Narrow Escape

Oh, I so won't be detailing all the headache nuances here. Not a pretty sight. My phone has a recorder function. I'll buy some extra memory and use that.

31/10/07

I have to admit I don't remember the details of the headaches I've had so far today. Keeping a diary of pain has always been hard for me. I'm easily distracted.

No time like the present, though.

It's almost 5pm, and I'm feeling pain across the sinuses and through the right side of my head. I haven't experienced notable auras, and am mildly nauseated. If we could the pain that sent me to the ER yesterday as a 9, this is a 5. I do want to go home and sleep it off.

I have taken nothing for it today, it being a post-ER day.

I've called the nice lady about the study I mentioned earlier. Got no feedback from my specialist about whether or not it's a good idea, but the coordinator knows my specialist (the researcher is his boss) so hopefully that will all get clarified.

There's compatibility to be determined. Something about a grade 5. That may refer to the size of the hole--I don't think mine was big, all things considered. I just googled pfo grade and my head exploded. You have been warned. Anyway, none of those links mention a grade 5 that I saw, so I don't know what that means.

She's advised me to keep a headache diary, since they'll need 30 days of diary before they get started. This is as good a place as any.

Hole-shaped heart

Got an interesting call today. Turns out my local version of the PFO/migraine study wants to have a word with me.

In short, there's a wee hole in a fetal heart that allows blood to short-circuit the lungs (hey, who needs them?) that's to close when you're out and about in the big bad world. Often, in migraineurs, it hasn't closed up. Scuba divers are put at an increased risk of the bends by having this hole, and migraineur divers who had the defect corrected also noted a break in their pain.

But it's all unofficial, and they need to do more testing. I have the hole. My previous migraine specialist didn't want me to do it because she thought there were side effects that mitigated it.

I've left a message with the new guy. The doctor running the study is a coworker of his.

We shall see.

Main course or side dish

The particular feeling of nastiness I'm having right now feels familiar. Feels familiar in a third week of Namenda sort of a way.

I haven't read up on the side effects of this anti-Alzheimer drugs, but I'm nervous it's what's responsible for this 24/7 migraine with not so much pain. Sure, you might think that the pain going would be a good thing. And it is! It's just that the nausea, sensitivity to light, sound, motion, cognitive impairedness--they're still all here. The things that migraines took off the table are still off the table. And I can't even go to the ER to get them back for a little.

I expressed this concern to my migraine specialist as best I could (I have to go through a middle person to talk to him), and he's told me not to stop taking the Namenda, but instead to do week 2 again of the tapering starter pack. I'm on week 3 now, 15mg of the stuff, and really just not happy. I could sleep forever with the slightest provocation.

Hopefully that makes the difference--I'm not sure how he intends to get me past 10mg, and I'm not sure this is better than this time last week.

October Resolution

I've tried from time to time to apply Zen philosophy to my life as a means of achieving calm especially in the face of chronic pain.

Mindfulness, the idea of being in the moment as opposed to concentrating on one thing to the exclusion of all else-denying the migraine an opportunity to bog me down by expanding my mind beyond just those physical sensations, is my goal.

Or would be. To be honest I've done very little. Some, perhaps, during biofeedback training, and my escort exhorts me to think of lounging on a beach, or to practice biofeedback, or just to plain put my shoulders down when he sees me getting worked up over anything.

I don't think I have a baseline of stress that's any worse than anyone else's--especially when you take migraines out of the vicious loop. But added stress can push me over--that vague premigrainey feeling can become the real deal with a one paragraph email or a voice message measured in scant seconds.

I've breathed my way through other pains before, tried to open myself up and just flow with breath, using breathing as my markers, not feeling. But migraines come with so much other package--thinking or feeling my way out of sluggishness and nausea is considerably more complicated.

For the simple ones, with sinus involved (by simple I mean tightly focussed pain--these are like hot knitting needles being slid up my nose) and little else, I can take my mind off for a while. But many of the rest are more complex, and require more (or less?) work.

One general thing, something that doesn't have to wait for the onset of the next bout, is to inhabit the present more clearly. If I can pull my attention away from how long I've had the current headache, how little respite I've had recently and not be throwing out contingencies for the next ER visit or the next abortive drug, maybe I can lighten the load on my shoulders some, and leave myself with less to ignore the next time.

Well, that's the plan, at least.