miracle meds? headache types, etc.

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Posted by Elizabeth ( on September 06, 2001 at 15:04:46:

In Reply to: Sounds like you're having a really bad time, Elizabeth. What posted by Donna on September 06, 2001 at 11:45:58:

In the 80's, I was on Cafergot - didn't work.
In the early 90's, it was ESGIC (sp?) - only relaxed me.
In recent months/years, I've been on:
Inderal - worked in 1999 but not anymore
Compazine by IV in the er - didn't work
A shot of something starting with a 'T' - worked the first time but not the second time
Imitrex shot - has worked but only if the headache is mild (relatively speaking, of course!)
Indocin - didn't think it was working, but now that I'm off it, I can tell it was definitely doing something!
Neurontin - only been on it for 10 days or so - no improvement yet though I'm very hopeful.
Imitrex tablets/spray - rarely help, but occasionally they take the edge off.

I have several different types of headaches:

One is in the eye/temple area, usually left but occasionally right. I get floaters (blurry thingys that move across my eye) before these - the bigger the floater, the worse the headache. My forehead starts dripping with sweat. I get dizzy & feel like I'm gonna vomit, sometimes actually vomiting. These hit like a freight train - POW! A giant is driving stakes into my eye from varying angles, but several at the top of my eye close to my nose. Then he lights them on fire - they heat up, searing my eye and brain. Then he decides to play kickball with them - kicking them back and forth, moving them around in my head, scrambling my seared brains. Pressure, like my eye is going to explode out the front of my head. Most intense at the beginning, weakening after 5 or 10 minutes most times, gone within 10 to 20 minutes usually. Lingering "achy" pain. Exhaustion. [today I get a 5-10 minute "recess" between headaches. I'd almost rather just have the constant pain today.]

Another is above the ear - inside the head, so not muscular. Tight, pinching. This one grows rather than just hitting, but grows fast. Sticks around for 45 minutes or so. Relatively constant level of pain. Rapid departure. Leaves behind shadows but not much real pain. Exhaustion, but not as bad as the "giant in the eye" ones.

The third feels like someone hit me in the back of the head with a baseball bat. Usually at the top of the neck, right below the skull on the back of the head - either left side or right but not both at the same time. Last 4 to 6 hours, sometimes longer. The pain is just enough to keep me from having a life but not enough to put me out of my misery.

As for support - AS IF! People seem to be trying but they just don't get it. I have tried to inform them but they don't want to listen. They assume (and tell me) that I am causing this. Basically everyone has lost patience - Elizabeth's had enough attention so her headaches have to disappear because we want them to. My neurologist is very knowledgable and supportive - but 15 or 20 minutes every 6 to 12 weeks doesn't exactly help. Tried a psychologist - that would be helpful if there were a possible solution (besides taking a knife and cutting half my head out, which I will not do).

They do wake me up at night. I find myself taking 5 and 6 hour naps on the weekend or if I take a sick day - that's on top of 7 to 8 hours every night.

I did have one day with no headaches - 9 am to 9 pm headache free! That was months ago, though. I'll hit my one year mark in a few weeks.


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