Showing posts with label misdiagnosis. Show all posts
Showing posts with label misdiagnosis. Show all posts

Tuesday, October 4, 2016

Robin Williams: how we got it all wrong




Robin Williams: the terrorist in his brain

About all I can say about this piece of writing (click on link, above) is that it's extremely important.

When Robin Williams killed himself two years ago, he was, in essence, already dead. But by the time the true story came out (in the results of the autopsy, which took three months), everyone had moved on. When it happened, there were lots of editorials written about how he was a sad clown who killed himself because he secretly suffered from depression (as in "but doctor, I AM Pagliacci").  His suicide spawned a lot of fevered articles about how we really really have to stop stigmatizing mental illness because look what it can do, even to a rich and famous person (and it's REALLY not supposed to happen to them!). A few people claimed he was "selfish" and just moping over his career slowing down, throwing his life away to hurt his family. And I remember a lot of people flung up web sites and Facebook pages just to talk about their depression because they were sick and tired of being ashamed of it and hiding it, but those sites just kind of faded away after a while. At any rate, I don't see them any more.

Here is what really happened.





Williams died from the effects of a horrible disease called Lewy Body Dementia. It devoured him, mind and body, frighteningly quickly. Though the symptoms caused his doctors to believe it was Parkinson's, it wasn't. It was something so much worse that I can barely get my head around it. I have no idea why anyone should have to go through such a hell on earth, and I believe he ended it while he felt he still could. 

Because no one had heard of Lewy Body Dementia and because people preferred to just see him as a sad clown and a poster boy for Reducing The Stigma, and because they had lost interest anyway, the public missed it almost completely.

Robin Williams' widow wrote this eloquent piece, this cri du coeur about the hell they walked through together,  for a neurological journal. They probably would not normally publish a piece by a non-neurologist.  But this woman got a closer look at the ravages of Lewy Body than all of them put together. It is an incredible piece of writing, long, but it barely scratches the surface. It is almost unbearable to read because it brings home the fact that all our lives hang by a thread, all the time. It is a powerful truth, and it continues to be powerful whether we believe it or not.






Saturday, January 19, 2013

Migraine: my amp goes to 11




This is a place I live in, don’t want to live in, never wanted to live in. I first moved in without my own knowledge, when it knocked me into outer space, a Van Gogh-scape of whirling light and pulsating white cogs. I had no idea what it was and assumed something was wrong with the taco I had eaten an hour earlier. I was only 21 years old and knew nothing about this. I don’t remember much except running to the bathroom to hurl, and it was unlike any flu I’d ever had because it seemed bottomless, the nausea was so extreme. Then in my far left-hand field of vision, seemingly suspended out in space, I saw the Cog, the flashing neon circle with the whirling spikes that I couldn’t blink away. Only later was my head taken over.

I think it held off for a dozen years. I don’t know what happened then. I think I was on lithium or some other drug that didn’t agree with me, but the nausea began to return. Then the rotten decaying feeling in the brain. This time I had a completely blank spot in the middle of my field of vision while I was out shopping, and barely got home safely.




A change of medication fixed it, or seemed to, until I began to experience the violent buck-and-wing of hormones which signals the end of fertilily.

(A sidebar: why does God, or whatever, seem to want us to stay fertile until we’re 95 years old? We’re at seven billion now, and the world is about to tip over, to explode from the strain, and yet, and yet, most women have something like forty years of active ovaries, of  relentlessly popping out eggs for more than half their lives, when they might want to use two.)

But the process, it just goes on forever, with all sorts of evil uncomfortable “symptoms” we have to live with. Ten years of it,  fertility violently breaking up like the Genesis Planet in Stark Trek 2, except dragged out in slow motion.

So I moved back into the neighbourhood, or was moved. Sometime in my 30s, I would guess. Most people use the expression “migraine headache”, which is a laugh.




The headache can be like a chainsaw to the temple (it’s generally on one side of the head), but it’s a mere frisson, a doily, a side-dish delicately sampled.

The main course is made up of many things. The day before yesterday, which was completely ruined by a “migraine headache”, the quality of my afternoon was announced by a queasiness that soon mushroomed into retching full-blown nausea.  Suddenly the spears of light coming in the window was unbearable, and then the sounds. . . not necessarily something loud, but anything shrill like my bird’s incessant shrieking, and – eventually – any sound at all. But smells are the worst: the gravy that we had with some mashed potatoes smelled like some metallic dirt factory, and I gagged on it.  Sound, smells, light, what else?

Any change in position. Any. I mean, changing from sitting to standing or vice-versa. My head balloons with an all-encompassing pain which does not go away if you sit down again. Bending to pick something up is obscene. I can’t even lie down in a dark room, like you’re supposed to, because my head expands geographically on the pillow. And don’t put something over your eyes to block out the unbearable light of your “dark room”: the smell of the fabric will make you gag.





Everyone says at this point, “Isn’t there anything you can take for this?” They say this with a mildly horrified, disturbed expression, as if they don’t want to hear any more (which they don’t).  “Just take some Tylenol. It works on headaches, it really does.” “Just put some heat, you know. . .” “Just put some cold. . .”

One-two-three, bibbidy-bobbidy-boo, and it’s fixed!

But they’ve never had one.

I did find “something” years ago called Imitrex, but I kept throwing up the pill. My old pattern was waking up with full-blown pain and violent nausea (who knows how I ever slept through it!). The idea is always to “intercept” the migraine before it gets really bad, but it was already really bad when I woke up, with no warning at all the night before. So taking the pill, a very very expensive pill, did no good at all because it ended up flushed. (Then comes the dilemma: do I take another one?)




That’s another thing, “triggers”. Everyone says things like “oh, it must be stress” or “do you have food allergies?”, or “Don’t eat old cheese.” (You should never say to anyone that you have any medical condition at all unless you want to be bombarded with advice that you never asked for. Most of these remedies seem to be herbal, especially if they sell them, or taken out of Farmer Brown’s Almanac from 1897.)





Then came a sort-of breakthrough, when the Imitrex, which sometimes worked well but mostly worked only half-assedly or not at all (thus shredding all hope) came out in a nasal spray. A one-dose puff of the most bitter substance known to man, which you could acridly taste going down the back of your throat.

Sometimes it worked miraculously well, raising the kind of hope I am now afraid of (which I sometimes call “the demon hope”). Just aborted it cleanly, no aftereffects except a stoned, euphoric, “high” feeling which was not unwelcome after feeling like shit for so many hours.





Sometimes it kind-of worked, after several hours of groaning and waiting, sitting motionless in a chair in a dark room, afraid to turn my head or even open my eyes.

But sometimes. . .

Sometimes, that $25/dose or so (it might have gone up since 2010, the last time I renewed it) is completely wasted. A couple of times the spray didn’t “deploy”, that is, it didn’t come out. The little spray device is powerful, spring-loaded, and you just push it once. But sometimes, nothing comes out. Either it’s not filled, or just won’t eject the contents.

This is one of many reasons why I haven’t renewed it since 2010. That, and so I won’t overuse it. Overusing any medication can render it ineffective, and it's ineffective often enough without making it any worse. So I tend to wait until I am in so much misery that I can’t go on without it. 





Another thing: the last couple of “headaches” decided to shift pattern completely, to flip upside-down in fact, so I awaken with only a mild car-sick feeling and hangover-y head, then experience a  relentless escalation, like someone very slowly turning up the volume on an old amplifier until it goes to eleven.

Soooooooooooo. . .




Thursday I guess it moved in, but as usual my memory is as hazy as the memory of a nightmare a few hours after waking. You think you’ll always remember it, but you don’t. That kind of grief and pain pulls down the shade.

This is Day 3, and though the Imitrex did seem to abort it after hours of escalating agony, I noticed it seemed to be back yesterday.




I have a theory about that. It doesn’t “come back”. This isn’t a “new” migraine, merely the “old” one deciding not to return, but to resume.

It’s a sprawling land mass, a geographical feature, parts of it submerged under water so you can’t see the perimeter, the borders, the vastness of it. All you know for sure is that you will fall in.

Along with their helpful advice to take an aspirin or swing a dead cat over your head at midnight, people tell you to “fight it as hard as you can”. This will mean approximately double the nausea, stress and indescribable head-pain, but hey, it’s what you’re supposed to do in this culture! Fight everything. Don’t give in, whatever you do.




Some fucking Freudian asshole might say I HAVE to give in because I am weak and/or want to crawl back into the womb. I look on web sites, and it depends: a lot of them, predictably, are bullshit, but some of them, surprisingly, say this is a medical condition, not a spiritual flaw, that it’s a neurological disorder with certain symptoms, chief among them NOT necessarily a headache.

Oliver Sacks got a whole book out of this, a ponderous tome, thick and dense and crammed with footnotes. He writes like a Victorian, in fact he IS one, misplaced in time,  his footsteps echoing through the dank halls of the Mutter Museum, peering at human specimens pickled in jars.

I have a copy of it somewhere but I never read it. I always lose my place when the footnotes cover more ground than the text. And that flyspeck type! No wonder this form of communication ended 150 years ago.












I swear it’s true, Doctor Sacks. It gives me a headache.