Sunday, May 24, 2009

Bad Headache Days 26 & 27 2009

Over the Flu, The Headache Takes Command!

Yesterday was a lost day. Between the pain and the medication, I was not able to do anything but be in pain and lie still. The pain was bad enough medication didn't really help, and the medication wasn't strong enough to put me to sleep. Today hasn't been much better.

When you are in the pit of pain, the walls are steep and dark and there are no handholds or stairs or ladders to get you out. You pray that the pit doesn't sink you deeper and deeper into pain to where you can't even see daylight anymore. Your mind becomes preoccupied with the pain, how to handle the pain, what to do for the pain, where to escape from the pain, to the point all other thoughts flee. At a certain point (for me at about 9.8 on a 10 point richter scale of pain) your body ceases to obey you, quivering and shivering and crying. The pain now commands you.

Each day you take the risk of inviting The Headache to errupt into the pain frenzy it loves. Sometimes it is just going to grocery store that opens the door to more pain, sometimes it is just driving to work, sometimes you don't even know what you have done to make The Headache wake up. Bright lights, hot weather, some odors, exercise, lack of sleep, too much sleep, hormones, lack of hormones, food, noise, stress - you name it, I can probably find a time when it has woken The Headache to full glory. I live a life of vigilance that only gives me the illusion of control. I'm really a servant to The Headache.

I'm not even sure what kind of headache The Headache is - I've gotten so many different diagnosis in the last year and a half. Status Migrainosus, chronic migraine, intractable migraine, paroxysmal hemicrania, cluster headache variant, hemicrania continua. The only one that didn't fit was medication overuse headache - and I was hospitalized by a smart alec neurologist for that because he was sure that was my problem, even told me I would have to be in hospital for 3-4 weeks. I guess their narcotic screening came up zilch and it was quickly established that was not my problem, and when all their multiple drug cocktails couldn't kill The Headache they were left scratching their heads. I never saw that neuro again - good riddance to bad rubbish!

Headache disorders seem to be difficult to treat. My primary care physician admitted it was out of his league and sent me to a neurologist. That was a total bust. It is difficult to find a neurologist who even wants to mess with headaches. They make a lot of money seeing people with other chronic issues that don't require emergency treatment or prompt followups. Headache patients take up too much time and need too much attention. I have found that many neurologists seem to throw medications with very high side effect profiles at headaches encouraging patients to take them even when their quality of life is ruined now both by the headache AND the medication.

I also found that finding a neurologist who would listen to you is a rarity. I had one tell me that she would not put me in the hospital for a treatment for acute migraine that day The Headache was in full mind numbing force because she didn't have a day off until the next week. I told her I was the one in pain here, and she told me that that was my problem. Yet another neuro I do not see any more. I did complain to her management, and I did complain to my insurance company about her. You can tell why that one became a physician - not out of a desire to help others!

I finally found a headache specialist who is in network at a hospital 200 miles away, and my insurance decided to make her out of network. Even she said that there wasn't much left medicinally for me for The Headache, but she did tell me to try getting an occipital stimulator, which is how I finally stumbled upon The Cleveland Clinic and the occipital stimulator study I am now participating in.

My family doesn't understand The Headache any better than I do. My responsibilities don't go away when the pain grows and return when the pain starts to get weaker. I have to balance doing as much as I can while the pain is at a bearable level (because it is with me 24/7 since December 2007) against aggravating The Headache and having more Bad Headache Days. The Headache generally wins any argument about what to do when, and the rest of my life has to wait.

Living with The Headache is a harsh life. When I start feeling sorry for myself, I have to remind myself there are others with worse problems and mine are just a drop in the bucket compared to theirs and to buck up and keep fighting The Headache with all I've got. Quitting is not an option, but sure seems desirable some days.


  1. Ouch! I've had that flu/head pain combination and it is a killer. And my heart goes out to you for the pain of every day and the struggle. Love the humor, though, not of this post necessarily, but your blog title is great - I said the same thing at 40! I'm 10 years along and the twine is still holding!

    Wish you luck with your stimulator study. I have a friend who's getting good results with one of those. Also there is a fabulous Headache Center in Springfield, Mo - the Headache Care Center - the directer, Dr. Roger Cady will be my guest on a free teleconference on Sunday, 5/31, if you want to hear him.

    Anyway, I was glad you stopped by my blog. I've added you to my blog-roll.

    Be well! Megan

  2. I have heard wonderful things about the Headache Care Center. My headache specialist in Kansas City interned there...and I work in Springfield, but they just don't accept my stinky poor paying HMO insurance.
    I will see if I can carve out some quality time for the teleconference on 5/31, and will check out how I can sign up! It's wonderful you are coordinating this!
    Thanks for some good news about the stimulators! I'm hoping for the best.

  3. You hit the nail on the head (sorry, bad pun) with "Headache disorders seem to be difficult to treat". After close to four years at this Headache thing now, nothing could be more true than that simple sentence.

    I had a so-called Headache Neurologist throw topamax at me and I ended up in the hospital four days later. Was he concerned? Nah. Just another annoying headache patient. It takes patience and vigilance to find the right treatment, the right doctor and the right maintenance once you find some way of relieving the pain, even a little.

    Stay with it - something good will come. Something will work. And if that doesn't, something else will.

  4. Thanks for the words of encouragement Sue!

    I've been down this weekend, but am perking up to normal exuberance today.

    Four years is a long fight, Sue. Enough to wear you out even for a year or two even when you find an answer to your headache!

  5. Great post! I understand your frustration with all the headache labels, as well as how tough it can be to find a great Neurologist. I've seen at least a half dozen before finding a great one, so keep searching :)

  6. I feel like I'm in a musical "I'll find a new neuro tomorrow, they'll fix up my noggin tomorrow, Tomorrow Tomorrow Tomorrow!" Well, I had a pretty good neuro, but now she's out of network - so I guess the search will continue! Thanks Jasmine!