I’m going to stop taking my psychiatric medication.
Don’t worry. This isn’t a rushed decision. It won’t be a rushed withdrawal either. I’ve thought about this hard for a couple of months and will be gradually reducing the dose with the help of a doctor.
Before I explain, here’s an article from New Scientist in 2016. I found it after typing the post while looking for confirmation that nearly one in ten adults in the UK is currently taking an antidepressant – and that proportion is steadily growing. Read the article. It’s not very long. My reading has been interesting in the couple of days since typing this post. It’s included, among many other things, Joanna Moncrieff on antidepressants, Sammi Timini on diagnoses, Asylum magazine, the Mad in America site, a book written by a psychiatrist on the history, sociology and theories of antidepressants, and at one point a long article on the extermination of people with schizophrenia by the Nazis. Nothing I’m reading is changing my decision. Then again, like most people, much of my reading has been very selective.
In 2009 or 2010 I’d hit a low point. I was sinking fast and was getting quite desperate about how deep a depression I was falling into. Looking back I can see there were life and faith reasons for the depression rather than putting the blame on serotonin reuptake mechanisms. [A dodgy theory.] In my previous deep depression period I’d found something to take that helped me greatly – kava kava. Unfortunately in the interim the European Union had decided to ban kava because of health concerns that were raised. My cynical view is that they had found some people taking kava also exhibited liver damage but that those people mostly happened to be in the “heavy drinker” category and their alcohol consumption was ignored in an effort to blame and ban kava. I thought it very unfair. I could and still can go and buy tobacco products if I want, with full knowledge that it causes lots of different diseases that can kill you. But not kava. It was even more unfair because my doctor was giving me regular blood tests when I took kava and my liver function remained perfect.
So in 2009/10 I didn’t have kava to call on – or so I thought. I was scared I wouldn’t pull out of this major depressive episode and, in that fear, took myself to the doctor to ask for an antidepressant. That took a lot of doing. I’d taken eight different antidepressants before. None of them worked. Most of them screwed me up totally with varied ranges of side effects. I swore to myself never to take another.
Asking for a ninth pill shows how worried I was. Nevertheless, I asked. After hunting through the BNF for a promising drug I’d never taken the doctor settled on fluvoxamine – not to be confused with fluoxetine, Prozac. Side effects were meant to be low. The cost was high though and the doctor said she’d have to argue with the practice manager about finances.
I started on a course of fluvoxamine and was happy to find that I wasn’t affected by too many side effects. This was doable. Did my low lift as lows are prone to do if left alone and not medicalised? Probably. Did the drug help? Possibly. Everything was going swimmingly.
Until I started to feel ill. Physically ill. More and more ill. I went back to the doctor and she put me through another see of full blood tests. The results were not pleasing. My liver function was way off, with results that almost went off the scale. That’s right, a banned substance that didn’t harm my liver was replaced by a prescribed substance that did. The doctor was worried, which was understandable because the figures on those tests showed that I was very close to total liver failure at which point I’d be needing a transplant. She instructed me to come off the fluvoxamine. Immediately. Without tapering the dose, for the sake of my liver.
I obeyed. The withdrawal side effects were appalling. They were also very frightening and were it not for being able to hunt out support groups online I’d have taken myself to casualty. One example: Imagine the sensation of getting a sizable electric shock passing through your brain every few seconds. I had that. The online groups told me I wasn’t alone in experiencing these “brain zaps”. They told me I wasn’t going to die, wasn’t going to be permanently damaged, and that the zaps would eventually stop. They told me I’d just have to put up with it. The zaps did stop. After many months. And my liver function returned with every blood reading being bang on dead central in the normal range.
I swore to myself, again, never to take another psychiatric medication. And I didn’t. For five years.
In 2015 I had to come to terms with something I’d been denying for many years – that I’m autistic. I found that peculiarly difficult as I put the spotlight on how it affected every area of my life. There were other things going on too and I was in the middle of losing my Christian faith that had been the centre of my life, my purpose, my meaning, and my community for so long.
I was struggling again and became convinced to go to the doctor and ask for some help. Psychological help initially to get over a short term crisis but then I agreed with others that a medication might help too. Not an antidepressant preferably, but something to help with anxiety levels. [Were those levels in part increased through learning that autistic people often struggle with anxiety and then subconsciously and unintentionally adopting elements of that “trait”? Not entirely but I suspect that was a factor.]
That was two and a half years ago. I am happy to report that I have an initial appointment with some kind of psychologist next month. Yes, it’s taken that long. Apparently being autistic is a good reason to repeatedly deny you help and reject medical referrals. It must be a good reason, it’s happened to me quite a few times. It’s happened to others too. The process has been very frustrating.
I agreed with the doctor to try a low dose of trazodone for my anxiety. It seemed to help. But the anxiety got worse again. So we increased the dose. But the anxiety got worse again. I ended up self medicating. First I tried quetiapine to see if that helped. I hated it. Then I tried pregabalin, believing that there had been studies done that showed it often worked well for autistic people. Pregabalin took away much anxiety. So I fought for it to be prescribed and continued fighting until I had that prescription. The agreement came through my one and only recent appointment with the Community Mental Health Team (CMHT). They gave me my medication but announced that any future help or psychiatric or psychological support should come through the autism services of the local NHS.
And that’s a giant pile of bullshit.
Our local adult autism service is purely a diagnostic service. They can offer no support whatsoever post-diagnosis. I tried to explain that to CMHT but they wouldn’t listen. Apparently they’re the experts and I should listen to them. That’s what I was told in that appointment. Since then CMHT has rejected at least three, I think more, referrals for me on the grounds that (a) I’m autistic and autism services should deal with me, and (b) they’ve already assessed me and come to that conclusion. Basically the mental health services have repeatedly failed me because I’m autistic. The mental health services often fail autistic people. Then again they often fail neurotypical people too due in part to lack of funding by successive governments of every party.
So I was prescribed my pregabalin in addition to the trazodone. But the anxiety returned again. I was slowly sinking. By the end of March 2017 I was well on the trajectory that led to a period of possibly the worst mental health I’ve ever had, a time that made those around me afraid and which made me more afraid for myself than I had ever been. I got the doctor to double the pregabalin dose. But the anxiety – and other symptoms – increased again. The doctor agreed that whenever I felt the need I should take extra pregabalin on top of the prescription.
So there I was last autumn. Near death. Phoning the mental health crisis team regularly, not that they were of any use to me at all. Having more referrals turned down. I am actually surprised but glad to have survived the autumn.
I had gone to the doctor more than two years previously to get some help with a short term crisis, a crisis that was long since over. In that time, one small dose of a drug had increased to larger doses of two drugs. And I was worse than ever. In addition, I still feel side effects from the medication every day. I don’t feel fully myself. My appetite is too high and pregabalin isn’t good for weight gain anyway. My jaw often feels very strange and numb. But it’s the muddiness and fogginess in my head that’s the main concern.
For the past four months I’ve been clawing my way back to life and throwing myself into more and more things, some of which I’d never dreamed of doing. I’m proud of how I’ve turned from being close to death to having the life I’ve lived this month and having some great plans for next month too. I place the start of my recovery at December 3rd. I’d felt awful that day but something clicked in me. I thought, “Fuck it!” and took myself out for a walk. It was a clear night and the moon was full so I walked to the river, crossed the Millennium Bridge, wandered through the Sage and came back across Tyne Bridge. The next day I was determined again. I took myself to the local Buddhist centre for the first (and so far only!) time and then went to sing Sheffield Carols for the first (but not only) time. The following evening was worse. I spent an hour at the top of my stairs unable to descend because of the hallucination waiting for me at the bottom. And when I did get down I said a final goodbye to someone who had been my closest friend, and had been much more than a friend for quite a while. Since then – with various blips – I’ve been pushing myself to live and to begin to develop a life far better than anything I’ve had before. It’s bloody hard work.
So here I am at the end of March 2018. Living that life more and more. And still drugged many times more than I was when getting over a nearly three-year old crisis period. Still having side effects. And having gone through, while drugged, the most critical, most suicidal mental health period of my life.
I’ve thought about this for two months, weighing everything up. Yesterday I reached a completely firm resolution: I need to get off these medications for the sake of my life. They aren’t doing what they’re meant to. The reason I was taking them doesn’t even exist now. And there are still unwanted side effects.
Unfortunately I am dependent on them. I am an addict. I’ve tried an experiment in the last couple of months. Twice. Each time I missed one tablet out of a single dose of medication for one day. And then repeated it for a second day. After the first day I could feel the difference. After the second I was not coping well at all. I am experiencing one of the traps of lots of psychiatric medicine. Once on them, you’re dependent and can’t come off them without a struggle. It means that whatever I do I’ve got withdrawal symptoms to look forward to. I’ve potentially got sizable mental health struggles too, not because I need the drugs but because they’ve changed my brain chemistry and now my brain chemistry is going to have to adjust itself to not having artificially added chemicals doing the job it can do for itself once it learns how again.
Getting off the medication may be hard. But I’m going to take it slowly and I’m going to do it with the help of a doctor. If I was rich I’d be tempted to check myself into a drug dependency clinic and just come off my meds cold turkey and put up with feeling shit for a while in a safe environment. But in normal life – and a life I’m looking to keep improving – that’s probably not a realistic option. I’m going to be gentle with myself. And I’m going to medicalise my head less – but that’s another topic.
So this week I am seeing my doctor.
I won’t ask if I should come off the pills. I’ll tell her. And ask for help doing it safely.
I’m stopping taking my psychiatric medication.
But don’t worry. It’s for my own good.