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A Reader’s Story: Living With New Daily Persistent Headache
By Kerrie | February 8, 2008
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.
February 8th, 2008 at 4:22 am
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.
February 8th, 2008 at 8:26 pm
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!
February 11th, 2008 at 5:21 am
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.
February 11th, 2008 at 5:48 am
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
February 16th, 2008 at 1:51 pm
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.
February 22nd, 2008 at 12:27 pm
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.
February 25th, 2008 at 4:06 pm
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.
September 11th, 2008 at 5:54 pm
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.
September 15th, 2008 at 2:09 pm
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
December 9th, 2008 at 8:23 pm
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?
January 28th, 2009 at 9:58 pm
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
February 19th, 2009 at 6:58 pm
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
March 6th, 2009 at 8:41 am
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
April 10th, 2009 at 11:40 pm
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.
July 3rd, 2009 at 6:03 am
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.
December 30th, 2009 at 5:39 pm
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.
January 14th, 2010 at 5:49 am
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!