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A Reader’s Story: Living With New Daily Persistent Headache

Andy recently “celebrated” his third year anniversary of having a constant headache. He’s determined to keep it from defining who he is, which we all know is a constant struggle.

I woke up with a headache on January 22, 2005 and it’s been there ever since. I also determined through my own research that it is New Daily Persistent Headache — it has the symptoms of chronic daily headache without the traditional migraine elements.

Most days it’s pretty mild, allowing me to live my life fairly normally as long as I’m distracted by my job, family, baseball game, etc. But it never goes away. It’s always there, and it’s really devastating to think I’ll be spending the next 50 years of my life in pain. 50 years! See how terrible that sounds? I just came across this blog for the first time and it’s somewhat comforting to know there are other people out there who can relate to that. Depressing, yet comforting.

I sometimes wish I would have been in a car accident or suffered some specific traumatic experience so I could at least pinpoint an occurrence and say, “It’s awful, but these things happen.” In my case, all I did was wake up. It’s maddening, but I try not to let it define who I am.

Like others, I’ve spent the past several years seeing many specialists and trying dozens of medications — all to no avail. I’m currently taking an extended-release form of Tramadol (and Vicodin every few days) but aside from offering a few hours of slight relief, they just make me fatigued like most of the other meds I’ve tried.

We’re all in this together, which is why it’s so important to hear stories from many different people. If you’d like to share your story with readers and me, please e-mail me or leave a comment.

For more information, see the National Headache Foundation on new daily persistent headache and Her Life in a Nutshell, a blog about the disorder.

65 Responses to A Reader’s Story: Living With New Daily Persistent Headache

  1. Thomasina says:

    I always had headaches and migraines, but two weeks after my son was born, eight months ago today, I got a migraine that hasn’t quit. Not for a day, not for an hour. I am just now starting to accept that, yes, this is who I am now, and this is going to define what I can expect of myself. Tough, with a new baby, who I was waiting for and looking forward to for so long. I am disheartened and often depressed, also trying to get newly diagnosed bipolar II sorted out. My husband is great, telling me I am not a different person, only my definitions of myself are changing.
    “Intractable migraine” my doctor calls it, and apologizes for not having a “magic bullet” drug. He’s working methodically at it though, and is certainly empathetic and serious, listens and answers all questions. I don’t feel a need to try out other doctors.
    So I try the different medications, give each a fair shot. Topamax holds the worst at bay enough to function at home, but I’ve had to quit my job (50% of our income gone – food stamps anyone?). Nothing else seems to really touch it, including the hospital treatment. Thank goodness for health insurance!
    And thank you for this blog … I have found out I am not the only one, not crazy, and have found some really great resources (such as SS disability might be an actual option from the MAGNUM site).
    Best of luck to all of you in similar situations. Keep your chins up – even if it hurts.

  2. Karla says:

    The scary situation is being the one who develops the new persistent headache problems… and being the one who carries the insurance and is the primary source of income. Scary stuff, I can relate. Sometimes I get home from work and have no idea how I managed, but somehow we do it. The biggest problem for me is the guilt I feel for having to collapse for a while when all I want to do is spend a little time with my child after work. It’s slowly getting better though in different ways. Over the past year I can look back and see that there were far worse times than now. … I’m rambling, and should probably go to bed. I just wanted to relate since it’s not often I find people in the same situaiton. I think one of my real challenges is “freaking out” and “what if-ing”. When I am having a really bad time of it for weeks on end I feel really sorry for myself and start to panic that it will never get any better and we’ll all end up homeless and that I’m not a great mother b/c I’m tired and cranky, etc. I’m probably not the only one who beats myself up like that, but it sounds ridiculous when I’m typing it now!

  3. mik says:

    You could always try smoking marijuana, it really does help, especially back pain and dull, lingering pains. Most modern medicines are synthetic chemicals which emulate the function of certain natural ones. Marijuana latches onto serotonin receptors which causes a build up of serotonin, the neurotransmitter which is responsible for feeling calm, relaxed, happy and level-headed. Plus all the government propaganda is exactly that, propaganda. It is completely safe, otherwise someone would have died from it during its 6000 years of use, 100 million americans wouldn’t have tried it, and more than the 0.01% of ER visits would mention marijuana. Mention it, mind, not that it was the ONLY reason for visiting.

  4. David says:

    Andy,

    I’ve had CDH for just a few months longer than you, with onset under similar circumstances. Bam, out of no where. After a trip to the Mayo, dozens of doctors, I found one that recently prescribed Baclofen–a muscle relaxant. That has been my only relief. TRY IT! All the best.

    David

  5. melissa says:

    Reading your story has given me hope. Not to sound wierd or anything but you have just showed me that I am not alone. I may not have had this problem as long but myself as a headache suffer even a 11months is too long. I too have a headache everyday and night without the typical migraine sypmtoms. I occasionally get nausiated but it is from the pain not the headache. I am a stay at home mom of three young children so there is no way to stay down. I take Vicodin everyday but my tolerance has gone up and searching for better relief. Debating whether or not to try marijuana. Just a few days ago I had to let go of the hope of finding a cure, a diagnosis or even the dream of the headache to just suddenly go away the way it came on. Thank to this site I am learning that I am not wierd or alone, its hard when doctors don’t believe your pain. Thank you for your story it is saving my sanity.

  6. Angela Johnston says:

    I just wanted to write to Andy and ask him if he has tried Indomethacin. It is a drug that specifically takes away Paroxysomal Hemicrania Continua (which just means violent outbursts of pain on one side of the head continuously). If he does not have it then the drug will do nothing for the headaches but if he does have it then it almost always takes away the headaches. It is worth ruling that one out. I have recently been sent to a headache clinic and they are trying to see if this drug will help me. Of course the headache has to be on one side only and it must never switch sides. My eyes are always affects and I look like I am really stoned or so tired that I can’t keep my eyes open any more than just slits. Take care of yourself and just keep on trying to find the right meds. I know it can be a nightmare.

  7. John Kuhlman says:

    From my youth on, I had severe headaches. I lost the hearing in my right ear in 1968 at age 45 and the hearing in my left ear at age 50 in 1973. For the last 35 years, I don’t have headaches. It seems that I traded a loss of hearing for a loss of headaches.

  8. gina hensley says:

    My daughter has been diagnosed with New daily headache she is only 14 getting ready to turn 15 this month, but she has been in constant pain since the middle of january 2008. She had all kinds of test done on her and the specialist that we had really didn’t believe that she was hurting. So we changed doctors and on the first visit he told us the bad news that this might never go away. So they have finally trying to just ease the pain for her, because 4 out of 7 days her pain (on a scale of 1-10)is usually hitting about 11-15. I am very proud of her because she hasn’t let the pain slow her down to much. She is still very active, talkative and loves playing jokes.

  9. Melissa B says:

    I woke 1 year ago on my husband’s birthday with a headache. I had never experienced headaches before so I knew something wasn’t right. That morning, I started with Tylenol, 4 hrs later tried Ibuprofen, then Advil. By evening, I began experiencing ringing of the ears, dizziness, etc. I assumed I was having my first migraine. By midnight, I was miserable with the pain. Once I finally went to sleep, I woke by 2:30am with screaming pain. My husband took me to the dr first thing the following morning. We expected I would be given the usual migraine shots and sent home. Due to several “red flags” as the dr. called it, I was sent for CT scan and MRI. When the tests came back normal, I was prescribed vicodin and phenegran and sent home. That was August 13, 2007. I have a headache every day, all day and night long. I become confused and have a difficult time making sense. I get so aggravated. The headache is a bandlike, pressing, sometimes burning, dry headache. They are not always the same symptoms and I sometimes wonder if that could be the medicine I’m taking at the time. Though, I have not taken meds for days at a time and that only leads me to the worst headache ever. Twice in the past year, it has thrown me into a migraine from the pain. I feel like I am losing my mind. I was prescribed percocet in November 2007 and currently that is my only relief though it only “takes the edge off.” The pain doesn’t leave, it is just eased slightly. After several neurologists and doctor visits, I now doctor at Cleveland Clinic. In December, at Cleveland Clinic, I was given a “cocktail” intraveniously twice and that has worked for 3 days then 5 days. Other than that, I have not been headache free since last August.
    3 days ago, I had a 6 month check at the CCF and was given 11 injections in my head to serve as nerve blocks. The nerves on my forehead and temples are numb but the headache is still here – 100%+. Saturday, I felt that I was losing my mind. Eventually you feel that you’re the only one in the word experiencing this pain and discomfort. I cried to my husband because I feel like I don’t know how much longer I can go on.
    I do not miss work with my headaches simply because my headaches are the same whether I’m at work or at home. I could stay home every day due to the pain level but after 13 months, I would no longer have a job. I am so relieved to have found this site today to see that this is the EXACT diagnosis for me. I am glad to know that there are other people who can relate and understand. I do not wish this feeling on anyone else but now I KNOW I’m not losing my mind. The pain is sooo real, I sometimes have a hard time believing it myself. I have no doubt others have a difficult time believing someone could have a headache 24 hrs/day, 7 days/week, 365 days/year. I hope that a combination of meds works soon. If anyone has any suggestions, feel free to email at gl_mbostic@seovec.org

    ******
    Hi, Melissa. I’m sorry you’re suffering so much. The forum might be a good place to look for some input. It is full of lots of caring, understanding people who are also struggling with headache.

    http://www.thedailyheadache.com/forum/

    Take care,
    Kerrie

  10. Becky F. says:

    My 16 year old daughter has had New Daily Headache for over 3 1/2 years. It started with a viral cold and has never let up. We have spent thousands of dollars on medical tests and doctors and the only thing we have found to be helpful is Cymbalta. It is an antidepressant but has pain properties. Before she started the Cymbalta she was in so much pain that she was on the couch 24 hours a day and if she did anything it made her much worse for several days. After starting Cymbalta she went back to school, got back in touch with friends and smiled again. She says the headache isn’t better but she can cope with it much better. I know Cymbalta won’t work for everyone but talk with your doctor about it, it just might help. We were told about Cymbalta by a headache specialist from OHSU.

    Has anyone out there found that they get sick easier after the headache starting or that they don’t get better very fast once they get a cold like your immune system is low?

  11. cinregor says:

    The other day when I read the few lastest entries in this blog, I thought, there are others who suffer like me and, apparently, as long as I have. Unfortunately, I found no comfort in that thought. I did not see or feel from any of the entries any level of depression that I thought would be inevitable. A level I am experiencing even with daily doses of 10 mg of Lexapro. My partner says he sees a difference (he has yet to say “improvement”). I feel only one effect: I can not cry anymore and I don’t think that’s helpful. I’m not really one of those people who shed tears on a regular basis for any reason. However, I am depressed, sad, and often, on a regular basis in such pain that I should be crying myself to sleep. I used to, prior to Lexapro. Now, I’m just depressed, whatever that means. Depressed enough to think about suicide, but definitely too much in love with life as it used to be, my partner, my wonderful friends and eager to be a part of the future of my grandchildren (one by marriage and one with 1/4 of my genes). I have all the pills I would ever need to pull it off quietly and quickly, but those moments, those tiny moments, maybe even minutes, when I am almost pain-free that I find even the thought of leaving them voluntarily an impossible choice.

    In one month I shall be living with a constant migraine headache for 3 years. After seeing many doctors with many specialties, experiencing many MRI’s and CAT scans, and trying almost every drug they can think of (both OTC and prescribed) I am left with 15 mg oxycodone every 4-6 hours, (really not a pain eliminator), several sleep aids (that’s really the only time I am totally pain-free), Ondanseton, 8 mg, for nausea, and Fentanyl CIT, 800 mg lozenges (for those headaches that exceed 10, though I rarely take these because I don’t think they are that effective and that drugged/nauseous feeling afterwards is almost as bad as the headache). I had a series of Botox injections into the temples October 1, 2008. I thought the results good with a month of headaches averaging below a 5 and of shorter duration. However, the second series of injections, January 16, 2009 have not produced the same effect, though we are still waiting to “give it a chance.”

    As I said, I found no comfort in knowing there were other humans suffering like me, what I need to know is what can I (we) do to get back to our normal lives? For your information I am a 67 yo, and a retired horticulture professor living in SE Florida.

    ***********
    I’m sorry you’re suffering so much. Although it may not be a comfort just knowing there are others with severe migraine, it might help to get their advice or learn more about what they’re going through. You can do this on our forum: http://www.thedailyheadache.com/forum/

    It took me a long time to figure out what antidepressant was best for me. I wound up on a “cocktail” of three different drugs. A psychiatrist was the one to come up with this concoction. My depression has been much better in the last year.

    Take care,
    Kerrie

  12. Alyssa says:

    i am 21 years old, in college, and at the prime of my life. however, i do not feel like im living up the college dream. i developed NDPH after having severe mono my senior year in high school. it has been debilitating ever since.

    with multiple trips to specialists and the emergency room, i most recently spent 2 weeks in the hospital following numerous tonic-clonic seizures. after a medical withdrawal half way through the spring 08 semester, i feel as if my life has just been falling apart.

    i too feel as if i have tried every medication out there… many which would never be thought of to relieve pain. i joke the i have more medications in the pharmacy. narcotics, botox, DHE sprays, injections, iv treatments and nerve blocks have all been within the past year with no relief.

    while i sit here in tears writing this, i wonder if and when the pain will go away. it has completely changed me as a person, as i feel i have lost part of myself. while its never good to hear others are in pain, its almost comforting to know that im not alone. sometimes i feel as if people dont take me seriously, ‘just having a headache’. i enjoy reading the suggestions everyone has provided, and hope to get some support from those who can really understand what i feel day to day. i wish all of the best for all of you.

    alyssa

  13. Carrie Porter says:

    Alyssa,
    I feel like I wrote what you wrote on the above. My daughter has had constant headache since for 2 years, lost 1/2 of her jr and sr years in high school and probably cannot start college in the fall though she got accepted at the only school she wanted to attend. She has shared your same feelings with me, losing part of life, people not taking it seriously – many drugs tried. She always gets side effects and the drugs don’t help. The only thing that helps is when she is in a hospital on IV DHE, Toradol…..once she is out – the headache is just as bad. She feels she is losing her life and can’t function most of the time. I’m so sorry for what you are going through – Carrie

  14. Lisasmom says:

    My seventeen year old daughter has had a constant headache for three years. My heart goes out to all of you or your loved ones who are suffering as my daughter has. Seven neurologists did not see that she had occipital neuralgia. She had nerve decompression surgery and has gotten her life back. She still has the constant headache but her pain level has been reduced enough that she can function now. She is back in school and doing things with her friends. Her present neurologist, Dr. Pamela Blake, thinks that she will continue to improve over time as her nerves recuperate from being compressed. She also thinks that my daughter’s sleep problems and muscle problems could be contributing to her remaining headache. If you want to learn more about this minimally invasive surgery or want another source for ideas and support, check out http://www.mdjunction.com Our group is called New Daily Persistent Headache.

  15. NicNat says:

    I suffered from constant migraines for 3 and one half years. Saw two neurologists and one anesthesiologist/pain doctor. Ended up with a drawer full of meds none of which worked. However, oxycodone and fentanyl lozenges provided the most, though not complete, relief over the last year. Finally the pain doctor insisted that I go to Thomas Jefferson Headache Clinic in Philadelphia, Pennsylvania. I made an appointment that took three months to complete. Once there I was hospitalized for 6 days. Given various IV drugs. The following week I was released and recuperated at a friend’s home in the area. It was hell. I suppose it was partly detoxification from oxycodone and getting used to daily 100 mg Topomax. It is now three weeks later (at home in south Florida), I am still quite weak, feel like a 95 year old man (I am 67 and otherwise in good health). I still have a few headaches, but they are in the range of 1 to 3 out of 1 to 10. They were always 5 to 10 before. I have no idea what the future holds. I have found my mind and my body responds to stretching and lifting light weights (something I never did before) and slow walking. I’ve begun reading again. I love to read, but the physical stuff seems to take my mind off my headaches more effectively. Any other suggestions for my rehabilitation would be most gratefully received.

  16. Darlene says:

    The treatment that has most helped my son is acupuncture. My son, now age 14, has had a chronic headache (new daily persistent headache) since Oct. 20, after having H1N1. We started acupuncture about three weeks ago (once or twice a week). It stops the nauseau completely and lowers his headache pain level more with each session and for a bit longer each session. The pain now decreases to a 1 (on a 1-10 scale of pain) and lasts over night. We’re hopeful this treatment will continue to increase the relief for longer time periods and eventually eliminate the headache. There is also an “elimination diet” that eliminates foods that contribute to inflamation (wheat, dairy, soy, corn, sugar, chocolate, etc.) and has helped people with a variety of conditions within 14 to 30 days. Your letters demonstrate your grief and suffering as well as your hope and perseverance. And I hope that you each find relief–soon.

  17. Melissa in Bakersfield says:

    I’ve had a chronic headache since 8/14/2005. I just woke up that day with a headache that never went away. Initially it was really bad pressure in my ears and extreme sensitivity to light and sound.I’m only 34yrs old and have a pretty stress free life. I’ve been to so many doctors (2 neurologists, 3 ENTS, a neurosurgeon, chiropractor, maxiofacial surgeon, a TMJ specialist, an orthodontist, accupuncturist, chiropractor, 2 pain specialist-including one at Cedars Sinai whom I saw for a year and did nothing for me, 2 massage therapists ,spent thousands trying to find a solution. I changed GP because I was just getting fed up with my doctor and him shooting down EVERY little suggestion of what it could be after all the research I had done. My OBGYN recommended a new doctor last January and that is who I have been seeing. He is an Internist as well. Anyway, he’s run a number of tests on me, all came back normal. Sound familiar? The last thing I had done was a neurologist try botox injections. I had 10 shots on the back side of my head- 5 on ea side. It didn’t hurt at all. He said in 2 wks I would know if it was effective or not. Well it’s 2 wks today and sadly, they did not work. But I figured that out days ago. Alcohol does take the edge off and if I am really distracted I can avoid thinking about it. As of right now, I am waiting for another referral to an ENT per my doctor. I don’t know if tubes in my ear would help because that is really where it all stems from. All ENT’s say it all looks “normal.” Somebody just shoot me!

  18. sarah says:

    Hi, My son wil have been suffering from New Daily Persistant Headaches for 2 years this September, triggered by the Epstein Barr virus. He has tried too many medications to mention finding only imipramine 150mg now a day has any effect. He has struggled through his studies, although now is only able to make every other day down to chronic fatigue and still has dreams of becoming a doctor.

  19. Karen says:

    I have had chronic daily headaches for 4 1/2 years. I have been to many doctors-neurologists, pain management, accupuncture, chiropractors, massage, psychologist, psychiatrist. I have collected many different meds. One worked, but had awful side effects. I am seriously considering going back on it and dealing with the side effects. I have also considered botox, nerve stimulator or nerve ablation . Headaches are ruling my life.

  20. Dara says:

    My son (11 years old) caught a virus and developed a headache on January 11, 2010. His symptoms seemed to be ‘strep like’. He had an upset stomach, a rash on his tummy and headache. His strep culture came back negative but was treated with an antibiotic for 10-days. After the 10-days, the only symptom that remained was the headache. Then he was tested for Lyme Disease. The test came back negative, but the pediatrician put him on doxycycline anyway. After 10-days of doxy, his headache was excruciating. Another trip to the pediatrician and they sent him to the emergency room for a spinal tap. Spinal tap fluid tested clean – no sign of infection. Ordered a CAT scan – came back clear. Admitted to the hospital for high test drugs (DHE-45 primarily) and they were treating it like a migraine. The headache did come down in intensity, but was not eliminated. We began seeing a Pediatric Neurologist who continued to try and treat him with several different migraine medicines (many…including Maxalt and Amitriptyline). We went to neurologists at Hopkins, Children’s Hospital, University of Maryland Medical Center, the MidAtlantic Headache Clinic, and Sinai Hospital searching for a diagnosis and treatment plan. He had an MRI and an MRA/MRV – all of which were normal. On March 10, 2010, he was diagnosed with New Daily Persistent Headache. We began treatment with Topimax and slowly and methodically ramped up to 150mg – but there was no relief.

    His headache got worse every day with no periods of relief, and when it became unbearable we’d go to the hospital for a few days of DHE. He also began experiencing a heightened sensitivity to sound and developed phonophobia. He started wearing noise cancelling headphones and soon became addicted to them…needing them all day and even slept with them on. Any noise became very painful , and he wanted total silence. We finally began looking into alternative medicine. We started having an acupressurist come to the house. She provided him some stress relief and relaxed him a bit so he could sleep better at night. Then we saw an alternative medicine therapist that performed Craniosacral Therapy (http://www.integrated-therapies.com/Therapies/craniosacral.html). On May 3, 2010, he had his first Craniosacral Therapy treatment. His headache drastically improved after the first treatment. His headache was gone after the 2nd treatment on May 6, 2010. After one treatment for his hearing, he was able to take off the noise cancelling headphones. The therapist (who we refer to as the ‘healer’) continues to work with my son on the hearing sensitivity as he needs to retrain the cochlear nerve in his ear to regulate sound again. I should also mention that the alternative medicine therapist reviewed the MRI (that 5 different neurologists had already reviewed) and showed us his collapsed eustachian tube (which contributed to his hearing problem) and tissue at the base of his head that was ‘twisted’ and under ‘tension’. Why did none of the neurologists see what she saw? Our healer said they look for different things…like cancer, shadows or tumors. She looked for structure and was able to prove using the MRI the things she described and felt during her craniosacral therapy treatment.

    He has his life back. After spending 5 months at home, not going to school, seeing multitudes of specialists and 2 hospital stays, he is finally returning to normal.

    I write this post to hopefully reach people who can benefit from our story. When he was diagnosed with New Daily Persistent Headache, I surfed the web and read many a blog with sad stories with no happy endings. We are fortunate to have found treatment that worked for us. We hope that this information is helpful to you and that you too find relief from your headache.

  21. Larry says:

    I found this blog while searching for more information on NDPH. For the record, I’m on my 28th year with this infuriating headache, and have also tried most of the doctor types, and drugs they prescribe. Nothing has worked on the NDPH, but muscle relaxants (Soma, Zanaflex) taken at night seem to dull the muscle tension in my neck that contributes to the discomfort. No drug or alcohol can touch the NDPH, however.

    I cannot think of anything that caused the onset in my case. Perfectly healthy and happy, then awoke one morning in 1982 with this pressure-tension band headache. I had it for a couple days, and it went away for 24 hours. Next day it was back, and it has been with me ever since, never, ever going away. It has been worse over the last 5 years, making me miss work occasionally, which means it is really bad. I, too, would rather be at work occupied with something than be home thinking about it, though. I occasionally get some relief from the headache, down to a 3, and have no idea what happened to get the relief. This usually lasts for less than a day, then back to a 7 or higher.

    God bless all others that have had much worse experiences than I have had. I know exactly what you are experiencing–at least part of the time. I sometimes dream about what I would do first if the headache ever goes away. Stand back world!

    My kingdom for a cure.

  22. Denny says:

    Hi everyone. I had a strobe light going off in my head for about 25-30 min. After the flashing stopped the headache started. That was over two years ago. I started off with my regular doctor who tried to treat me for over a year. Well I understand by the other postings that I am not the only one that have no luck finding treatment or even a correct diagnosis. I was then sent to a neurologist who told me that I was having seizures and started treating with pills and liquids of every color and shape. One left me so out of it I found myself in the next town with no idea where I was, why I was there, or how to get home. I have had two EEG’s, two MRI’s, two spinal taps and 4 CT scans. I was told that I had some scarring on my brain. Believed to be for a blow that I had to my head when I was 13 years old. By the way I am now 42 years old. I am now going to the Diamond Headache Clinic in Chicago. I have only been going there for about two months. I am told that they are the best in working with NDPH. I was put into the hospital and they ran every test they could think of.

    I guess what I don’t understand is doctors can take the heart out of one person, put into another and make it start again. But something that affects so many of us ( a headache that never goes away) and it seems more like they throw everything at it and see what sticks. No one has any answers. This has been affection men and women for decades and they still do not have a fix for it.

    I can relate with the posting about wishing there had been some type if injury or there were some outward sign so that maybe people could understand how painful these headache are and how it affects your entire life. I feel that I am a very strong person but there are days I just want to sleep all day because it is the only time that I don’t want to pull my hair out.

    I wish all of you the best and here’s to someone finding a fix for this life that has become a nightmare of one pill after another, one test after another, one shot after another. Just give us a fix.

  23. GSD says:

    My husband has suffered for over 10years now- not one day has he had total relief from the headache.
    Hes had MRIs, countless drugs, but nothing.
    The nearest we have come is one migraine Dr suggested a conexion with his snoring and suggested a sleep clinic. This is mainly due to the fact that the worse his snoring , the worse his headache is when he wakes. If he sleeps on the settee, sitting up, its not quite so bad on waking.

    Unfortunately our Dr doesn’t want to fund the sleep clinic as its outside our health auithority and we can’t afford to go private.

    Anyone had the headache for longer, and got rid of it?

  24. Tox says:

    It’s been 10 months now with head ache for me. I’m 17, and I haven’t been able to go to school, go to restaurants or movies, travel to my summer cottages or nothing. Just found out yesterday that it’s NDPH I have got. FUCK IT!

    Incurable? It feels like my life is ruined… it will never go back to be the same again.

  25. Melissa says:

    I know how you feel Tox. I have been essentially crippled by my headache for the last 6 months, and was told by a neurologist this last week that it’s NDPH, and that there’s no cure and no treatment :( I also feel like my life is ruined. Like its worthless and going to be wasted laying around in pain. I can’t work full-time. Even just working part-time is nearly impossible. Even just playing a simple game with my son or cleaning the house leaves me with incapacitating pain. Does anyone have any suggestions for what I can do to reduce the pain so that my life is at least a little bit livable.

  26. Sally Miller says:

    I too found the blog when looking for anything that has worked for others with NPDH. Have tried many drugs, botox – but still not relief. I have found that I need to go to work for the distraction – no matter what the pain level. I don’t think I have been below a 7 for a very long time! I was hoping that some day I would wake up and it would be gone, but doesn’t sound like that happens!

    Keep posting – as others have nice, nice to know you are not alone in this struggle! Come on modern medicine – you can come up with something!!

  27. Jamie says:

    I just having spent a whole 2 weeks in the hospital with an intractable migraine and coming home still having a headache and having the dr telling me about NPDH feel very helpless right now. I am the mother of 4 and am a nurse as well. I feel as though others often view me as a though I am attention seeking and not ill at all. It becomes very frustrating to have this pain so severe to be taking meds all the time and know that the pain is real yet having others look down at you all the time second guessing if your pain is real or not. Its sad to say that Im glad to know there are others out there in pain as well but I know that you all know what I mean. Topamax has been a huge lifesaver for me in helping the severity of my migraines but lately its just not helping much and I am resorting to having to use more and more narcotics which leave me feeling very run down and groggy. I absolutely hate feeling this way and hate the fact that these daily headaches effect my daily activity and my quality of life with my family but I think the thing that I honestly hate the most is how being sick and taking meds all the time makes people view me!

  28. JB says:

    I am reaching my second year of NPHD. I remember the exact date (June 1st 2009) when my headache started. Like everyone else it is 24/7 365 days a year. I have tried most of the drugs listed here and like most nothing works. Recently i went through 8 straight weeks of a level 8 headache (9 has me in bed all day and a 10 in the hospital). For some reason it went down to a 5 for the past few days. What a difference!!! It is hard to explain to people how the pain affects me so much, many people get headaches but not like ours….unremitting, painful, life changing.
    It even makes it more difficult because my wife does not understand what I am going through…no pity, no comfort, no empathy at all. She just thinks I am lazy! I have not heard anything in the posts above about how people deal with this type of situation. My biggest support comes from my doctor and family who always ask how I am doing. My wife never asks, which is very hurtfull. My only wish in life is for this headache to disappear, but I cannot see the light at the end of the tunnel. In two weeks I will finally try Botox injections (just approved to treat migraines, therefore covered by insurance!) I am praying for some relief.

  29. James says:

    To everyone,
    Isn’t unusually that we can all remember the exact same date, usually upon waking, (August 8th) our headache started, and that it is permanent in nature. This is exceedingly rare in all illness, even amongst the rare headache types.

    Their will be little interest in curing this pharmaceuticly; its rare, and although the demand is incredibly inelastic, if it works well, it is curable through surgery or a short term pill, it would provide little profits. Ive read about a lot and seen the highest order neurologists and headache specialists and they recommended simply not taking anything; don’t waste your money, side-effects (headache medicines can make headache permanently worse-which I dont recommend if your headache is unbearably, id try anything) and invite the stress. I would doubt any headache medicine has not been tested with any success; we would know it, it would be recorded if not studied.

    Therefore its clear that we are on our own. Its 4:23 am and I’m at home wondering late into the night, as I have every day since August 8th,2006 what on earth happened over the night of August 6th inside my body. Like poster Tox I was 17. I am 22 now and I don’t want this kid going through college the way I have.

    With 28 previous posters I suspect we all have something in common. I began my post with the three most blatant ones, but their are surely others. They indicate something specific happened. An independent variable. I would suggest a regression analysis of the variable and demographics of each one of us might provide a starting point.

    At the very least we could all get an MRI and get a doctor (orhtopedist and MRI and maybe pts understand the muscle under the skull the best Id imagine). I’ve always thought cranio-sacral therapy a placebo treatment but will definitely try it. If anyone else has tried it please note results.

  30. James says:

    James:
    White Male 17 at onset
    New England

    Onset Over Night, with headache awakening in the morning. Previous day had taken 1 dose of accutane known to cause increased intracranial pressure due to an increase in cerebral spinal fluid. upon discontinuing no relief was achieved (almost always is if accutane-caused). Suffered intsense flu-like symptoms 1 month previously

    Steroids provide no relief
    Acupuncture – no
    Massage – no
    antidepressants (tricyclic) – worsened

    Abnormal Blood tests:
    AnA Titer 1:180 speckled
    Aldolase 9.5 slightly high
    CPK 450 slightly high
    positive for past mono,CMV (i suspect largely irrelevant)
    MRI reviewed by neurologist – normal

    Has anyone here had a cfs pressure test in a spinal tap?

  31. James says:

    for those with severe pain i would suggest triliptal, an relatively safe anticonvulsant, it slows down the speed at which nerve send electrical signals. It often helps quite a bit in tinnitus and I would suggest giving a decent dose of that is worth examining

  32. James says:

    last thing – is lyme disease suggested in any of these cases? this is a worthy test because lyme can infect the cns and cause inflammation in the meniniges which i would imagine gives a headache similar to ours.

    Anyone remember any physical trauma, sleeping funny or something in the days before?

  33. Courtney says:

    39/w/f
    I have been a migraine sufferer for a long time and take Topamax for them. But these are different headaches, they are like bands around my eyes. Just talking about them makes them prominent. I am already on Cymbalta, Lyrica and percocet for other pain that I will have to live with all my life due to complications from a surgery. But I dread having to live with this pain too since my quality of life is already reduced due to the first pain I have to deal with.

    I have tried my existing medications already, including flexeril to relax the muscles, and am now trying tramadol for the pain, and tizandine (sp) for the muscles since it is specific for migraines and headaches. I have tried accupuncture but it hasn’t touched this headache, chiro, massage, etc. I will now look into Cranofascial Therapy, thanks to the earlier tipster I can’t recall the specific DAY this started since to tell the truth, I have been in pain for the last 2 years, just not always with a headache. But I know I have had THIS headache since before the beginning of May 2011 (which is when I first complained about it to my Neurologist).

    Interestingly enough, I had mono (Epstein Barr Virus) (for the second time in my life) from last September to this past March, and had a virus-> bacterial infection in Feb and again in May. All of these things could possibly be triggers if there is any coincidence in the other stories.

    Thank you to everyone who has posted, I will be curious to see if others post with any successes, however small. My brain MRI and neuro-opthamologic exam are on Thursday since the neuro didn’t see the cones/rods/discs? he should be seeing in the backs of my eyes.

  34. Sarah says:

    In October 2008 I woke up one day with a headache, and it hasn’t stopped since then. I can’t seem to find anything that helps. I take Lortab or Percocet or Vicodin to try to help ease the pain, but nothing actually helps…I feel bad for all of you who have to suffer through the same thing. I am glad however that I’m not the only one who is going through this. I tried amitryptaline for a little while, but then I got pregnant so I had to stop taking it before I knew if it would work. I haven’t started taking anything else because I don’t want to take anything that will take time away from my son. I had a nerve block before I was pregnant, but that did absolutely nothing. I’m 26 years old and it’s going on 3 years, and it makes me sad to have to realize that I’m going to be living with this for the rest of my life.

    I’m considering trying botox injections to see if that helps. There’s also a new cosmetic surgery for the frown line…I think that’s right…I have a 10 1/2 month old son and we are trying for a second baby right now and I just don’t want to do anything that could take me away from my son or cause harm to an unborn child.

    I’m also glad to know that I’m not the only one who has had suicide cross their mind. I don’t think I could ever do it though because I have too many people who depend on me, and I could never voluntarily leave my son.

    My husband is sort of helpful, he gets that I’m in pain, but he doesn’t understand that the reason I’m so “lazy” is because I’m in pain and anytime I try to do anything it just makes it worse. The vacuum is too loud and makes my head throb worse. The only time I feel a little relief is when I’m sleeping, and even then I’ll often wake up from the pain and then have a hard time going to sleep.

    The medications that I’m taking don’t take away the pain the just give me the “I don’t really care right now” feeling, but it still hurts. I tried marijuana, but it didn’t help. I was really hoping it would, because it seemed to me like it was my last hope.

    I’m going to continue to go to the doctor and try to find a cure or a treatment that will work. I know it’s going to be a lot of money, but I want my life with my children to be a great life, not one filled with constant pain and little blips of my children. Thank you for letting me rant and for starting this blog.

  35. Rona says:

    If anyone has any information on how I can contact Dara who posted on June 5, 2010 to find out her son’s therapist’s name and contact info, PLEASE pass it on to me or please pass along my contact information to Dara. My son is in a similar situation.I am desperate to try to help him. I would greatly appreciate the information.

    I do want to share with others that doxycycline was very helpful (there are small studies out there-check them out), but his stomach could not tolerate the doseages that were working 100 mg/2X/day. It caused him terrible nausea, even with probiotics. I am hoping this information will be able to help someone.

  36. Judi says:

    Like all of you, my daughter, now 18 woke up one day with a severe headaches that has not gone away in 4 years. She has seen all the same specialists and has done all the same treatments/medications that have been mentioned. She has yet to get below a pain level of 7.
    Her current neurologist has mentioned possibly trying a hospitalization and using IV with DHE. From what I am reading, it sounds invasive, with minimal results. Has anyone out there tried this

  37. Darren says:

    I agree that there is little comfort pain wise in just reading how awful our headaches are affecting all our daily lives, i am however somewhat comforted knowing I’m not the only one with a constant annoying somewhat debilitating headache. I have had mine for nearly 3 1/2 years now. It started around the same time I was diagnosed with MS. My nuerologists claim one isn’t the cause of the other and while they consider my MS a below average case, it doesn’t take away my constant headache. Like many of you I am reading about I was a guinea pig with a few drugs to no avail, I even saw the head of the headache clinic dept at the Cleveland Clinic. He couldn’t figure out the cause, what category to define my headache as since I had some symptoms of this headache but missing one element, some of that headache but missing one element, etc etc, finally I just decided that although I’m sure he’s good at his job he wasn’t helping me. I do wanna try acupuncture because I have never been a fan of pumping chemicals into my body. So I just deal with the pain each day, I am a professional golfer, so already having to keep my mind focused on the course has become more difficult with these headaches. Thank you for this site, I encourage you all to keep fighting, God will take care of us if you will keep the faith in him! He will never give us something too hard to handle, although it may seem that way for us in our never ending headaches, trust him and he will take care of us all!

  38. Nathalie Tremblay says:

    Hello,

    My name is Nathalie and I just found this website.
    A neurologist just told me that I probably have the New daily persistent headaches. My headaches started at the end of June 2010. I had a scan and a MRI done and they found a pututary agnoma of 1 centimeter. Apparently the headaches are not related to the tumor. I saw 5 different specialists, with no results. I am off work since September 2010. I have tried a long list of medication without any success. I tried acuponcture also. The headaches are their every minutes of my life and are worst if the wheater is bad outside.
    Does any body found a medication that works?
    thank you!

    Nathalie

  39. Barb says:

    Last August marked the 16th year I am living with NDPH. As with others, I remember the moment it started and it hasn’t left me; not for one day or one hour. I’ve been through several neurologists, specialists and pain clinics. I have tried just about every pain and headache medication plus nerve blocks, injections, IV treatments, physical therapy, accupuncture, chiropractic and psycho therapy. The pain wakes me up often during the night and I sleep with ice packs around my head. The last MRI showed UBOs or migraine markers. It was almost a relief to finally have physcial proof of my condition. Most people, even some doctors, look at you with disbelief when you say you have had a headache for 16 years. I am working now with the Diamond Headache Clinic with little success after 5 months. If it weren’t for Prozac, I think I would have caved into a deep depression years ago. This is a very difficult condition to live with and treat. Good luck to all the others out there!

  40. Suzanne says:

    Hi Everybody: I’m a 55 year old woman. My headaches started a month and a half ago. They are not debilitating, only annoying. More pressure than pain (unless I bend over, stand up quickly (new symptom), laugh, cough, sneeze or bare down). I also have tinnitus – although it is not severe. These symptoms come and go – although I have the pressure and tinnitus most of the time.

    I have had hay fever since I was a child, and I always get systemic allergy symptoms this time of year (Fall) and in the Spring. I would occasionally get sinus headaches, and taking an aspirin and an antihistamine would alleviate the headache. But that does not work on these daily persistent headaches at all.

    What I have been doing, and what has helped a lot(although not entirely gotten rid of the pressure, etc) is to use a neti pot with saline solution twice a day and using Manuka honey – both in a solution with distilled water as a nose drop and taking the honey orally. I’m also doing neck exercises (I work at a computer with 3 monitors for 8 hrs a day)and sleeping with a contour pillow that supports my neck.

    I began using the pillow several months ago, when I developed tingling in my fingers at night in bed. I went to a physical therapist because of bursitis in my knee and mentioned to her that I had tingling in my fingers – I thought it was carpel-tunnel. She emphatically told me that the issue was with my neck – that it wasn’t carpel-tunnel – and she prescribed the pillow. Since using the pillow, I rarely get the tingling anymore…

    Anyway, I’m mentioning this because I do believe the sinus/headache issue does have something to do with my cervical vertebrae. A chiropractor friend adjusted me last week, and the 2nd and 3rd day after the adjustment, I felt much better. So I am going to continue with the chiropractic treatment.

    The other thing is that I do believe, in my case, anyway, is that there may be a psychosomatic element to my head pressure/tinnitus problems. I have always had digestive issues from the time I was in my 20s…and about a year ago I began to believe that my negative thoughts towards food were causing the problem (I’ve always struggled with my weight – and because there were so many things I couldn’t eat, as they caused stomach aches – I was able to keep my weight down to a healthy level.) Once I began to believe that the problem was mental (with physical symptoms) I was able to control the negative thoughts associated with food. I am now able to pretty much eat what I want with only occasional problems…and I’ve gained about 5 lbs. So…I believe I am, maybe, substituting the headaches for the stomach problems????

    I’m just wondering if any of you also have the issue with “tingling” in the fingers and whether or not it could be related to the headaches/pressure, etc. And also, whether any of you think you may have issues that could subconsciously be manifesting themselves in these daily persistent headaches…

  41. Paula says:

    I have been suffering with NDPH (New Daily Persistant Headache)now for 4 years. I have gone through every test and medication imaginable. September 7, 2010 I had surgery to get a Neurostimulation Unit implanted. It’s a box similar to a pacemaker unit that is implanted in my upper chest area right below the skin. Wires with electrical leads run under my skin from the unit, up my neck, behind my ear and then across my forehead. It supplies electrical impulses to the area where the leads are (under my skin on forehead). The unit can be adjusted so that you control the amount of sensation thru a remote unit. You can find out more info through St. Jude Manage Your Pain Website. There is so much I want to say about the unit. It has changed my life. I don’t think I’ll ever get used to having wires with leads on them in my forehead. But it’s well worth it. It’s a somewhat new procedure and most information you find on the web pertains to its original use which is for spinal cord pain. Some people who have the Unit for headaches have the leads implanted in the back of the head. Mine are in my forehead. I would love to talk to anyone out there who also has the implant. I’m also interested in other peoples stories on how they manage with the same problem. please comment and lets chat.

  42. Liene Pieters says:

    After 6 months of daily headache (with at the end 8 strong painkillers a day) and several test in the hospital, the docters told me I had NDPH. First, I tried some medication for epilepsy, but that dind’t work very well. Then the doctors gave me some antidepressants, called ‘Prothiaden’. I had to take 25mg a day, wich is a very light dose, and doesn’t work for real depressions, but it helped me. After almost 4 months, I woke up and I just forgot to take my medecins, because the headache was gone.

    Now, that was 14 months ago… and I’m still living without a headache. :)

    I hope ‘Prothiaden’ will also help other people like it helped me. To me, ‘Prothiaden’ really was a gift from heaven :)

  43. joe says:

    I was taking my girlfriend for her birthday dinner. The date was Oct.3 2009. It was approximately 430 pm when I got hit head on with this headache. It came out of nowhere for no reason that I could surmise. I was sure that I had a tumor or fluid leakage or worse. My family doctor sent me for an MRI and I awaited the horrible news. The results? Absolutely nothing abnormal. Then why has my head hurt for 3 weeks I ask. I don’t know was the answer and he sent me to a neurologist. She tried me out on migraine medications to no avail. I would go 2 to 3 times weekly to my family doctor for pain shots. I thought I was seriously going crazy. Finally my neuro diagnosed me with NDPH. I was relieved to finally put a name on my condition and gratefull to find out it was not fatal. I also found out that is no cure. There are treatments. I have tried two different combinations of medication and am now back on my first combination. The second combo did nothing. I am back to amatryptaline and zoloft. I take dilaudid for the pain. If anyone needs some support or wants to chat about our condition, contact me at lippsjoseph on yahoo.

  44. Achava says:

    I have had a headache since February 12, 2011. It hasn’t gone away except for a few days in May. I found out on December 5 that it was New Daily Persistent Headache. FML. Reading all of your stories, God bless you all, and let there be a cure soon.

    I had to leave school early during the last half of 10th grade at least 8 or 9 times the headaches would get so bad because of the noise at my school, and now I am doing virtual school at home for my junior year. My neurologist had thought it was cluster migraines, and said there wasn’t much she could do, and didn’t think there was much the headache specialist could do for me either. B.S. The specialist put me on Neurontin when I went on Monday, I started that medicine Tuesday night. So far it has helped a tiny bit without the horrible side effects the Depikote had when I took that in combination with the Topomax.

    I have already been to the ER twice because it has gotten so bad, and the two times were within 5 days of each other. It wasn’t very fun, they couldn’t find a good spot for an IV. I think I was poked 4 or 5 times the second trip to the E.R.

    The next step is more meds to try, which I hope work better than past attempts. I mean, the Depikote worked, but I was so drowsy and non-functional on it I got over 3 weeks behind in school, and was like a walking zombie, even when they cut the dose in half.

    I just can’t believe that this headache will probably be around forever if all of your stories are anything to go by. I hope you all find your miracle cures soon.

  45. Angie says:

    Hi,
    I have had my headache for over 9 years. Please visit my blog site for details if interested. I think I may have found my cure and it might be interesting for you all to check yourselves for this also. There is a huge controversy in the medical field as to what are normal thyroid levels. Mine, according to the AMA and half of the medical profession are in the normal range. The other half of the medical field believe we should be treated as a patient not a number. I gave up on my doctors and started researching any symptom I had had in my adult life. They all added up to hyperthyroidism. I’m not saying that this is the answer for everyone, but I am hoping it is my answer! I have started thyroid medication and most of my hyperthyroidism symptoms have improved. I still have my daily headache, which by the way is a symptom, but the severity level is improving. Please visit my sight for more information as I will be blogging about my past history and my new journey every week. I sincerely hope that this can help others! Feel free to share and comment on my site. We all need support!
    headachesurvival.wordpress.com

  46. nancy says:

    My son who is 15 woke up one day with a headache and flu like sypmtoms and the headache has not gone away. They think he has ndph and he is on neurontin which i am not sure is helping or not. He is functional and can go to school but it is hard to concenrate. It was good to read all the post and i have alot of questions to ask the neurologist next time i see her. His pain is in the back of his head all the time. He does say that eating make him feel better. I did have his thyroid check and it is normal, his mri was normal and his eye exam. Did anyone have an eeg? My friend daughter has this condition too and she is on cymbalta and it seems to help. they went to the cleveland clinic for help. she is in college and functioning.

  47. Jannette says:

    As I sit in my darkened room reading your stories I realize I am not alone but also realize I’m stuck with this pain. I was on holidays in Bali sipping a vodka on the beach I fainted woke up with a headache and I still have that headache 11 months on . I’ve had every test some of them painful . My family try to be supportive but they really can not understand what it’s like to be in constant pain and have no diagnosis . If I knew what it was I would deal with it . No pain meds work nothing relieves it ever . The drs ate treating me as of I have some sort of mental problem . I’m all out of hope maybe it’s time to accept this is how I will have to live . This headache sucks the joy out of everything I do and though I try to live a normal life it is becoming impossie to smile through the pain . Any suggestions I will try

    Feeling a little less alone at least

    *******
    No, Jannette, you are definitely not alone, but you are NOT stuck with this pain! NDPH is not well-understood in the medical community and some people have trouble finding effective treatment for it. However, there are effective treatments — it is a matter of trial and error to find the one that works for you. Don’t give up hope. For the best treatment options, I recommend seeing a physician who has specialized knowledge in headache disorders. You can find them here http://www.headaches.org/physicians and here http://www.migraineresearchfoundation.org/resources-links.html.

    Here are some good articles on the topic:
    http://www.healthcentral.com/migraine/types-of-headaches-41643-5.html
    http://www.headaches.org/education/Headache_Topic_Sheets/New_Daily_Persistent_Headache

    Take care,
    Kerrie

  48. Andrea says:

    I’ve just been diagnosed with NPDH and while googling it, found this website. Hello everyone! Sorry to be part of your club but glad to meet you.

    My headache started 12 years ago and like many posters, I’ve tried everything – it’s been quite an odyssey. I should have kept a journal because I can’t remember all the drugs I’ve tried, but there are the usuals: neurontin, topomax, lyrica, cymbalta, amitriptylline, and of course the daddy of them all, steroids. Also Botox and nerve blocks. Nothing worked. I’ve settled on two percocets a day, supplemented with 2-3 Tramacets which are a lesser pain killer and non-addictive. I hated being on the heavy-duty drugs. Just the idea that I was taking something that my body “had to get used to” by slowly increasing the dosages was so against my nature. It also made me very foggy.

    A year ago I finally caved in and went on disability. I thank fate every day for being born in Canada and having adequate health insurance. I know that many people struggle with this issue and the added stress that it brings.

    A few years ago I went to see an osteopath, who felt that the head pain might have been caused by undiagnosed whiplash. I did have a nasty fall about 2 years before this all began where my feet went out from under me and the first thing to hit the edge of the outside stair was my head.

    I also have the herpes virus (hate saying that!!) but since there may be a link to viruses, it’s worth mentioning.

    All MRIs come back normal. I can’t believe that I can be in this much pain and nothing shows up.

    I hope that everyone finds their own way of dealing with this and also a drug regime that works for them, at least enough to take the edge off. Now if they could just lower the volume on the sirens on emergency vehicles, I might get through one walk without cowering in a doorway.

    Peace to you all,
    Andrea

  49. Kaylene says:

    Hello all, Welcome to my nightmare! Your nightmare is also my families nightmare. My 13 yr old daughter woke up with a headache 7 weeks ago and it has not left her since. I must say that I am surprised to find that so many people suffer from this. Until 7 weeks ago, I did not even know that there was anyone alive who could have a headache for more then 3 or 4 days. I was sure she had a tumor. We have been trying different drugs, she is currently taking Gabapentin but I am not sure if it is helping. She says it’s not helping but I noticed that she seems to cope better on it so for now I have left her on it. We have tried pain killers, muscle relaxers, everything OTC. Waiting to get into a neurologist and it is depressing, none of them can see her till May! Meanwhile I’ve been trying to work with our family doctor who seems to know nothing. I have been telling him what I want done. Seems Like all I do is research, I’m hoping to find a clue and the key to unlocking her pain. Maybe if we all put our heads together we can figure this thing out or at least help each other to do that. She is going in to see a eye doctor tomorrow for a papilledema. She did have a CT scan without contrast and an MRI but the MRI did not show the area of her head that hurts because she has braces and they conflicted with the MRI. It’s been frustrating to say the least because I wanted the CT scan to be with contrast and they didn’t do it. I also want a spinal tap to be done because I am concerned that this could be IIH. From what I have read, IIH is a common cause of Headaches that do not respond to treatment. If everything comes back normal and we can get her on some drugs that will allow her to return back to school then I believe that I will turn to homeopathic/herbal medicine. Anyone here tried homeopathic medicine? I believe that that NDPH is a symptom not a diagnosis. The NDPH is telling us all that something is off balance but with so many possibilities it’s like trying to find a needle in a haystack.

  50. Kaylene says:

    P.S, My daughter did try cranial Osteopathy and it took her pain level down from a 8 to a 2. She had the procedure done again and it took her pain down again more then half. Each time she has cranial osteopathy, it reduces her pain by more then half. The problem is that it only lasts for about an hour and then the pain steadily rises again. This leads me to believe that the headache is cranial pressure. Anyone else here tried cranial osteopathy?

  51. Kaylene says:

    Have a friend in CA who uses Medicinal Marijuana, says it will stop a headache dead in it’s tracks while everything else failed. Thinking I may have to move to CA and try it! Anyone here ever tried Medicinal Marijuana?

  52. Danielle says:

    After reading all of these stories, I’m terrified for my future. Im only 16. On May 2, 2012 I got a migraine and it hasn’t gone away in over 3 months. Most of the time it’s just a really bad headache, but other times I’ll get an aura and get an awful migraine with it too. All of my doctors has said its daily chronic headache. I’ve seen more doctors than I can even count. I’ve had over 5 nuerologists, and one of them, Dr. Robbins, from the Robbins Headache Clinic, told me to just deal with it because I have to deal with it for the rest of my life. I’ve also seen 2 pain specialists, an ENT, a pediatric rhumetologist, a chiropractor/acupuncturist, a physical therapist, and countless other doctors. I’ve been on almost every medicine there is out there, the most helpful is fioricet for me. I’ve been hospitalized 3 times because the pain was too unbarable. I’ve also had many nerve blocks which helped a little bit at first, then stopped working. And I got an epidural in the back of my neck which was supposed to get rid of the headache, but it ended up making it worse. Then I got Botox and it has helped a little bit, but I expected the pain to be completely gone. I’m a dancer, and poms starts in a week, there’s no way I can dance in chronic pain like this, then go to school the week after that either. I have no idea what to do. All I do is cry because I’m so stressed out and I don’t wanna live my life like this… I can’t even function or work and barely get to see my friends. And I didn’t even finish school last year. I won’t finish high school if this keeps going on… What else can I do?

  53. Yvonne says:

    My husband has ndph now for 5 years. He sleeps
    15 plus hours/day. He suffers with severe nausua
    accompanied by nausua as well as slight dizziness. All the above medication that has
    been posted by others, he has tried and failed. He has had several back surgeries over the years to correct mild spinal stenosis. We had hoped
    that the head pain would let up with the
    correction, however that also proved it was not spinal related. Accupucture did nothing, skull shots failed and botox was a waste of time. So here we are with you guys with the same failed results and runnning out of ideas. Our lives have turned upside down. I feel guilty when I want to get away for a few days with my
    girlfriends due to his condition. I retired
    from my job after 26 years and hoped to have
    a little fun visiting with my 2 grandbabies but
    I would worry about him the entire time. But I
    hear your stories too and know that your loved ones also feel the same way. I am still praying that one day there will be a remedy for this
    terrible disease. At least I’m not alone in this for we know that it is terrible for the family members as well. Thanks, and God Bless.

  54. Jodi Spencer says:

    I have been suffering from NDPH for 11 years straight, I have never had any relief from it as of yet, and have been trying for YEARS to rid of this. On the morning of 10/16/2001 I got the worst headache of my life, and veritigo to top it off. The vertigo hung around for a couple years, and now I only get it once in a blue moon. But the headache never left. Since that day, I have suffered from this dreadful headache, which most of the day it is severe.
    I have had MRI’s, and too many different medications to even try to count. I am now going to wean myself off of the medication I am on now, and am going to try acupuncture. What can it hurt?
    I wish my best to all of you~

  55. Jen D says:

    I am glad to find this site! I stated my journey Dec. 4. As a travelling sales rep, i unfortunately had to go out on STD in March due to the headaches and myofascial pain. I couldnt drive anymore. Since then, I have lost my job. We have run every test, tried multiple meds and had no change. I went to a new headache specialist last week who finally diagnosed me with NDPH. We are starting with new med regimen and occipital nerve blocks.
    It is hard to deal with the pain and frustration, but I find it harder to deal with the misunderstandings of my family and friends. My husband has been a rock, seeing me through every bit of this (especially hard when I was the financial big earner), and he gets it. But I am finding myself isolating myself from others because they cant stop themselves from giving advice or telling me how they deal with their once a year migraine. Anyone else run into this and have ideas for me???? Thanks for listening

    • Jen, EVERYONE has an opinion on how to deal with headache or migraine, whether they’ve ever had one or not! I generally say, “thanks for the suggestion” and leave it at that. I’ve found that my energy is too limited to waste it arguing with people who really just want to help. Best wishes in your search for an effective treatment. I’m glad you’ve gotten a diagnosis.

      Kerrie

  56. Debra says:

    My 16 YO daughter started NDPH with a severe episode of Epstein Barr Virus at 11 years old. Never sick before that! We have experienced it all like you. Hospitalization 2x with DHE, Haladol, Botox, anti seizure meds, Topimax and Depakote. I want to share that I took her off all meds – particularly the Lexapro and Valium that I felt were taking her down a dark path and I started worrying about her safety and hurting herself. We do not use any type of drugs now except Alleve for her cramps during periods. What has helped us is NEURO FEEDBACK. Although it doesn’t stop the pain of the HA, it has given her great coping skills. I hope and pray for a miracle or for her to wake up one day HA free, but I highly recommend any of you looking for something new to seek out NEURO FEEDBACK.

  57. LAR says:

    I am not the sufferer, but a concerned relative of a young women that has been diagnosed with NDPH. She has suffered now for over two years and isn’t getting any better. Has been seen at a prestigious headache clinic and is on a regimen that doesn’t really seem to be providing much relief. I have been following Dr. Gupta’s documentary on marijuana and am curious as to whether others with NDPH have tried marijuana and what effect it has had. Thank you.

    • I’m not sure about it’s use for NDPH specifically, but for headache disorders in general, patients seem split pretty much in half over whether they feel better or worse with it. There are many different strains and the strain used can make a difference in how a person feels with it. Because of that, she’d be best off getting it through a dispensary in her state, rather than a friend’s cousin’s brother’s roommate.

  58. Kevin says:

    Hi

    I have had constant headpain since Nov 2011. Similar to a lot of others I have seen numerous neurologists who initially said they should be able to help, since then I have embarked on a succession of different drug treatments (beta blockers, painkillers, triciclic anti-depressants, anti-convulsants, NSAIDs etc..), as well as nerve blocks and 3 rounds of Botox injections. Nothing has done anything at all to change the level of pain. I can take a ridiculously high level of painkillers and it has no impact.

    I am still waitintg for a test to determine my levels of intra cranial pressure (not got an appointment yet), but this appears like a bit of a long shot. I think that my pain is very different from a normal headache. When I used to get a normal headache (which was rare), it was a pain in my head, a throbbing pulsating pain. But the pain I experience now is very much on my head (in the scalp, on the outside). It stings and burns, it can also itch. The pain can be found all over the head, with certain points that are really sore (as if there was a big cut on my head, or a large sore/boil). The neurologists don’t seem to think this is significant, but I think it sets the pain apart from normal headache. I suffer from anxiety symptoms, but the neurologists do not think this is significant either (or not in terms of my treatment options). I would be grateful to hear from anyone who experiences their NDPH pain on the surface of their head, or am I alone in that. Also to say, the pain when I wake up in bed in the morning is normally not there, but comes on shortly after I get out of bed. I have lived with this for a long time now, and there seems little on the horizon that fills me with hope. I try to take each day as it comes, and not think to much about the future. There is much I want to do, but feel this is holding me back. Enjoyment of life seems to have been sapped out of me. Good luck to everyone in a similar state.

    • Kevin,

      I’m sorry you’re having such a hard time. Have you seen a neurologist who specializes in headache? NDPH can be difficult to treat, so it’s best to see someone with as much exposure to it as possible. The first few links on http://www.thedailyheadache.com/resources are to headache specialist directories. Also, have your doctors talked to you about rebound (medication overuse) headaches? It sounds like your NDPH started before you began taking them, but I want to be sure you’re aware that taking more than 10 doses of painkillers a month can both make the headaches worse and make them more difficult to treat.

      Best of luck finding a helpful treatment.

      Kerrie

  59. Kevin says:

    Hi Kerrie,

    thanks for the quick reply. I no longer take any painkillers, and I very early on found they didn’t help so there was never any chance it was a medication overuse headache.

    I have been fairly lucky in the Neurologist I have seen is a headache specialist. He is the medical director of the National Migraine Centre. He has also referred me to other specialists at the National Neorology and Neurosurgey hospital to get second opinions on the diagnosis and my case. It is with that hospital I am awaiting an appointment for Intra Cranial pressure monitoring. This is not just a spinal tap, but a probe inserted into the skull for a 48 hour period which will continuously monitor the pressure (sounds pretty scary to have a hole drilled in your head, but I’m told they do 4-5 a week, and the neurosugeon performing it is a world leader in this field). This procedure is being done as my head pain seems to ease after a period of lying down, and isn’t there when I wake in the morning. So they want to rule out pressure changes as a result of body position.
    I sort of hope it’s no NDPH, as there seems to be little evidence based treatments. But if it was high pressure, then the surgery to correct that looks pretty nasty.
    I still think it has to do somehow with Anxiety (or that is how it started), and now I am in this daily repeating pattern for so long, even though the anxiety has gone my body cannot get back to it’s normal state. Take care
    Kev

    • Kevin,

      It sounds like you’re doing all the right things and are reading up on different possibilities. Intracranial pressure monitoring seems scary to me, too, though it would be great information to have. I do know people (including my mom) who have had shunts put in to relieve pressure and have great success.

      All in My Head by Paula Kamen and Chocolate and Vicodin by Jenette Fulda are memoirs about chronic daily headache (and, I believe, NDPH). I’m not sure how much treatment information you’ll glean from them, but it’s nice to read stories of people who have been through the same thing.

      Please keep us posted on your treatment and what you learn.

      Take care,
      Kerrie

  60. Kevin says:

    Hi all,
    just a quick update. It’s now been nearly 9 weeks since I got the results of my head, neck and spine MRI (which basically showed everything looks normal). I was told I would be put on a waiting list for Intra cranial pressure monitoring that would be in the next 2-3 months, but about 5 phone calls later I can confirm I have been put on the list (but do not have a date yet). Guess this take longer than anticipated. I was also referred to a specialist for NDPH, but was told the wait list for a simple consultation was 9-12 months.

    So it appears that I will just struggle on and continue to be a guinea pig for various medications. Been taking venlaflaxine for about 3 months now. The headache might actually be slightly better than it was, but not sure if it has just basically improved my mood, which in turn makes me cope with the pain better. I am getting the feeling of trembling / shaking inside all the time. Feelis like the physical sensation of fear, but I have nothing to be afraid of (so not the mental anxiety). This came on really bad after I stopped meds for a few weeks (pregabalin, and had been taking anti-convusants for about 14 months for the neuropathic pain; topirimate and gabapentin). It has settled a bit, but is there everyday. Also, it could be this is taking my focus away from the pain in / on my head.

    Anyone else get the shakes / trembles? I don’t look like I am shaking, but I can feel it inside (I guess like butterflies in tummy, but in arms, chest and shoulders too). Good luck to all fighting this, there has to be something that will help

    K

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