Bipolar 2 From Inside and Out

Posts tagged ‘drug side effects’

Abilify: News or Not

I’ve been taking Abilify for several days now. Is it working? It’s hard to say.

I’m pleased to report that I haven’t had any side effects I can’t handle. In fact, I don’t know whether I’ve had any side effects at all. I’ve had a tiny bit of dizziness and some drowsiness. But I have those anyway, either from my other meds or from other physical conditions.

On the positive side, I’ve had a bit of an increase in energy and concentration – as you could probably tell from the fact that I’m blogging again. But is this attributable to the new drug, or is it just the usual up cycle of my own personal roller coaster?

It’s probably too soon to expect anything definitive. Like most psychotropics, it probably needs to build up in my system a bit. Or I may just be one of those people Abilify doesn’t affect, for good or ill.

I recently read an article in Discover magazine called “The Power of Single-Person Medical Expepriments.” The article discussed the fact that the usual clinical studies of new drugs and treatments – randomized, double-blinded, hundreds or thousands of participants (the “gold standard” of tests and trials) – give results that are only averages. The techniques will work for some people and not for others. Some experimental subjects will experience side effects to varying degrees. Or not.

The only way to see whether a given treatment works for an individual is for that person to try it. The odds may say it has a better-than-50% chance of working, but until the patient tries it, whether it will work for that one individual is basically a crap-shoot.

I think this may be particularly true of psychotropics. Every time I’ve asked how this or that med works, the answer has been, “We don’t really know.” Factor in the number of different meds I’m on, psychotropic and otherwise, and their potential for interactions with each other, and any new treatment’s effectiveness is likely a matter of trial and error.

I’ve certainly gone through a long, tedious, disappointing (or unpleasant) series of weaning off and ramping up different meds in hopes of mixing just the right cocktail for my particular brain.

I think that’s why they call it “practicing” medicine.

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Mental Health

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Dear Folks: Sorry I Haven’t Written Lately

This has been the longest trough I’ve had in a while, and I’ve been spending all my spoons on work, because the cats do insist on eating.

Tomorrow begins a new adventure: My psychiatrist has prescribed Abilify. The $800/month price tag seemed a tad bit high to me. We have insurance, but the benefits don’t really kick in until we meet the absurdly high deductible. A few months of Abilify would probably do it. (We couldn’t afford the gold plan. I think ours is aluminum, or maybe tin.)

The manufacturer does offer a free month’s trial and a discount card, so at least I can see if it works for me. If it does, I’ll figure out how to pay for more. (BTW, if your meds are way expensive, check out needymeds.org. They have a database of manufacturers, discounts, requirements, and contacts. My psychotherapist turned me to that.)

When Dr. R. prescribed Abilify, he told me that it could make me restless. “How will I know whether it’s the drug or my usual twitchiness?” I asked. “You’ll know,” he said. After reading the literature, I can see what he means.

So here I am with three work assignments (not particularly tight deadlines, though) and am about to start a drug that could feel either heaven-sent or hellish. Or just “meh,” I suppose, which would leave me exactly where I am now.

Wish me luck.

And tell me if you’ve had any experiences with Abilify. I know anecdotal evidence doesn’t mean squat to scientists, but I’m interested in hearing from people who have tried it, or seen how it worked (or didn’t) for a friend or relative.

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Mental Health, Uncategorized

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The Un-Merry-Go-Round

I submitted this for a mental health anthology and swore that if it wasn’t selected, I would post it here. It wasn’t. so here it is.

 

Back when I was diagnosed with depression (unipolar) and anxiety, I secretly envied the manic-depressives (as we called them then). At least if I had a manic phase, I thought, I could get something done.

 

Then I met Kate, who was bipolar – and not well controlled on medication, to say the least. My envy lasted through her ambitious plans to make identical green velvet Christmas dresses for her three daughters. And vanished when I saw her tear them apart, recut them, start over, change her mind multiple times. You can write the ending to this one. There were no dresses, not by Christmas and not ever.

 

Kate was riding the roller coaster – perhaps the most common metaphor for bipolar disorder – the peaks and troughs, swooping crashes, anticipatory climbs, stomach-clenching vertigo, and, for some, an abrupt stop at the end.

 

Type 2 bipolar is not like that. Type 2 is what my new psychiatrist diagnosed. Except I seldom got the hypomanic mini-jags of ambition and purpose. Instead, it came out sideways, as anxiety.

 

The challenge for both my doctor and me was finding the right mix of drugs to get me functional and keep me functional, at least at some sort of reasonable level.

 

While supposedly unipolar, I had been through most of the different sorts of antidepressants and anti-anxiety meds, including, of course, Prozac. When the increasing side effects of each outweighed the diminishing relief, I went through a lengthening list of tricyclics, SSRIs, and so forth. I learned not to ask, “How do they work?” I couldn’t get an answer. The more basic question was, “Do they work?”

 

I can’t remember all the combinations now. My memory has become Swiss cheese after the spectrum of chemicals I tried. (Actual conversation: “Doctor, I’ve been having some rather embarrassing memory lapses. I asked a friend how her father was doing, when he had been dead for three months.” “Yes, that medication will do that. Stop taking it.”) But in addition to (instead of?) the Prozac, I remember buspirone, Wellbutrin, imipramine. Desyrel, Lexapro? I think so. Effexor, Sinequan? Maybe. No MAOIs or lithium, though.

 

What I do remember all too well is when my brain broke. I don’t know what else to call it: nervous breakdown, decompensating, mental and emotional collapse. It wasn’t the first time this had happened, I later realized, but it was by far the most severe. That’s when I climbed on the merry-go-round.

 

It wasn’t a carousel. No painted ponies or dolphins or elephants or zebras with fantastical, bright bridles of flowers and whimsical saddles, steadily but gently leaping to the calliope music like the calming rhythm of waves.

 

This was a merry-go-round of the type that is no longer allowed on playgrounds because of the danger. A wooden platform, painted a color no longer identifiable, a metal pole speared through the center. Bent metal pipes dividing the surface into rough pie-wedges. No power to make it twirl but the force of children pushing and then jumping on, not to thrilling acceleration, but only to inevitable slowing. No lilting music; only creaks and rattles. No scents of popcorn and cotton candy; only playground dust and much-used sneakers.

 

The metaphoric merry-go-round would start rotating with each new pill or combo that promised (or at least proffered) “Better Living Through Chemistry.” I couldn’t handle the side effects of some – hideously vivid nightmares or the feeling of wanting to jump out of my skin. Others had side effects that I could live with, but little or no therapeutic effect. “There’s another drug I’d like to try” was the constant refrain.

 

The merry-go-round creaked on for years. Literally. With each new med, I had six weeks or so of slowly sliding back into the numbness and misery as my body sloughed off that chemical. Then six or so more weeks, waiting for the new one to work or not, prove tolerable or not, be any better than the last drug or not. Each new drug cycle amounted to a minimum of three months of hell. More, sometimes, as the doctor slowly, cautiously ramped up the dosage to gauge the effects, both intended and incidental. Lather, rinse, repeat.

 

Those years are mostly a blur to me now. I remember sleeping a lot. I remember sitting on the sofa watching “reality” shows so I could see people whose lives were train wrecks worse than mine. I recall not having the wherewithal to add water and nuke a cup of macaroni and cheese. Not bathing. Not feeding the pets. Not paying bills. Not reading. Not caring.

 

I know now how lucky I was to have a husband who lived the vow about “in sickness and in health” and took up the enormous quantity of slack required. He put up with a distant, unresponsive wife; frequent and apparently unprovoked bouts of sobbing; irrational panics; and all the other symptoms he knew by then he couldn’t fix. He didn’t know about the suicidal thoughts, or if he suspected, he never mentioned it. He often asked how he could help, but really, there was nothing else he could do.

 

Then came the day that my psychiatrist said we were just about out of options. He was thinking of recommending electroshock (or ECT, electroconvulsive therapy, its current version). As he talked about how it wasn’t like the bad old days and really showed quite good results in some people, his voice seemed to fade and I heard my inner voice screaming, “Fuck, NO! Keep away from my brain, you Nazi sadist!”

 

I had heard how in the 1950s electroshock was used as a way to punish or control unruly, uncooperative, nonconforming women. And of course everyone knew about the Cuckoo’s Nest. The Snake Pit. As far as I was concerned, electroshock was right up (or down) there with icepick lobotomy, the frighteningly efficient epitome of former psychiatric treatments.

 

Reeling, I made it to my car and immediately called a friend, a scientist, one of the most rational people I know, to talk me down. Her extremely sensible advice was to do some research. Research was something I knew about and remembered how to do.

 

I started digging. The Internet was little help. The opinions and experiences of people who had undergone electroshock ranged from “It was hideous” to “It was a miracle.” I kept looking and questioning and slogging through the research as well as the dense fog around me. I lost one friend, my long-time go-to guy for comparing our conditions and our meds, who said, “Do it immediately or I will kick your ass.” (Hint: Advice phrased as a threat of violence doesn’t help, or have the desired effect.)

 

So there I was, on a merry-go-round that had jolted to a sudden, sickening stop by the notion of electrical jolts surging through my brain. My precious brain, which had both sustained me and betrayed me throughout my life. The only part of my body I ever really loved.

 

What was I doing, considering altering that unique organ with electricity? But the brain in question kept pondering.

 

Electroshock caused memory lapses. I was already having those.

 

I would be allowing doctors to tinker with and alter the functioning – perhaps even the structure – of my brain. But really, hadn’t I been doing those very things with chemicals for years?

 

I went back to my psychiatrist, ready to tell him I was at least willing to talk to the doctor who did the shocking.

 

Then I got a surprise (at least as much as anything repeated for years can be a surprise). “There’s one more drug I’d like to try,” he said. “Lamictal. It’s an anti-seizure drug.”

 

“I don’t have seizures. How does it work?”

 

“We don’t really know.”

 

Oh, why the hell not try it? One more spin around the playground.

 

More misery. More weeks of weaning off and ramping up. More weeks of no change. The same-old same-old.

 

And then one day, something did change. It was such a clear sensation, physical as well as mental. I felt a sudden click in my head – an actual click, like someone throwing a switch located about two inches inside the back of my skull. I could hear my brain saying, “Oh, yeah. I remember this. This is how thinking and feeling are supposed to work.”

 

The click wasn’t a flick from a magic wand. I still had a long way to go, rebuilding the parts of me that I still could and still wanted to. Setbacks. More fiddling with the dosages. The creation of a crazy cocktail of drugs to keep the crazy at bay. But I was on my way back to functioning, with the help of anti-depressant, anti-anxiety, and anti-seizure drugs, plus a sleeping aid. And lots and lots of psychotherapy.

 

So what did I learn from this process? Not “There’s always hope.” I gave up hope lots of times, every time another med didn’t work. Not “Desperate times call for desperate measures.” I am infinitely glad I did not have electroshock. “It’s always darkest before the dawn”? Please. No truly depressed person believes that crap.

 

The lesson I took was “Stubbornness is a virtue.”  It saved our marriage countless times. It saved my father’s life for five times longer than the doctors gave him. And it saved my sanity.

 

“Stubbornness is a virtue” is different from “There’s always hope.” Even when you do give up hope, when you know it’s hopeless, when you realize the merry-go-round is grinding to its inevitable halt, you keep pushing it. Hopelessly, if you must, but stubbornly. As long as it takes.

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Mental Health

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My Brain, My Books

It used to be that I could never be found without a book within arm’s reach. I had a purse book, a nightstand book, a bathroom book, and a car book at the very least. (I kept them straight by having a different genre in each location.)

Now that I have a Nook e-reader, I have hundreds of books with me everywhere I go. But I’m doing a lot less reading.

I think it’s a function of my lack of concentration, but whether that’s the disorder or the meds, I couldn’t say.

I do know that when I was in the depths of my most recent breakdown, I barely read at all. I watched moronic reality shows like Trading Spouses, on the theory that these people’s lives were bigger train-wrecks than mine. And I watched cooking shows, because they were calming. (This was before cooking game shows really got going.)

During an earlier meltdown, I tried to watch sitcoms, but the relentlessly upbeat theme songs made me weep.

Now I have to hoard my concentration like I hoard my spoons. I am fortunate enough to be able to work freelance from home. But it’s the kind of work that sometimes has deadlines. On days when I can force myself to work, I can concentrate for about 2-1/2 to three hours at a spell. Some days I have to do two sessions like that with a nap in between, if a deadline is approaching too rapidly.

But when it comes to non-work activities, I can usually only concentrate for an hour at the most. Sometimes I try really hard so that I can watch a movie, but mostly I stick to half-hour or hour-long shows.

But reading takes concentration too, especially if the book has a plot (which I recommend) or is information-rich nonfiction. I do a lot of my reading in bed at night. (Yes, I know you’re not supposed to do that because it keeps you from falling asleep. But it’s a life-long habit.)

My mind flitters, the hamsters and sometimes the badgers stir, and I find myself several pages along with no idea what happened. At that point my need for distraction and my attention span collide and I have to find something moderately absorbing but short-term to do. It’s a good thing I have some games on my reader so I can play a hand of rummy or work a sudoku puzzle.

Reading has been one of the great joys of my life, since I was four, and it bothers me that I no longer have the ability to immerse myself in it the way I used to.

But, like so many other things, it’s something I’m having to learn to live with.

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Mental Health

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Saving Face, or You Can Die From That?

Once when my psychiatrist was changing my medication (again), he warned me about the possible side effects. I know that doctors don’t often do this, because they are afraid that the patient will imagine that all the side effects have indeed appeared. So when he wanted to talk about side effects, I perked up my little ears and listened.

“If you notice a rash starting, stop the drug immediately,” Dr. R. said. “It could be fatal.”

I had never heard of a fatal skin rash before. I had no idea that a skin rash could be fatal.

“Don’t look at pictures on the Internet,” he said. “It’s really gross.”

Terrific. I might be getting a really gross, possibly fatal skin rash. I probably should have asked for an increased dosage on the anxiety meds.

Of course I looked it up as soon as I got home. (I did try to avoid pictures, though, even though they might help me tell the difference between heat rash and the deadly one.)

The condition is called Stevens-Johnson Syndrome and apparently the rash is just the beginning. It’s possible for your skin to fall off, starting with your face. That’s probably the fatal part, as I imagine you’d be prone to infections, plus your insides would now be your outsides. And yes, that would be really gross.

I enlisted my husband’s help. “If you notice my skin starting to shred, or see a big piece of it lying on the floor, do let me know,” I requested. “Maybe pick it up and save it.” Then we debated the merits of duct tape vs. Gorilla Glue for reattaching it.

That was a few years ago. I am still taking the medication and I still have an adequate supply of skin. Now there are commercials on TV for various drugs, and they list the side effects. (I’m sure you’ve noticed that they are often worse than the condition they’re prescribed for.) I always get a little nostalgic when they list “fatal skin rash” among the possibilities. And just a teensy bit smug because I know what they mean.

The commercials could be fatal too, though. I might die laughing if the next ad was one for Gorilla Glue.

P.S. I apologize sincerely to anyone reading this who has, or knows someone who has, Stevens-Johnson Syndrome and does not appreciate my attitude.

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Mental Health

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