23 April 2009

Yet Another Medication To Try

Well, I went and hung out with my neurologist again today. After having me describe my headache in detail again and looking through my chart again, he decided it sounded enough like something called a "Sjaastad headache" to try the only diagnostic tool for that type of headache. Oddly, the only way to determine if a headache is of this type is to take a specific non-steroidal anti-inflammatory drug (NSAID) called Indomethacin. Other NSAIDs like Celebrex, Motrin, Naprosyn and similar items have no effect. Only Indomethacin. If the headache responds, then it's a Sjaastad headache. Apparently, the effect (if there is one) will be fairly quick and decisive. A black or white difference, no grey area. By next week, I will notice a dramatic lessening of the headache or I won't. There won't be any of the "well, it might be a little better" type of feeling. I'm to call his nurse next week (he won't be there) and let her know if the Indomethacin worked. He has prescribed a large daily dosage so I can find out very quickly if it's working. He did say if side effects (nausea, constipation or diarrhea, upset stomach kind of thing) are too much, to cut down the dosage. I have 90 pills...and they should be gone in 2 weeks! If it works, I can refill it. If it doesn't, then it makes no difference. If it works, the longer-term dosage would be lower. I don't know how long I could/would stay on it. (Note: I'm allergic to Naprosyn, one of the other types of NSAIDs, so I guess I'd better be extra vigilant looking for reactions to this one).

If the drug does NOT work, he said we will treat it as an "atypical migraine" and see if it responds. I have no idea what that would be. I take it one step at a time.

What we do if it works but I'm allergic to it is anyone's guess. Naprosyn gave me terrible hives and it is the only drug to which I am allergic as far as I know. None of the other NSAIDs I've taken have caused any allergic reaction.

I looked up a little bit about this Sjaastad headache thing and it appears to also be called a "hemicrania continua" (some guy named Sjaastad was the first to write about it so his name is stuck on it). The description of it is about 90% dead on with what I'm experiencing, but descriptions of other diseases/syndromes have also been 90% dead on only to be ruled out. At this point, I definitely do not get my hopes up.

I dropped off the prescription at the drug store on my way home from my appointment. An hour later we went and picked up the pills (large pretty blue ones!) on our way to the Wizards v Red Bull NY soccer match. Sure is convenient that the drug store is right on our way to almost everywhere.

I took my first dose at the stadium. It does not work instantaneously, I did discover that much. And the headache's bad enough to where I could not stay in the stadium for the entire match. Way too much noise and stimuli for me to handle. I went and laid down in the car about the 65th minute. For those who don't know, there are 90 minutes in a match. At least my boys in blue won 1-0...by they played like shite. Oh, well. A win is a win and we'll take it.

I'll let y'all know how this drug works. Fingers crossed and prayers going for me, please!

22 April 2009

Well, That Didn't Work

Ok, the great Prednisone/Topamax experiments did not work.

While taking the Prednisone, it seemed the headaches were slightly less severe, but it was such a slight difference I think it was more hope than actuality. Darn.

As for the Topamax, it may eventually have been able to help me. However, by the time I was up to 4 pills/night (total of 200 mg), the side effects were too much too take. I was so loopy that I almost felt drunk (without the fun of tequila!) and had an even more difficult time concentrating on such hard items as, um, sitcoms or conversations with Bobby. So, Bobby and I made a decision to wean me back off the Topamax. At 3 pills/night the side effects are manageable, but they don't seem to stop the headache, so what's the point?

As for the headache, the base pain level (the constant pain that's always there) is moved up from a level 5/6 to a 6/7. What used to be occasional stabbing points of pain have now evolved into the feeling of 4-legged animals (ranging from goats to Clydesdales to elephants) tap-dancing on my head without any prior notice. And, yes, they are wearing the metal taps on their feet. All four of their feet. And sometimes they are not dancing solo. And they are definitely not light on their feet.

So, I'm going back to the neurologist tomorrow (Thursday). I want to go over everything with him and see if there are some other tests/procedures we can try or even if it might be beneficial to redo some now that it's been a few months. I will let y'all know what we figure out.

Oh, I did act like a somewhat normal human being over the weekend. We did have a couple people over for a "test run" of Soccer Saturday for the first time in a long time. It went ok, though I did have to basically check out of the conversation after a fairly short time, and there was no way I could actually keep up with the 2 or 3 games on the televisions at the same time. That ability is definitely beyond me at this point in time. Oh, well.