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.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.
Hi Lilly, It has been 25 months now for me with this headache. I cry a lot. No meds work. I do believe my headache could be from anesthesia from a surgery. I read that 9% of people who have had surgery/anesthesia will suffer with a headache for 2 years or more. Ice on my head is the only brief relief I get. Neurologist now having me do a sleep study as, apparently, insomnia can cause headaches. Good luck with this monster! Irene
Hey everyone, can all who are willing and want tell me where in your head your headache is? Everywhere? Front, sides, temples? Also, is there a time of day it’s consistently worse? Morning, evening, hot weather, cold? I’m researching this NDPH and want to know if it’s caused by many different reasons and that’s info’s a start. Thanks.
Lilly,
I am on day 188 of what we now know as NDPH. I have tried too many medications to count and have done every test under the sun. I’m currently on month 4 with Emgality as well as multiple vitamins and prescriptions. My pain is usually stemming from the center back of my head and wraps around (both sides ) my head. I have found that my mornings tend to be better for me than the rest of the day. I have 3 small children and I am only kid free 3 hours a day (in the morning) so I wonder if that is why. I’ve lived with this in the spring, summer and now heading into fall weather (but not really a lot of change here in Southern Ohio to get an accurate reading). Thank you for researching this and I wish you well
Has anyone had any improvement with the newer gene pepetide monthly injections. I don’t have migraine features but my neurologist has just put me on emagality I have been on many other meds.
Thank you
Paul
Hi Paul, I have had headaches for 5 years now. The most recent is a headache for 17 months EVERY SINGLE DAY ALL DAY! I have had nerve blocks, blood/glue patches in my spine, along with many meds. Emgality and Ubrelvy do nothing. I have been treating at Jefferson Headache Center in Philadelphia. This Tuesday I see a new doctor that deals with cervicogenic headache (neck). Now they think it’s my neck since I have severe arthritis and herniated disc. I certainly can have sympathy for you. Tell me more about your headache.
Irene
Irene,
I have just starter with emgality and ubrelvy (3 months ago)(and while they are definitely better than topamax lol- I still live with a lot of pain). I’m intrigued to learn more about the path you have taken with “ nerve blocks, blood/glue patches in my spine, along with many meds”. I too have pretty bad arthritis in my neck and have been working with a chiropractor. I’d love to learn more about what you have been doingz
Hi Christina, I am so sorry that you are suffering. I will be going on the 12th for an infusion of a new medication Viapti. Emgality and Umbelvy did not help me. Nothing has helped me 26 months now. I will be doing a sleep study soon too. Apparently, sleep affects migraines. I have had 4 blood patches in my spine, 78 Botox shots, 6 nerve blocks in my neck and a 5-day stay in a hospital running a cocktail of meds. Also, I have a medicine cabinet full of nothing that works, include Ketamine nasal spray. I read that anesthesia can cause a headache for 2 years or more and I had surgery when this started for the second time. Nothing budges the pain. Have you had any of these procedures? Irene
I have new daily Persistant headache for over ten years now how ever the past year they have gotten substantially worse. Does anyone know of any progress or trialed drugs for this horrible condition?.
Hello I have being dealing with new daily persistent headaches now since January this year, and I have tried lots of different medication but nothing has worked, how r u feeling now ?!
Hi Lee, please do some research on a hole in her spine. She may need a blood patch which I had at Jefferson Hospital, Philadelphia.
Unfortunately, it’s now 4 years later and headache is back. I go Wednesday back to Jefferson.
Haven’t heard from anyone for a long time.
Thanks for your great story. I am so happy for your son and your family. You are truly blessed.
Irene
My son “had” npdh for 9 months. He was treated in jan 2017 in patient at Jefferson hostial in philadelphia he was there 8 days and left headache free. He was given several meds and closely monitored. Meds were lidocaine. Dhe hadol toradon magnesium
Hi John,
I’m glad to hear your son is headache free. How is he today? My son has had NDPH for about 8 pos now. I came on following a bout with Mono. The docs say they aren’t ready to give him any aggressive treatments, like inpatient meds yet. His headaches are usually around a 2, but gets worse at times.
Congratulations Steve! You have just made my day special. My prayers have been answered. Continue to have hope and faith. You are on the right track now. I need your prayers now…….since my headaches subsided, I lost vision in my left eye. There is a bubble blocking my vision. Seeing retina specialist getting shots in my eye. Seeing cross-eyed is my biggest life challenge so far. Don’t now if it had anything to do with headaches and/or blood path but it sucks big time.
I continue to pray for all suffers and the doctors who treat you all.
HAPPY NEW YEAR! It has to get better.
Irene
Hello to all out there, and Irene especially. Around six month mark having NDPH, I finally got some relief. What was a literally intolerable 6 month headache has now subsided to a 2 on a scale of 10–I think it has to do with consistent taking of Gabapentin and Amitryptaline. I also had some vision issues, and I got a prism in my glasses that has helped. I suspect that the medications took months to kick in. If I miss doses, I feel the pain lurking. All I can say is that two months ago, I had no hope for anything but neverending pain. I don’t know what tomorrow brings, but I am much better. Thanks to all for your prayers, and I’m praying for all sufferers.
Kimberley,
Don’t give up…..I will pray for you. Something has to work.
Hi Despina,
I am so sorry your daughter is going through this. For myself, the only times I have had trouble with my vision seems to be side effects of the many medications I have tried. Of course the exhaustion that seems to come along with everything doesn’t help either. I hope the doctors can find something that helps all of her symptoms. It is hard enough at my age, but I can’t imagine how devastating this must be for her trying to get through high school.
Irene, I am so happy to hear that the headache has finally gone for you! I hope now they will find a way to help you with your eye.
For myself, the second set of Botox injections did nothing but cause some swelling, so I won’t be going for the 3rd. Back to hoping the doctors have a brilliant idea that will actually work.
I wish you all happiness and health,
Kimberley
Hi Despina,
I am so sorry for your daughter’s problems. I had DPH for 17 months. I woke up the day after Thanksgiving with a bubble on my left eye retina. The headache was gone but I am getting needles in my eye every month. I think the blood path cured the headache. Dealing with the vision problem is devastating and I can understand your daughter’s pain. I will pray for her healing. Never give up hope.
Irene
Thanks Irene & Kimberley. I will never give up on searching for answers or treatment.While my daughter was in hospital they tried so many drugs on her to the point i said thats enough .The drugs were making her worse especially the nausea.at present all we can work on is her energy levels and keep her positive .
I think its been harder for her to deal with friends not visiting and her seeing their posts of going to the beach and having fun and she is stuck at home.I have said to Kiana (my daughter) we have to look at your life differently now and how to do things with a different approach and as hard as it is to imagine some positive will come out of it.
hi all, has anyone had constant blurred vision with their headache.My daughter who is 17 got a sharp pain in her head her vision went black for a second then was blurry ever since She has had CT scan MRI blood tests lumbar puncture then blood patch due to the severe headache and nausea where she had to spend a week in hospital from it every test showed nothing which is good but still no answers she has seen 2 neuro ophthalmologists ,neurologists .Her physician says it may be NDPH I have been reading up a lot on it but haven’t come across anyone talking about the 24/7 blurry vision.She has to be exempt from her yr 11 exams and are so worried she won’t be able to do her final year at high school which she is devasted. She is also sensitive to light and sound noises and so so tired..Since her lumbar puncture and blood patch her back is aching she is worse now than before.Its been 2 months now and reading all your stories that isn’t a long time compared to many of you but long enough for her ,the scary part is i know this can drag on indefinitely .I hope for all of you and my daughter some sort of cure can be found
thanks for reading this and i hope i can connect with someone who also has blurry vision
Hi Steve, how are you? I had the blood patch and waiting for relief.
Irene
No relief. Terrible pain.
I am so sorry, Steve. What are you doing as far as treatment? I will keep praying that you will find not only a way to treat this, but some relief.
Hi All my fellow sufferers,
Has anyone had any relief at all? I am having the blood patch done. Has anyone tried that yet?
Irene
Hello everyone. I had my first Botox treatment about 3 weeks ago. There was no change to my pain, but I did experience a week of swollen eyelids. Thank goodness it gradually went back down.
I will be getting the second round of treatment in November. I must say I’m not looking forward to it. It was a surprise to find out that the cost to do the injections-$150 on top of the price of the Botox itself – isn’t covered by any type of insurance, at least here in Ontario, Canada. Since my family has been living on my husband’s income only for the last couple of years, this wasn’t happy news. But if it helps the pain and I can go back to work and some type of normal life again, it will be worth it.
Best wishes to all of you!
Thanks, you are kind to offer such helpful advice and encouragement.
Have you gotten any relief? I was on ice and vibrator off and on today. It’s the only way I can get through the day. May I ask how old you are? Have you had any really stressful events in your life in the last 2 years?
Late 50s. Haven’t used ice/vibrator yet. Spending all my time trying to find doctors. Biggest problem is insomnia at the moment. Nothing particularly stressful. Some nerve issues due to elbow injury a year ago.
How are you, Steve?
Irene
Terrible,but thanks for asking. This is ruff. How are you.
Sorry to hear that and you know I understand. Today is 15 months for me. I had foot reflexology (I’ll try anything at this point) and I was in bed for three day with a worse headache/nausea and dizzy. That was a detox I was told. I just started on a muscle relaxant on my own. Having another massage of my head and neck on Tuesday. I’m running out of solutions. I go back to Jefferson in Philadelphia in a few weeks. They want to look more closely at the results of my spinal tap. How are you treating and with whom? I continue to pray for you and please do the same for me. There has to be an answer for all of us. Remember, Motrin and aspirin, etc. only 2x a week so as not to get a rebound headache.
Irene
You are very kind to write with such care. Thank you, Irene.
Steve…..one more thing. If you can get a vibrator, use it on your head. I have a large square one I was using on my back. It loosens up the tension in your head and neck and it really works for a bit anyway so you can do a few things.
My brother believes that we have these headaches from all the vaccines we had as kids. He had Lymes Disease and did a lot of research on how the government released these ticks from Plum Island. Anyway, my neurologist says I have DPH/tension headaches. So, it would make sense to see a cranial sacral masseuse or chiropractor and have them work on your head. It is worth a shot. You have to keeping trying everything. I’m thinking medical marijuana next when my friend gets me some from Colorado. Put ice packs on your head/neck, then go do some stuff, then go back to the ice. You have to try to manage your pain until we can figure out what will take it away. You must keep walking and exercising. Do the ice, then go walk a bit. Take powered magnesium a couple times a day and drink caffeinated coffee in the morning. Also, bosweilla (frankincense) is good for pain and turmeric/curcumin capsules. There ya go, lots of homework and hope for you.
I read Mr. Appleby’s message a few days ago. I don’t know what to make of it. I could believe anything now.
Above on August 3, 2014, Steve Appleby wrote to us. Please read it and let me know your thoughts.
Steve, I recommend seeing a headache specialist for treatment. The have more comprehensive and specialized knowledge than general neurologists. Christina Peterson is an excellent headache specialist in Clackamas: http://www.migrainesurvival.com/the-oregon-headache-clinic. She’s a neurologist who has been treating migraine and headache disorders for 25 years.
I know how frustrating and scary it is to be new to having a headache disorder, but there is a lot of hope for finding effective treatment and learning how to cope along the way. Please hang in there.
Take care,
Kerrie
Neurologist calls it New Daily Persistent Headache. Went to a chiropractor today, and now I feel like my neck is broken too! Doctors won’t prescribe pain meds. I’m in Portland, Oregon. I’m laid up in bed. Can’t work. Desperate.
It sounds like you have migraine. Yes? If that is the case, it is easier to treat than what I have – Daisy Persistent Headache. Where do you live?
Thank you for your prayers, Irene. I don’t know how I can go on even another day. But I can’t kill myself. I will pray for you too, but it is difficult to even think.
Hi Steve, 2 months……..I’m up to 14 months, 2 weeks, daily persistent headache every freakin day/all day. Ironic that you should write today. I just came back from Jefferson Hospital in Philadelphia. Got 20 nerve blocks in my head and some more pain meds. I’m home now 1 hour and I already feel lousy. Next they are talking about doing a blood patch even though my spinal tap said there were no leaks in my spine that would cause a headache. Hopeless? Been there but you plug on. You have no choice. I have 20 people praying for me. And I am praying for you!
Irene
Hello everyone. Two months now, unremitting headache. Despondent. Hopeless.
Yes Nicole, you are having rebound headaches. You must treat this. I am now in my 13th month of unrelenting misery. I am treating at the best hospital in the country, Jefferson in Philadelphia. They just put me on Cymbalta. Told me it would take a month to kick in if it does. Nothing else works. I am seeing a chiropractor also for my neck and she thinks she can help relieve some pain. Drink caffeine, use ice packs and most of all………..don’t give up hope. I will pray for you.
Irene
I’ve had this for so many years I can’t even remember a day I wasn’t taking some kind of pain reliever. Most days I function pretty well on 2 tablets of Excedrin but it doesn’t last long and soon after the pain returns. I’ve given up hope with all doctors and their incompetence so here I am trying to see what might work for other people.. doesn’t seem very hopeful but I’ll keep looking regardless. The problem I face now is with the medication, I’ve had stomach ulcers from the aspirin, and one of the pain relievers (not sure which) is causing low platelets (excessive bruising) and anemia. And I think it’s the Advil that causes horrible muscle weakness. Now I’m not sure which is worse, the headache or the meds. Overall it’s really depressing.. I have a wonderful life and yet I still find myself in tears over this which just makes me feel more depressed for being such a baby. Anyway.. I’m hope you all find relief! I only wish this on my worse enemies 🙂
Nicole, have you seen a doctor for your headaches and been diagnosed with NDPH? The headache pattern you describe indicates that the painkillers could actually be making your headaches worse. It’s a phenomenon called rebound headache or medication overuse headache. Since you’re having other issues from the medications, it might be the transitioning off the meds (with the help of a doctor) could solve multiple problems at once, including the head pain itself.
Take care,
Kerrie
Has anyone tried medical marijuana?
Hi fellow sufferers, where are all these headaches coming from? Now the new Daily Persistent Headaches. No one ever talks about them except you guys. It is now 1 year and 2 weeks. Have you all been checked via MRI with contrast for brain leaking into the spinal cord where there is a hole. They patch it up with your blood and you have instant relief. I am scheduling an MRI for that next week. My neurologist at Jefferson Hospital (the best headache center in the country) says I either have the leak or daily persistent headache. I will know when I go back on the 27th. After treating with 3 other neurologists, I am finally told that I do not have migraine. I waited my whole life to retire and had all kinds of plans. I retired and 5 months later……BAMMMM!
Kimberly, Paula and Daniel, I will pray for each of you every night until you tell me your are well.
Hi all, 32 year old male in Leicester, uk.
I started with a continuous headache in 2005. I saw a neurologist who said was a chronic daily headache. I basically was put on tramadol by GP and told they would go away. I remember after about 11 months that they did disappear. Unfortunately they returned again in 2007 and lasted again for about 11 months, possibly a year but again disappeared.
It is with a heavy heart that I have to say they returned once again in the first week of June this year. I really thought I had assigned my headaches to the history books. To say I am devastated is an understatement.
My GP has put me on Fluoxetine as I am an absolute nervous wreck, shaking, stuttering and generally just in absolute fear. The pain is continuous, more noticeable at different points. I have not been diagnosed with NPDH and it does seem from history that mine do disappear but living every second in pain is soul destroying.
My partner tells me to carry on and stay positive but I really can’t. I can’t face work at the minute, not only dealing with the pain but the fact that I burst into tears most of the time. I will go back to the GP on Monday and ask him for a referral to a neurologist.
It’s heart breaking to think that there are people out there who have never had the relief that I have had, I call 9 years headache free a gift from God, I honestly question how and if I can live with these.
My life was so perfect, good job, beautriful home, the best partner and a wonderful large family which I feel any enjoymemt has been snatched away from me.
Are there any other headache sufferes on here from the United Kingdom? If so how have you found NHS Neurologists and the support and empathy given?
You’re all in my prayers fellow headers.
Dan.
Hi Daniel
We have just found this site, are you cured? we are in the UK, do contact us
Jane and family
My 16 year old daughter awoke with a horrible migraine in the middle of the night. It lasted 96 days. We went to five different neurologists, numerous other doctors, acupuncture, Botox, PT, triptan drugs, muscle relaxers, antidepressants, Topamax (the devil’sdrug), other options that I can’t even think of… None worked. Some made it worse. Finally our final neuro suggested she might have increased intracranial pressure headaches. We had already done MRIs, CTs, ophthalmologist exams. All were normal. He put her on Diamox – a diuretic/water pill that eliminates excessive water from body and suppresses the production of CSF in brain. On day 4, headache was GONE! We stayed on it a few months, but it was starting to give bladder pain. Got off and headaches returned. Hoping to find another treatment option that will work.
One year and 4 days ago I developed daily persistent headache and have not had 1 single I developed a low grade headache 1 year ago and have not had one single day of relief since. I have had MRIs of brain, back, MRAs of brain, BOTOX 2x, spinal tap, anti-seizure meds, anti-depressants. All tests are normal. I just started treating at Jefferson Hospital Neurosciences Headache Department in Philadelphia which is supposed to be the best in the country…….time will tell. I am scared to death that this will be my new life. How do people live like this? I am so unhappy and never have fun anymore. Anyone feel the same and what are you doing to try to overcome what doctors can’t.
Hi Irene,
I feel exactly the same way. I am about to hit the 3 year mark in a few days, and I haven’t had a single pain free day in all of that time. It’s impossible to plan anything. I missed my step-daughter’s grade 8 graduation ceremony last week.(It was a huge thing for her, but she understood) I’ve missed parties, dinners, can’t even consider going to see a movie, etc.
I have been told by one of the best headache doctors in Canada that even if I try all of the meds he can think of, see all the specialists and afford to pay them, and do every single one of the treatments and therapies possible…..there is less than a fifty percent chance that I will ever be pain free again. But that still leaves some room for hope, at least on the better days when I can feel hopeful. I haven’t given up yet. I even got a daith piercing in my left ear (most of the pain is on the left side of my head), which is a painful spot to have pierced, but a lot of people swear it has stopped their headaches. Didn’t work for me.
I don’t know how I would get through all of this without my hubby. I think the best thing you can do is have people in your corner. Smile and laugh whenever you can, and hopefully that will be often.
Wishing you well…
Kimberley
How are you feeling Kimberley?
Nothing has changed on the current meds, except they seem to put me off balance. I’ve got tons of bruises to go with the constant headache now. But in 2 days I see my newest new doctor for the first time. Maybe she’ll be able to find something that helps. Fingers crossed.
Good luck Kimberley. I’ll be praying for you. My brother says this is coming from all the vaccines we had as kids. Who knows. I just know I am miserable. I’m reading a book, “Where is God When It Hurts” to put this into perspective – if there is one. Off to chiropractor so she can work on my head, then a massage to work on my head. Up to $23,000 now and I still have a headache.
Had an “implosive” (felt like I broke blood vessels in the head) sneeze in September 2013 and have had a headache since. My pain is mostly concentrated around the left eye particularly when the pain level is 5+. In my case, I also have aspects of Hemicrania Continua because occasionally the focus of the pain shifts to the right side of the head. Pain level stays below 6 in that case. Initially I was prescribed Indomethacin (with oxycodone, hydrocodone as needed when pain escalated). That seemed to help cope but did not help much with the piercing pain in the eye. Wife and I had booked a comprehensive trip to Europe for 17 days and the money seemed in jeopardy if I didn’t cope better. I happened to have 1% prednisolone acetate that I had been prescribed for uveitis. I decided to try some of that on the eyes. At about the same time a naturopathic MD suggested I used CBD tinctures. The combination of the 2 somehow held my pain at 3 or less and I was able to enjoy a European vacation. I remembered that a few weeks before I had had a sciatica problem and I had been prescribed a massive dose of Prednisone and my headache had gone away for 3 days! Conclusion is that in my case Prednisone, prednisolone actete, Medrol etc that have prednisolone suppress my headaches. None of my doctors want to prescribe me Prednisone because of side effects. I was taken off Indomethacin because of possible side efects. I tried Neurontin (gabapentin). It kept pain at level 2 and put me in major zombie mode. I once fell asleep with a fork halfway to my mouth! Quit the 300 mg offering and did not try a lower dose. Topamax did nothing for me. Now taking 80 mg Propranolol a day to keep at 4 and below with occasional hike to 8. That is until I decided to try a chiropractor. Saw a chiropractor at 2 pm with pain level 3. He told me I had thin disks in C34, C45, C67 and cracked my neck a couple of times. By 7 pm my pain level was 8. Woke up next morning to find out I had a severe case of double vision. Pain in left eye was unbearable. I had woken up with somewaht blurred vision which cleared up in 24 hours so I thought I’d wait this out. Probably a huge mistake. Day 4 with double vision. See ophthalmologist tomorrow for CTScan etc. Pain level went to 9 after midnight and I have had to take some oxycodone otherwise typically take abot 1200 mg Ibuprofen a day,
In July 2013 I woke with a headache that has been my constant companion ever since. After the first couple of weeks, I was seeing my eye doctor and dentist to see if they could find what was causing the constant pain.
I started missing work on the worst days, and trying to survive my job on the better days. My computer monitor was changed, the lighting near my desk lowered, and I even saw an allergist, but nothing changed.
I have seen more doctors than I can count, had xrays, ct scans, MRI, EEG and blood tests, all with negative results. My pain is constant but the severity changes from day to day and hour to hour. I can’t predict when the bad days will happen or how bad the bad days will get. Some days mean being curled up in a dark quiet room in agony, while other days I can do some shopping and cleaning and feel almost human.
My supervisor and I had a long talk in September 2013, and I was advised “off the record” that I may need to take some time off to get better so my job would not suffer.
I received some short term disability, but was denied long term disability when they pain continued, and am currently working with a lawyer who only gets paid if I do.
My darling husband has been the most supportive loving person in the world, but the stress of trying to make ends meet and support the family with only one income has been terrible.
It was only because of my lawyer that I was able to see a specialist who deals with headaches, and was diagnosed finally as having NDPH.
Over the last few years I have tried all the drugs and experienced some side effects but no relief. From the information I was given by the specialist, I am being sent to yet another specialist, and may need to be trained to live with the pain.
I too was diagnosed with NDPH this past year. I am 22 years old. I have always had headaches pretty frequently but this year something changed around summer and I can’t actually remember what day it started but all of a sudden I have been living with a constant headache. MRI and blood work came out clean. Neurologist prescribed topomax. I’m currently on 50mg and it worked for the first few weeks buts now my head pains are returning and so I’m wanting to increase my dose. Basically though my head pains have always been in the 4-9 range and twice I have had them wake me up with extreme pain in middle of the night. Those are the worst though. I’ve also noticed that even though I have a constant headache that I would describe as pressure or band like, I will also experience on top of that random bursts of quick localized head pains that come and go on top of my current headache that tend to be sharper and in bursts or waves that leave in seconds or minutes after they happen. I just really hope that one day I will wake up and they will be gone. My headaches will be no more.
I’m a newbie to NPDH, just being diagnosed today I am only on day 18 of my headache, so have not experienced the continual pain like many here. On the past few weeks, doctors have tried torodol, imitrex, percocet, some sort of iv cocktail that included benadryl, and I added a b complex vitamin. The percocet provided relief, but also created ac rebound headache if I used it more than a day or two. Now the doctor (new doctor) has prescribed a muscle relaxer (zanaflex?) and one other (I can’t remember the name). We’ll see how it goes…
Stumbled on this blog and noticed there was almost no helpful tips posted. So I thought I would post some. Headache first started 3/15. Two episodes of vomiting with severe headache. One episode had 30 times vomiting in 24 hours, severe vertigo (couldn’t stand up), and a trip to the ER. The vertigo and nausea slowly went away over 2 months. I had 19 prescriptions over 2 months for pain relief. Nothing worked and the headache continued 24 hours a day. The headache is in both temples and sometimes at the base of the skull. I finally stopped all prescriptions and felt better. Diagnosed with NDPH 9/25/15 after numerous tests and scans. I keep a log of everything I take, the time taken and the pain level. It helps to see what is working. Slowly improving by doing the following:
– 650 mg timed release (8 hour) generic acetaminophen – at times I take a second one after an hour if one isn’t enough. Max 4 a day.
– Norco 10/325 – Once or twice a week – if I had 2 acetaminophen at a time and the pain was really bad, I would take 1/2 Norco. I would add another 1/2 Norco if the pain was still too much. This is the only narcotic I can tolerate because it does not make me nauseous. Be careful, this stuff is highly addictive and will cause severe constipation.
– Butterbur – 75 mg up to 3 times a day. I have been taking this for 2 weeks and it really helps. It seems to help with the pressure in my temples. At local health food store it was $50 for 60 caps. Ebay – $ 6.50 for 60 caps and free shipping. I have cut acetaminophen to 0 to 1 a day and Norco to 0 by taking Butterbur. I was told it could take 4 months before it starts working so I am hopeful it will continue to get better.
-suboccipital release – my MD suggested this. I go to my chiropractor and this does seem to help for a few days. It bought a static device online, but it didn’t work and may have made things worse. Google it to get more info.
– Ice – I put ice in a quart zip lock baggie and put it on the back of my neck for 30 to 60 minutes at least once a day. It seems to help with the pressure in my temples.
– Walking – It’s hard to do when I’m in a lot of pain, but I try to walk 15 to 30 minutes a day. It seems to help sometimes.
– Rest – When the headache is really bad, I do nothing. I find if I do to much, the next day the headache may be worse.
Mike
Hi
I’ve had the results back from my intra cranial pressure monitoring study. Apparently I have low CSF pressure. I did ask the consultant how low is that compared to normal, to be met with the witty retort “we are not entirely sure what normal pressure is, mainly because normal people don’t let us drill into their skulls to monitor the pressure levels”.
So, it looks like the cause of my 3 year long sore head is low pressure. Now they are going to contact me again (sometime – probably months off) to set a date for trying to determine if there is a leak somewhere, and if a ‘blood patch’ may help the situation. So there is some hope here, but the consultant did point out the success rate here is pretty low. Well, some success rate is better than no hope at all.
If anyone does have a headache that really will not go away, seem to get better lying down and worse when standing, I can recomment the National Neurology hospital. Mr. Laurence Watkins is the consultant. A simple referal from your GP to him (and his team) can get the ball rolling. I persevered with a local neurologist for 2 years, who realistically did all he could but didn’t have the equipment to perform more sophisticated or complex diagnostic tests.
http://www.uclh.nhs.uk/OurServices/Consultants/Pages/MrLaurenceWatkins.aspx
Best of luck
Kev
Hi,
not commented since August 2014. I had laser iridomy on my eyes to help stave off glaucoma, had ‘narrow angles’ in the eyes, which weren’t draining properly. I was told this might have been the cause of the headaches. But the headaches didn’t change after the procedure.
Went into the National Neurology Hospital in London (part of Great Ormand street hospital) to have Intra cranial pressure monitoring done. It was pretty painless, albeit a bit weird having a bolt in my skull and a little wire in the brain hooked up to a computer. It however wasn’t quite so painless when they removed the bolt. But, just one stitch and I was off on the train home. I go back to get the results in 3 weeks time, but I am expecting it to be normal. Everything I have tried, or all test undertaken always come back as normal. So I am not getting my hopes up really. If it does come back normal then this is about the last test to see if it is something physical that can be diagnosed. So not really sure what or where to seek answers.
That is the conundrum – is there an answer to this anywhere, or is it a continual search. I don’t want to give up searching, or accept it simply is what it is, as hope keeps me positive.
Merry Christmas to everyone
Kev
Kev, I’m sorry the procedure didn’t provide relief. There are definitive tests for very few headache disorders. It’s incredibly frustrating, but points to the idea that they’re a result of neurological dysfunction of some sort. There are still tons of potential treatments, even in the absence of a test to confirm a diagnosis. That can mean frustrating trial and error periods with different medications, but it also means there’s always something new to try.
I’ve found that I function best when I can both accept what’s happening to me in the moment (like disabiling chronic migraine) and also remember that there are always new treatments to try and that my future isn’t destined to be just like my present. There’s always hope, even if you have to look a little harder to find it sometimes.
Take care,
Kerrie
Dear Kev
We recently have found the site, and note you are in the UK? my daughter has NDPH amongst now other things that have developed – do get in touch and let us know where you are as some connections we have might be helpful
with kindest wishes
Jane
Thanks Kerrie for the link to the website. Have had a quick look on here and it seems very informative (without the sterile nature some med information sites have). Venlaflaxine comes in for bashing, saying it is a nightmare for withdrawl (got that to look forwards to).
I have had the shakes since before I took the venlaflaxine, but noticed it the worst whilst I stopped taking all meds for about 3 weeks (just before I started the Venlafalxine). Constant head pain is nasty, but combined with internal shaking (feels like fear) and real bad lack of sleep is a nasty combination. Still waiting for an appointment for Intra Cranial Pressure monitoring.
Oddly, I went to the Optician a while back who referred me to the hospital. Went to day and they said that I had some sort of problem, where fluid cannot drain from the eye properly. I have been put on a list for Laser treatment (laser iridotomy) to correct this. The doctor said that this can be the cause of migraines in some people
http://www.treerichardson.com/laser-treatment-of-narrow-angle-periphereal-iridotomy/
This seems like a real long shot, as I can’t see how pressure build up in the eye would cause the pain I have, but having looked at a few forums there were people who would get headaches everyday, and laser iridotomy did help.
I guess I feel different as no medication takes away my pain. I’ll let you know how I get on. Thanks
Kev
Kevin, it’s interesting to have a lead and I hope it leads to some relief. Thanks for the updates. My fingers are crossed that you find relief soon.
Take care,
Kerrie
I say this with the greatest sincerity. All of you who are suffering with this insidious blight, have probably not considered the fact that it has been instigated by the parallel governments who rule over your governments. The criminals in the upper echelons of power created this ailment in laboratories in the same way as many of the incurable diseases that have spontaneously come about in the last few dacades and that we are expected to believe doctors in the 21st century cannot heal – rubbish. This is nothing more than a subtle biochemical attack on humans for eugenics purposes. When you receive this problem, you will all go down the same path that the obscurantists who control the medical industry have provided for you ie harmful medicines which will indubitably make your situation worse. ‘They’ want you to be ill for the rest of your life and a constant headache is just one way that they can ensure that you require a constant supply of drugs and are too ill to challenge your utterly corrupt governments. If you believe that the scientific establishment can’t cure a headache, then you probably believe that they can’t cure cancer either – but I assure you that they know EXACTLY how to cure everything out there.
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
Kevin, I’m sorry you have such a wait ahead of you. How frustrating that must be!
I’m unfamiliar with a sensation of internal shaking on venlafaxine. You might find some information on http://www.crazymeds.us, which looks in depth at side effects from antidepressants.
Hang in there. I hope you find some answers soon.
Kerrie
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
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
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.
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.
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
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~
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.
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?
I am very very sorry about this. I’ve been experiencing the same thing for over 9 months straight now. I cry as well because the pain hurts so bad and doesn’t go away. I know this was many years ago for you, but I am 17 right now, close to the age you got this headache at. Please tell me there was something that needed up helping you. I’ll do anything to make this go away.
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?
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?
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.
I am very sorry to hear about this. This is actually happening to me too. I have had a constant headache for over 9 months straight now. It’s been so hard. Was there anything that cured her? Please please let me know.
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
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
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.
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
Hi. I’m very sorry to hear this. I have had ndph for 9 months straight now and was wondering if you found a cure for yours. I will try anything to make this headache go away. I cry for hours most days because of how much this hurts. I know it will go away but I need it to go away sooner. Please let me know what helped you.
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.
Hi. I’m very sorry to hear this. I have had ndph for 9 months straight now and was wondering if you found a cure for yours. I will try anything to make this headache go away. I cry for hours most days because of how much this hurts. I know it will go away but I need it to go away sooner. Please let me know what helped you.
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.
Hi. I’m very sorry to hear this. I have had ndph for 9 months straight now and was wondering if you found a cure for yours. I will try anything to make this headache go away. I cry for hours most days because of how much this hurts. I know it will go away but I need it to go away sooner. Please let me know what helped you.
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 🙂
Hi. I’m very sorry to hear this. I have had ndph for 9 months straight now and was wondering if you found a cure for yours. I will try anything to make this headache go away. I cry for hours most days because of how much this hurts. I know it will go away but I need it to go away sooner. Please let me know what helped you.
I would suggest joining New Daily Persisting Headache (NDPH) support for patients. It is a facebook group, alot of active members – a lot of posts, research, ideas and support – some people get better and share what they found helpful. Hope this helps
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.
Hi. I’m very sorry to hear this. I have had ndph for 9 months straight now and was wondering if you found a cure for yours. I will try anything to make this headache go away. I cry for hours most days because of how much this hurts. I know it will go away but I need it to go away sooner. Please let me know what helped you.
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…
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!
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
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!
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
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.
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.
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.
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?
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
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?
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.
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.
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!
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!!
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.
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.
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?
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.
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.
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.
My 11 year old has been diagnosed with NDPH. Is your son still headache free? Does he still see a craniosacral therapist?
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.
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.
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!
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.
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.
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.
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
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
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.
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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
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?
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
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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
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.
Hello, I came across this blog as my daughter who is 14 has been suffering for 16 months. In reading about your daughter I would love to hear how she is doing now since your comment was from 2008. I hope she is pain free but if you have any advice on what she tried that worked. thx
Hi Lee, We have only just found this site also, when looking through past posts last week I found the below entry: by ‘floating frog’. ( see below* think it was 2013) I was so curious I contacted the office and had a very good reply, the doctor Roberto is away travelling at the moment, back end of January, I then asked what are the equipments and the reply ‘Dr. Tamayo conducts a study called computed brain mapping with which he reaches a diagnosis and evaluates whether our therapies can be applied (hyperbaric chamber among others).
There are many therapies, Dr applies them depending on the result of the mapping, for example ozone therapy, laser therapy, hydromassage, alpha band camera, pain therapies, cell massage, etc.’
We are going to take the information to our neurologist in the UK and see what equipment is here, Kelly does say to contact her, if like any more information. There was also one girl that was cured after osteopathic treatment in US, also that is on this site too. Here is a link about the cervical spine and ME – but the info will apply for NDPH too: https://www.healthrising.org/blog/2019/02/27/brainstem-compression-chronic-fatigue-syndrome-me-cfs-fibromyalgia-pots-craniocervical-instability/
Hope this is helpful for you, from my recent research 2019 I feel virus or cervical spine are really coming to the fore front as underneath the NDPH, or certainly to be ruled out.
Here is the entry from floating Frog :
***New Member | 8 years on site | 32 posts Hi,
I’ve been away from here for a while but I thought it was necessary to come back and share my experience.
I WAS CURED.
I had NDPH for over 8 months and did many treatments including Topamax, Botox, Gabapentin, Indometacin and other medications. I did acupuncture, body tuning and other alternative treatments.
This will sound crazy but only us, who suffer from constant pain, know how far we can go to find a cure for what ails us.
I found a Cuban doctor living in Guayaquil Ecuador who cured me. If you look for him online you will find very little of him, he flies bellow the radar.
What he does is a EEG like scanning of the brain with many more pods and cables which he himself has developed. He reads your brain like he was a gypsy reading your hand, telling you about your personality and your traits.
His treatments are usually one month long and involve a hyperbaric chamber and other Russian made machines which involve magnetic fields, regulating alpha waves and regulating electricity, among others.
After my first one month long treatment I no longer had constant pain, I was very weak and could only read for an hour at a time. I was off my meds and doing better. A few months later I returned for my second month of treatment and I left without a headache. I do have migraines from time to time (mostly hormonal or barometric) but the NDPH is gone for good. I SWEAR.
If you want his contact information don’t hesitate to write me
hyperbaric therapy roberto Tamayo
https://makingwavesinecuador.wordpress.com/about/
you can contact his office via email tamayoneuroo2@hotmail.com you can mention me, Kelly Aronowitz, in your email.
Dr. Roberto Tamayo
Telephone: (593-4) 228 8382
(Locally: 04-2288382)
Cell: (593-4) 997 053 811
(Locally: 09-97053811)
Email: tamayoneuroo2@hotmail.com
Member | 9 years on site | 222 posts
If the doctor was talking of Russian machines, maybe he was referring to machines like the Alpha Stim, Fisher-Wallace Electrical Stimulation Device, or the BT-7 device. BT stands for Brain Tuner.
Dr Robert Beck, who passed away in 2002, referred to such Russian devices in some of his books. He said that the Russians had made a great deal of progress in helping addicts get over their addictions with these machines.
He further stated that these machines were also used for anxiety and pain.
He was a highly specialized physcist, who in his later years became interested in this type of medicine.
Hi Lee, this is also a current possibility :New daily persistent headache (NDPH) triggered by a single Valsalva event: A case series.
Rozen TD
There is the NDPH Research.org who have up to date information
This daily headache forum is so good, gives all who have NDPH support and ideas from each other
wishing you and eveyone who comes across this site, all strength to keep on going and trying, and that you all find professionals with understanding of this NDPH to work with you
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.
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.
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.
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
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.
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!
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.