P.S.

The only trouble with the wonderful giddiness of migraine recovery is I usually have difficulty falling asleep the first night. Not sure if it's some weird serotonin glitch leftover from the attack or just that I'm so high on life I can't come down...
Not that I'm complaining, mind you.
Just sayin'

ambiguous blessings

Cold apple juice tastes like nectar at the end of a 48 hour attack.
The only emotion stronger than the absolute terror of the (inevitable) next attack is the utter joy of not being in pain. Of being free to walk around, talk to people, eat, go online, do the 1,001 things that add up to so little, but mean so much.
I haven't been here in a while.
Unfortunately, it isn't because I've found a cure, or maybe just gotten through this long, painful season of migraine.
I could speculate about why, but who really cares?
It was the taste of that apple juice last night, drunk standing in the light of the open refrigerator door, that inspired this. I've seldom tasted anything so perfect.
But does it make the hours of immobilizing pain, nausea and vomiting somehow worthwhile? Oh Hell No.
But -- I guess it's something.
Today when I got to work I was still in recovery mode. I think it's more the dehydration and the fact of not having eaten anything for a couple of days than any lingering effects of the tumult in my head -- but my head did feel slightly odd.
The best way I can describe it was it felt borrowed -- like an unfamiliar car I'm slightly nervous about driving.
I don't know what else to say.
In between the last time I posted here and now, I've read Andrew Levy's migraine memoir, "A Brain Wider Than the Sky."
I had every intention of reviewing it here, as none of the reviews on Amazon quite expressed my feelings about the book. Some liked it and identified it ("Oh my God I have migraines too and it was so great to find someone who understands!") some objected to the flowery language and others were disappointed because they didn't find any new remedies between its covers.
The flowery language didn't bother me (mostly) and a lot of the historical stuff was pretty interesting, but I found the book increasingly difficult to keep reading.
I felt challenged to, oh, I don't know, accept my migraines find some higher meaning or purpose to them, go out and write a heartbreaking work of staggering genius (sorry Dave Eggers) -- and it was hard.
As it to do much of anything when under siege of the big M.
I mostly just hate and fear them, it, whatever.
What I was thinking this time was how much it felt like being held hostage. Held hostage by something that hated me.
I remember, in a half asleep state, suddenly thinking that the problem was this body -- get rid of the body and I'd be fine! That seemed like a brilliant solution in my half dreaming daze. The idea has merit, as anyone who suffers migraines could attest.
I like the way Joan Didion puts it best: "That no one dies of migraine is, to someone in the midst of an attack, an ambiguous blessing." That might not be the exact wording, but I know it's close.
But then, also, given the way I twist and dodge to avoid them, with whatever arsenal of drugs and other devices (more about that later... oh soooo much more)its arrival felt like -- like some profound, implacable fact that I continue to avoid.
Levy said mysterious and cryptic things to the effect of migraine being somehow intentional, being a messenger of some sort -- of being purposeful.
Well, lets just say I took all that with a grain of salt. Having frequent, severe migraine can make you a little goofy. Toward the end of this last bout I remember thinking that I would lose my sanity if it went on another day. I also recall thinking that I was probably being dramatic, but seriously, the severity and duration of the pain... it's hard to imagine not being on some level fundamentally altered by it.
But -- as I was saying, I did start to wonder if there were some psychic source of this hideous malady. If I were indeed somehow bringing it on myself by my actions or lack thereof. If it did indeed have some agenda, something to teach me.
If so, couldn't it just send an email?

Weird new pains

Well, sadly, the beneficial effects of the CoQ10 seem to be ebbing -- as everything else that ever helped seems to have done eventually. I got two-three good months out of it, so I guess that's something. Also, I'm not sure if it helped with my chronic low-grade depression or if that came about because of the relief from pain...

Anyway, today has been, well, not terrible, but just kind of trying.
I had a fun assignment out at a wildlife refuge for most of the morning, but the whole time had the nagging throb of a threatening headache that skimmed a bit of the fun off the surface.

By the time I got back to the office, the signs were unmistakable and it was time to take maxalt. I got it out of my purse and held the packet in my hand, sat there looking at it and thinking about how much I hated the way it made me feel and set it down on my desk. I thought, "well, maybe nothing much will come of it, and if it does, I'll just call in sick tomorrow if I have to. I still have one sick day left to get me through to April 1, when the clock starts again on sick time (yeah, I know, that's a strange timetable for sick time -- too complicated to explain).

But it kept intensifying and thinking about how much worse a full blown migraine feels than the unpleasant side effects of triptan drugs finally persuaded me to just take the damn thing. I did, but when it hadn't had much effect in an hour, I started to think maybe I'd waited too long and braced myself for the onslaught.

It never quite came. I went home and laid on my bed for a while and felt things shifting about inside my skull. Couldn't tell quite what direction things were headed. Now, a couple hours later, I'm feeling the sensations of the maxalt starting to work -- but there's something slightly worrisome: I'm feeling this weird pain at the back of my head, starting near the top and kind of branching down the sides. Not sure what that is and it's something new.

Anyway, it's disappointing about the coQ10 -- I really hoped that might be of some lasting benefit, but I'm back in one of those phases where I've been fighting a headache for about the past 10 days and I start getting worn out with it and worrying about how much worse things might get. I hate myself for all my worrying. It doesn't help anything, and in fact probably makes it worse.

As I said, I'm looking into another option, but I haven't had a chance to get around to making an entry about it here. I will, I promise. But in the meantime, here's a link to a news story about it:

http://www.mlive.com/living/kalamazoo/index.ssf/2009/10/nerve-stimulation_implants_eas.html

Anyway, it seems a little extreme, but I can't say as I really feel that great about taking triptans 10-15 times a month. The literature that comes with the prescriptions says something about an increased risk of stroke, which is something that concerns me.

Soooo... I will try to get to that post about neurostimulation soon, I promise, oh my vast audience of avid followers!

Coenzyme Q10

I thought, for the sake of my fellow sufferers out there (none of whom seem to be reading me, but oh well) I'd talk a little about Coenzyme Q10, which has improved my quality of life lately. I superstitiously fear to say anything in case I somehow jinx myself -- but just in case it could help anyone else, I feel obliged to put in my two cents on the subject.

I have other things going on -- other treatments I'm looking into, but I'll try to get to that soon. Hopefully I will have good things to report -- but there are tedious complications to getting cleared through insurance etc. and I don't feel up to delving into all that in my currently scattered state of mind.

Anyway -- I don't remember where I read about CoQ10. But I read about a clinical trial that showed a good percentage of people who took the supplement for four months and reported a 50 percent reduction of headaches. Well -- 50 percent isn't anywhere close to where I'd like to get, but hey, I'll take what I can get.

I bought the stuff and took the first dose before leaving the parking lot of the health food store. I was feeling that familiar queasy, pre-headache pain that has become such a source of dread for me -- always wondering if it' going to stay a headache, or if it's going to segue into the horror of migraine. Anyway, it seemed to help right away. And I began taking it every day. I wasn't sure how much to take at first. I think in the study it said something about people taking between 100 and 300 mg -- or maybe I read that somewhere else. I started with 100, but that didn't seem quite enough, so I upped it to 200 after a few days.

Here's a weird thing -- in the research about using it for migraine, I read that it should be taken as a preventative, but wasn't effective to abort an attack, but one evening I was at work and felt a headache coming on and it was starting to ramp up and I didn't take medicine fast enough and I thought, "here we go." For some reason -- I don't remember really even thinking about why I was doing it -- I took another 100 mg of the CoQ10 -- and the headache faded away!

So -- pretty cool, right? I've used it a few times like that and it seems to work some of the time. BUT -- and of course there's a but -- there are some side effects and I've found I really shouldn't take more than 200 mg per day. Otherwise I get a fairly unpleasant stomach ache and it also aggravates my insomnia. But I feel that, at least for now, it has been helping me keep my medicine use in check. I'd been trying to alternate Exedrin with the Maxalt, but I guess I was using it too much because by the beginning of November it started really ripping up my stomach and I had to cut waaaaay back -- like I didn't take it for more than a month to make sure I gave my stomach lining time to recover. Since then, I've cautiously used it 2-3 times without too much distress, but I'm trying not to use it more than once or twice in any two week period.

So -- I would feel comfortable recommending CoQ10 to any migraine suffer. Possibly people with less medicine sensitivity than I would be able to use it without any side effects at all.

I'll get back to ya on the other stuff I mentioned.

long time no write

Sorry about that.
Depriving you, all of you, my gazillion followers, of my amazing brilliance and insight.

But enough with the chit-chat.

I wish I could say the reason I haven't written is every thing's been just peachy and the migraines mysteriously went into remission or something like that.
But that isn't the case. A few times, mostly while lying in bed consumed with pain for hours on end, I've had fleeting ideas for posts that would shed light on this horrible affliction. It isn't that I've given up on finding a cure, or at the very least, a way to cope with this and not let it take over everything in my life -- but I've begun to feel that thinking I could somehow write my way out of it was a little naive, or maybe just misguided.

Still, there are many weird little things about living with migraine that seem worth exploring a bit. Like the way that the fear of an attack makes me lose my mind. For instance, even though I don't really believe that chocolate, nuts, pineapple, citrus, balsamic vinegar, or several other food items I can't think of at the moment cause me to have headaches, because I have read that they do for some people, I tend to avoid eating them. Once I threw out the last two pieces of some honey mustard chicken I'd made because I became convinced that the vinegar in the mustard was a trigger. In fact, I haven't made the recipe since, even though I have eaten ketchup and salsa, which probably have as much vinegar as mustard does if not even more.

Maybe that's not really that interesting, but I think it illustrates some kind of magical thinking that begins to creep up around my migraines -- like if I sacrifice chocolate to the migraine gods, they will be appeased and leave me alone. These elaborate rituals of fear spring up around the most everyday activities.

A bright side is that although several things I've tried haven't worked against the migraines, they've been helpful for other things. Like the neti pot, which is a little teapot like thing with which to do saltwater nasal washes. Since I've been using it daily, I haven't had a sinus infection. It's been a couple of years. Once I stopped using it for a couple of weeks and I came down with one. And vitamins -- since I've been taking daily multivitamins, I've hardly gotten sick at all (which is an especially good thing since I use up my sick days on migraines).

But -- I can't say I haven't found some things to help me cope.

The latest thing is Co enzyme Q 10, a kind of freaky supplement that has something to do with mitochondrial DNA (it's something that occurs naturally in cells, and it apparently abates with aging). I read about a study of people taking it daily cutting migraine attacks in half. So I started taking it. It seems to be helping, but I still get clusters of them a day or so before my period and for the first three to five days thereafter and then another little bunch for a week or so around when I'm ovulating. I've read about how those are the two times of the month that the hormone progesterone is at its lowest point. For a while it seemed like using progesterone cream was helping, but then it stopped working. As most things seem to, eventually.

Really, just writing about it is making my head hurt. Okay, I'm in about day three of my cycle, so I'm a little prone that way. But this isn't why I sat down to write. I haven't even gotten to that and I'm already fading out.

I wanted to write about my latest go round with the doctors. I had a kind of unpleasant experience with a doctor who seemed to hate me on first sight. Okay, I admit I had a bad first impression of her as well, but I was willing to give her a chance. She didn't seem interested in hearing what I had to say, and was sarcastic and rude with me. I hate to stop here without telling the whole story, because at the rate I'm going, I won't get back here for another year, but I really don't feel like staring at this screen is doing me much good at all.

So -- I'm going to stop and try -- really try -- revisiting the topic in the next few days. For whatever the hell good it would do. I know it might seem like I'm some kind of pariah here, friendless and bereft -- but I'm really not. I actually have quite a large circle of friends and friendly acquaintances, but I've been reluctant to put it out there and invite them in. Maybe it wouldn't matter. Maybe one or two people would take a gander once or twice and that would be the end of it. But maybe they would judge me, think I'm stupid or melodramatic or self pitying or something. It isn't that I don't tell anyone about them -- I occasionally bore a few of my closest friends and once or twice when I'm particularly distressed I'll spill to someone I really don't know well at all. But it seems like a weakness in a way that somehow this doesn't -- at least, as long as no one I know reads it.

So there you have it. My neurosis all served up on a bed of slaw.

The only other thing is, since I wrote last, I guess in January of last year, I've had four of the worst migraines I've ever had in my life. One in February, that lasted for about 36 hours and involved copious vomiting; another one in the beginning of September that was nearly as long and happened when I was traveling (I was staying at the Crown Plaza Hotel in Alexandria, Va for the worst of it -- by far the nicest place I've ever puked) Then I had TWO like it in October, two weeks apart, then another one that lasted slightly less long Thanksgiving weekend, so instead of making merry and eating too much with friends, I lay in bed, getting up only to vomit or let the cat out.
So that was actually five, I suppose, not four. I guess I could just go back and edit, but that seems like too much bother...