3 years now, after having visits to all the other specialist with no success. ENT, Psycotherapist (et al), Op’hthamologists, Dentists, Chiropractor, RMTs, Acupuncture, DTMT, etc etc etc. No one could explain this headache that started on October 1st 2008, and never wants to leave my side. No one will give me an MRI as they say it won’t find anything, even the headache specialist – Neurologist.
    OK. so the Neurologist said NDPH has a specific set of symptoms. You have them all. This is what you have, I hate to diagnose you with this as we don’t know what causes it and we don’t yet know how to cure it. Great! We know how frustrating it is, and we know how nice it is to have a name of a “disease” or a title to call our pain. Not that this is a title I want to tell people when they ask, as it sounds like something someone made up one day in the playground. Nevertheless, it is what I have.

    Currently I have been using Botox to assist in pain management and increase functionality so that I can work full time, and concentrate, multitask and live with headache pain all at the same time. My neurologist said Botox in migraines in about 90% effective. In NDPH it is a 50 – 50 shot. I got lucky and it is working. It doesn’t get rid of it, but it doesn’t fluctuate past a 1 very often. That s nice perk to a $400 drug given 27 times by needles in my scalp, back of neck and shoulders every three months. It takes up to 2 weeks to work, so If you tried it and didn’t get anything.. wait 3 weeks, before you assess next. I figure, nothing else works why not try it.
    If anyone hears of a real cause that does not involve cutting the tail off of a snail or the horn of a unicorn, and the eye of griffon. Please share it.

    Oh, one more thing, no god or deity of any religion would deliberately cause pain to those ‘he/she/it” created, just because they didn’t worship, and to those who do worship, I have never seen one that has never fulfilled their life so far, pain free.

    Please do not trivialise us or our pain!

  35. I don’t know why you think that someone is trivializing the pain of NDPH. I was diagnosed with NDPH by multiple neurologists, including the most well-known NDPH doctor in the world. I had a fairly textbook case, and yes, sometimes I had stabbing pain. Many people with NDPH also get migraine type headaches in addition to their normal, daily headache. To say that they don’t have NDPH because of it is not really correct. I think that NDPH can be a bit of a catch all – whether or not we want it to be. It is caused by different things for different people -some a sinus infection, some stress etc.
    My head pain was constant for 5 years, until I began antibiotic treatment, which afforded me a break for a few months before it returned. If you read my story, you will see that NDPH was actually caused by Lyme in my case and the only thing that keeps my pain away (still) is antibiotic treatment. I know of several other people in the exact same situation.
    We are each struggling here and this site is about supporting each other through this pain, so please be mindful of that.
    .

    • the person who is blaming god or telling us to seek god for redemption of pain is the trivialiser. No-one else. I beleive you chose one statement out of context and applied to the entire post. I am completely and 100% in support

    • There seem to be some posts missing of an American girl whose father is a physician that has gone to South Africa for treatment. Do you have her contact info? Regards Dr. Marli White

  36. Hello everyone… My daughter (14) was just diagnosed with NDPH this week. The only thing that hasn’t been ruled out is psuedotumor cerebri – she has a neurosurgery consult this week to see if the lumbar puncture is worth doing. The only criteria she meets for that is increased pressure with change of position (bending over to read or brush her teeth and generally worse pain upon waking up). Her headaches began in October after a sore throat and case of laryngitis, however, she was functioning well without taking otc pain medicines…describing a pressure in her head from temple to temple across her forehead. In November she had a much worse headache that landed us in the ER… After 4 days the headache became dull again and she was functioning until the end of january (another couple days with intense pain). The intense pain came back 3 weeks ago.. she was prescribed maxalt and it seemed to work (0-1 on pain scale) for 3 days. Assuming migraines, her pediatrician also started her on topomax. Then during a volleyball practice she got extremely week and dizzy and the intense throbbing began… This time maxalt did not help at all. We were in the ER 2 days in a row and my awesome pediatrician got us an appt with the neurologist within a week. I had never heard of ndph and am devastated that so many of you are suffering and that she could have this lifelong struggle. Her pain level has been between a 4-6 for the past few days and tourdall helps take the edge off it the throbbing starts. What would you consider the most aggressive/reasonable treatment to start with? Is there a site where I can find tx success statistics. I have been reading so many different things – my head is spinning. I am absolutely terrified, but I truly admire your strength and hope. We live in Pa. and I am thinking of going straight to Dr Rozen once we are certain that this is her diagnosis. Does anyone know how long it takes to get an appt with him? Thanks so much! -Denise

    • I would go straight to Dr. Rozen, if you can. He is the most up to date on treatments. Unfortunately, NDPH is difficult to treat and I don’t know of a treatment that has worked well for a large percentage of patients. Topomax is the first thing they give everyone, and I don’t know anyone who has had any long term success with it.
      I’m so sorry to hear that your daughter is going through this. I am working with a counselor and hoping to set up a support group or online forum to help parents and teens learn to cope. The counselor is a mom whose son has had NDPH for many years now and I think she maybe able to help many of the people that visit the site. Would you be interested in participating?

      • Re: Topomax… I was given that as well as one of the many perscriptions to try and immediately had photophobia so bad that I had to wear sunglasses even indoors. It was really bad, and at the time I didnt not realise it was from this drug. Within 2 or 3 days of being off it, that side effect subsided. If anyone else has this awful symptom, perhaps take a look to see if it coincidedes with this drug. Maybe you can get rid of it as easily as I was able to

      • Sorry it took a long time to reply. I would be very interested in speaking with the counselor whose son has NDPH for many years. Regards Marli

  37. Hello again… I just contacted Dr Rozen’s office and was told that he does not see patients under the age of 18. I feel a little heart broken. The doxy/singulair combo is giving me some hope… I am going to push that at her next neuro appt. Her headaches began after a viral infection in October. Did anyone else have the experience of each “episode” of high pain levels getting worse and longer. Did anyone initially get some relief from otc or prescription migraine meds (maxalt). She functioned with mild pressure for almost 2 months before the first high pain episode came. Sleep cycles seem to be a trigger for her… is that normal in ndph? Thanks again for your time! I hope you are having a low-pain day! xoxo- a desperate mother

  38. I have 2 daughters who have suffered with headaches for years now. My oldest is 25 and has migraines, cluser headaches and tension headaches almost everyday. She also has TMJD which is usually what Dr.’s will blame for all her pain. Recently she has discovered (on a support group) that the tingling, pain and numbness she gets in fingers, hands, and arms along with memory issues and twitches is related to migraine auras. Luckily she gets some minor relief with otc’s and decent relief with Maxalt. She also just discovered that a 4 month break form her birth control pills cleared up her migraines by about 70%!. My youngest daughter has just turned 19 and has a headache of some degree every single day (for the last 5 years or so). Dr.’s seem to think she is a tad dramatic and exagerating the frequency or number of headaches. It has never been considered by a Dr. that this might be NDHP. I am beginning to think it might be. My youngest uses amitriptyline and seems to get some relief with the frequency of migraines that pop up. She doesn’t even bother with otc’s anymore as she has to take mega doses to have any effect. My youngest has had some success with chiropractic care, massage therapy and her physiotherapist can put her into such a deep state of relaxation that all pain goes away while on the table (I think she does CST – cranial sacral therapy)…sadly she can’t take them to University with her. My girls are both sensitive to gluten and dairy (but can’t seem to be strong enough to stay away form them…they do notice symptoms improve when they regulate that intake). Both of my girls are also being investigated for EDS &/or Hypermobility Syndrome. They both suffered pretty bad concussions growing up and Dr.’s often blame the head trauma as being a likely possible source even though CT’s have ruled out damage. They also point to the fact that I had debilitating migraines for about 3 years as a young teen. I am interested in the parent and teen site you are putting together Amy and have found this to be a good source of info. We do not have a diagnosis of NDHP, nor at this point (we live in a really small town with the nearest large centre being about 7 hrs away) are we pushing for one….as my girls seem to have found things that can alleviate their pain and help on those bad days.
    Thank you all and I pray you have success in the treatments you seek.

    • I was wondering the about the different type of headaches people have that have been told they have ndph. I never have a headache in my temples or forehead on occasion it will move towards the eye. I do get shooting pains in one ear a few times a day ( this is new the past couple of days). My headache birthday is 3/10/2013 so I am pretty new to this. But I have read from posters to head it hard the first year. I have been to er twice had MRI and lumbar (lab lost my sample) . But pressure was fine and sample was clear. Back to the feel of your headache mine is usually on the left or right side of my top back part of my head. Anyone else have a headache like this. Feels almost like electrical zaps. My heart goes out to all of you. Really appreciate a place to share feelings and thoughts.

      • Hi 🙂 I have had my NDPH since 10/28/13. The pain is mainly in the front of my head. Varies left and right in severity. And varies everyday in severity of pain. I sometimes have the electrical zaps to go along with the constant ache.The zaps usually hit me in my temples. All of my tests (MRI, EEG, CTs, spinal taps etc) all come back clear. Just watch taking anything for the headache due to rebound headaches. Not sure if a doctor has forewarned you about that yet. They didn’t tell me that until I went to Cleveland Clinic. It does make a difference. I hope you get the care you need and please don’t get discouraged. Take it day by day. I get down sometimes but life goes on. I am really trying to stay positive about everything. GOOD LUCK and I hope all stays well with you.

  39. On 9/11/12 at 7:30 am I started my journey with what has now been diagnosed as NDPH. I have been on 37 different medications. I seemed to have manifested all the side effects from each. My most recent medicinal foray has been Botox. This has not worked work me. I started to see an Eastern Medicine Doctor. He is stating I am allergic to soy and gluten. Anyone with similar results? Any luck? Trying acupuncture now. Readying for permenant disability and feel like a complete failure. I am 48 years old and this is not how I ever envisioned my life.

    • Please don’t feel like a failure. That is what I am dealing with too. I am only 34 years old and contemplating disability. I just lost my job for missing too many days. I am doing Botox ( so far no luck ) topomax and doxycycline. I am about to do a 3 week outpatient “pain clinic” in Cleveland which is just going to teach me to live with the pain. I am bummed out about how my life has turned out to be but I am still trying to make the best of it through the pain. Its not your fault the headaches started and I understand the Failure part. It just makes me so sad to see people feel that way because I am trying everything not to. My headaches started close to yours.. 10/28/12 at 4:30pm. Its been a rough road. I pray for everyone with NDPH. Its a tough illness… and it makes you a tough person. GOOD LUCK with everything…
      Jo

      • My sister spent a lot of time going in for pain management (for a different issue, but chronic with no effective treatment), and she found it very useful. She was unable to get a lot of daily tasks done, and after her pain management, you wouldn’t even know she was in pain most of the time. Life just seems easier for her now than it was before. Hopefully yours will be as successful! I’d also like to mention that there is hope for you. I got my headache in Sep. of 2010. I tried to keep working for about 9 months, and then was unable to for a full year. I started going to school with a minimum workload, and after 3 months of school, my headache disappeared as magically as it appeared. So, after about 2 years of constant grinding headache, I did get relief!! I was headache free for two full weeks, and then found that I am now a person who gets headaches often (which I was not before), but I do not have the constant incessant pain I had before. Have either of you tried Yoga? My schedule required a PE credit, and I opted for Yoga since it was more mild than any other class. It was a beginner class, and focused on stretching the neck and back muscles more than anything else. I always felt like I was in less pain than usual after Yoga, and I’ve wondered if it played a part in alleviating my headache more permanently. People have harped on me about being on assistance, because they don’t understand how much the pain really does disable you. But, it really does not mean that anyone is a failure (besides that, your previous taxes added to the funds for disability anyway). Keep up hope! 🙂

  40. My headaches started on the 9th of January 2007 when I was 14 years old. To start with nobody really believed me. My doctor told me that I had a common cold and to ‘soldier on’ but I knew that it wasn’t a cold. Eventually I was rushed into hospital for countless scans, blood tests and 4 spinal taps. My consultant misdiagnosed me several times and pumped me full of medications that had little or no effect. I was then transferred to a specialist unit in a different county where an inter-cranial pressure monitor was fitted inside my skull and eventually they concluded that I had normal CSF pressure and they sent me home on Tramadol (an opiate). I was on this for 3 years along with Gabapentin. I chose a different neurologist as I felt that my first one had run out of ideas and he suggested that I may have an analgesic headache alongside my normal headache, so I went cold turkey and came off the Tramadol. I couldn’t sleep for several months but it was the best thing I ever did. I was stable for several months with no severe attacks (just with what I call my ‘base headache’), so I decided to try to cut down the Gabapentin as I don’t want to rely on drugs forever. I dropped a couple of them a day (from 6 lots of 300mg to 4 lots a day) and then I noticed I was having frequent bad attacks so I increased it by 1 again. Today I fainted in a lecture at Uni for no obvious reason. I think it may have something to do with the NDPH but I’m not sure. Will probably have to go through tests all over again 🙁 Has anyone else fainted with this condition before for no reason?

    • Hey there, I was fainting quite regularly for a while, and then my neurologist found that my blood pressure was high intermittently (so it might not happen to get noticed in a regular check up). He put me on medication to regulate my blood pressure (a mild dose), and I was only on that for about 6 months, and then stopped it as a test (because I don’t like having daily medications), and haven’t had any trouble since. He said that the blood pressure medication is also commonly used to treat headaches in general for peeps without blood pressure issues, and that the blood pressure issue is common with NDPH. I can’t remember what the medication was called, but your neurologist would probably know.

    • I fainted first then the headaches started. I fainted 3 times after that and would just get weak band collapse. They never did figure out why. I thinking was my body getting used to the pain of the headache and the weakness it was causing. My whole body went through changes. But I would have them do all the tests first. My tests just didn’t show anything. Good luck.

  41. After 37 years of headache pain, I have sure tried many different avenues.
    As far as some of the different treatments and avenues that have NOT worked, here’s my list: Acupuncture, Migraine and Depression drugs, Chiropractic, Massage therapy, Cranial massage, MRI’s, X-rays of the skull, Nose and Sinus Specialist, Allergy tests, TMJ Specialist, Internal Specialist, Biofeedback Specialist, Novocur injections in temples and neck. Most recently, a Nutritionist who said that food is not a trigger, (after 8 months of care) although the residual effects of chronic pain on my body causes me to not metabolize gluten very well. Initially, my nutritionist thought that I had Lyme Disease, and said that many of my internal readings pointed to that. Then, after a few months of supplements to correct some things, she said she could rule out Lyme Disease.
    I haven’t been able to pursue some of the ideas I now have. I would like to see a neurologist that specializes in low level Cerebral Spinal Fluid Leaks.My nutritionist thinks I should have that checked out, but I’m afraid to pick someone out of the phone book to do a spinal tap to find out. Does anyone have any suggestions? I realize that a classic symptom for CFS leaks is that the headache goes away when you lay down, however, my does not. My nutritionist told me she met a lady, briefly, in Washington DC that had the same non-stop headaches as NDPH sufferers, and she DID have a CFS leak. She also had said that her headache did not go away when laying down. I guess there was a surgery done to make a type of net support at the base of her brain, and her headaches were gone immediately. Unfortunately, that contact seems to have gotten lost.
    Who can actually give a diagnosis of NDPH? That would be so helpful to be able to get on some disability. I can only work part time due to the lack of energy and ability to focus. I need to find a doctor who can help me with that. I live in Arizona. No insurance. Terri L

    • Hi Terri,
      I have tried much the same as you, but not all as of yet. My neurologist says that I got NDPH and I got mostly the same symptoms as most that has written posts here. Constant headaches that varies in pain degrees ALL the time.
      I was actually with another neurologist last Monday and he believes it might be too much spinal fluid pressure in my head. He has set me up for all these tests, but the waiting lists at the hospital is very long, so I’m guessing for some months waiting time. I also have headaches lying down, it even often gets worse lying down flat. Excpecially when lying on my stomach for massage etc. I’ll let you know if this is my cure, but don’t hold your breath because I know this will take time 🙁 … Compared to you I’ve only had headaches for 6 years this April so I know you’re patient.
      I hope you get the doctor help you need. I live in Europe, so I wouldn’t know.. Sorry…

      I hope you all will find your cure for your headaches, and I hope that when you find it, you will share the secret with us others 😀

      Stay safe
      Hannah 🙂

    • Hello. Dr Linda Gray Leith at Duke University Medical Center is an expert in CSF leaks. She is an incredible helpful and kind person. I highly recommend speaking with her. Good luck.

  42. Thank you, Hannah, for your thoughtful reply. I will be eagerly awaiting your results on the spinal fluid check. I know this doesn’t show up on a regular MRI, and I truly feel like my head has so much pressure that it just wants to explode! I am drug free because I have been the route of “rebound” headaches from taking too many over the counter drugs years ago. The prescription meds never helped. Now, it’s a few aspirin only once in a day and when the headaches are too intense at night to go to sleep, I take an over the counter drug called “Percogesic”. It has an analgesic in it that helps me get to sleep and usually helps to break the intense level while I sleep. If I don’t take the Percogesic when my headache is really bad, I will wake up with it the same horrific intensity and have a terrible day from start to finish! As with all the NDPH sufferers, I am never without pain in my head. I do not take it every day. Good luck with all your days to come and finding the answer to your pain. If I ever find out the cause of my NDPH, you can bet I will be telling everyone on this web site in big capital letters! Terri L

  43. I think I have said this on this site before, but I am inspired to repeat it.
    Dr. Rozen put me on 3,000 mg of Salsalate.
    It is a drug that at this high dose seems only to be used by Arthritis sufferers.
    Dr. Rozen put me on it 2 years ago. My usual Neuro would not prescribe it even though Dr. Rozen thought it might help.
    My insurance would not cover an “Out of State” prescription when they said they had plenty of Neurologists in Massachusetts. So a prescription from Dr. Rozen would not be filled.
    I was able to find another Neurologist in Boston who is willing to prescribe this high dose of Salsalate. She is a fabulous doctor and cautious in her own way, but she is willing to try “Non-evidence-based medicine” which the other doctor was not. When it comes to NDPH there is no evidence based solution, and if there ever is it will probably come from one of US!!!

    Salsalate has helped more than anything else.
    It brought my headache (And accompanying features of this disorder like fatigue, cognition trouble, and depression) from a 6-7 to a 3-4 in an ongoing way.
    I am also on a HIGH dose of Wellbutrin. 450 mg. This combination, though I’ve not seen it anywhere else, is helping keep the headache around a 2-3. Like all of you, I have serious spikes in pain that bring the pain and accompanying symptoms right up to an 8 for parts of many days, but this is not where I live anymore.
    I lived there for about 2 and a half years. HELL. Jesus did not come and save me.
    Check out SALSALATE if you haven’t. I imagine the long term effects on liver and kidney and stomach lining are very poor. I just don’t give a darn. When you are on fire all you want is to put the fire out. NOW!!
    Good Luck to all of you.
    I am sorry for all your suffering, and I can’t believe that so many of us hurt so much and don’t die.

  44. I have tried yoga. I did really like it. The relaxation of it was amazing. But I can’t do it all the time. I wear out too easy 🙁 but when I feel up to it I for. And I will let all know now pain clinic goes really looking forward to it ! Thank you so much Lisa for your input!!

  45. Hi again,

    I went to the doctor after I fainted and normally my blood pressure is abnormally low but this time it was abnormally high (almost twice as high as mine normally is). This shocked me but the doctor wasn’t overly concerned (but she didn’t know much about ndph or the drugs I’m on). After what you have said Lis it has made me think I should look into it further with my neurologist. Thanks for your help 🙂

  46. I can’t believe I’ve only just found this information about NDPH. My headache date is May 1999…fourteen years this month I most closely relate to Terri L. our unfortunate 37 year sufferer. I have tried virtually all of the things she mentioned and more. I have never had a diagnosis but I haven’t been to a neurologist for 7 years. They just waste my time and my money. The first one, a headache specialist, told me I was “just depressed and needed to see my psychiatrist and have my depression better treated.” Of course I was depressed. I had been in constant pain for 6 years at that point! I do not take medication because none of them ever really helped. I was on anti-depressants for a long time but weened myself off and have been completely med free for almost a year. I take lorazepam now and then. My life has gone on but in a completely compromised way. I can’t even begin to share the sense of loss I feel. I think I remain amazingly upbeat and functional for my condition but I go through life in a foggy painful haze with no relief, only occasional really good days that give me hope. Nobody really understands. I think after so many years I need to talk to some people some times who understand. I have always hesitated to get involved in online forums or even in person support groups because I didn’t want to be around the subject so much. It seemed so depressing! But I think I need it now. Does anybody ever participate in a telephone support group? Thank you to Amy for starting this site. Donna S.

  47. Donna, your blog on May 19, 2013 just brings me to tears…literally. What can I say, but your life seems to parallel mine perfectly,other than my suffering has been longer. I agree that no one around us ever really understands what we all suffer through each day. Of course, the doctors all try to make us feel like we are the cause of our own symptoms, but in our case, I can’t imagine that being true. I truly want to be a fully productive person in this world. Most people around me have no idea how my daily pain effects me since I’m good at “pushing” through it and staying busy. That’s my only way to not think about the discomfort in my head. But as you said, compromise is the rule. I don’t take any medications either. None of them work. I’ve been to several neurologists in the past and even the headache clinic at Barrow’s Neurological in Phoenix, AZ. They all just push the drugs with no effort to find the cause. At least we now a a “term” for our affliction with NDPH. That’s a start. Thank you to all who are willing to participate in this blog site. This is the only place I have ever gotten supportive info. Thank you, Amy, for starting this platform for of us all to share. We can never give up hope! Terri L.

  48. Thank you for your response Terri. I appreciate the affirmation. I’m wondering now whether I should seek out a doctor who can/will confirm my self-diagnosis. Right now all of my treatments are alternative. I found a holistic pain doc who treats fibro, CFS and the like right here in my city, Cincinnati. I found him when he was mentioned in a book by another doctor, but I haven’t seem him yet. Or I could see my family D.O. and just tell her to give me this diagnosis! I might have to tell the other doc, too. Apparently this is not a widely known syndrome/disorder. I now want to go tell every practitioner I have ever seen about this so if they ever get another client/patient like me again they might have some idea of what’s going on. I’m also curious about how “rare” this disorder actually is. I’m looking forward to learning more from all of you….

  49. I would LOVE to have a doctor give me a diagnosis of NDPH, but no doctors around here have ever heard of it. Any new doctors, clinics, therapists, etc. that I go to, automatically gets a copy of the Wikipedia definition that I print from the web. I hand it to them! That’s the only way we can get the medical practitioners educated. It seems to be up to us who suffer. A diagnosis could mean that I have a valid affliction and perhaps some open the door to some assistance from Social Security since it’s impossible to work full time. Terri L

  50. Hi Hannah,

    Apologies for the delay in reply.

    I have a good neurologist, who is a headache specialist. Essentially, however, all nuerologists will run through the same list of migraine drugs and hope that one helps. They do not have much more to offer, as they don’t really understand why headache persists.

    If you can get to the UK, Professor Peter Goadsby, widely regarded as the world’s leading expert in headache, holds a montly (private) clinic at the Royal Free Hospital. He is mainly based in San Francisco. I guess if you go to see him, you can at least be sure that you have been examined by someone truly expert in intractable headaches.

    Best

    Cal

    • Favorite headache question: how many times a month do you get these headaches?

      Favorite answers: oo (infinite), or just when I am conscious.

      After ur neurologist has sufficiently tried all the migraine meds and epileptic drugs, they then prescribe Percocet and are confident that you were a junkie or just didn’t want to work. Even after you describe yourself as an aspiring executive with dreams …… Even the good ones really don’t remember the details of your case until u jog their memory and give them enough time to read your file that they haven’t touched since the last time you were in their office. It is very deflating.

    • I have seen him for about 4 years before he went back to the UK for further studies. Now I see his replacement at Ucsf Dr. Riggins she is great. They will try about anything. Along with multiple meds and nerve blocks I have had about 6 infusions of different types of meds. None have worked so far but I back in on the 27th for another one.

  51. hi amy,

    i’ve been in constant headache for almost 2 years now, the first week i was feeling headache and nausea at the same time. i thought i was pregnant then but it continued for more than a month. I went to different doctors, took different medical exams and test but all are negative.

    now its been 2 years, sometimes it is high sometimes it feels like its low. For 2 years i have learned to live with it, and I dont even know what it feels to feel normal and ok again. It is persistent when i constantly move my head and eyes, when in motion, when super stressed out, when my back hurts, – it is then accompanied by palpitations, and sometimes nausea.

    Now i wanted to know what really is happening to me… it adds up to the headache when i over think what is wrong with me, and i dont know what specialist to go to. now i came across your site, and what you have defined matches my woes.

    can you please kindly help me? i need to really know if I am experiencing NDPH? which specialist do i need to go to? is there hope for this? i mean i cant even exercise regularly when this strikes…please help me.

    thanks so much!!!

  52. My daughter, age 13, has been diagnosed with NDPH. We went to New York City to a headache specialist to get this diagnosis. It is very expensive for us to go to NYC. She had strep throat in 5th grade with unusual symptoms (headache and stomach ache) no sore throat or fever. The headache never went away!!!! She has had a headache for over 2 years now. We have seen many doctors who always tell her she had a migrane but noting gave her relief. We are near Rochester, NY? Any advice on doctors? How are young teens with NDPH able to go to full time school? Any help would be appreciated.

  53. Hi everyone. My heart goes to all of you who have suffered so much and for so very long times. And particuparly to those kids that are suffering with this at such a you age. Everyone should be entitled to live fully during that part of life.

    I’m 24 from Portugal and my headaches started about 3 months ago. I remeber the exact moment when they started. They are on the top of my head and never rly go away altought they’ll often be a 1 or 2 and rarely get past a 4.

    Altought I have this for such a small period of time(compared to some people on this forum), it seems that it has been a lifetime and i’ve exausthed most of my options. Altought I haven’t lost hope that one day this will go away(either by some treatment or by miracle, but until then I want to focus on how to maximize my hapiness and not get depressed.

    One thing that seemed to work for me(reducing a bit the intensity of pain but not the frequency) was the trigger point theraphy workbook. I think all of you should try reading this book,since it’s easy to understand and there’s a relatively good chance(in my unexpert opinion) that at least some of your pain might be due to trigger points in muscles(some of mine was).

    I’ve also started doing yoga(real yoga not that burn-the-maximum-calories-yoga that you see in some gyms) yesterday and I was able to feel rly relaxed during and afterwards for some time (which unfortunately is quite rare for me). So I’ll be trying this some times a week to see if it can help me relax on a frequent basis and I would recommend you to at least give it a shot s well.

    I read all the posts in this page and they got me a bit down, since I was expecting someone to say that altought they have their hard times they are able to enjoy life most of the time. I’d like to see some people sharing their good moments (or at least how often they have them) since that would cheer me up a lot.

    I for one have had some good moments during this months which lead me to believe that my life is not over and many of those should happen in the future. Some of them were with my girlfriend when we sing and dance and i just forget my problem for a while. Some of them were while exercising which sometimes helps me relax. Some of them were with friends (that are not aware of my problem since I’d rather keep it to myself until I feel I’ve fully accepeted it and can talk about it without starting to cry). Some of them were alone in the evening when I feel more relaxed.

    I sincerely hope pain is gone for all of you soon, but if that doesn’t happen I hope you still can have good moments in life and that

  54. I mistakenky clicked post comment before finishing my post.

    As I was saying I hope you can have as many good moments in life as possible, because otherwise life in pain can just become unbereable.

    Once again I ask that some of you post some positive things in your life, that can give hope to all of us. That being said I’m obviously interested in hearing your experience from trying different drugs and treatments as well.

    Wish you all the best.

    André

  55. I’m sorry for the spamming, but there’s a couple things I wanted to add.

    One is that you should take a lot of pride in yourself. Especially when you achieve something that required effort(i guess everything requires at least some effort for us), when you take good care of yourself or do something to help someone else.

    For example i like to cook heatlhy for myself and exercise regularly since I feel that this should not be an excuse not to take good care of myself and I want to minimize the chances of this worsening or having to live with multiple tough conditions.

    Then I wanted to ask you how you manage your relationships with your family and friends, especially those closer to you. I feel that I’ve been kind of dependent (emotionally) on my girlfriend since this started and altought she has been super kind, understanding and supportive, I want to stop it since I know if I don’t toughen it up and stop crying every day she will eventually grow tired of being with someone that is sad so often. I obviously als think that being dependent on anyone in any way is a good thing for me. So how do you manage this kind of things?

    André

    • Hi Andre,

      I know I am replying rather late to your comment, but I wanted to address your questions on a day when I was feeling positive and optimistic. And that’s NOT everyday. 🙂
      Handling relationships while you are suffering is really challenging. Marriages have broken up as a result of NDPH and other chronic illness. I am not an expert, just a survivor I guess, and I think that the best thing you can do is take care of yourself as best you can and work out the anger / depression that comes along with this illness. Talk things out with a therapist that specializes in coping with chronic pain, pray, meditate or do anything that you think will lift your spirits and help you feel a little bit like your “old” self.
      I don’t think that toughening up (as you put it) should be your goal. Work through it as best you can. The toughening up happens over time naturally (trust me!). You are dealing with something huge here. You are allowed to mourn what you have lost.
      You will see who really cares about you through this process. My best friends at the time my headache started are now no where to be found. Many people have pulled away, or just plain walked out of my life because they couldn’t understand or cope with MY PAIN! Isn’t that strange?? It seems like a curse to have this happen, but knowing who you can really count on in this world is a blessing.
      Hope you are having a low pain day today,
      Amy

  56. I need help. My headaches have consumed my life. I am taking so much Excedrin Migraine, Ibuprofen and Tylenol that I am most certainly causing myself irreversible liver damage. Who can I see in Ohio? What meds can I take? I am at a loss. This most recent headache has been present, consistently,for 28 days. Thank you.

    • Sorry for the delayed response – have you found a neurologist in Ohio? I was hoping someone would chime in with a recommendation…if you are still looking for a doctor, reply to this again and I will try to track someone down in your area.
      Also, if the excedrin and OTC meds are not working, stop taking them. I know that it feels like it’s your only hope, but unless they give you relief, they are not doing you any good. It’s possible they could be causing “rebound headaches” and basically prolonging your pain.
      Hope you are doing better,
      Amy

  57. I have just found this site and it is good to see acknowledgement of this condition. I recently saw and independent doctor (for reasons I cant go into) who more or less told me I was making it up. He said it is very rare (translate impossible) for anyone to have a continuous headache such as mine. This has left me deeply depressed even though I have a great Headache Specialist who diagnosed me with NDPH and has worked with me to find a solution. There are only 2 such specialists in the state of Michigan. Unfortunately, no meds I have tried have worked, or if a medication worked, I could not handle the side effects. My headaches started in October 2008 after a nasty virus that put me in bed for a week. I am so down right now that I do see a psychiatrist to help me cope. Its not easy living with a condition that most people do not understand or believe in.

    Beth, please be careful with the ibuprofen. I too took tons to try to stop the pain, and ended up with 3rd stage kidney disease. I will be ok with that but must avoid any NSAIDs such as Aleve, and Motrin etc. It isn’t only hard on the liver, it affects the kidneys too.

  58. I am a 17 year old female and I have been having headaches for a little over a year (first onset dec 3, 2012). I have been through so much in this past year – 1 sinus surgeries, 3 different migraine medications, 2 hospital stays, 9 spinal taps, and now finally my neurologist has put me on topomax (topriamate). I have read a bunch of sites and now this blog and my headache symptoms seem to match exactly with what NDPH symptoms are. The only difference is that my headaches are only located on the right side of my head. None of my doctors have brought up NDPH (they just say i have “headaches”). Should i bring this up to my neurologist? should I find a new one? I can’t take these headaches anymore because they are affecting my school work and social lives.

    • Taylor,
      I am new here and I see that you asked your question a long time ago, but I would say that you should ask your neurologist about NDPH. I have seen 4 other neurologists and finally this 5th diagnosed me with it (after seeing him for a year!). I hope that by asking about this now it might save you some grief that comes with all those meds and side effects. It is worth asking about.

    • Hello everyone,
      I too have these exact headaches for 4 yrs now.
      I just tested positive for Lyme disease. The lyme has been the root to all my problems. I’m just starting antibiotics.

      PS: A lyme test is less than 45% accurate, so you may need 2-3 test to show Pos. my first test in 06 was neg, but I didn’t know about the low accuracy till now.

      Good Luck everyone !

    • Hi I’m also a 17 year old girl who has had constant headaches for 7 months. These came on suddenly after a flu-like virus. I have tried various preventative medications e.g. amytriptaline and sumotriptin which have had no effect. I find the headaches completely debilitating as well in terms of work and maintaining friendships. I wondered if Topamax had helped you or if you know of any other treatments because my GP is very dismissive of treatment options I try to discuss. In my last appointment, she asked me why I was there and basically told me I needed to ‘reset my pain threshold’. This lack of compassion makes this whole situation even more frustrating and I’m thankful for the kind of support forums such as these provide.

      I realise you wrote this post a while ago but I definitely think you should mention this to your neurologist because the treatment options are slightly different to migraines.

      Hoping you are well,

      Charlotte

  59. I saw somewhere mentioned that there was a teen site? Can someone direct me to it?

    Excuse the rambling….but I am so physically tired and emotionally drained. My daughter’s headache started on Feb 4, 2012. It will be two years on Tuesday. My heart still breaks for her every single day. Right now she has had a bad “spike” and missed school yesterday and today. Most days her pain is at 7.5 but it went up to a 9. Once it is up, we try and use “rescue” meds to get it back down.

    Her pain started with stabbing pains, like needles in her temples, that increased frequency so bad she was admitted to Children’s Hospital in Boston 2years ago. She left there 24 hours later with a intractable headache 24/7 pain which was 8/10. The pain goes from temple to temple. She had an MRI (noting only that she had non-specific lesions of unclear significance) and lumbar puncture was normal. They started her on amitriptyline…we have tried acupuncture, chiropractor, ENT, cardiologist (she was dizzy as well) went to two lyme literate doctors..(Children’s said she doesn’t have Lyme) but the lyme doctors disagreed. Put her on rifampin and another antibiotic for several months.. She missed two months of school during 8th grade and then back to school only for 3 classes a day in April and May. Freshman year she was only able to take 5 out of 7 classes. Fast forward …we gave up on the antibiotics, didn’t seem to help, then we tried inpatient DHE in Oct 2012. Totally awful experience. It made her violently ill, throwing up and did not reduce her pain. We had a sleep study done. They most recently put her on Gabapentin, after we gave up on the amitriptyline and nortriptyline. Then she forgot to take the gabapentin and we noticed no difference in the pain so we gave up on that as well. If its not making a difference, why take more drugs. We started her on birth control to see if there was a hormonal component to her pain, only tried that for 2 months.. again it made no difference

    She is currently only on fluxotine 20mg.. to help her mood and also takes a sleeping med. Reading all these posts makes me sad, but more determined than ever to find an answer. Since the DHE treatment, she has been trying to live with the pain, she didn’t want to keep trying for answers, wanted to accept it. But she cannot play sports any longer, she got a part time job that she had to quit because it was too much. All she does is go to school when she can and come home after and just “vedge”. Once in a while she will go out with girlfriends on a weekend to the mall but she isn’t very social because she is no longer on the same sports teams and has little in common with them. They are too busy for her. When she does do something and stay out a little later, her pain level goes up. I am at a loss of what to do for her. Tonight she says she wants to look for answers again..

    We go back to Children’s Monday for her 3 month check up and they will ask the usual, are you drinking water, getting enough rest etc… We need a new set of eyes to look at her. Any suggestions?

    Thank you all

  60. I have been reliant on alcohol, dropped out of college with a 3.8 GPA, cant work, any medication is useless, as am I, and after 3 years I have contemplated suicide. If I didnt have children it would have been done over 2 years ago. the more stories I read the more suicide seems like a viable option

  61. I’m unsure if I have ndph and wondering if anyone could help me out?
    I’m 20 and for as long as I can remember I’ve had a headache. Like in your story (the dimmer reference was perfect), it intensifies and lessens but never goes away. I have become accustomed to just living with it while it’s low. Through many dr trips, they generally just give me a shot and tell me to rest I’ve tried all sorts of preventative medication with no help.
    Through reading on npdh, I was thinking that it sounds a lot like me except often, when my headache does peak it will also turn into a migraine where I begin vomiting which through my reading is not characteristic of npdh so I was hoping someone could give me advice before a try a new round of doctors? Thanks

  62. Hi. I am a 34 year old mother of 5 that, after over 7 years of daily headaches, was finally diagnosed with NDPH. I am all emotional this morning after reading and realizing that I truly am not alone! Every person I have come across that has migraines has tried to be helpful and do understand the pain I feel, but I have never me anyone that can describe what I go through daily. Then I found this blog. I cried as I read through this home page. Amy, you described what I, and apparently so many others, feel on a daily basis perfectly. I love how your doctor described it to you! Just perfect!

    Mine began on a May morning in 2007. I was walking on a treadmill when I got light-headed/dizzy. My trainer told me to go cool down on the stationary bike instead. While on that bike I was overcome with pain like I’d never felt in my life! My head felt like it had exploded! I cried all the way home and ended up in the ER to make sure I hadn’t had an aneurysm or something. But the pain just didn’t go away. I’ve seen 5 neurologists, multiple chiropractors, hormone doctors, allergists, eye doctors, dentists. All to no avail. As all of you know, nothing has helped. Not one pain med gives me even momentary relief. No migraine med has helped. I’ve tried hundreds of different kinds of meds for various things over the years. I am now trying nerve blocks. My pain is over my entire cranium so I have to have multiple blocks, as they target different areas. I have only had mild success with this.

    I will be checking out the rest of this blog. Thank you, Amy, for putting this together.

  63. I am 17 years old, I was diagnosed when I was 3 with chronic migraines. I have had them all my life. Then on Valentines Day, February 14, 2011, I got a migraine, just like I have experienced before, except this one did not go away. I took medicine like usual, laid down, tried to relax, but it was still there. 3 days had passed when I went into Urgent Care. They gave me a shot of some pain medication that is commonly used to treat migraines, it didn’t help. Long story short. I have been to over 20 different doctors, tried countless medication, had countless tests done. I was diagnosed with NDPH. Now it’s just a waiting game to see either when it will go away, or if there will ever be a medication to ease the pain other than morphine for the occasions when I have to go to the ER. This February will be 4 years. It sucks. I am now in college and I am so scared it will affect my work. In high school I was able to get a doctors note to excuse my absences( which was a good thing because the first year I missed 42 days in one semester ), but now in college they will not find this as an excuse, especially if they have never experienced a headache or a migraine.
    Well, that is a shortened version of my story. I hope everyone gets better. Stay positive. We all need hope to get on with our days.

  64. Familiar stories. Far too many of them. Between being accused of seeking sympathy and painkillers to being told that my answer is a prayer away or at GNC, this is easily the most frustrating quarter of my life yet. I’m 40, male, 6’1, a highly active surfer, a grad student and a healthcare professional. I’ve been a witness to a really persistent headache for the last 12 years. Every 3-4 years, I go back and see if anyone has found a treatment for this wretched condition, I know it’s unlikely, but at least now there’s a name. For the time being, I’ll find my solace in the waves and hope for some kind of cure and just be thankful that it isn’t something worse. To this day, I tear up thinking about going a day without a headache, but in the absence of methadone, it seems pretty unlikely. Please keep doing what you’re doing. I’ll be here looking forward to becoming the person I would’ve if the headache wouldn’t have started.

    • Hello.. I do not have NDPH and from what I have been reading , none of You would wish it on your worst enemy. I just happened across this site and wanted to throw something out there ( just what You all want right? Another idea). Please google charlotts web oil and read up on it.. The Stanley brothers out in Colorado have developed a cannibis oil that is changing the lives of many.. To order it , it is called cw botanicals. After researching it for my daughter ( for seizures) I noticed in the testimonies ( comments) that a mother wrote about her son that started taking it because he had constant headaches from being hit in the head with a baseball. No relief from anything else but when he took his first dose of this his headaches went away. Just a thought?? Sorry you all are going thru this.. Ps.. It doesn’t make you high! Lol

  65. Sounds so much like my headaches.will never ever go away. So very tired from the pain. I am 43 and I can always remember having these. Well as far back as I can, I remember being in the nurses station in kindergarden and they just didn’t understand why I had a head that was making me cry because I didn’t have a fever. Lol people just don’t understand. I wish to all out there a pain free or low pain day.

  66. Wow, get out of my head! It’s known I have a benign tumor on my brain stem, that they say could be the problem, but this is exactly my plight. I have headaches for months at a time. I just suck it up, and pray they don’t stay an 8+ for too long. Thanks for the article

  67. Wow just how mine have went. Mine started about six years ago and next week I go in for another type of infusion.

  68. I was told I had chronic migraines and while I have narcotics to take they don’t alway help so I go to the ER and they treat me like I’m just there for drugs. Hello I got a pharmacy at home. I only go when the pain level is 9-10 and I’ve had for more then a week. So it’s to the point where I dont even bother I just ride it out. With migraines and fibro I’m a total hotmess and I can’t seem to get my new drs to understand this. It’s so frustrating.

  69. Sometimes the headaches are from more than one source. I have narrow sinuses, and the roots of my teeth intrude into the sinus cavities. I also have TMJ and those headaches were helped by a combination of a custom mouthguard, biofeedback training, and a very low dose of a muscle relaxant (only needed for the first few months). I had to have surgery to remove extra bone buildup on my upper jaw (it was forming points that cut through the inside of my cheek). I had bruxism (nighttime grinding) and daytime clenching. I’ve been able to stop the daytime clenching. I’ve had my jaw lock up for months at a time–able to eat only liquids through a straw. I’ve had my skull “dislocate” from my C1 three times–causing muscle guarding to set in so strong that I can’t move my head at all. I also have congenital fusing of C2-C3 vertebrae. Been tested for tumors, strokes, meningitis, etc. when I get spikes like that. I have severe obstructive sleep apnea, which affects short term memory and causes headaches and chronic fatigue.
    Psych testing showed ADD, drop in IQ, and specific damage in left hemisphere (loss of sense of smell, some cognitive function, etc.).
    Other things that HELP: found a chiropractor that knows not to do traditional adjustments (does manual traction and pressure points instead); started a regular series of relaxation massages alternated with myofacial release/deep tissue (they work as a preventative); found an activity that puts me in a different part of my brain (painting uses the right brain and can put me in a state where time flies and I’m not aware of the pain); icepacks on my neck can numb the pain; reflexology massage (feet) gives some relief; meditation helps a lot–pain clinic introduced me to the “heartmath” method–it uses synchronizing/smoothing of the heartbeat to block the nerves that carry pain signals to the brain.
    Pain meds don’t work for me unless at doses that incapacitate–sometimes needed just to sleep. Most of the other meds people have mentioned, have side effects that prevent me from working. I’m continuing to use meditation to deal with my pain–it gets more effective with repetition. I can now lower my blood pressure significantly with just a few minutes concentration. Recently I was able to achieve 2 whole days with no pain–it gives me hope.

    I have a friend who gets chronic migraines (after a car accident). She had gotten great relief from botox and from acupuncture. For me, acupuncture made the pain worse (intolerable while the needles were still in). Lidocaine/novocaine hurts terribly and gives me a day long migraine the day after, accompanied by swelling and tenderness at injection sites. Nitrous DOES work and blocks the bad effects of the other shots.

  70. I suffer from horrific migraines and daily headaches that just seem to never go away! I’m 50 now the earliest onset I remember was 6th grade. I’ve been to every doctor imaginable, been to Michigan head pain,clinic, the list goes on. An incidental finding during one of many mri’s, was a cyst on the pineal gland. I was told that plays no part in the headaches. My life revolves around these debilitating horrible life stealers! When I am forced to go to the ER and they ask my pain level, I say “I never come here unless it’s a 20, otherwise I would be here way too often”.
    best wishes for a light or soft headache today everyone; )

  71. I’ve had chronic migraines for about five years now, but this has helped me when the pain is so bad I just want to die literally
    Put your toes and fingers in warm\hot water, and ice pack at the base of your skull for about 5/15 mins. Did not get rid of pain but eased it up

    • I am 18 I have been on the bottom of the waiting list for an mri for 3 years, I have been on way to many medications that I can no longer count, I’ve put my schooling on hold because I cant concentrate with the pain. So any hints please help.

  72. A positive story – I was diagnosed with NDPH and now I am on the road to recovery. NDPH is not a legitimate diagnosis, there is a cause for the headache and I have been lucky enough to stumble upon it and receive the correct treatment. Please read my story, it is long and it may not help everyone but I am certain it will help at least one person who has the same or similar problems.

    Sep 26th 2013 I woke up with a headache about 6/10 in a scale of intensity. Along with the headache I felt a lagging feeling when turning my head or looking around. The headache was worse when I lay down and after waking from a sleep. I felt a variety of other random symptoms which I can discuss in detail if someone asks. I lasted a week before I saw the doctor and the following events unfolded:

    – End of month 1 – blood tests – all clear
    – End of month 2 – Neurologist No.1 – MRI scan – all clear – diagnosed with NDPH
    – End of month 4 – Neurologist No.2 – MRA scan – all clear
    – End of month 5 – Acupuncture – no change in symptoms
    – End of month 7 – Neurologist No.2 – lumbar puncture – all clear – diagnosed with NDPH

    After 7 months I tried to accept that my headache was in fact a case of NDPH; triggered by an ‘infection’ and the headache would go away by itself some day. The doctors and neurologists advised that getting on with my normal life was the best way to deal with it and hope that one day I would wake up with a clear head. Although I didn’t once believe in this diagnosis, I had no alternative so continued trying to live and work like normal.

    – End of year 1 – my life changed

    After a full year, I found that I was always turning my neck trying to get it to click. I had this sensation to always want to click my neck. My back was beginning to ache incredibly while sitting on my desk chair at work. I was getting to the end of my tether with this headache and these additional problems now kicking in. Dissatisfied with the label NDPH, I searched for answers.
    I went to a chiropractor: Dr. Iain Smith at Newport Chiropractic in Newport, UK. I had a free initial consultation with him; started spilling out my story over the year and to be honest I expected no answers in return. Listening patiently, Iain undertook a few physical tests:

    – Press the thumb and little finger together and try to split them apart – it should be very hard to split apart, it required minimal effort to separate my thumb and little finger
    – Stand on the spot, arms stretched out in front of you, eyes closed, raise one leg up towards your torso, and then the other, as if you are marching, but stay on the spot. I did this for about 1 minute, opened my eyes and I was facing 90 degrees away from where I started. I should have been facing the direction I began with.

    There were a series of other tests that he did. He sat me down and concluded that based on my story, the symptoms and the tests that I have potentially misaligned a vertebra in my neck. To be certain, he asked that he see my MRI scans and sent me to have upright MRI scans done in London at The Medserena Upright MRI Centre. In the meantime, he took some x-rays of my neck in his own x-ray room.

    I had the upright MRI scans done and had a review of them immediately afterwards with a Professor Smith. This is where I found out the NDPH is not a legitimate diagnosis. The results clearly showed that I had dislocated my vertebra. This dislocation restricted the fluid flow to my brain, causing a headache. Further to that though, it cause the back part of my brain called the Cerebellar Tonsils, to shift downwards towards my spinal column. When this occurs, which is fairly common, it brings about a set of random symptoms including a pressure headache. This change in structure is called Chiari Malformation and can happen to anyone from those who play sports, have a car crash or other head, neck or spinal injury. I was shown a list of the symptoms and nearly all of them were exactly what I was experiencing. The professor said that today is ‘the best day of your life’ and it really was.

    I returned to Dr. Iain Smith who devised a treatment plan. The first part of the plan was to re-align my vertebra back into position. This was done using his Atlas Orthogonal machine primarily. I can offer details of the treatment if you contact me. By re-aligning my vertebra, this stopped the restriction of fluid flow to my brain and also had the affect of shifting my cerebellar tonsils back up into the normal position. Both had the affect of relieving my headache pain – but pain around and above my eyes and on the sides of my head persisted.

    The second part of the plan was to address what caused the dislocation to occur in the first place and also relieve the pain around the eyes and sides of my head. On the 26th September 2013 when this happened I felt no neck pain that would indicate that I had dislocated a vertebra. This indicated that there was a weakness in that area in the first place and Dr. Iain Smith proved this was the case with help from Dr. Peter Bishop from High Street Dental Practice in Bristol, UK.

    Dr. Peter Bishop was the other half of the treatment plan. He explained that the jaw and the teeth directly affect muscles all around the body. After learning of my problem from Dr. Iain Smith, hearing my story, and checking out my teeth and jaw, he recognised I had a cross bite. This cross bite is a jaw imbalance which has developed from a young age. As the skull grows, it will grow towards any imbalance. The jaw is directly linked with the two vertebrae in your neck. Over years, a weakness developed around my vertebra until one day potentially something minor made it pop out of place causing all of the above to occur. Furthermore, the cross bite was adding to the headache pain. An incorrect bite can cause pain around the body and headache pain, particularly around the eyes and the sides of the head. Correcting the jaw imbalance was a crucial step to my recovery. For details on how this was done please contact me.

    I learned that NDPH is not real and it is not a true diagnosis. The cause for my headache pain was in fact three causes:

    1. Dislocation of C1 or C2 vertebra – known as cranio cervical syndrome
    2. Downward shift of the cerebellar tonsils – know as chiari malformation
    3. Jaw imbalance – cross bite

    Your headache could be caused by any of the above 3 issues, or maybe some similar issues if not exactly the same. It definitely is not NDPH.

    End of month 17 – vertebra realigned, jaw imbalance almost repaired – headache has completely gone, will only flare up with 1/10 pain maybe for an hour or so once a week – I can feel that eventually this will disappear altogether as my jaw imbalance is completely corrected which is a long term treatment. The discovery of the cause and the treatment has changed my life.

    Below are relevant links:

    Newport Chiropractic – http://www.newportchiropractic.co.uk/
    The Medserena Upright MRI Centre – http://www.mri-london.com/
    High Street Dental Practice – http://www.highstreetdental.co.uk/team.html
    Cranio-cervical syndrome – https://youtu.be/7ENXw4ECwPg
    Chiari Malformation – http://www.mayfieldchiaricenter.com/chiari.php

    Please feel free to contact me if this sounds like something that could be causing your headache. Email me at pavmanak@hotmail.co.uk

  73. Glad I have found people who also suffer from this, its been 2 and a half years now. Sadly mine doesn’t get any better, I don’t have a dimmer switch but a normal on/off switch. I hope that it will be turned off one day.

  74. finally… finally i have found something that fits my symptomes so well that i some how feel relieved and at the same time it scares the hell out of me. I’m now having this headache for 4,5 months after 9 pain free months, before that i had it for 3 months the same pain….

    It completely takes over my life, i can’t go to my classes or better yet i pretty much can’t do anything accept for staying at home, spending my day in bed or on the couch. It is ruining my life. And i’m only 20 years old… I can’t finish my study right now, can’t work, barely spend time with friends. I try to go horse riding once a week because thats who i am but i know that 1 hour riding means not being able to do anything the rest of the day most of the time.

    Right now i’m on morphine not that it’s doing everything but well at least it does something and keeps me from going insane and harming myself because well as i see it ruin my life staying positive get harder and harder everyday. After it went from only one sided to 2 sided the only thing they could give me was morphine because pretty much everything else i have had in the 7 months headache(s) total didn’t really work.

    I don’t have the diagnoses yet but it fits almost perfectly, but seen that its pretty unknown in my country i’m not really surprised. I still have to wait a month before i have my appointment at a headache centre which will be my 3e neurologist. I will see what he says but will definitively bring this up or maybe even let him read this page.

    I know there isn’t really a cure or treatment for this but for me being diagnosed would be the first step in that direction.

  75. Pingback: Living with NDPH – The Headache Clinic

  76. My 3-year “anniversary” is coming up on Feb 3rd. I, like most of you, have tried every kind of treatment under the sun: traditional medical, a host of alternative practices, followed up on every folk remedy, and tried some downright woo-woo approaches. The only good news in this constant misery is that my 3rd MRI (actually an MRA) found a brain aneurysm which was big and in a bad place. I had coiling surgery to fill the bubble with ten titanium coils, plus a stent in that artery. At least my head didn’t explode, probably causing death as I live 127 miles from a decent hospital. This “incidental finding”, as they call it, saved my life, but didn’t affect the headache one iota, as the specialist predicted.

    My hope, like yours, is that the headache will disappear as suddenly as it appeared. In the meantime, I manage to run a small biz, and have a very limited social life, while sleeping 10-13 hours each day from pure exhaustion. I exercise daily, eat well, and try to keep positive.

    This Blog at least let me know I am not the only person on this planet with this weird, inexplicable headache. Thank you.

  77. I began having a nonstop headache in October of last year, following a miscarriage and d and c. I did have a handful of intermittent headache free days for the first month before it became nonstop in November. These days are enough to deter doctors from diagnosing me with NDPH, and it is frustrating not having a clear diagnosis. They are guessing it to be a migraine, but I have no headache history and I can’t imagine a migraine going on this long. To confuse matters further, after numerous medications and hospitalization did not help, I began taking an antidepressant medication called Fetzima that has taken my pain down to a 1/2 most days. And for me, a 1/2 day is hardly noticeable, especially if I’m distracted. So I was told there is no way I can have NDPH because it would not respond to Fetzima. But the headache is always there- so what is it? I am not stressed out about it so much anymore and am very relieved now, but as long as this headache is knocking on my door, I am always going to fear what it can do. I was miserable for the first two months! If I could have a diagnosis then I could receive treatment that maybe would make it go away altogether; but for NDPH that may not be a reasonable goal. I am scared to do Botox because I have been permanently disfigured by it before. Does my story sound like anyone else’s? I remember the exact moment the headache started- it was awful, and I knew something was wrong. I also wonder if the miscarriage has something to do with it. When reading these stories, I do not suffer nearly as much as these other poor souls, but then again, chronic migraine should be just as painful, so it’s not like I fit in either boat. It has been almost four months since this began and I wonder- will these doctors ever diagnose me with NDPH or just keep me labeled as a migraine that never ends. I think I would feel some relief if I had a real answer.

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