NDPH Forum

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Living with NDPH Community and Forum

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NDPH Forum — 20 Comments

  1. My son has recovered from NDPH and he wants his treatment documented for others. Rowan woke up on Sept. 10, 2012, age 13, with an excruciating headache which was continuous until Feb. 10, 2014. He had done Topomax, Maxalt and other migraine medicines with no avail. Botox and DHE infusions were also tried. He was put on a low dose of Protriptyline which lessened the headaches but he was still unable to attend school and ordinary social functions. In December of 2013 we went to a new neurologist, Dr. Khoury in Dallas, TX. Rowan’s meds were bumped up to high doses of Protriptyline and high doses of Cambia. Both of these have an anti-inflammatory effect and after 6 weeks of that regimen, Rowan’s headache stopped and has not returned in the last 5 weeks.
    My heart goes out all of the NDPH sufferers and please never give up hope. Regards Dr. White (Rowan’s mom)

  2. I’m so happy for your son. I’m 28 now and developed NDPH when I was 13. Unfortunately I still have the headache today but I try to never give up hope. I realize this post is old and doubt you read this. I can still remember how scary it was when this all started at such a young age. My best to your son and I hope he’s doing well

  3. Dear Ms. Norbut,
    My son has not had a headache since he was on a 6 week regimen of Cambia. He has not taken any medication since the headache went away. He has been pain free for over a year with no recurrence of headache pain. Regards Dr. White

  4. 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

    • Thank you for sharing! I was diagnosed with NDPH after both MRI/MRV of the brain, thousands of dollars in doctor visits, including a very expensive trip to Cleveland Clinic Neurological Center for Headaches. After initially being diagnosed with an inner-ear imbalance issue, I was assigned to 8 weeks of vestibular physical therapy. After no changes, and numerous visits to doctors.. I was resigned to accept daily headaches. My initial headache was July 18 2015. I was diagnosed with NDPH at Cleveland Clinic in June 2016. By December 2016 I had given up hope.

      I stumbled upon this post… and it sparked my curiosity. This all made sense and was perfectly in-line with my experience. I have a local chiropractor that uses a similar method of realignment as the Axis/Orthagonal machine. He uses pulses of varying intensity and position to adjust the spine. I started treatment right away. He assessed me as having major issues with Atlas/Axis (c1/c2). I was realigned three times a week for two months. After about three weeks, the headaches ceased. After the two months of treatment, my atlas now remains in alignment and needs very little tweaking. I have reduced to one visit every two weeks, and have had only two minor headaches the past month. I do still have some dull pressure, but that’s mostly due to my job as a software manager. What a life change.

  5. Hi, my headaches started in 2004 and have never gone away after almost 50 doctors all across the U.S. I’m currently 34. Not going to give up and when I first saw this site I was happy but after reading every post I’m concerned there is no collective/group effort to contact/email news outlets or even people like CNN, Fox, Dr. Mercola, The Doctors, or even Dr. Oz to get some visibility. I have contacted them all. We all need to do the same.

    Telling our stories here is great but it can’t end there since a lot of people here are getting dangerous treatments that aren’t needed and there isn’t much dialogue. We will gain much more momentum if we group together and push for studies and TV visibility. Take care.

  6. Rowan’s story is similar to my son. His headache started 30 August 2012 when he was 12 years old, he is now 15 years and in daily pain 24/7 since that day and is currently now unable to attend school. His life like many of NDPH sufferers who live in chronic pain has changed drastically. We are in Australia and VERY little is known and understood about the treatment of NDPH. From our experience doctors and Neurologists are not equipped to treat this condition and have given up on him.

    Dr White if you happen to read this message I have a couple of questions:
    1. Can you please advise if Rowan’s doctor determined what was the trigger for his daily headaches?
    2. Did Rowan have an infection in the period prior to him developing the daily headache? If so what was the infection? (We have some evidence that my son had/ still has Lyme disease and co-infections but doctors in Australia will not recognise)
    3. I believe the medication Cambia is a brand name Voltaren in Australia – an over the counter medication. It appears that it is the combination of the two Cambia and Protriptyline that got the positive results?
    4. Did Rowan suffer any side effects from these medications?
    5. What was the high dosage that Rowan was required to take to received a positive result and the cessation of his headache?

    Has anyone else tried the medication Rowan was prescribed and become headache free?

    I would like to report this information to a doctor here in Australia and determine if my son is eligible to try this medication.

    Thanks so much for sharing – it was so nice to hear you use the word “recovered” which is all too rare for NDPH. Rowan’s story gives hope and everyone suffering this horrible condition deserves hope. More research is needed for the cause and cure. I have been in contact with the Headache Australia to attempt to obtain a common voice for suffers. Lobbying our parliamentarians is also an important step for us to take.

    All the best to Rowan and may he continue in good health.

    • Cambia is DIclofenac potassium and is a prescription drug. Rowan had an upper respiratory infection about 3 weeks before his headache struck. There are side effects to the Cambia powder and Rowan was taking 3mg of powder a day.

  7. My husband , age 58, a physician, who is unable to work , after being diagnosed with NDPH. He has suffered with this since June 10, 2013( greater than 2years). Significant hx is Lyme disease that was treated in 1999( approx 16 years ago ). Other than this he had been in excellent health, Paleo diet,never had headaches , and was able to do crossfit, lift weights , 6 days a week -no significant health problems.He was in the best health that he had ever been in his life , so waking up with head pain that never went away -(at times it is a band like sensation , other times it feels like pressure that migrates to different areas ),ringing in his ears, one sided nasal congestion , dizziness, neck pain, etc was not believable. On top of this he also had a recurrence of flu like symptoms ( hx of Lyme disease)and gastrointestinal problems( appeared to mimic irritable bowel syndrome). Yes, there is nothing we have not tried. Meds, Botox, herbal treatments,acupuncture, etc-he has considered the occipital neurostimulators( also placed above the eyes ) and was evaluated for possible decompression of the nerves under the trapezius muscles ( and other nearby muscles)if it was felt to be that the headache was related to any of this. Migraines can be treated like this and many with this type of headache do get relief and are helped by the two above procedures.unfortunately my husband was evaluated for nerve decompression and it was determined that this would not be helpful.my husband , at this point does not wish to have the neurostimulator procedure. The results from this have not been consistently positive.( it might be something he might turn to). Meanwhile the flu like symptoms are thought to be due the Lyme disease .He has had numerous treatments including long-term antibiotic treatment and oxidative treatment. ( Vit C , UV, ozone) these symptoms did not get better and recent hair testing has shown mercury toxicity. He has had his dental amalgams removed and has now started chelation treatment. We are hoping that this will help to relieve some of his symptoms but we doubt that the headache will be cured by this. We have been together 33 years and I could never have predicted that this would’ve happened to my husband. After he is through with mercury chelation we will revisit previous treatments that have not worked before .We continue to try other medications that might help to lessen the headache. As many of you know , NDPH is treated like a migraine ( similar treatments) as there is no one treatment for NDPH( that we are aware of).I’m thrilled to read in this forum that one individual found anatomical reasons for his headache( but I do not believe this is common as we have visited several physicians that have dealt with treating and evaluating NDPH sufferers for many years) and another individual found a medication regiment that cured the headache .( which we will investigate)They still do not understand what keeps the head pain going- yes, there are theories, ie cytokine production , neck issues, etc. There are, of course ,common features that many individuals have before they get the headache i.e. upper respiratory infection ,some type of virus and or some type of stressor. In my husbands case ,very possible that the history of Lyme disease ( and coinfections), plus mercury toxicity, have played the role in him getting the headache( most possible). Nonetheless ,we are still left with no answer at the present time. I greatly appreciate the other individuals that have posted and have shared their success stories.We hope that in the near future, we also will be able to share what has been successful in curing my husband’s health( and his head pain).I wish , all of you ,including all loved ones of those that are suffering with illness, strength to continue searching for the answers that will bring you relief and the best quality of life that you deserve.

  8. Hi, has anyone tried the Doxycycline and Montelukast protocol? What were the results. My 24 year old son has has NDPH since he was 9. He’s very stoic, but he had to drop out of college because his headaches were so bad…

  9. Reading all these posts that say “have tried EVERYTHING”, did you all try: Mexilitine, Memantine, Flunarizine, Ketamine, IVIG, or LDN??? Anything else I might be missing?

  10. Luludog. YES, I have tried everything. All of the migraine meds. Botox, IV infusion therapy 2x, nerve blocks…I can’t think of everything and I don’t have my records in front of me. I have had NDPH for almost 4 years ( 3 years 8 months to be exact) since December 2013. I have been to a few neurologist. Each one gives me new meds and wants to run more tests.

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