Medication: being on it and coming off

Since my breakdown at 17, I have been almost constantly on some form of anti-depressant and/or anti-anxiety medication. The only times I wasn’t taking a medication were because I had, without medical recommendation, decided that I just wasn’t taking it anymore. Or for much shorter times, because I had screwed up or couldn’t afford the prescription.

So the idea of coming off my medication was pretty overwhelming. But, for the past two years, that’s just what I’ve been doing – slowly. We don’t talk a lot about what the experience of coming off mental health medication is like, so today I’d like to do just that.

First, let’s talk about how I got here.

I’m currently on Mirtazapine, but I haven’t been for all of those years. I’ve been on several others – Citalopram, Escitalopram, Sertraline are the ones I remember. Many of these worked, but gave me terrible side effects that meant they might as well not be working. 

Some of them smoothed out my emotions so much that I basically didn’t feel any. Some of them calmed me down to the point that I was nothing but calm, but still aware that everything was terrible, just unable to feel it. Others just made me nauseous.

But eventually, several years ago now, a doctor recommended that I try Mirtazapine. And I haven’t changed medication since. Oh, it still gives me side-effects – but for a long time, they were irrelevant ones. Because what happens is it makes me drowsy. Really drowsy.

I take it at night. When I wake up in the morning, it’s like waking from the deepest stage of sleep. Groggy and disoriented, regardless of how much sleep I’ve had. I can have too much or too little sleep and I’ll still be a zombie when I wake up. This was fine at first, but now it’s crippling.

So almost two years ago I started to reduce it.

Now at that point, my goal wasn’t necessarily to come off it entirely. For all of those years on Mirtazapine, whenever I’d had a medication review, my doctors had said something to the effect of: “Mmm, we don’t really like to keep people on this medication for this long.”

They never strictly told me to reduce it, but there was always that reminder that I shouldn’t be on it forever. It wasn’t badly meant, and I don’t think it was born of a ‘you should get to a point where you don’t need this’ philosophy, (which I don’t think is always possible for everyone). But it was always there.

As it happened I eventually reached the point where I wanted to at least reduce. I was on the maximum dose, so there was a long way to go. I spoke to my doctor who was delighted that I felt ready to reduce it, gave me a prescription for the lower dose and told me to alternate them.

It’s not that simple though. Because I had no way of knowing I was ready.

Perhaps one of the worst things about mental health recovery is attempting to measure it. It’s incredibly hard to do so. Even if you’re taking tests on a weekly basis to measure your depression and anxiety levels (I think anyone who’s been to a mental health professional in the UK will know the form I mean), there’s still deviation.

So when I say I wanted to reduce my medication, that’s really all I mean. I don’t mean that ‘I knew I was ready‘, because I didn’t. I mean that ‘my side-effects had started to annoy me more than my symptoms‘. The depression and anxiety I knew how to cope with. Being unable to get up on time because I felt so awful? That was harder to push through.

I still, even now, where I’m starting to actually come off the medication entirely, don’t know if I’m ready. I’ll talk about that more in a bit, but something I really want you to understand is that it’s a gamble. And for many people, it’s a gamble at a time where you’re still a bit fragile – it’s a big risk.

This is why you should always, always do this with a doctor’s support. In the past I had just stopped taking other medications and the resulting withdrawal absolutely obliterated me. I learned the hard way that you can’t just stop. Even trying to alternate myself at one point didn’t work. Just…don’t do it without a doctor, please. It’s already enough of a risk.

But it was a risk I took, and it paid off…eventually.

According to my doctor, my medication takes about two weeks to actually leave my system. Which means my alternation-of-dosages method wasn’t really going to show any effect for a while. When I first started it, we expected it to take a few months for any effect (good or bad) to show.

And…several months passed. There wasn’t really any change. I stayed at the middle dosage for a while, and didn’t notice waking up get much better or my depression and anxiety being worse. Which on reflection was a huge win in itself, but at the time I was just so frustrated that nothing had happened.

Oh, and just to make it more difficult for myself, I reduced it over the Christmas period. For the record, my doctor suggested this wasn’t the best idea. I stubbornly ignored him because I wanted to be able to wake up.

And then after a few months I stepped down again. I stayed there to make sure I had stabilised, and then I went from the middle dose to the lowest by the same method – full dose one day, half dose the next. At this point I did start to notice an improvement in my waking up, but it wasn’t a huge one.

Then several months on that dosage, and I had the question: do I want to come off it?

Everything about this is contextual, so I want you to understand that in the past year where I came down to the lowest dose, and now when I’m coming off entirely, my mental health has been better than it has ever been in my entire life. I am now capable of doing things that even three years ago I would have believed impossible.

But the idea of not being on medication at all was, and remains, scary to me. Because I can’t tell how much of this success is due to the support of my medication. It’s not, like I said, all that measurable. And my medication is currently the only form of mental health treatment I receive.

The thing is, though…I still wanted to be able to wake up.

I still couldn’t. It still felt like someone had shaken me awake at 3am whenever the alarm went off, even if I’d had 8, 10, 12 hours of sleep. And I slept too much still. My sleep was a mess, and it was beginning to be a major delay on my recovery.

I needed to sort it. I’ve spent a long time trying all sorts of ways to make myself ‘become a morning person’, which for me is a loaded thing, because of this medication. None of it had worked. I still kept waking up feeling awful.

And in the end, it was just too much.

So a bit over two weeks ago, I called my doctor and asked if I could start coming off the medication entirely. The process, he said, would be the same: one day on, one day off, do this for probably a couple of months. Then we’ll do one day on, two days off – again, for a couple of months. Then we’ll stop.

The day after I started doing this, my friend died. I considered stopping – that now wasn’t the time. But I was pretty sure his response to me trying this would have been: “Dude, that’s amazing! You are kicking arse! You’re a totally different person now!” – so I kept going. Even through the first week when it felt like the world was just wrong.

And somewhere in that second week, I started to realise: the days I didn’t take my medication, I woke up normally.

Not normally for me. Normally. My alarm went off, and I was awake.

Is this a placebo? Possibly. I don’t care. Because I’ve been able to get up at times I never knew existed and it hasn’t been hideously painful. I’ve been more awake during the day, had energy at levels I’ve not seen before. And most importantly, with all these good things? My depression isn’t worse on those days. My anxiety isn’t worse on those days.

Coming off my medication is working.

It will, like I’ve said, be several months and then several months more before I’m actually medication free. And it still might not work – I could still relapse. One of the really comforting things about talking to my doctor this time was that he said: “you might not be able to come off, and that’s okay.”

After years of people encouraging me to try, it was so good to hear someone normalise the need to be on anti-depressants long-term. Because for many people, it isn’t possible to come off. Some people are ridiculously lucky and don’t get side-effects that would put them in this situation of weighing one against the other.

Or I might just be able to come off. I might no longer need the steadiness and the boost that my medication gives me – I might, finally, have gotten to the point where I can give that to myself. That doesn’t make me superior to people who can’t come off it. It just makes us different. It just means my illness works differently.

But whatever happens, I’m really proud of getting to the point where I can take this risk at all. Because it’s a hard, huge risk – even when you’re far into recovery. It’s always terrifying. It means accepting that your illness, which has been your world for so long and is all you know, might not be permanent. That there is a you without it, and that you is the person you want to be.

And to my astonishment, it looks like I’m going to manage to do it.

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