Adventures in Lydy Land

It's sucked to be me more than usual, these days.

Let me start on the basic primer on How We Got Here. Many and many a year ago, in a kingdom about a five hundred or so miles closer to the sea, I became miserable. Really, dysfunctionally, spectacularly miserable. After a decade, various doctors decided that it wasn't just hormones, after all. We began treating depression, and lo, Prozac was very, very good. For about two years.

Then we entered into the mountain range of antidepressants. We tried Paxil and Trazadone and many others whose names I no longer recall. Some of them worked, and some did not. Finally, a brave and lonely psychiatrist said, "Lo, Lord, by certain signs and portents that Thou hast sent unto me, I see that this Patient is Bi-Polar." And many beams of enlightenment did shine forth from heaven and pills of all shapes and colors showered down around her blessed patient.

Or something like that.

For reasons that nobody really knows, Serotonin Selective Re-uptake Inhibitors (SSRIs to you) help with depression. We barely understand what re-uptake inhibiting is. Serotonin, not so much so. In a very real sense, psychiatry is in a Nineteenth Century phase of medicine. Serotonin does something, we take careful notes, then make theories based on those results combined with our currently inadequate understanding of the workings of the brain, do more studies, and serotonin does something unexpected. More notes, more studies, and shifting theories on what that damn organ called the brain really is in the first place. The brain is a terrible thing...too wasted. We've been working on an accurate model for centuries. What we've got are shadows of shadows of shadows with a few bright shiny spots which will probably turn out to be reflected light.

All the doctors talks a good game. Now go read Oliver Sachs, and get back to me. Compared to the size of the knowledge required to describe the brain accurately, we've got a millet seed. Hey, this is my brain we're experimenting with, ok? You think I like this? So this is the point at which all the laymen start their wailing and moaning and gnashing of teeth. Oh, put a sock in it, my brothers. No, we don't know how SSRIs work. We don't know how 50% our pharmacopia works, precisely. The better we understand the organ, the more likely we are to understand the drugs which affect its functioning.

So, let's get back to my brain.

Bi-polar is at least as weird as depression, near as I can tell. I haven't paid as much attention to it. By the time I got to bi-polar, I was at the point where my attitude was, "Yeah, whatever, give me the pills, I'll take them." There are lots of types of bi-polar. (Why not? There are lots of types of everything. My theory is that all brain diseases are really syndromes, clumps of symptoms that all look the same that may or may not be the same disease.) Most bi-polar cycling can be stopped, or at least slowed down, by an anti-seizure drug or six. As with almost every other damn drug I'm on, the explanation sheet has that charming and endearing phrase, "although doctors are not entirely sure the precise mechanism by which this drug works..." Boy, over the last 20 years am I used to that caveat.

Most anti-depressants, most especially the SSRIs, don't seem to have very many side effects. They can make your make your mouth dry. Wellbutrin makes my hands tremble. It does not cause facial twitches. (Facial twitches are a severe problem, possibly worse than you realize. It makes it very difficult for people to talk to you face to face. You send totally wrong signals. Think about talking to very pleasant people who have been blind from birth. Without practice, it can be horribly distracting.) There are other side effects, some far more serious, but I don't suffer from them.

The anti-convulsants, though, are a lot harder on the brain. They're the ones more likely to get into things like aphasia, loss of hair, memory loss, etc. Things like aphasia and memory loss can be permanent. I can't speak to the memory loss, but my aphasia's getting worse.

Aphasia is normal for a woman my age (44). Losing nouns, verbs, even adverbs and adjectives happens. Brains slow down. But frankly, I'm really not needing chemical help, here. If there's a thing I prize, it's my verbal skills. Fat, slow, I can live with that. Stupid? Just shoot me.

I've started having sentences go missing. From the outside, it's not noticeable. It looks exactly like aphasia. I'm in a long sentence, and then there's a pause, and then I continue, usually. Except that sometimes I'm looking for a word, and sometimes I'm looking for the rest of the sentence. That scares me. Yesterday, I was talking to David, and I was trying to finish a sentence, and I said, "...talefan, talefan, talefan, fairy tail!" That's actually a whole new style of word scramble. Ain't it great? This may be the result of the new anti-convulsant that my psychiatrist put me on, Topomax. It's fondly called "Dope-o-max" and "Stupid-o-max" by many people who have taken it.

Have I mentioned it's the anti-convulsants that are most likely to do permanent brain damage? The risks, per the various public information, National Health, and so on, indicate very low risks of, well, everything. But fuck it, this is my brain. On drugs. And I do not see bacon or a side of toast, than you very much.

Welcome to Lydy Land Part II (Goddamn Word Limits)

WITH ME SO FAR? BECAUSE HERE'S WHERE IT GETS COMPLICATED:

So, I saw my psychiatrist week ago. I've been seeing her for 10 years, and no, I don't need another psychiatrist, thank-you-very-much. The anti-depressants haven't been working so well, lately, I'm back out on medical leave for not being too depressed to hold down a job, and I'm cycling which is why I'm depressed, and here we go 'round the mulberry bush. She writes me a prescription for a brand new anti-convulsant/anti-cycling drug (Topomax), and then says that she's not necessarily recommending it, but that it would be unprofessional of her not to let me know that ECT (electroconvulsive therapy) is an option. Well, this is good for a solid half-hour's dissociation, but I spent part of the time reading the brochures. Then I spent part of the time readin' stuff on the Web. Then I read some more stuff. Corrected some of my misconceptions. Read some more stuff. It still has significant ick factor, but not because of the usual "One Flew Over the Cuckoo's Nest" resonances.

Boring recitation of basic then and now facts: except in Texas -- which makes sense -- ECT isn't used as punishment. Even in Texas it isn't used as discipline very often. Currently they give you a muscle relaxant that makes it impossible for you to move, much less break your arms or back, as happened in the thirties and forties. They put you out, so there is no pain. The amount of zap is much smaller than it used to be, these days it may not be enough to even cause a physical response. There are doctors who use more than 100 zaps a year, but they have way recalcitrant patients, and the brochure kinda sounds like maybe someone should lift their medical license. Most patients receive considerably less than that.

I'm not very good at researching this kind off stuff. My brain tends to go to mush under the pressure of panic. Anybody that knows a lot who wants to post here or send me email would be much valued and praised and I'll send them a shiny nickel and everything. ECT is an adjunctive therapy, which means that it's not the only thing they do. It doesn't have any affect on bipolar disorder, just on depression. The initial set of treatments is between 3 and 12. My psychiatrist prefers three or four on an out-patient basis. ECT, as an adjunctive therapy, may reduce your need for anti-depressants, but is unlikely to remove your need for them all together. And you will certainly continue to need all those lovely mood levelers.

Let us go on to side effects, dear readers. My little pamphlet says, "[Patients] may be confused for a brief time when they awaken from a treatment, and, while this may be upsetting, the confusion usually disappears within a few hours. Memory for recent events may be disturbed (amnesia), and dates, names of friends, public events, and telephone numbers and addresses may be diffricult to recall. Also, the ability to retain new information (learning) may be impaired during treatment. In most patients, the memory and learning difficulties resolve quickly and are gone within a week or two after completing treatment."

Pause with me and parse this, oh gentle reader. I'm a secretary. It's what I do. Let's pretend I accomplish the ablitity to rise from my bed in the morning. Like a good girl, I go to my little ECT treatments. Four treatments, two weeks of work. All fine and good, kinda, if all goes as planned. But if I come back to work with a difficulty in remembering names, public events, and telephone numbers that resolve in a week or two? Ah, there's a month of adequately productive work. But just a little later in my pretty little brochure, there's this hedge, "Although memory and the ability to learn typically return to normal a few weeks after ECT is over"..."Some people who received ECT have reported memory and learning problems that have persisted for months." Just how long is this few weeks, anyway? It appears to be as vague as my coupla, which under the right circumstances can go up to five. And here's the kicker. As adjunctive therapy, in addition to or even instead of anti-depressants, psychiatrists sometimes choose ongoing ECT for their patients. Sometimes once a month or so. SSI, here I come, will-she-nil-she. And no, I don't actually want to go on SSI, even though I do look like the laziest damn person you ever did see.

So, if ECT works, and it might work spectacularly well, in fact, it would set me right up right away. Magic pill in a little zappy machine. I am so totally there you have no idea. Dancin' my way right into heaven.

Welcome to Lydy Land III (TMI Re My Brain)

I admit, I'd totally been hoping that ECT would be the magic pill. I'm tired of all the time trying to figure out if I'm unhappy or being lazy. Also, I'm tired all the time of being unhappy, or being on the verge of being unhappy, or just coming out of being unhappy. Having no sense of shame, and having been born without modesty, I've been polling friends for information on ECT, if they know anyone who's had it, what they think about it, etc. I was at porphyria's baby shower last Saturday. One of her friends is a pediatric neurologist, who I know slightly and like more than that. When she heard me asking about ECT, she asked me if I had ever heard about VNS. Nope.

VNS stands for Vagus Nerve Stimulator. It's this queer thing rather like a pacemaker only different. They cut a little hole in your chest, and another in your neck, and wrap a wire around your left vagus nerve. The power supply fits into the incision in the chest. I think the wire is inserted in the other incision, wrapped around the nerve, and attached to the power supply. I'm not real clear on the whole geographical thing. It stimulates the nerve every so often, which in turn stimulates both the parasympathetic and limbic systems, and if I knew what those were, I'd be a wiser person today. They affect things that help control your mood and your neurotransmitters and for all I know your psychic presence on Alpha Centauri. One of the things they do very, very, very well is they control seizures. The other thing it has spectacular success with is depression. The device has been FDA approved for both uses since something like 1985. Safe as houses. Well understood, at least, as well as anything involving the brain can said to be well understood. Incredibly non-invasive. The pediatric neurologist I was talking to was excited about it. Entranced with it. It had committed miracles as far as she was concerned. She was so enthused that she unconsciously reached out and rested her hand on the place where the power generator would go and said, "Call. Let me write down the name of the nurse I work with. She's great."

I poked around the web site which was, of course, VNS for dummies. That's ok, I was a dummy. Some nice stuff, some useful stuff, some stuff I wouldn't bother telling a two year old. One of the most interesting things is that, although it is an adjunctive therapy like ECT, it may allow the doctor to wean the patient off drugs, or at least reduce the amount of drugs the patient is on, over time.

To my knowledge, no one has ever found any relationship between bi-polar and epilepsy or any other seizure disorders. However, most of the bi-polar disorder drugs were originally developed as seizure drugs. Now, let's have a review. The VNS is effective on depression and class? class? Let's not see the same hands all the time. Yes, you at the back. Epilepsy! Most mood levelers are also classes of anti-seizure drugs also known as anti-epileptic drugs. Very good.

I did call, on Monday. The nurse's name was Ellen Smith, and she was fun and smart. She referred me to her case manager, and I said that I would call her case manager on Tuesday. Tuesday -- I remember Tuesday, now. I didn't sleep through it, I only thought I did. I actually went to Pat's and did some work. I couldn't call because I was working. I don't remember when I went to bed. Wednesday I slept. Possibly because I was afraid to deal with the VNS. I don't know why I do things anymore. Thursday, I slept. Same song, second verse.
Friday, I got up. Very late. I forced myself to make the call. The nurse was discouraging, in that anyone who has graduated from nursing school really ought to be able to explain the limbic system better than, "Well, we did have this back in nursing school, but I really don't think I could explain it to you now..." She will, however, send me many DVDs and pieces of literature on pretty, shiny pieces of paper, and talk to my psychiatrist, and talk to my insurance company, SCREECH.

"What state do you live in?"

"Minnesota."

"Minnesota insurance companies don't approve VNS for depression. They only pay for it for epilepsy." Double heart beat. Sudden perky voice of despair, "We'll instantly appeal it, of course. We'll go with you as far as you want to go in the appeals process."

"You've done this in Minnesota before."

"Several times."

"Ever won?"

"Um, no."

"Right."

"What's rack rate on the procedure?"

"Huh?"

"What does it cost, start to end, out of pocket? Assume I have a rich uncle who just died."

"Oh," she said in an even more perkily apologetic voice than before. "Well, including everything, the device, the surgery, the follow-up, it'd be $25,000."

"Twenty-five thousand dollars?" I started to cry.

"Yes. I'm sorry."

Ok. It was looking like the magic pill. Two magic pills, one of which looks poison and one of which is a mirage all in a week is a bit much. I don't think that it entirely explains why I slept for two and a half days and have been crying for two, though. I think my new-ish anti-depressant isn't working.

I mean, I called up my mother and cried at her for a half an hour, and when she suggested I go home for a while, I actually considered it. I'm still considering it.


Meanwhile, anyone who hasn't heard Jonathan Coultan's Re Your Brain should go and listen to it right now. It is way funnier than Code Monkey and if I had any energy, I'd go find the URL, but I'm sure you can manage just fine.