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Your Headache Stories, Part 1: From Jantha

All of our stories are unique, yet the similarities run deep. By reading other people’s headache stories, we can learn from and get comfort from each other.

Jantha describes the moment her headache began, the diagnosis and drugs she’s tried, and the impact it has had on her relationships.

On March 6, 2001 at about 8 p.m. I developed a severe headache. It felt like like a giant was holding his hands against my ears and pressing with as much strength as he could on my head. This pain has not ceased since, five years and counting. I have been diagnosed by a specialist with NDPH [new daily persistent headache] caused by thoracic outlet syndrome.

I have taken Migranal, Epidrin, Cymbalta, Depakote, Fiornal, Elavil, Effexor, Keppra, Valium and all of the triptans, to name a few. That’s all I can recall, given my reduced mental capacity due to the aforementioned substances! All in a year and a half. I am currently on Lyrica, Veralen PM and Effexor with Topomax thrown in lately (Dopamax or Stupemax as it is known).

For reasons that are obvious to me, I am just about to lose my low level job and my few remaining friends. After all, five years plus of hearing someone whine about their pain is more than just about anyone can take, however noble they may be.

On the plus side, I have finally received some relief from Lyrica and Verelan PM, and Topamax seems to help with the pain also, although it wipes my memory. I find myself groggy, stupid and fatigued but relatively pain free… as opposed to awake, sharp, energetic and ready to cut my head off due to pain. I guess 0=0 in this case.

I can’t understand why they can’t just hook me up to their fancy machines and determine what’s wrong with me and fix it. I alternate between hope and despair.

Jantha ended her e-mail to me by saying, “It helps to know others are going through similar experiences and coping somehow.” And this is why it’s so important to hear stories from many different people. If you’d like to share your story with me and/or readers of The Daily Headache, please e-mail me.

9 Responses to Your Headache Stories, Part 1: From Jantha

  1. toni says:

    does anyone have any experience wtih cold laser treatment for migraine?

  2. Headache Boy says:

    I’ve had the same pain as you. I’ve suffered for 5 1/2 years without finding any type of cure. I figured out I had New Daily Persistent Headache through my own research. Right now I’m working w/ a doctor and trying Depakote….it doesn’t seem to work….like the 20 other meds I’ve already tried. I guess I gotta keep trying.

    I have little hope though that any drug will cure. From my research, it seems like nobody finds a cure. Those who do, seem to be the lucky ones….they wake up one day and the headache is gone. I hope that will happen one day to me.

    ********
    I’m sorry you’re suffering so much. It’s so tiring to try medication after medication, but nearly everyone eventually finds something that works.

    I wish you the best of luck.

    Kerrie

  3. Andy says:

    I have the exact same thing. 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.

    Thanks to Kerrie for making the effort to organize and maintain this blog. It helps to have a forum for sharing findings and frustrations with others who can truly empathize. I’ll definitely be checking in more often.

    *******
    Thanks for the kind words. You’re definitely not alone!

    Kerrie

  4. David says:

    Great blog and resource for us. I have NDPHA as well. About July 22, 2004, I was under some major stress as far as big decisions for myself and family. Out of nowhere I had a massive headache that knocked me off my feet for two weeks. I’ve never been sick before.

    Ever present is this dull pain after a bombardment of tests which can’t be anything other than NDPHA. I have been taking a different approach besides the amitriptolyne and topamax (which don’t work that well). I’m going to try to attack this as if depression caused the HA, or vice versa. I have a family history of it although my life is as good as it gets absent the constant pain and I’m not sad, upset, or whatever.

    Keep looking everyone, something works.

    David

    *******
    Thanks for the kind words. I wish you the best of luck in your search for relief. It sounds like you haven’t let your headaches get you down. That’s hard to do, but so helpful.

    Take care,
    Kerrie

  5. Lesley says:

    It is comforting to find this Blog, as it reaffirms me that I am not crazy. I began having headaches a little over six years ago when I was pregnant with my daughter (She turned 5 in August)

    Initially my doctor thought it was being caused by hormones, and then once I had given birth and my hormones had gone back to their normal levels, the headaches still persisted. I have had a headache every day for the last 5 Years. They began as every two days and would last for two or three days at a time, and they have progressed to having a constant pain.

    I have been to doctors, dentists, accupuncturists, massage therapists and god knows who else and have tried a slew of medications with no relief. The only thing tha seems to help is to take narcotic pain meds that make me sleep, however I still wake up with the pain. My headaches flare up several times a week and are dibilitating.

    For the past five years I have been told by so many people that I have migranes that I cannot even count. This has been extremely frustrating to me because none of hte medicines that are for migranes give any relief. I have taken over 40 migrane specific drugs to include injecting myself with imitrex and none of these help, but the neurologist is still insistant that they are migranes.

    I have been extremely depressed lately and have began seeing a pain management specialist to deal with the constant pain as I have given up on findng a reason or a cure. If anyone has any suggestions or methods for coping, I could really use them.

    Thank You all for listening (or Reading) my rambling. It helps to know that I am not he only one who cannot figure out why their head hurts on a cosistant basis (it still sucks for each and everyone of us, but it is comforting). I am just glad to know tha I am not crazy, that it is real and that others have the same problem,

    Thank You all and God Bless

    Lesley

  6. Iris says:

    I have daily headaches also. I have had them for at least 20 years. I have tried everything. CT scans, MRIs, all came back normal. I have tried Topomax, Depakote, Enderol, you name it. They simply do not work and have horrible side effects. I do yoga, exercise. Some days when I actually go the whole day without a headache, I thank God and wonder what I did differently that caused me not to have a headache. I pray someone will come up with something that will help us. I mean, I have to take something to get rid of these headaches because they are debilitating. So, then you get immuned to the otc drugs and then they start causing rebound headaches. It is all so frustrating. Some days I just want to give up. I get so mad, because it is so unfair. Somebody please help!

  7. fatme says:

    hi and thanks alot for sharing your stories .
    i have a daily headache too its not painfull all the time but it want leave me alone i did ct scan and it came normal i tried all kind of pain killer with no help iam so sad and stress full i dont know what to do speacially i have two liitle daughter i need to take care of all the time . i dont trust doctors they dont know what is going on they only care about money. sorry for saying this but its the truth. hope u all got better .ameen

  8. Dot Calvert says:

    My husband has had headaches for over 20 years. The pain is somedays unbearable and is getting worse. He is 63. I see the pain in his eyes and face all the time. It is hard for him to have fun. Working is his only distraction from the pain. I pray for a cure. Help. Not a migrane, cluster, etc. No one can pinpoint it and he as many others can tell you the very day he started with them because it has never ended. I feel lost at what to do for him.

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