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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.