If you have been diagnosed with NDPH / New Daily Persistent Headache, you could easily answer this yourself. Most of us have had the exact same experience. You are going about your life, when one day, out of the blue you get a headache. It’s worse than any headache you have had before. It doesn’t lessen when you take a hand full of Motrin. It doesn’t ease up when you lay down to relax. If you are lucky (or just plain exhausted), you can sleep through it most nights. You may notice it if you toss and turn at night.
You begin the search for answers, because the headache is still with you. It never fully goes away. You probably end up in the ER, getting scanned every which way and poked and prodded. Maybe someone takes pitty on you and gives you some morphine. Good stuff, eh? You still have a headache, you just don’t care all that much that you have a headache.
Time goes by and you see some docs, many docs. You try many different medications, with varied results, but limited relief. Everyone and their brother gives you advice because they are sure that their once-a-month migraines are just as debilitating (they are not). You are so desperate you try everything from drinking more water to hanging upside down over your couch. Kidding on that last one – that may be the one thing I haven’t tried. Maybe that’s because my cousin’s best friend’s mother didn’t recommend it.
Got the idea? New Daily Persistent Headache starts with the rapid onset of an intense migraine quality headache with no known cause. And it just seems to go on endlessly. The doctor who diagnosed me explained it clearly. Imagine a light switch with a dimmer. The headache goes up and down, but never really shuts off. When the dimmer switch is turned all the way up, you have intense pain. This intense pain often goes on for days, months, and sometimes years with out getting turned down much at all. When it is all the way down you have a dull ache that, after enough time, you become so accustomed to, you hardly notice it. The person at the desk next to you may complain and need to leave work early with a headache that wouldn’t phase you at all. You are thankful for such an ache, because you know it could be so much worse.
NDPH seems to be resistant to most migraine medications. Gee, maybe that is because it is not a migraine. So people with NDPH just go on as best they can, trying new meds, testing out folk tale medicine, exploring natural alternatives, supplements, herbs and snake juice with the hope of getting some relief.
Hope. It is essential to your daily life. I have to believe there is some solution out there for us. I have to believe this. The thought of living my entire life this way is unthinkable.
That sounds very familiar. My story began almost 15 years ago , December 8, 1994. I was a passenger in a car and all of a sudden, out of nowhere, I got a severe pain in the back of my head. I have never felt anything like it. I just remember holding my head. It was hard to lift it up. Fifteen years later, I have had a headache, different levels, every day since that day. After many ER visits and many many neurologists, I have no answers.
That is how so many NDPH stories begin. We can always remember the time/ place when it started and it never really goes away. I’m sorry that you still haven’t found an answer after all this time. It is so hard to keep trying new meds or treatments, getting hopeful and then having the headache remain the same. The ups and downs – between hopeful and hopeless – are the most difficult for me.
Dear Amy,
I came to know about you from hubpages. I liked your articles on “10 little ways to show your husband that you care”. It is a good one and I liked it very much. I’m reading more articles which you had posted in websites. It is mind blowing information.
I’m sorry for NDPH which is troubling you as you had mentioned. I appreciate your efforts in creating this blog specially for NDPH people. It is well organized and good information to all visitors.
I would like to introduce you to a gr8 physician who is in the town who can cure your NDPH. He is well renowed person and He has cure for everything. Do you want me to tell the name & location of this doctor?….
His name is Jesus and He is right beside you waiting u 2 call Him and talk to Him. Jesus created you in His beautiful image and He knows what is good for U. Jesus is your daddy and He takes care of you always. You are set free from all health problems in Jesus name.
You know how much blessed you are. He has given you wonderful wisdom to be a blessing to many in your writings in all websites.
Please spend talking to Jesus in your closet and He will reveal you many things which He will use to bless many people thru your writings.
Remember “Jesus is The Way, The Truth and The Life”
Be blessed & encouraged. Keep on writing!..
Agape – PJ
Great description of NDPH. I’ve suffered for 22 years now, and can’t really remember what it’s like to NOT have a headache.
I’m intrigued by Prajeeth’s comment. Did Jesus give me this headache so I’d become religious? Or does he just not care that non-religious people are in pain?
Thanks Mark. Reading “22 years” is painful for me. I hope you find something that works to control and manage the pain. Please feel free to tell us more about your experience – and what keeps you going. I just passed the 5 year mark in March, and I think I have come to some strange kind of acceptance of my situation.
I don’t know that Prajeeth will return to answer you. I, for one, don’t believe that this is some sort of punishment. At least not most of the time, even though it feels like it. We suffer, regardless of faith.
My headaches started only 6 months ago, (happy easter weekend for me) so I understand that I’m hardly a foot in the door to the process of finding out what’s wrong, but already I’m past frustration and have settle dinto a pattern that revolves around my headaches. I don’t have a diagnosis yet. Actually, I havent gone to a doctor yet because on a student budget it leads to some tough expense choices, but because of my worrying mom I finally made an appointment. I’m only 18 years old, and the thought having this headache for the rest of my life is terrifying. I sincerely hope there is an answer out there for all of us.
Hi Lindsay,
I’m glad to hear that you are seeing a doc. It’s really important that you go through the tests just to be sure that there is not an underlying problem that could be causing the problem.
I hope that it isn’t NDPH, and that your pain is caused by something they can treat more effectively. Good luck and let us know what happens!
Amy
Lindsay,
I have a daughter your age, and one of my biggest fears is that she or her younger brother will inherit headaches from me, like I did from my mom.
What gives me hope is that every year, medical researchers are finding out more and more about headaches and how to treat them. When I first got these headaches, there was little or no talk of preventive meds. Now, there are a huge number of preventives that your doctor should explore with you. NDPH is particularly resistant to treatment, but some sufferers have had good luck with various meds. And I think the options for treating us are only going to improve over the years.
So, the good news is, even if you have NDPH, the odds of you suffering for many years are much lower than if you were diagnosed 20 years ago!
I have had a headache similar to what you described for the last 6 months, and the neurologist believes it is ndph, but I also have a lot of dizziness and lightheadedness that accompanies it. Is this something that any of you have also experienced. I am not convinced that this is what I have, and would like some feedback from some people who have been suffering form this condition. I wasn’t given a very good description of it form my dr. and haven’t been able to find a god source of information about it online.
My favorite part about having NDPH is being treated as a drug addict. Or being told that my headaches are rebound headaches.
I am a hard working successful exec. So when I first started having them, I went repeatedly to neurologists and had every test done and every migraine medication as well as the epileptic meds. I was hopeful at first but stayed on lexapro to keep me from jumping out a window. After a few months of daily all day headaches, I started to panic. I had to turn the lights off in my office because the flouresent lights intensified my headaches. The ringing in my ears was intolerable and I had to beg and plead with doctors to get ambien to sleep at night. They were so worried that I would become addicted. I finally convinced my primary that if I couldn’t sleep, I couldn’t work. I told them that I am also addicted to brushing my teeth, shaving, showering, etc.
The biggest problem with NDPH is that no one can imagine having that type of headache for such a prolonged period. So you must be a drug addict or making it up for attention.
Long story short: I have nothing wrong with me that is detectable. I have had All sorts of MRI, spinal taps, hearing tests, psychological tests. I have seen 5 neurologists, gone to headache clinics, chiropractors, tried remedies from everyone and their dog. I had these headaches for almost 2 years before a neurologist showed me mercy and prescribed percocet. Percocet is great in the short term but you still have the headache, your ears still ring but you feel better. The side effects are irritability, memory loss and increasing doses. And if you are not careful, you can act stupid. The other thing to take note is that most doctors have given up on you at this point. Go to another doctor.
Finally after 5 years, Dr Schulman diagnosed me with NDPH. I was so relieved to find out what I had but discouraged that there was no cure.
He changed my meds from lexapro to pamelor and effexor. He had me do a sleep study which revealed I had sleep apnea. Then he had me go to a psychiatrist which I was very, very skeptical due to my past experiences. He diagnosed me with ADD which I am not 100% convinced I have, but he did prescribe adderall xr.
So 6 years after that first day that I remember so well, I am now very functional. The headaches and ringing in my ears are still there but they don’t rule my life. I feel confident that I will be able to work and excel at work. I dont have
any big worries and don’t feel like hurling myself infront of bus.
Dude!! That sucks!! My neurologist has been extremely respectful. I haven’t had any luck finding a medication that helps, but he hasn’t insinuated that I am being dishonest, neglecting my health, or using drugs in any way.
The Jesus guy, the herbal people and the people who say I have rebound headaches are about as helpful as a lobotomy.
Every doc I went to concluded rebound headache with really nothing to base their finding. However, I had to prove to every single one by going off the meds resulting in unbearable suffering just so they could check it off their list. It genuinely makes me mad.
Hello Amy,
Thanks for the excellent description of the disease. I have had a headache now for two and a half years. It came on all of a sudden during the middle of my final college exams. somehow I managed to finish my exams and get a decent result. My GP told me that it was either stress or a sinus infection and got me an appointmnet with an ENT. after waiting almost a year I finally got to see an ENT who told me that it was my jaw that was causing the headache and recommended me to see a specialist in TMJ disorders. the TMJ specialist put me on everything from iboprofen to antidepressants (which made the headache worse). I have tried physiotherapy and it seemed to have relieved it some bit but after 6 months it stopped working. at the moment I just try to keep positive and just get on with my life.
I think trying to get on with your life is a good idea, but don’t stop looking for a cure. It may be out there. I hope it is out there. As time goes by, I go up and down with hope and despair. Some times I can get on with things, but I know I have been fooling myself into thinking that this is “life” as it could have been without the pain. I hope you can find some relief and keep pushing on. Life is waiting.
Hope this doesn’t disappoint any of you, but my headache arrived 37 years ago and I’m still counting the days since I can remember what it felt like not to have a headache. I haven’t had a smart enough doctor to even know what NDPH is! None of the vast array of meds prescribed to me for migraines, pain, or depression has ever worked. I won’t bother taking any more since there are always side effects and none of them actually removed the daily pain that is just a part of my everyday life. I have just learned to accept the pain and try to ignore it the best I can by staying busy enough not to think about it. Hope someone out there with NDPH has better luck than I’ve had. Terri
Hi Terri, it is so sad to hear your story. I couldn’t respond initially because, really, what can I say? Six years seems like a life time to me. 37 is unthinkable. I hope that somehow you find something to help you cope with the pain or alleviate it. You are a strong woman to have been able to get through this for so long. I can’t say that I would have hung in there that long. I wish you a pain free day and all the strength to carry on.
How can you get diagnosed with NDPH? Because I have had a headache for the past 6 years and the way it is discribed here sounds familiar.
Thanks,
Laura
Hi Laura,
The best way to get a diagnosis is to find a doc/ neurologist who specializes in NDPH or chronic headaches. If you check out the support group at MDJunction (see link in the side bar) there is a list of doctors who could help. If you can’t find the list, just ask in the forum and someone will answer with a suggestion. Unfortunately, having this diagnosis is not a great thing, but I know that having some sense of what to expect and what to call it can bring some peace of mind. Best of luck and let me know if you find any answers or treatments that help you.
Hi Amy
Well done on keeping such an interesting and compassionate site.
As someone recently diagnosed with NPDH, I thought I would make two comments.
1. Has anyone any views on the theories about headache advanced by Dr Eliot Shevel of South Africa. Dr Shevel concentrates on migraine but contends that headache pain in general is very often a result of problems with the extracranial arteries of the head and not the intracranial arteries or brain (as most neurologists believe). He argues that this fact has been ignored by neurologists, who have focused on preventive medication that is often of limited efficacy. He has pioneered a form of arterial surgery for headache sufferers at his clinics that is minimally invasive. His theories are controversial (and my own neurologist dismissed them). Nonetheless, he has been published in a number of eminent academic journals, including Brain, and has been the subject of considerable press interest recently following collaboration with Italian and American neurologists. A quick google search on his name will furnish all the necessary details.
2. Nerve decompression surgery, which is also somewhat controversial, does appear to have some positive results. Do any NPDH sufferers have comments on its value for people with our rather unusual headache disorder?
Thanks again for this site.
I hope all reading are having a good day.
Cal
Hi Cal,
Thanks for the lead on the South African doctor. I will definitely look him up.
I am writing because I had the Occipital Nerve Decompression Surgery 1.5 years ago. I was, of course, hoping for a cure. I did not get a cure, but I got about a 30-40% reduction in the pain intensity of my chronic headache. They are great doctors in Houston. I am happy to talk to anyone who wants to talk about the doctors, the process, my experience. I am very glad I did it. I had to pay 15,000 dollars out of pocket.
Amy G.
Hi Cal,
Thank you so much for leaving the information about Dr. Shevel here. I have been in contact with him by phone and email, and I certainly think, at this point in my research, that it might be a useful technique for me.
I did have the OND surgery 1.5 years ago. It gave me some relief…about 30-40% reduction in the intensity of my headache. Nothing has every touched the frequency. It is with me ALL the time.
I am now wondering if the OND surgery was moderately successful because the procedure disturbed the landscape of my extracranial arteries.
THe worsening of my headaches is always preceded by a powerful throbbing in my carotid artery on my left. I have always suspected some vasculature component to these headaches. They started almost 4 years ago.
amy g
I am glad you are encouraged by conversations with Dr Shevel. I too have been in email correspondence with him.
As you know his views are controversial. Further (as in my case), lack of any positive response to triptans or to IV DHE treatment (which I have had) makes it more difficult for him to determine that one’s headache is primarily vascular. In correspondence with me, he expressed surpirse that I had no relief from DHE and stated that this result made it more difficult to say that his surgery would be effective. A further point worth making is that he is really concerned with classic migraine; he does not seem to have published or commented on NPDH, which, as you know all too well is distingushed by the fact that it does not respond to treatment.
As I mentioned in my original post, my neurologist is very skeptical that some arterial ligation could cure something as seemingly complicated as migraine. It would be great if another doctor or neurologist could comment on Shevel’s theories and surgery. I do not find the testimonials on Dr Shevel’s website especially convincing.
I live in Europe and the cost of travel to South Africa and subsequent treatment is prohibitive. For such minor surgery, the fee is very high. Nonethless, Dr Shevel is generous in replying to patients that is not treating, something that is very commendable. I wonder also what he makes of botox and nerve decompression.
In any case, I will post again soon if I discover any more about the extracranial theory re headaches. I hope you are doing well.
Cal
Thank you for your encouragement, Amy. I am still looking for an answer and if I find it, I will be sure to let you know.
Hi Cal,
Thanks so much for your generous reply. I have talked to a few excellent neurologists about this procedure. I saw Dr. Rozen a few weeks ago, and he was very discouraging. He seemed to think that though this procedure might give some temporary relief, the relief would not be permanent, as the migraine would find new vascular pathways to express itself.
My biggest problem with Dr. Shevel’s claims is that no one else is commenting on them. He says he has had 85% success in 500 people, but no studies are written up. I sort of want to ignore “common sense” and just fly to S. Africa and give it a chance. Dr. Rozen, not disrespectfully, said, “desperate people will do desperate things”. He suggested there were still quite a few things for me to try before I decide I am that desperate. Also for me it is cost prohibitive. I live in the Boston area. If it were in NY and cost a few thousand dollars, I would just try! I have not ruled out the possibility of going to SA for this procedure, but just not going yet.
I hope you are having a good-ish day. Dr. Rozen put me on an NSAID called Salsalate at a very high dose. I was having great success…40% reduction in pain level, but had to decrease the dose due to increase in migraine with aura on top of the daily headache. I am now on a lower dose of salsalate, but still getting more relief than on other NSAIDs. I have started the Minocycline and Singulair protocol, but notice no change in the past two weeks.
amy
Hi Amy
Yes, I agree that it is strange that no one is commenting on Dr Shevel’s theories. His work is published in respected journals and he himself very kindly fields questions from people such as ourselves, but there is simply nothing else in the literature about his surgery. As all headache sufferers know, there are innumerable medics and others on the Internet claiming to have a cure of some sort for headache; it puzzles me that no other doctor in the world would offer this straightforward surgery if it has such great .success.
My own headache is largely located in the occipital region and has no migranous features. I have had no luck with elavil (other than bad luck, the elavil/amitriptaline gave me unilateral tinnitus, which is hellish) or depokate as preventers but am soon to try botox. My neurologist also wants me to take topamax. I am weary of these strong drugs and am resistant to starting another one.
I too have thought of just flying to South Africa but, in the absence of any commentary, it would be hard to justify. Other solutions that Dr Shevel suggests, including the use of a mouth guard/dental device, do not sound promising.
I hope you woke up today and your headache was gone!!
Cal
Cal,
I share all your thoughts about Dr. Shevel. If he is on to something why wouldn’t they be doing it in other places???? I suppose every idea that is controversial starts small somewhere, and perhaps will be the next big thing.
I am getting alot of relief from Salsalate at 2000mg a day. I was originally on 3000 mg a day which gave me TREMENDOUS relief, but I started getting auras on the high dose.
I had no luck with amitriptyline or topomax or beta blockers. I get botox 200 units every 3 months or so, and that definitely helps. I think I mentioned I had the OND surgery as well, which really helped alot…like 30-40% improvement.
I am waiting to see what the new cocktail of minocycline and singulair does.I have also explored transcranial magnetic stimulation (TMS) which I have on the back burner.
I am also considering an inpatient stay to do infusion therapy over the course of a week or so. Dr. Rozen recommends this before heading to S. Africa.
I hope your headache disappears too. Just back into the nowhere it came from.
All the Best,
Amy
Hi Amy
The very best of luck with your infusion treatment. I had a DHE infusion myself, but it did not help. However, strong vasoconstrictors have proved hugely beneficial to many people with headaches, so you have a good chance of success. I am soon to take topamax at a small dose. I am rather worried about the side-effects. How did you get on with it? It is also good that you are seeing Todd Rozen. By all (internet-based) accounts, he is the man to see for this cursed thing.
If you do bite the bullet and go to South Africa, it would be great if you could report back on your experience. Dr Shevel sounds so definite in his views, a feature which is attractive when neurologists are, understandably, so vague when discussing the cause of headache. Like you, part of me wants to believe that a simple arterial surgery could stop the pain. It does seem unlikely though; the very experience of head pain suggests complexity to me rather than simplicty.
Anyways, stay strong. You will get better.