Talking the Walk (16)

Needles and Haystacks

About drugs I only have one thing to say. It is a very recent insight, but it offers a glimpse into a wealth of possibilities. It’s not about drugs per se, but about dosage. Over the years, I’ve tried a huge spectrum of drugs–from phenothiazine tranquilizers to antidepressants to various mood stabilizers–but all of them, even the ones that seemed to help, had side effects I couldn’t tolerate. So I’ve become very wary of drugs. My psychiatrist doesn’t push them–“I’m here to advise; the decisions are yours,” she says, which is one of the reasons I trust her–but she does sometimes suggest, especially when I get backed into a particularly bad corner, that there might be a drug that could help. Last fall, I got backed into such a corner and she suggested quetiapine (or Seroquel, its brand name). But when I tried it, at the lowest standard dose of 25 mg, it zonked me out so thoroughly and for so long–the familiar “zombie” effect–that I realized I could not possibly function in any normal way on it. An hour after taking it, I was drooling (literally) in front of the computer screen. I lurched down the hall and collapsed into bed, coming to hours later with a brain like wet burlap.

I cut the pills in half, then into quarters; though better, it still knocked me too far under. So I dropped the trial. But Dr. George happened to mention that she knew a couple of people who were helped by extremely small doses of this drug. And then Heather’s doctor said the same thing, that she’d heard of people who were aided by a mere “whiff,” as she put it, of quetiapine. So Dr. George wrote me a prescription for 1 mg–we would start from that baseline. The trouble came when I tried to fill the prescription at Shopper’s, only to be told by the pharmacist, very insistently, that the lowest dose sold was the 25 mg tablet and it was unobtainable in 1mg strength. “But that's the prescription my doctor wrote,” I said, pointing at the slip. “You might try a compounding pharmacy,” he muttered, then looked past me and said, “Next?” To make a long story short, in all of Toronto I found only two old-fashioned compounding pharmacies who could make up the prescription in the lower strength. I have been trying it for a few weeks now...it shows promise. But my point is (or rather, my two points are): 1) Cui bono? Who stands to gain if drugs are only sold in higher-strength amounts? You don’t have to be a conspiracy theorist to see that drug companies would not want it widely advertised that minute portions of their brands might help some people. Would any drug seller want it known that some buyers got by on a “whiff” of his product? Would he want to pay for the tests to discover such a possibility? 2) Which of my many failed drug trials over the years might have stood a chance of success at a dosage of one half, one quarter...one sixteenth...of the normal range? A “tincture of this, a tincture of that,” as the old saying went.

A bit of this...a bit of that. Even tiny pieces can have an important place in the mosaic.
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Dr. George tells me that one thing that has changed for the better about psychiatry–at least with good psychiatrists–is the understanding of how variable the optimal drug dosage is for different people, and how some patients may be helped by very small doses. Naturally this is not something the drug companies are eager to admit, and you often have to dig out the information yourself and insist on it. Also, more is now known about the very different rates at which people metabolize drugs. It is clear now that I am what is known as a slow metabolizer. Despite my large size, I absorb the psychiatric drugs very, very slowly, so that a little goes a long way with me. For instance, Heather is only two thirds of my weight, yet she easily tolerates, and needs, more than twice the dose of one drug that we are both on. This helps to explain some of the drug disasters I experienced on and off wards, when the “normal therapeutic range” was administered to me and it knocked me flat or sent me reeling. And it is why I combine very small doses of things–pieces of “the shifting mosaic”–to try to find the right overall treatment program.
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Now it is a year and half later, and that 1 mg of quetiapine has inched in tiny stages up to 5 mg, which seems to be the dose that helps without hampering me. Still one-fifth of the recommended starting dose. For the moment, that piece of the mosaic is in place. But another that showed promise has fallen out. Last July I started on 5 mg of celexa–one quarter of the standard therapeutic dose–to address the intractable depressions which have become ever more frequent and severe. We proceeded cautiously because of the danger that any antidepressant will kick a bipolar patient up into mania. The 5 mg gave me a helpful nudge, but soon I needed more. Upwards...slowly. 7.5 mg, 10, 12.5, 15, 17.5...all this over a three-month period...and finally to 20 mg. Good. For a few stable, productive weeks. Along the way there were side effects, but these were manageable and lessened with time. But then the serious side effect of akathisia developed, and worsened rapidly. Akathisia tormented me so relentlessly on the psychiatric ward that the very word is horrid to me. Its agony is indescribable except by metaphors: imagine a brush fire along your nerves and muscles, which can’t be relieved by scratching, clenching, kneading, pulling, tearing, squeezing, or pummelling (all of which you’ll try; along, perhaps, with throwing yourself at walls or floors; I was one of many on the ward stitched and bandaged for that); only vigorous activity lessens the inner burning, for a few seconds; then it catches again. Sufferers go vacuum-eyed fighting it day and night.

Tapering off celexa...quickly. Still feeling the burning-tingling-needling-itching. Fear that celexa is not the cause, or it has started something which now cannot be stopped. I have a new prescription for escitalopram. A cousin of celexa (citalopram), but one with slightly less potential for akathisia. It frightens me...but so do the depressions.

If I can get clear of the akathisia, I will probably give it a try.

Like looking for a needle in a haystack. Yes, but what else can you do if you need the needle?