Finding a Doctor to Treat New Daily Persistent Headache

Is it possible there is a treatment out there for NDPH that your current doctor is not aware of? If you are being treated as a migraine patient, then chances are there is more that can be done.  From my own personal experience, and the countless emails I have recieved over the years from fellow NDPH sufferers, I know that this headache will not go away with a migraine medication.

Finding a doctor who understands and specializes in treating NDPH is tough. There are not that many of them, unfortunately.

For me, finding the support of a knowledgeable doctor was vital. Dr. Todd Rozen at Giesinger Medical in PA was that doctor for me. He may not have a cure, but he offered many options.

Previously, I had seen a doctor at the New England Center for Headache in Connecticut. They are knowledgeable about NDPH, but I don’t feel that they were at all cutting-edge. They can help you get an accurate diagnosis, but beyond that, I do not feel comfortable recommending them based on my personal experience.

I would like to put together a list of NDPH doctors, and for that I need your help. Will you take a moment to leave a comment and share with others any information you may have about a doctor who specialized in treating NDPH?

If you are looking for a doctor in a specific part of the country and don’t know where to go, leave a comment as well and I will try to find a recommended doctor for you.

Please take a minute to help! Share any information that you think will help our readers here.


Comments

Finding a Doctor to Treat New Daily Persistent Headache — 137 Comments

  1. I live in Sydney, Australia and after going through many neurologists I found Professor Alessandro Zagami at the Prince Of Wales Hospital. He is a headache specialist and has a good understanding of NDPH. He will not give up and has many ideas and suggestions to help relieve the pain.

    • Thank you for the recommendation Wendy! We have several readers in Australia who have contacted me over the years looking for information on where to find help. I am glad to hear that you have found a doctor who will not give up!

      • Hi Wendy, I’m also in Sydney and my 13 year old son has had ndph for over 2 years now. I would love to know how you are going and if this Neuro found anything that helps with the pain. My son is not doing well at the moment and his Neuro is a bit lost on what to do next.
        Thanks Kris

    • HI Wendy. I was wondering how you have gone with this Neurologist and your NDPH? Im also in Sydney and my son is under a Neurologist in the Childrens hospital but I think I need to look elsewhere for someone who specialises in treating NDPH.
      I have heard DR Jaques Joubert in Melbourne has had some success but my son who is 13 would find the trip too hard as he is bedridden with this pain at the moment.
      Thanks
      Kris

  2. Hi Amy, I have been working with my neurologist for over 2 years now, only one of which I had NPDH. I had been going to his Nurse Practioner for the first 6 months of having it and after I became a constant caller she finally got me in with him (he’s high in demand). It took him 5 minutes of listening to diagnose me. We’ve had quite the journey together and I have finally found a way to be my own advocate when I feel a treatment isn’t working which I think has improved our rapport with each other. He is very “old school” according to many other people’s reviews of him, but he is also very attentive and aggressive when it comes to treatment. For now he’s my guy. His name is Dr. Joseph Mann at Rochester Greater Neurology in Rochester, NY. The Rochester area is known for it’s Universities and Hospitals….another name that came high in demand and is also a family friend is Dr. Ralph Jozepiwicz…(sp. might be wrong), however he is the head of Neurology at a hospital and if you need someone to be quickly responsive he has admitted to my father it would be better to work more closely with someone in his practice. He could be my next step if I ever really felt desperate. I think it’s hard not to feel alone in this disease and having a quality doctor is so important. I can’t say I feel like my hand is being held but I also know that I am not going to left to suffer.

    • I have also had a great experience with Dr. Mann. We’ve tried many methods of treatment; Rx, PT, Cervical Block, etc.. Unfortunately, nothing has worked but I can’t accuse Dr. Mann of not trying. He has been patient, compassionate and open to ideas.

    • Kristen, my daughter has been just diagnosed with NDPH. We live in the Rochester area. We could not find a doctor and have been going to New York City but it is so expensive. Are you still having headaches? Are you still seeing Dr. Mann in Rochester? We may consider him. Please let me know.

        • We have been going to The Headache Institute at St. Luke’s Roosevelt Hospital Center, Dr. Joshua Cohen, pediatrics. My daughter is 13. He has prescribed Gabapentin 300 mg and Flurbiprofen 100 mg (for pain spikes) but nothing has helped the pain. She has a 24/7 headache. We are getting ready to move to Houston, TX and I hope to find someone to help her there. We are also seeing a chriopractor/nutritionist who is helping us with supplements and food sensitivities by testing her muscles. This has seemed to lower the headache 8/9 to a 6/7/8. We are going to continue staying off foods he believes might be bothering her.

          • Janice- although this post is old, did you find a doctor in the Houston area? I am looking for a doctor if you have. I live just outside of Houston in the Pearland area.

  3. For a good Neurologist who does Bottox injections for headache located in Montreal (Quebec, Canada), try Dr Martin Veilleux.
    He is at “Reine Elizabeth clinic”.

  4. I have been at this for almost 18 years and have not found a neurologist who will acknowledge anything other than “migraine” which I clearly do not have. So frustrating!

  5. I have had NDPH since June, 2011. At first my family physician just gave me pain killers which did not work but made me sick. Next we prevailed on her to give me a brain scan which proved negative. Then we went on our own to a communicative disease specialist because the headaches started overseas when I got food poisoning. He told me that it was a sleep disorder and gave me a sleeping aid which accomplished nothing. Next we persuaded our family physician to send us to a neurologist who prescribed more pain killers that made me violently sick. On our second visit to her she diagnosed NDPH and sent us out the door. We tried to get into Mayo Clinic (18 month wait) but finally our family physician got us into the Duke Pain Clinic where I met with Dr. Heather Adkins a neurologist. She prescribed sumatripton (spelling?) for four months with absolutely no results. At least this time I did not get violently ill from the meds. In June I went for our first botox injections. I had no idea that it would be what it turned out to be. She had planned on 41 injections in the skull and neck but I could only take 26 because of the pain. Net result of the injections was no change in my headaches. I were suppose to go this week but cancelled. We do not know where to turn now.

  6. i have had ndph since feb 2012 been every where for pain management im curently seeking treatment at the headache clinic in tampa she seems to be very knowageable more so than anyone else her name is dr. Nina dont know her last name

    Donald Smith
    winter haven florida

    • I’ve been seeing Dr. Weintraub at the Michigan Head Pain and neurological Institute. I was evaluated for botox injections, but the trial didn’t work for me. Still searching for answers and dealing with daily pain for 11+ years.

  7. I have been seeing Dr. Timothy Wei in Walnut Creek, CA. He has a neurology office and specializes in headaches. While he does not have a cure, he hasn’t given up trying to find additional tests to exhaust everything, tried a bunch of different drugs, sent me out to two alternate headache clinics and helped me get a disability leave from work. (Invaluable.) He has a very systematic approach and still understands the whole person. His office has an amazing acupuncturist available as well.

    Dr. Timothy Wei
    East Bay Neurology
    1981 North Broadway #248
    Walnut Creek
    (925) 938-5252
    http://www.eastbayneurology.com/

  8. I have suffered with chronic headache pain for 29 years now. I was fortunate to find a neurologist about 15 years ago that found the right combo. of pain meds to allow me to function. 8 years ago he closed his practice to persue some research in drug trials.I was fortunate that my primary care took over writing my scripts. Well I knew it was only a matter of time and he would now like me to go to a pain management clinic. Over the years I have done like many others have, seeing numerous Dr.’s, too many to list and doing anything they suggested, even a pain management clinic that gave me injections in the back of my head. I have seen and done it ALL. I have basically given up on the Dr.’s but at this point need to start the process again. Does anyone know a good neurologist or have delt with a good pain management facility in the Boston area? Preferably a younger Dr. that is up and current with new things.

      • Have ou tried Faulkner Hospital headache clinic? I go there, and they are the most helpful people I have foun in the area.

        • I go to the Brigham & Womens Faulkner Hospital Graham Headache Center too and see Dr Rebecca Burch. She has been great. I had my second botox injections recently and am on gabapentin. This has helped me get back to working out which has also improved things for me. My headache started 12/20/12.

  9. I would like to find a NDPH specialist for my daughter, Mia. She has had the headache since December 28, 2009 and she is 16 years old now. She was diagnosed at the Mayo Clinic in May of 2010. She has been on Cymbalta for chronic pain for a year now, and in the last 3 weeks she has been suffering pain at the level that it was in the beginning. She was able to attend school and function before this recent episode. She has taken Vicodin and Prednisone in the last two weeks, but no relief. Any information would be greatly appreciated–thank you very much!
    ~Ginny Knox

  10. I am eighteen years old and I have had NDPH for almost eight years now. I have two doctors that collaborate on my treatment plan: Dr. Jack Gladstein and Dr. Seymour Diamond.

    I first saw Dr. Gladstein when I was younger. He has patients from all across the country come for appointments with him, so I have heard that the office has helped people with travel and hotel arrangements. He is really nice and helpful and he genuinely cares about his patients. After several years of having no successful treatments, he was the first one to ever actually help me. He is really easy to get in touch with. When I have had to go to the ER because my headache got too bad, he was always easy to reach and he called the ER beforehand to reserve a bed for me. Also, he is a pediatric doctor, but he told me that it is not a problem for him to continue working with me even though I am eighteen now.

    When I was thirteen, my headache condition worsened and Dr. Gladstein referred me to Dr. Diamond at the Diamond Headache Clinic in Chicago for inpatient treatment. I stayed inpatient there for about a week. He used a combination of methods and focuses on both short and long term treatments. The clinic was incredible, it is basically an entire floor of a hospital that is devoted to diagnosing, managing, and treating headaches. The clinic combines outpatient and inpatient treatment. When I first got there, the questions were more specific and in-depth than any of the doctors I had previously seen (which is quite a few) and they did a nutritional assessment. During my inpatient stay, I participated in group sessions, which I found to be helpful and comforting. I had never really met anyone else with a similar condition and it was a relief to meet people that understood, even though the clinic treats a wide range of headache conditions and types. Even though I did not need this, other patients were given physical/activity therapy and detoxification to lessen or eliminate drug dependence. One thing that was nice was the clinic really encouraged family involvement, even beyond the pediatric patients. My treatment there was a combination of medicines, lifestyle modification program (diet, sleep, etc.), and biofeedback (which I have found to be helpful).

    Since I do not live in the Chicago area, Dr. Diamond has been really good with working with Dr. Gladstein (who is much closer to my house) to find a working treatment. The combination these two doctors has kept my headaches very manageable.

    Dr. Jack Gladstein
    http://www.umm.edu/doctors/jack__gladstein.html
    University of Maryland Medical Center, Pediatric Headache Clinic
    Baltimore, Maryland
    (410) 328-5390
    (410) 328-2999
    *He is the director of the UMMC Pediatric Headache Clinic, which was one of the first pediatric headache clinics in the US and it is still one of the only ones on the East Coast.

    Dr. Seymour Diamond
    https://www.diamondheadache.com/
    https://www.diamondheadache.com/new-patient-appointment
    Saint Joseph Hospital, Diamond Headache Clinic
    Chicago, Illinois
    (800) 432-3224

  11. I have had headaches – whatever label you choose to use – constant for 18 years. I’ve been diagnosed with Chronic Daily Headache at Diamond in Chicago – and was very happy with the kind of care I received, but was far from home. Are there any docs that are competent with NDPH in or around Indianapolis or Louisville – even Cincinnati for that matter. I’ve seen so many and tried so many things am getting close to the end of my rope.
    Thanks,
    Kristy

  12. Whatever doctor or clinic you try to attend, stay away from the Mayo Clinic. We live in NC and have been going to the Duke Pain Clinic for (3+ years). They referred us to the Mayo Clinic to see if they could offer us some treatment that is currently under research. We were on a waiting list for two months, got an appointment 3 months later. Our friends raised several thousand dollars for travel, hotel, food, etc. I had my appointment scheduled for this past Monday at 7:30a. All my paper work, vitals, and time with the doctor were completely over in 1 hour! Basically, we drove two 12 hour days to get there to stay for an hour. Mind you, the information and phone calls we had prior to the appointment told us to plan to stay 5-7 days. We had everything for our hotel room ready, food, paper goods, etc..

    Dr. Garza at Mayo said NDPH is such a rare condition that they don’t bother researching it. The only new thing I learned was that NDPH is probably autoimmune related.

    I do go to Duke Pain and see Dr. Adkins. She doesn’t have all the answers but is very honest and willing to do whatever is out there. But my best help has come from her PA Ashley Underwood. She has done everything to try to help me. We even spoke on our turnaround drive home and she was very upset about what happened at Mayo. She told me to come on back to Duke and we would keep working at it. So for now, that I’ll do!

  13. I am looking for a doctor to treat my 17 year old son with Ndph in the Illinois area. We went to diamond headache clinic and were very unhappy. They gave him daily muscle relaxants for months which caused muscle atrophy, chest and back pain and would not admit it was caused by the drugs they were prescribing. We have tried a ton of meds, nerve blocks, Botox, accupuncture, chiropractor, physical therapy, and is on topamax and gabapentin and vitamins. He is leaving for college this summer and we are desperate to help him before then. Any ideas?

    • Hi Nina.
      We too live in (northern) illinois. My daughter, who’s now 20, has had chronic unrelenting/intractable migraine pain for 4 years. She’s seen 4 neurologists (3 of whom were headache/migraine specialists), and all keep saying chronic migraine, tho now that I’m reading about NDPH, I’m thinking that fits her to a T. She’s tried virtually every medication, botox shots, nerve block shots, and nothing has worked. Hasn’t been on migraine meds since last winter — trying biofeedback, PT and chiropractic, and still has same chronic pain. If you find a doc in the area who helps your son, PLEASE let me know. We’re so burned out with these neurologists, and don’t want to keep skipping around from one to another. Best of luck to you.

  14. We tried that Dr. Jack Gladstein of MD mentioned above who had us try hypnotherapy – which actually is the only thing that had a positive effect on my son’s pain in 2 years.

    The hypno-therapist said he started his training here http://www.hypnosis.edu/distance/ and that I can do the free 14-session program and help my son when the he is unavailable. So I plan to do that.

    Also tried botox last week, no change yet but was told that can happen 2 weeks after treatment and some people get results after 2nd or 3rd round, but must wait 10 wks to try another round. Dr. Lattimer ped neuro in MD.

  15. Anyone for an NYC or Philly specialist? Going on 9 years with NDPH/chronic daily headache. Only thing that helped was Fioricet and they made me stop taking it (Yes I was addicted.) Tried botox to no avail.

  16. In Philly, Dr. Elliot Shulman at Lankenau hospital. He was the first doc to diagnose me correctly. He has a theory that NDPH is caused by multiple problems. I don’t know if this is true or not but he uncovered my sleep problems and related psych problems. I am functional. My only gripe is that no one does anything about my frickin’ tinnitus (started same time as NDPH)…..
    Best of Luck.

  17. Dr. Gordon Robinson
    Vancouver General Hospital
    Its about an 18 month wait to get in, but I feel it was worth the wait.

  18. Dr Richard Evans in Houston, TX diagnosed me for NDPH 3 yrs ago. He
    had no remedy available. I live in San Antonio, Tx and would like to know
    if there is any doctor in this area who can help me. I have had this head
    pain for almost 5 years at a level of 9-10 everyday 24/7.without remission.
    I have gone to dozens of Dr’s with no remedy so far. Looking for someone
    in this area who understands the nature of this monster. Austin, tx. is close
    to us also. My wife does all the research for me. Any suggestions are appreciated..
    Thank you and God Bless,. Allen

  19. Dr Guy Boudreau – Hôpital Notre-Dame – Montréal
    NDPH hit me 6 years ago, I remember perfectly the date. Continue to work for weeks and at one point stopped and never worked since (the NDPH are associated with vertigo, tinnitus and blurry vision). Any eye stimulation increases dramatically my symptoms.
    After seen a few neurologist in Montreal and Ottawa, Dr. Guy Boudreau was the only one to diagnose me with NDPH and we have been working together ever since. He is very competent and he takes the time to explain every singles detail of NDPH. We tried different approaches (many medication, botox injections, alternative medicine). Don’t give up!!

  20. Dr Randall Evans in Houston seems to be quite familiar with NPDH. Website is http://www.rwevansmd.com. My 12 year old has been at Texas Children’s for 6 months with no diagnosis. They say they cannot help him after meds and Botox did not work.

  21. Hi my husband was recently diagnosed with NDPH. We live in Cleveland Ohio and could really use help finding a doctor. The one he has seen can’t see him again for 6 months and we have to wait 2 months just to get on the waiting list for any cancellations, which I am guessing if people are waiting 6 months or more for an appointment than there won’t be many. Any help would be nice. Also he is a veteran so if you know of any help the VA may(it’s a long shot)have been to anyone than that route is an option.
    Thanks so much!
    Jessica

  22. My daughter is 21 and has been suffering from NDPH since October 10, 2010. We live in the Pittsburgh, PA area and I work for a physician. You would think it would be easier for me to find someone since I work in the system. She was just diagnosed with NDPH this February by Dr. Robert Kaniecki. He is the Director of the UPMC Headache Center. After all these years of searching for an answer, he diagnosed her within 10 minutes. But unfortunately he said there was nothing he could do for us. We had to just wait for the headache to shut off. They are doing reseach and if they find something they will contact us. So is there any doctor in our area the specializes in NDPH? We have tried everything.

    • Dr Rozen is in Wilkes Barre, PA at Geisinger Medical. I know that he’s not that close to where you are but I would recommend at least putting a call in to his office to see if he would see your daughter. I have never heard of any doctor saying that to an NDPH patient. Perhaps that doctor doesn’t know what to do. There is no clear solution or cure, but there are people that have had some level of success with a variety of treatments. Dr. Rozen is known as the most knowledgeable when it comes to NDPH.

        • Donna, I am also from Pgh, and got pretty much the same response from Dr Kaniecki- ‘it’s a light switch headache- something turned it on, and something will turn it off’ is what he told me. I was wondering if you got in touch with Dr ROzen.

          • Yes I have. You have to create an account with them. They will email you a password and then you can contact him thru email. He will respond. You have to send all your daughters medical records also. He will review and decide if he will see her or not.

            As I said, we completed this process, and literally 2 days after the Mayo Clinic accepted Rachel, Dr. Rozen’s office called to make us an appointment.

            We went to the Mayo Clinic instead.. She was seen by a team of doctors who reviewed all her records, etc. Since she had done all testing that they would have suggested and tried and failed on well over 50 drugs, they did not need to do further testing.

            They even had her see the sleep department since she now has insomnia on and off which is a side affect of the headache. They had her sit in on a group session to help her get more ideas of things to try to help this issue.

            After that ordeal and them totally agreeing with Dr. Kaniecki’s findings we have not pursued this any further. Just went back to Dr. Kaniecki.

  23. My husband was diagnosed just over four years ago at the Headache Center at Jefferson in PA. We tried drug infusions, a hospital stay which was disastrous before leaving them behind. We’ve seen three neurologists in the Delaware area but none that have been able to give us options that have been effective. We also have a PM doctor and having tried nerve blocks, stimulator/interrupters (in the spine and in the head), and botox with no relief. We started with a new doctor at UPenn and he is very nice and wants to help, but he is as befuddled as most as to what will give relief. The only methods for gaining relief that have been successful are Opioid pain relievers which has had us tied us in laws and restrictions such that no one wants to prescribe them anymore or we are treated like drug addicts. Withdraw is horrible for us both and I can feel my husband giving up. My heart goes out to all those suffering out there.

  24. My daughter is going on her 5th year – rapid onset Feb. 5, 2008 after Epstein Barr episode. In reading the above, we have walked the same path. Tried everything without much success. Cannot take the meds bc of serious side effects. We had 2 hospitalizations with DHE infusion; botox; the anti seizure meds; anti depressant meds; etc. etc. Tried chiropractic and acupuncture (her pain sensitivity is so “turned on” that she couldn’t tolerate acupuncture. She is now 16 – school is a struggle but we work very closely with the system and she has what we call in Florida “504 Plan” that allows her concessions for her medical disability. I think this may be a federal program and I highly recommend that you seek this out for your child. The new school year has put us in a tail spin and her headaches have spiked back to 9 and 10s. I weaned her off all meds as the side effects were making her introverted and more depressed. We try to maintain her normal activity (but of course this has been modified greatly). She was very athletic prior to the onset but she is still involved in her sport of springboard diving. She maintains good grades (I don’t know how she does it), but we refuse to let this destroy her young life. We are in South Florida and a pediatric neurologist identified the NDPH and administered the two DHE treatments without success. We were then referred to a headache neurologist who approaches the headaches with a vitamin, diet and holistic approach. The best suggestion he had for us was Neuro Feedback and there is a practice nearby. She has been receiving these treatments 2x weekly for 3 years and they do give her COPING skills. Very important. The pediatric neurologist is Elza Vasconcellos, Miami Children’s Hospital and the headache neurologist is Steven Wheeler of Miami, Florida. Stress of school and exhaustion are key triggers…..and we get into what I can the “hamster wheel” where the headaches get stronger and then the stress of missing school or worrying about homework and tests make the headaches even stronger, etc. etc. For children in school, I feel the best you can do for your child is stay in constant communication with administrators and teachers. Give them articles and updated information so that they understand. Like all of you know, it is a silent illness and outsiders can’s see or imagine the pain and difficulty of daily challenges to function. I have been researching a lot lately bc of her renewed intensity (over the summer when life was easy, her HA remained around 3-4) since school started. I read an article where DHE infusion therapy was coupled with demerol and another drug combination with great result. But, of course, there is no “one size fits all” treatment. Good luck to everyone and I pray that we will find a miracle soon. Just don’t give up.

  25. I have had NDPH since May 5, 2013. Countless medical specialist and test since. After reading of him, and feeling – maybe there is someone who can help – I contacted Dr. Rozen this morning. I was told he will not treat or consider treating out of state patients and unless I move to Pennsylvania he will not see me. This from scheduling. So, I asked (politely) to speak to his office. They said the same thing. Then, when I asked if they would recommend anyone else – they said no. Sorry. Absolutely no compassion from the young lady in his office.

    I am in Canton, Gerogia. Willing to travel to see someone who understands NDPH and can help.

  26. Hi, I have two questions. My daughter is 13 and has had NDPH for 18 months. Our story reads like all the above with nothing working. She stays at about a 7. We tried getting back into school this year, but thus far, it is not working. She also experiences from mild to severe dizziness upon waking but the drs have found no cause.

    1. Any reccomendations in the Dallas/Fort Worth, Texas area?
    2. Any tips for a working parent? We need my income to help with medical bills, but I’m at the point of falling apart from a very demanding job, usual home stuff, and taking care of her and her schoolwork.

    Thanks

    • Hi, my daughter got diagnosed with NDPH when she was 10, after she had strep. Her headache never went away. We went to many doctors and neurologists that all they would recommend is to stay off gluten and prescribed migraine medicines. None of it worked. I finally had to home school my daughter because the headaches were so bad. We finally found a doctor who tested her for a genetic disorder, mTHfr (not many doctors know anything about this). Strep was also very high in her bloodwork. This doctor put Tara on many supplements and her headache immediately went from a 9 to a 6. We have been seeing this doctor for a year now and my daughter is back in school and feeling much better. She is now 14 years old. The doctor is Dr. Pam Grover, Dr Leila Quality of Life, Rochester, NY. I am now living in Katy, Texas and cannot find anyone here to help us. Dr. Grover will send you lab work to have your blood taken and will do a phone consultation when the labwork is returned to her. I hope you can find help for your daughter.

  27. Hello, I have been suffering from a non-stop head pain/pressure since mid-October 2012. I was finally diagnosed with NDPH by the neurologist that I was seeing in Omaha, NE in December 2013, but this only after going through everything from drug infusions, lumbar puncture, a long list of prescription meds that had no effect. I even had botox for migraine (which was a huge mistake). I also had a sleep study done and they said I had a very borderline case of sleep apnea for which I was put on CPAP, but this did nothing but aggravate my head problems. I have also been to chiropractors and a psychiatrist who put me on mirtazapine which took away my personality, not my pain.

    I moved to the Phoenix, AZ area in February 2014 and have been under the care of Dr. Vargas at the Mayo Clinic Hospital in Phoenix since May, but so far there has been no progress made in relieving my pain. I went independently to a couple different Pain specialist centers in the area and had medial branch nerve blocks and occipital nerve blocks done, all with no results. My MRIs and CT scans always come back normal. I am seeking a Dr. that understands and can help with NDPH in the Phoenix, AZ area. My head pain seems to be worse after less sleep so I wonder if it is sleep related. Anyway, I am just looking for a good Dr. that understands NDPH and how to begin treating this so I can see some light at the end of this nightmarish tunnel.

    Thanks,
    Jerry

    • Sorry Jerry to hear you are suffering so much. My daughter has been suffering for over 4 1/2 years now. She is 22 now. We have actually been to some of the best doctors in the country. There is no cure, no medications are effective for NDPH, each year she actually gets worse. They know so little about NDPH. They just keep telling us that it can turn off just like it turned on. She just underwent nerve blocks about 1 month ago (36 shots in her head). That was not to cure, but only to confuse the nerve signals. There has been no change in the headache, however there has been some type of change. In the 4 weeks so far she has not missed a day of work. Normally she survives on Family Medical Leave Act. She said yesterday, if she makes it thru December without missing a day of work, she is going to reschedule the next set of shots. So we’ll see. We’ve done everything that is possible, but no change. We are not giving up though. We will keep trying as all of you will. My hope is that she’ll wake up one morning and it will just be gone so she can have a life. I hope the same for you Jerry!

      Good luck in your search.

      Donna

      • Hi Donna, thanks for sharing. I just finished a wasted appointment with another neurologist. He said that he wouldn’t be able to help me. I took my last sick day for the appointment today, but have to use them or lose them anyway before the end of the month. I made an appointment with their headache specialist.
        Things are definitely a struggle and I just try to keep my sense of humor! Take care, give your daughter my best, and God bless you!

        • Sorry to hear that Jerry. My daughter lives on FMLA at work. She actually found a family doctor that has empathy for her. Doesn’t have any idea what to do for her, but is willing to help her when needed. She is the doctor that completes the FMLA paperwork. Rachel also sees Dr. Kaniecki at the UPMC Headache Centers here in Pittsburgh. He is the head of the department. She was misdiagnosed for 3 years before Dr. Kaniecki consulted with us. He diagnosed her in 15 minutes, then followed that with unfortunately there is no medication that works on NDPH and not much we can do for it.

          Rachel has done everything he’s asked her to do and basically he told us to call when the headache shuts off. We also are in contact with Dr. Swanson at the Mayo Clinic in Rochester, MN. And his suggestion is to keep searching.

          This past few months it really got bad for her. She was in a cycle that wouldn’t stop, missed 2 weeks of work straight, and that’s what prompted her to call for the nerve blocks. It was just a last attempt. Dr. Kaniecki had 2 female patients around her age that tried it and it helped so we are hoping it will help Rachel too.

          She actually has learned to be fully functional at a pain level of 5/6. It’s when it escalates higher that she is unable to manage anything, especially drive. So we are keeping our fingers crossed. If this doesn’t help we are thinking about contacting Dr. Rozen. She was accepted as a patient by him at the same time the Mayo Clinic accepted her. We went to the Mayo clinic since they say it’s the best place to go.

          I’m curious as to how your headache started. And did you have an illness previous to it. Some of the NDPH blog patients have had mono or lymes disease. How bout you? Rachel actually had a terrible case of mono her senior year, then about 10 months later in college it started.

          I wish you the very best too. Do not give up. It’s been very nice talking to someone that actually understands.

          • Good morning,
            I’m glad that your daughter has been able to find a Dr. that cares. ☺
            My headache started as a band of pressure on my forehead in the middle of October 2012. I had not had an illness or anything, but several factors may have contributed. About a week before the head pain started, my Mom suddenly passed away. My Mom and I were very close.
            About 8 months before the headache started I had to make a career change from truck driver to dispatch on a swing shift… Very high stress. I have prostate cancer and had to leave the road to undergo radiation therapy. (the Drs say no, but I still wonder if the radiation could be related to the onset of the head pressure.
            I went until the next Spring hoping it would just go away. But it didn’t. My primary care physician would not refer me to a neurologist because he said my head pain was psychosomatic and had me see a psychiatrist.
            After a few months on mirtazipine (which took away my personality and made me mean!) I finally switched PCP and was referred to a neurologist. I finally got in to see him about a year after my head pain started.
            He is the one, after all the migraine treatment that labeled my condition NDPH. I now live in the Phoenix area and am seeing Dr. Vargas, but with only being off work on Fridays the appointments are spread so far apart. I’m going to see a new PCP this morning though since the one I picked when I first came to AZ is nice, but doesn’t seem proactive in my care. I have referred myself to pain clinics in the area.
            Sorry to go on and on. At least I found a job here that allows me to work sitting at a desk in a call center. Most days I’m able to manage with a pain level of about a 7 but when I stand up it is difficult to walk cuz my head has this tremendous heavy pressure that seems to push me down.
            Take care,
            Jerry

          • Thanks for the info Jerry. I’ve been doing my own research on this, so I’ll add yours to it. Sorry for your loss. Sounds like you were under a great deal of stress when yours started. Rachel was too. I wish you luck at least finding a sympathetic PCP.

            We have found that if a medication works for Rachel, it only works the first time, the second is at about 50% and the third it doesn’t work. I always thought it had to do with Rachel. But Dr. Kaniecki said that it is like that for most NDPH patients. It’s part of it.

            I feel that the answers are multi-system related. Everyone just wants to look at her head, but I feel they need to look at her as a whole body to figure it out. She also has developed other health issues because of the headache.

            Well good luck and if you find anything new out, please forward.

            Take care too,

            Donna

    • Hello Jerry! I’ve had ndph for 18 months. I’ve been put thru a lot of the same drugs, tests, as you…all useless. Spent thousands on natural approaches, tried radical cleanses & diets. The pain is only getting worse, a constant 9-10! Stopped all meds since nothing worked so it’s wicked bad & I can barely function. I’m in Sedona and wondering if you have found ANY relief or DR worth trying in the greater PHX area?

      • Hello Jose,
        I’m sorry to hear that you too are suffering this constant pain. I haven’t found a Dr. that has been able to help me at all. I do think that there may be a connection with quality and quantity of sleep. I had the Barrow Institute Dr. order a sleep study. I have had them before. I had one done at Valley Sleep Center and found that I had moderate/severe apnea. The head pain is less first thing in the morning, but comes on strong by the time I’ve been up for a few minutes.

        I have chosen to work on the stress angle, but am not planning on going to another neurologist. The only thing I haven’t tried is to be tested for food alergies/sensitivity. I am on cymbalta 60mg which helps with my mood and keeps me in good spirits.

        Sorry can’t recommend anyone to see at this time. God bless!

        • Thanks for your quick reply, Jerry. I think we’ve come to similar conclusions regarding neurologists and their ndph protocol. I’ve was on Gaba 2700mg for 9 months, with no effects good or bad. Lamotrigine trial had to be aborted because of nasty S.E..The only partial, short term relief I had was on Nortryptiline…(which wiped me out!) Built a total resistance to it in just a few months. Building resistance to most meds quickly seems to be an especially wicked characteristic of ndph.

          I too had a sleep study done, since the headache the first 9 months used to start at 3am every night, then last all day (now it’s truly 24/7 and way more painful). Doc wanted me to take sleeping pills (espiclone?) every night… They were useless. Detected some sleep apnea while on my back (which is rare) so wanted to do another one with a cpap. No way sleeping hooked up to a machine be a solution for better sleep for me..so I declined.

          • I have never been one to have sleep issues, but am on lunesta as well through my PCP. My headache is hard to describe, since it is more of an intense pressure feeling or like having a heavy weight on my head. I had to go home after 2 hrs from work today due to dizziness as well. When I sit, or lie down my pain is lessened a bit, so am glad I have a job that is sitting in a call center. It was good to hear back from you. Keep me posted!
            Jerry

      • Oh, I have just started taking a natural supplement called Neuropaquell available on Amazon. Similar to Rx Gabapentin. A friend recommended it. So far it hasn’t helped, but I’ve only been taking it for a little more than a week.

  28. My son, Mike, was diagnosed with NDPH almost a year ago. He’s been to the Mayo in Phoenix–had nerve blocks, spinal taps, pain meds, acupuncture, pretty much everything. Nothing has helped. His PCP is actually a physician’s assistant who has been very unsatisfactory, not because he can’t cure it, but because he doesn’t seem to care. Mike needs a good PCP and I wondered if anyone could make a recommendation. His condition seem to be getting worse. He hasn’t been able to work and is worried about how he’s going to take care of his family.
    I also think the answers are multi-system related, but I can’t find much in the way of research. Anyway, back to the PCP, any suggestions would be appreciated.
    Thanks,
    Diana

    • My PCP is Dr. MANOJ MAKHIJA in Peoria at Sunrise Medical Associates. He hasn’t really been able to help specifically yet with the head pain, but does care and is proactive. I also went for a year to Mayo in Phoenix and Scottsdale. Also got in to see headache specialist at the Barrow Neurological Institute, but the doctor there actually said that there was nothing that they could try that had not already been tried elsewhere. I have had constant head pain for 3 and 1/2 years. Good luck with your son.

      • I have had some relief with Gabapentin/Neurontin. Not a total cure, but it brings the pain level down significantly. I take 300 mg. daily as a preventive from a pain medicine doc in the Houston area.

  29. Hi
    My name is Kirby Lynch. I have had NDPH for about 6 years now. I feel as if no one believes me about the headaches. My doctor could not believe that someone can have headaches none stop for that long. All they want to give me is blood pressure meds. Those blood pressure meds make my chest hurt. I need a doctor close to Auburn, Al.

  30. My headache began 4-22-2014. As a nurse I tried everything to cure myself first. (nurses don’t initially run to doctors for care) After trying everything, I made an appt at Cleveland Clinic. It’s a 5 hour drive for me from Michigan but I did my research FIRST and wanted to start with the BEST I could find. Dr Mark Stillman is AMAZING. He spends a lot of time with me and I’m never rushed. I get a full assessment and then he Listens Intently!!! He’s empathetic and is very knowledgeable in many headache types. I had Never heard of NDPH and he took the time to explain it in detail. He came up with a treatment plan and encouraged my input in my care. Although I still have the headache, we have NOT given up trying different things. I was also seen at Mayo Clinic in AZ because they found my Left Vertebral Artery was completely and I wanted to see a Great NeuroSurgeon. Dr Bendok in the BEST and extremely personable…. although the occlusion is NOT the cause of my headache. While there, I also saw Dr David Dodick. He is also knowledgeable with NDPH but I’m staying with Dr Stillman since I’ve established a great rapport with him and trust him. After 25+ years of Nursing, I’m unable to work but have NOT given up hope of finding something that will work for me!!

  31. My son has had NDPH with migrainous tendencies. The headaches started when he was 13 on Oct. 23. He has been struggling missing months of school. This year he has been able to attend school, but his grades suffer due to absences and the HA’s. He is currently seeing a pediatric neurologist in Milwaukee. He has been very kind considerate and active in trying to find a therapeutic regimen. So far nothing has helped.
    We tried the pediatric pain program at Children’s Hospial in Milwaukee, and was extremely dissatisfied with the general care and attitude at the appointment. Their answer was basically to deal with it and send him on to school regardless and his HAs we’re due to school avoidance. A terrible experience. Botox injections did nothing at all to improve his
    We are looking for someone who sees numerous NPDH teenagers. This has been a terrible crushing experience for my son and devastating to our family watching him suffer, and seeing him not able to reach his potential due to this terrible problem is taking a toll on us all especially my son. He is academically and physically gifted, but limited in many ways. Watching the problems it causes for him is heartbreaking, and I can’t imagine the emotional devastation it is causing him.
    Any help would be appreciated.

  32. I have read that there is an increase of tumor necrosing factor alpha in the cerebrospinal fluid of NPDH patients but the available biologic agents can not cross the blood brain barrier. There has been a study in South Korea modifying an anti-TNF alpha molecule to cross the BBB, but I could not find any human studies to date.
    Have many NPDH suffers had any improvement with intravenous prednisone therapy?

  33. I have been suffering with daily tension/migraine headaches for about 20 years. I was started on Fioricet about 15 years ago and that is the only thing that works for me. The headache is always in the morning and if I take one or two Fioricet right when I feel the pain and it goes away. I recently moved to Maryland. Does anyone know of a doctor who prescribes Fioricet in MD or DC? I don’t know what I would do without them.

  34. Unfortunately Fioricet didn’t work for my wife and at this point nothing seems to. We live in Mesa AZ and are looking for a doctor that knows anything about NDPH. Her neurologist Dr. Toffel has prescribed vicoden but that doesn’t seem to help much anymore. She’s scheduled to have another MRI with exrays (approximately 19 MRI’s to date) with a neuroimmunologist so I guess we will see what that shows. Not really thinking it will show anything as all the previous ones didn’t. She’s been dealing with this 24/7 headache now for 9 months which seems short compared to some that we have been reading about but those 9 months have been the most painful and disheartening 9 months of her life.
    Any advice or recommended doctors is greatly appreciated!

    • Have you tried the cephaly device. It’s a TENS machine for the head. It is not a cure but it can help knock down the level of pain a bit. The newest thing I’m being treated with is TMS. Transcranial magnetic stimulation. You should also have your wife start seeing a therapist not that I think she’s crazy but being in constant pain effects everything especially mood. Causes depression and that dosent help. For me it’s been 6 years and trust me it gets to you. Good luck!

      • I worked with a neurologist at Mayo Clinic for a year, then went to see a headache specialist at the Barrow Neurological Institute in Phoenix. That headache specialist told me that they wouldn’t be able to do anything that hadn’t already been tried. She then put diagnosis of NDPH and that was the end of my brief relationship with the renowned Barrows.

        • Wow. Thanks Jerry. I won’t be putting any more effort towards getting into Barrows! My PCP in Sedona tried to get me in there, 6 months into the headache. They never even responded!

          • Josee, I was so excited about getting an appointment at Barrow. I honestly don’t think neurologist is the answer. I had even gone through a week of drug infusions in Nebraska, but nothing helped.
            I do see a psychiatrist on a regular basis, since I believe there is an underlying stress element.
            Keep me posted!

            Jerry

      • I bought one a few months ago (from Fisher-Price, $700, 30 day free return). I kept it as it does mitigates the pain, while wearing it. About as good as listening to music w headphone, but quiet (you can only listen to SO much music!). I wear it 40 min 3XDay, which the max allowed. It’s supposed to do all kinds of things to your neurotransmitters, treat insomnia, depression, anxiety (which all seem to become part of the NDPH “package” eventually, it seems…).But for me it seems to work by sheer “distraction”, just for the pain, while I wear it (you can feel a slight electrical current, especially the first minutes or so). Doesn’t seem to have any residual effects, as the pain returns immediately. Still…3 X 40min = 2 hrs of decent relief a day.

  35. Sigh, this is so depressing–it doesn’t sound like anything works…my 23 year old son has had NDPH since he was nine years old–this is at least a “4” with spikes up to 9-10–at least 2x/wk…he is in Seattle but didn’t like the University of Washington headache clinic. They put him on Topamax and he was a zombie, even at the very lowest dose. It helped the pain some, but he couldn’t function. Docs at UW wanted him to stay on it longer. That was a deal breaker…has anyone had ANY success with ANYTHING??

    • Hi Pam, antibiotic treatment helped me, but Lyme was likely the underlying cause of my ndph. Along the way, I did find that diet changes brought the pain down enough to function somewhat normally. I followed the high nutrient Eat to Live diet- if you watch the documentary Fat, Sick and Nearly Dead(Netflix) you can learn a little bit about how it works and the science behind it. I wasn’t overweight- but the pain drove me to give it a try and it worked to some extent. It didn’t stop the pain completely.
      It’s been 11 years this week for me, and I still struggle with pain, but I have made progress. I think that’s what we have to aim for.
      I think everyone tries topamax, and no gets any relief, from what I’ve heard over the years.

      • I think this Lyme connection is worth seriously investigating since Dr. Tod Rozen (the most well known ndph specialist) had the best reults with his singulair/dixocycline combo, therefore treating ndph more like an infection. On that note, Monday April 4th begins the free online CHRONIC LYME DISEASE SUMMIT.

        • I agree- my first sign of relief was when dr. Rozen treated me. It took a few more years before I got the Lyme diagnosis…but it was a start. Definitely explore the Lyme possibility whether or not you found a tick or got the bullseye rash.

    • I can share something that helped like magic, free and non-toxic! Not a cure (sorry) but a way to cope…I’m still blown away as I only discovered this about a year into the headache (so 6 months ago for me): MUSIC!!! (Use, in-ear,noise-cancelling type headphone for best results).
      My ipod has become a lifesaver! Relief stops as soon as the music stops, so I figured it’s somehow distracting my brain from the pain signal (100% relief, 100% of the time, as long as the pain is below 7!). Not as good when the pain is extreme but still helpful as it works simply by distraction. I looked into it, (have read a lot of books about the brain lately, trying to understand this headache monster) and music lights up more area of the brain than any other activity, maybe explaining this incredible phenomenon. I hope this helps someone as I can’t imagine I’m the only person having that kind of result.

      • I will try that- thanks! I also found that wearing a headband- just the cheap little plastic ones helps put a tiny bit a pressure on my head- sort of like I’m fighting back the pressure inside of my head!

  36. Does anyone know of any NDPH specialists in the UK? I’ve always seen migraine experts as youve described in the post? Thanks of so!

    • Hi everyone. I just want to let you know about a great Facebook group for support of parents with children and teens with headache and migraine disorders. It’s called paediatric and adolescents headache and migraine parent support group. Mostly mums and Dads from USA but lots of chatter and support.

      My sons been doing ok. 3 years plus with NDPH and we are finding the best help for him is with a biomed Doctor and not a neurologist. Seems like healing the whole body just not throwing meds at the brain is his answer. We had the pain to 2/10 and full time school but he got a virus and it’s back up so we start again but at least now we know we can get it down so we have lots of hope.

      Good luck everyone

    • I love on LI I started with Dr. Rosen at northshore headache center tried lots of meds and treatments. Now I see Dr Brian Grossberg at the Hartfordheadache center in CT. He was originally at Montifiore in the Bronx. I use TMS transcranial magnetic pulse. For the most part the headaches are tolerable

  37. Beyond disappointed…..My almost 15 year old son was diagnosed with NDPH 62 days ago after mono. We were referred to Dr. Todd Rozen in Jacksonville Florida at Mayo Clinic.
    Our doctor sent all of the required paperwork for the referral. Mayo Clinic just called us back today to tell us that they will not accept patients under the age of 16.

    This is CRIMINAL!!!!!!!

    I am literally speechless!

    Rest assured I will not stop till I find a solution for my son!!!!!

    • We were told that only Mayo in Rochester, MN sees Peds for Neurology. Jacksonville does limited Peds, but not for Neurology…we went there last May and got the official diagnosis for my daughter, but we still haven’t found any relief for her. She’ll be suffering 2 years April 25th.

      • The mayo will only confirm the ndph diagnosis and offer no relief. My daughter was diagnosed over 5 years ago. We then were accepted at mayo mn and made the trip. The team only confirmed. At this point there is nothing that we have found to work. We have done it all. At this point she continues to live with it. Our hope is that someday they will find something that works for it. We have found that Stress is a huge factor that makes things worse. So we try to stay positive and keep the stressors away from her. I wish you the very best in your search.

  38. NDPH started at work on 12/14/14 1200 (25 yrs old female) but as you all know there is no way to say what caused it or why it is still happening. I was in South FL and went through 27 doctors, 5 mri, 1 ct, countless medications. I was informed of 2 doctors in Boston that specialize in NDPH so I moved up there seeking treatment only to find out that they will not take new patients Dr Loder and Rebecca ?. Tried a Neuro up in Boston that says they specialize in headaches and Dr Levy said he could not handle the situation and said I should be at a headache clinic which I can’t get into because he wont fill out referral paperwork and Faulkner isn’t taking new patients. Work has no sympathy for my need to move back to South FL where I was receiving treatment less than a year ago and I’ve had to fly down there instead of them letting me transfer. I’ve kept this medical issue away from them until now because they like to fire people but I’m desperate to get back to where I need to be. I’ve done Physical therapy (made it worse), medications of all sorts except Botox (not a fan) and holistic applications but nothing. How do we survive everyday with level 7/10 pain, there are times when I can’t go on anymore but somehow I keep going. I honestly thought I was going to die last year because no one could say what was wrong or why. The only medication that has worked is an opiod which NH/MA/ME etc will not prescribe due to their heroin epidemic. The doctors up north will not prescribe such a medication they try to send you to pain clinics that want referrals and then do not have appointments for 6+ months. I’ve read that having mono before the ndph was a trigger but not sure all I know is that I was on a flight 10 days before, no trauma, was at work sitting at a desk doing paperwork and bam life changed. Waited 2 weeks thinking it was temporary or it was because my birth control ran out soon (depo) but it didn’t stop. Heck I’ve even tried roller coasters etc lol. Food and caffeine do not change it. I did notice that early work shifts make it worse like waking up at 2a would be a level 10 vs waking up at 8a would be a level 5. I’m about to quit my job because they will not let me transfer in the position I am in back to where the doctors are. If I had known about temporary transfer of 6 months when I put it in the first time I wish I knew of that because I would of used that instead. Welcome to federal employment.

    • Thanks for the post. I still have incredible pain and have used all my sick days so have gone on intermittent FMLA. I have tried topical pain medications, but find that the pain is worse after I have stayed up too late and wake up too early.
      I work from 1:30pm-10:00 pm. I may be changing to an 8am-5pm job which may help.

      Does anyone have the pain heavier on one side of the head? Mine is always more on the left front of my head. I am not actively seeking any additional medical attention at this time. I thought it was related to my Hypothyrodism but that turned out not to be the case.

      Well, I have to get on with my day. God bless you all!

      Jerry Waddell
      Jerry.waddell@gmx.com

    • Hi, my 23 year old son has been dealing with this since he was 9 yrs old, so I really feel your desperation…I just read of new protocol for NHPH on the ncbi.nim.gov website. It involves taking a combination of Doxycycline and Montelucast for three months. Hard to get excited, I know ,but worth looking into? It was published on the website in June of this year under “Update on NDPH.”

      • Hi I recently was emailed this info from headache Australia and a new trial they are doing that might be of interest to you to discuss with your doctor

        New research in Australia.
        Chronic Headache and Migraine Research – Dr Susan Tomlinson
        Headache Australia is very pleased to the announce funding of cutting edge new research from Dr Susan Tomlinson, an award winning researcher who is directing her investigations towards those with chronic migraine.
        Research Background:
        The burden of migraine is amplified in those who experience chronic migraine who represent 7.7% of the total migraine population according to Dr Tomlinson. US research called the AMPP study showed that:
        Up to 80% of patients with chronic migraine have not received a correct diagnosis
        68% had not received symptomatic treatment
        60% had not received preventative treatment
        Better management and treatments for chronic migraine are needed.
        The Treatment:
        Whilst not a first-line treatment, intravenous lignocaine has had published data reporting benefits of the treatment in chronic migraine, medication overuse headache (rebound headache) and chronic daily headache. The efficiacy of lignocaine in the treatment of chronic migraine is thought to be related to the reduction of neural pain pathways in both the central nervous system and also in peripheral trigeminal nerves.
        Chronic pain literature also documents the clinical benefit of intravenous ketamine in the reduction of neuropathic pain including chronic headache. Ketamine is an antagonist (neutralising agent) of the NMDA-subtype of the excitatory transmitter glutamate that also modulates receptors and transporters in the central nervous system. Ketamine can also reduce cortical spreading depression which is implicated in the generation of migraine. In the setting of transformed migraine, it provides short-term analgesia and enables reduction in central sensitisation of pain pathways, particularly in the setting of of codeine and opioid overuse.
        Research Hypothesis & Aims:
        Patients with transformed migraine or chronic daily headache have a complex physiology. It is hypothesized in this research that the chronicity of the headache is perpetuated by sensitized neural pathways.
        This study will provide inpatient management with a prolonged subcutaneous infusion of lignocaine and ketamine (approx 10 days) which may provide adequate analgesia and stabilization of these entrenched pathways to break the cycle of pain.
        This research will monitor nerve excitability to detect changes in the peripheral nerve excitability in patients while undergoing treatment. This may potentially prove to become a useful biomarker of disease and treatment response.
        Details and eligibility for participation in this research will be posted on our website research page and via our Facebook page once recruitment begins.

  39. HI everyone. I posted in July last year looking for help as we were in a bad place with my 14 year old son. He couldn’t go to school, his pain was 8/10 all the time for years and he wanted to die, I just wanted to report that we moved away from the conventional medical thinking and found our self a wonderful biomed doctor.
    My sons pain is now around 2/10 and he is back at school full time and no sign of the crippling anxiety and depression.
    We have still to wean him from medications that never worked but have horrible withdrawals but that is coming up soon now he is doing much better.
    We found that working on making his body as healthy as we could with biomedical help, supplements, vitamins, minerals, enzymes, diet, gut replenishing with good bacteria and diet has been our answer. We have also started trialing low dose naltrexone and addressing MTHFR gene mutation requirements and we have actually had a few days of 1/10 pain.

    For my son inflammation was a problem and by boosting his bodies resources we have had just an amazing turnaround. We have yet to discover why but that may never be known.

    Vitamin D and magnesium , zinc and B6 is what made the biggest changes at the start but we have been ticking off boxes as each test comes back.

    I really recommend a biomed/ functional or integrative doctor on your health team.

      • HI Anna. I will email you the testing and suppliments my son is on. Please remember though everyone is different and there could be genes and medical issues at play so its always best to seak out a medical professional to help work out your childs biochemistry and find out what they need as if you suppliment when not needed it could push something else out of wack.

  40. Kris, so glad to hear something has helped. I truly hope and pray for all who suffer from this dreadful headache. my daughter just passed 8 months of ndph. We go to diamond headache clinic. She is taking thrive, 11 minerals, and complete omega. She has tried over 40 different meds and been infused for 11 straight days in Chicago with no relief. Please let me know what has worked for your son. My email is justin@centralrestorationinc.com.

    • I have been living with NDPH for almost 7 years now. So far the only thing that has helped is TMS. Transcranial magnetic stimulation. I live in NY and travel to CT to see Dr. Brian Grossberg, formally of Montofiore Headache Center in Bronx. The treatment makes life much more tolerable. I have tried many different treatments Botox, nerve blocks lidocaine infusion, DHE infusions,massage, biofeedback, acupuncture, reiki, chiropractic, and endless medications, and cephaly device.

      • That is fascinating news about the TMS! I’m on the very active NDPH facebook group and someone recently mentioned that they found complete relief when taping a “rattlesnake” magnet to their occipital region (where most of my pain is…right at the top of the neck/head junction). Since I’ve given up on my neuro & his useless protocol some months ago, I’m always looking for some non-toxic way to cope (I’ve found a few). So, got the magnet ($5 for 2 on Amazon), used a headband to keep it in place…and to my COMPLETE amazement, it DID stop the pain!!! Wearing it hours everyday now. Is this TMS on the cheap?? I don’t know…but I thought this was worth sharing. Even it only helps one person to suffer less…I would be delighted! I I’m looking into buying a more comfortable magnet now (like flat & round). Also got a magnetic necklace but that was not any help.

        • Hi thanks for sharing I’ll definitely try the magnets anything to feel better. The TMS is pretty pricey insurance dosen’t cover it. It’s $750 every 3 months but it is worth it. It doesn’t stop the headaches but makes it tolerable. I’m in a much better place than I was. I’ll order the magnets. I used to avoid this site because it always depressed me hearing people suffering for so long but I’m glad I did this time. Hope you get some relief. Good luck😊

          • Hi Kaci, I thought I should let you know about another non-drug based therapy that has helped me a lot. I’ve had it for a year and the nice thing is there’s a 30 day money back guarantee AND it’s very possible insurance would cover the cost (about $700). It’s a special TENS unit made for the head mostly, FDA approved for all kinds of problems and you can use it 20min 3X daily. (I’ve been doing 40 min 3 times daily). Same instant & complete relief with this unit!…but just like the magnet there is no sustained relief once I take it off. Still…I’m quite impressed. More info on the Fisher Wallace website. I avoided NDPH sites for a long time too, as it just made me more depressed…but I’m glad I did join the Facebook NDPH group. I’ve learned so much from it and there is a real connection that develops with some people over time. One young woman, who lives just a State away and I are actually discussing the possibility of meeting as our lifestyle & views on NDPH are so similar: we don’t have much faith in the standard protocol. TMS tho is drug-free & on the cutting edge for sure…I’ll keep you posted on the results of my cheap “magnet therapy”. It’s only been a few days but so far the relief is nothing short of miraculous!

          • Last night, on Chicago Med, they had a doctor undergo TMS for his Aspergers. This was off label since it has been approved for depression. I’m glad that it is helping with your situation.

    • Have sent you an email of what we have tried. Hope it gives you some ideas. Please remember though everyone is different and there could be genes and medical issues at play so its always best to seak out a medical professional to help work out your childs biochemistry and find out what they need as if you suppliment when not needed it could push something else out of wake and make it worse. Good luck

    • Angela, did you find a DR in Georgia? We are looking for a Dr in the Atlanta area if possible. My 13 year old daughter has just been diagnoses with NDPH after seeing the neurology team at Nationwide Children’s Headache Clinic in Columbus, Ohio. We live in Marietta, GA (outside Atlanta) and have been working with a local neurologist who had been treating my daughter for migraines. Need to find a dr. with some experience with NDPH. Thank you.

  41. Were you able to put a list together of doctors for NDPH? My husband has been suffering since August 7 and he is on his second neurologist. His neurologist told him that he is discouraged and doesn’t know what else to do today. We are located in VA and will go where we need to go to get the help that he needs. We are so very discouraged right now. He is so angry and takes it out on me and the kids and says he just doesn’t want to be around anymore. He is in constanf suffering pain and now his doctor is letting him down. Please help 🙁

  42. Anyone else lose all hope sometimes?
    NDPH for 2+ years and doctors just throw meds at you. I recently moved to Boston to get into Faulkner with Rebecca Busch or Dr Loader but neither are taking new patients. In return I am flying to FL regularly for treatment. I’ve tied regular Neuros in the Boston area and I’ve gotten no where but being given SSRI’s that make things worse. Other doctors won’t work with me in New England because of the Vicodin and the heroin epidemic. MGH was a nightmare who did no lab work or anything beyond BP and strength testing and then released me and they are supposed to be #4 in the nation for neurology. MGH #4 in the nation, doctor had never heard of NDPH before and said I’d be fine with having the tingle/numb in my arms and legs because if I run into something I’ll feel it, she also leaned against the wall and said “I don’t know what’s wrong”. I left FL in hopes someone at Faulkner could give me an answer anything and now I’m royally screwed and stuck here because work won’t let me go back. I cannot quit because I’m an adult and you have to be responsible but I don’t know anymore.

    I have new symptoms on top of this nightmare and am wondering if anyone else has experienced the same or similar:
    -tremor
    -paresthensia (tingle/numb in legs/arms)
    -chest pain
    -dropping things
    -falling down
    -often lightheaded/dizzy
    -walking on air feeling/lose your steps

    All MRI/CT/ Blood work comes back normal and it’s a nightmare. People say no answer is a good answer but honestly I’d rather have someone tell me I have MS or Cancer rather than have no answer. If I was told MS or Cancer then there is a treatment plan, there is something you can do, instead doctors look at you and say I don’t know.

    • Please have a look at Lyme disease symptoms. Many of your symptoms in addition to the headache are similar to what I had, and after 6 years I was finally diagnosed with Lyme. Treatment has helped significantly, though I haven’t completely recovered. Ask to be tested for coinfections as well, or look up a Lyme literate medical doctor in your area.
      I know it’s a nightmare. I hope you can find relief soon.

    • Thank you for sharing. I have had this terrible affliction for almost 5 years. Have given up on meds. I don’t know if it is what you are feeling but I sometimes have muscle aches like my when body has been through a workout. I have had balance issues and a foggy heavy, yet lightheaded feeling as well. It is very hard to describe. I feel a little better when sitting or lying down but when I try to do anything they requires standing or walking or any activity, my head feels like an incredible weight is pushing down on it. I pray for you and all the others here. Drink plenty of water and get a full night’s sleep. I think those two things are also connected as is the health of the gut.

      • My sons had NDPH for 4 years. First 3 years we were in and out of hospital
        This last year we are working with a biomed/ functional / intergrative doctor. A real doctor with holistic knowledge and we have him at a baseline of 2/10 from 8/10. Dizzy and anxiety at an all time low and he is back at school full time. some Days his pain is more just a dizzy feeling than pain. Mostly used vitamins and minerals but addressing also gut bacteria and mthfr gene mutation problems with supplementing. Excersize , water , diet and regular sleep
        Cycles also helped. We have our 14 year old boy back from a very dark high pain place.

        • Hello, my daughter has had NDPH for almost a yr now. Nothing takes the pain away. She gets married in 3 months, hope the pain stops soon. I as well have tried holistic approach for her although I’m sure other options are still out there. Can u tell me who helped your son and how.
          Thank you for sharing.
          Justin(Daddy)

          • Justin I have my sons biomed journey on an email I am happy to send it to you. Email me your email details to Krispycat @ hotmail . Com. Without the spaces. Sorry on my phone ATM and can’t see if there is a direct message function.
            Kris

        • HELLO KRIS, COULD YOU PLEASE TELL ME THE NAME OF THE BIOMED DR YOU FOUND?
          My daughter has tried over 50 different meds, chiropractic, massage, cranial sacral, minerals, supplements, infusions, shots, acupuncture, etc. No relief. HELP!!

        • Kris,
          That is good news! Thanks for the update. After seeing 3 neurologist headache specialists and many pain Doctors, I am convinced of the connection with the gut and with water consumption as well as sleep. Sometimes my pain is more of a dull achey dizzy feeling. I wish your son continued blessings moving forward. Take care.

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