MEMOIR: MEDS (Total Rewrite, All New)
Recently my doctor referred me for a sleep study. There was a lot of paperwork. Amongst all the paperwork was a request that I list all my medications.
Well, bugger. I had to go to some trouble for this. I am on quite a few medications, almost all of them new since my hospital experience last year. I had to get them all out, squint at the tiny print on labels, and copy details onto the form provided. It was quite a list. I think it came to eight or nine items, of which half are for psychiatric purposes. The others are for “you’re an old fart now” purposes.
This new regime works well, so well that my doctor (desperately grateful to have found a combination that works after the horror of last year’s medication change) is loath to change anything. I kind of want to change one thing. The main powerplant of my recovery from last year is a tricyclic antidepressant called Notriptyline. It’s not one of these fancy new high-tech drugs with a low side-effect profile and even makes coffee. I tried all of those drugs last year and they weren’t up to the job. The doctors told me I had “treatment-resistant depression”. They needed a nuclear weapon, and Nortriptyline is that.
The problem, though, is that it makes patients stack on weight. Two of its major side-effects are weight-gain and increased appetite. And since December 2012 I’ve been on a huge weight-loss campaign, and managed to lose fifty kilograms. I was keen to preserve and extend that if I could. But could I do it on Nortriptyline?
The answer is yes, but only just. It’s extraordinarily difficult, and requires a great deal of work on my part. It’s exhausting. I would like it to be less hard. But my doctor sees that my recovery is going really well. Look at all this writing I’m doing! Look at all the exercise I’m getting! I’m functioning at a very high level, higher than possibly at any time before in my life. Isn’t that great? Isn’t it?
It is, but at what cost? is what I want to say.
Welcome to the world of psychiatric medication. Where everything is a trade-off between function and side-effects. You want to be able to live your life, do your job, look after your family, maybe even enjoy yourself a bit, without finding yourself tangled up in a sticky web of nasty side-effects that make your life worse than the condition the meds are supposed to treat.
Last year, every time the doctors proposed a new medication for me (and there were many, many medications) there was a fact-sheet about it for me to inspect, and amongst all the facts and figures there was always a discussion of common, less-common, and rare side-effects that had cropped up during testing and trials, some of them guaranteed to be terrifying. So right away you’re thinking about trade-offs and compromises. You might get at least some of your life back, but at the cost of some other part of your life. Take your pick. And be aware that any given drug will only tend to work on about fifty percent of patients who receive it anyway.
Such as me and the great hope that was Zyban. When I went into the hospital last May for what I’d been led to believe would be a quick transition from the drugs I’d been on (for about thirty years, more than half my life) over to a sleek new powerful drug, I’d been on an antidepressant called Clomipramine (another of the tricyclics, in the same chemical family as the Nortriptyline I’m on now). It seemed no longer effective. I’d been very ill for a long time.
Almost right away once installed in the hospital the staff started reducing my Clomipramine dose, doing it over several days. This created some emotional turbulence with withdrawal symptoms, which they moderated with tranquilisers, which helped a bit. In time, though, it was time to start on the Zyban. The doctors had talked this up. It was new and exciting. It was an Italian supercar of a drug. Its biochemistry was amazing. It did so many clever and subtle things at once, it was like nothing else. I was going to love it. It sounded fantastic. And I was already feeling sufficiently unglued and stressed out, heading for a full depressive crash, that I would have tried anything if I believed it would help.
The night I had my last Clomipramine was a special occasion. I’d been on that stuff since about 1986. About the same time I was getting together with Michelle. I’d left university just the previous year. The Space Shuttle was still flying. I was in my twenties. I saw the last Clomipramine tablet in the little plastic cup, and wished I’d had my iPad with me so I could take a photo of that last tablet. It was lights out for a huge phase of my life. Every night for thirty years I’d swallowed ten of these little bastards, and while they’d done an okay job of moderating the worst of my depressive cycles, they had side-effects I wouldn’t wish on my worst enemies.
I started the Zyban, and within a couple of days felt pretty decent, even fine. I thought, this can’t be the new drug already, can it? Some drugs come on very quickly, I was told. So who knows? I thought, all chuffed.
That weekend I went to a writers’ group meeting at Edith Cowan University in Mount Lawley. Right away, as soon as I arrived, I was feeling brittle, antsy, irritated, aware of noises, some in particular. Every chair I sat on seemed made of broken glass and spikes. Wherever I sat it wasn’t quiet enough. There were people talking and eating, and wandering about the stacks. I kept having to change desks, trying to find a quiet spot, and I couldn’t believe there was this much noise in a library, especially a university library.
I ended up sitting in the lobby of the library, heaving with tears from the stress of a few people talking and eating and walking around. Michelle came and got me. Two dear friends stayed with me while I waited for her. On the way home I felt hollowed out, raw inside, undone and broken.
Back in hospital after weekend leave, feeling like a failure again, I saw my doctor, and told him about my experience. He concluded the Zyban, far from kicking in early and being great, was in fact having no clinical effect whatever. I was not in that lucky fifty percent who felt the Italian supercar thrill of the fabulous drug.
But this meant that I had no effective defense against depression. For the first time since my breakdown when I was sixteen, I was alone and naked far out at sea.
People get concerned about taking medication for psychiatric conditions in a way they don’t get concerned about taking, for example, painkillers for a headache, or cold and flu tablets when they’re under the weather. I think they worry that the psychiatric medication is going to profoundly alter their personality, their sense of who they are. And to some extent, with some medications that can happen to some extent.
I’ve never worried about that. I’ve always seen medication as a corrective to a distortion caused by the illness. As something like using corrective lenses to fix bad eyesight. Taking the right medication, for me, has enabled me to feel more like myself than less like myself. When the stuff works well, and these past few months my medication has worked extremely well, it feels even like I’ve had an upgraded to a higher, better version of myself. I feel like I can think more clearly, more creatively, and certainly more productively, than I ever could before. I tend to think of my former medication regime as like a nasty, dirty, noisy diesel engine, spewing out soot, rattling and banging, compared with the silent, efficient molten salt solar tower I’m using now. It’s as transformative as that.
And yet, I have encountered creative people who say that medication stops them feeling creative, or otherwise interferes with their artistic selves somehow. I’m never sure what to make of these claims. I can’t get inside their heads. I don’t know what else is going on in their lives that might be contributing to a crisis in their creative life. If everything was okay they wouldn’t have doctors prescribing medication. But it is possible the specific medications and the specific brains involved simply don’t work together. What should an artist or writer do?
My own feeling is that they should get the help they need that lets them work and function as normal as possible. If one sort of medication isn’t working, try others–there’s loads out there to try. And not only medication: these days there are non-medication treatment options (transcranial magnetic stimulation, for example, or even ECT), and the “talking cure”, meeting with a psychologist or counsellor to talk over your troubles can be very effective, too. The point of treatment is to help you get your life back. A life you can live with, that lets you do your thing. That lets you thrive.
Admittedly, this is a relatively new thing. In the years after my diagnosis, the Years of Hell, after I left D20, and tried to get used to my new existence, it was hard. I and every psychiatric patient I knew walked around looking like we’d all just escaped from a car accident. We all looked stunned, shocked, confused, kind of angry and nervous. We were hesitant and shaky. The blunt instrument medications we were on then were no Italian supercars. They were East German Trabants by comparison, belching out foul exhaust and barely functional. We were, as a group, either really fat and sluggish and prone to shaky-handed, sad-eyed smoking, or nervy, edgy, jittery and thin to the point of emaciation, and also inclined to smoke. We were on such heavy-duty medication we could barely function, let alone embrace the artistic, creative life. It was all some of us could do to make a cup of tea.
Medication has improved greatly. The Italian supercar drugs work a treat for the people who notice them. The non-medication treatments work well, too. I tried the transcranial magnetic stimulation last year, but I was in no condition to go through it. I couldn’t lie still in the chair, and the sound was, for me, at the time, intolerable. This was during my second hospitalisation, which while not as hard as the first one, still brought plenty of torment my way.
It took me a very long time, during those Years of Hell, to get used to the idea of taking medication every day, and to take so much of it each day. When I was eighteen I was taking about ten or twelve different pills each night. They all did something important. But it was hard to remember to keep taking them. With other things, like a course of antibiotics, you’re lucky if you can remember to take all of those, and that’ only two weeks, but this was every night forever. It did my head in, that forever. That I would never be well, not properly. I would always, as I came to see it, walk with a limp that only I noticed, but which I always noticed.
What helped in the end was coming to see the illness as no different from something like diabetes. When I found out what diabetes patients go through day to day, and across their whole lives, it resonated with me, and helped me very much. I could see my own chronic illness in context with another chronic illness. It helped to diffuse some of what at the time was still a heavy and suffocating stigma surrounding anything to do with mental illness. Nobody talked about it, but some people, once in a great while, simply disappeared, or died “and police report there were no suspicious circumstances”. It took me a long time to understand this bit of code.
Another thing that caused me problems when it came to taking medication as a teenager was my dad, who was generally against medication for anything, and would wheel out the old chestnut, “pills for dills with aches and ills”, which was to say, only an idiot takes pills. The rest of us are too smart for that. And he would use that to justify not taking anything for himself, and that undermined my own efforts to keep at it.
The most serious problem I had, as a bipolar patient, with psychiatric medication was this: when on a manic cycle you feel so ridiculously great, at least at first, for a while, maybe at least a few days to a week, that it’s like your whole brain has gone somewhere nice on holiday and is lying by a pool sipping cocktails and wearing sunglasses. You feel crazy-good, and you’re obviously not remotely sick, can’t you tell?
When you feel so fantastically upbeat, so cheerful, full of mad energy, hardly needing to sleep or eat, the last thing you want to do is take stupid pills. And yet that’s exactly when you need to take them. I have had the conversation with my mum where she tells me the fact I feel so fine only proves how sick I really am.
I am most likely stuck with the Nortriptyline, simply because it’s doing it’s job so very well. I am having depressive spells, but they are not so severe they are interfering in any serious way with what I want to do each day. The weight issue is a very urgent concern, so I imagine we’ll look at options there. A month or so ago my doctor started me on Topamax, an anti-anxiety drug that, unbelievably, has a weight-loss side-effect. To the extent that it’s prescribed off-label in the US in diet clinics. He might increase my dose of that and see what happens.
This is life on psychiatric medication. There’s always some damn thing to deal with, consider, weigh up, discuss. It’s exhausting just trying to achieve the normality most people take for granted and never notice.