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

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

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

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

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

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

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

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

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10 Responses to “A Reader’s Story: Living With New Daily Persistent Headache”

  1. Thomasina Says:

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

  2. Karla Says:

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

  3. mik Says:

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

  4. David Says:

    Andy,

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

    David

  5. melissa Says:

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

  6. Angela Johnston Says:

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

  7. John Kuhlman Says:

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

  8. gina hensley Says:

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

  9. Melissa B Says:

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

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

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

    Take care,
    Kerrie

  10. Becky F. Says:

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

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


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