I’ve written a few times on this blog about my decision to manage my cyclothymia without meds. And I’ve mentioned how distressing, difficult, and inadvisable my experiences of coming off all meds cold turkey and without the support or supervision of my GP. Today I’m talking about my experience of being prescribed the last meds I took for cyclothymia and why that experience has scared me so much I am disinclined to ever try again.
This isn’t an easy topic to write about and I think I’ve only ever spoken about my feelings around this once, to one person. I also want to prequel this with my usual warning: I am not anti-meds, I advocate people making the right treatment choices for them, with all the necessary information when making that choice. I’m also not a medical expert; these are reflections on my experience and some pieces of information I’ve found which may, or may not, explain some of my experiences
I took anti-depressants without more than 6 months cessation from the age of 16 to 24. I can’t remember a time when I had symptoms of depression for which I was originally medicated but didn’t also have hypomanic symptoms. I was always cyclothymic, I just never told my GP, psychiatrist, or CPNs this so it was several years before I was diagnosed and treated for the condition – cyclothymia – which I had.
By the time I was 21 I had taken 6 or 7 different antidepressants. In that time, 2 of them had worked well. I got fairly good results with the second one I tried – lofepramine – worked well for over a year, I chose to gradually reduce my dose in conjunction with support from my GP in order to be med free (and ‘recovered’, I thought) for my first year at university. After about 3 months at university I felt I was becoming depressed again and visited my new GP. She was happy to let me start on lofepramine again; this time, however, it didn’t work. I went through 3 more antidepressants and finally found mirtazapine. I took it and was largely fine – I still experienced hypomanic swings but generally the grinding lows were alleviated. Fast forward another 6 years in which I’d been consistently on mirtazapine but had attempted, unsuccessfully, to reduce my dose and come off entirely. 6 years in which I fucked around quite a bit with the dose and ultimately felt it wasn’t working at all any more. I believe that getting through all of those types of antidepressants, coming on and off of them (with and without medical advice) may have caused me to experience something called tardive dysphoria (which is admittedly not clearly proven or understood). Additionally, I think the long period of time I took mirtazapine may have had the effect of making me partly resistant to antidepressants; something called antidepressant tachyphylaxis. Ultimately, I found myself desperate, unhappy and ready to admit I had more problematic moods than just low ones. This was the first step in what became my diagnosis of cyclothymia which I’ve written about previously.
It’s what happened next that I want to talk about.
I was prescribed seroquel to take in addition to mirtazapine. I was anxious about taking it. I asked the brusque I-haven’t-got-time-for-this and I-don’t-get-paid-enough-to-deal-with-stupid-kids-like-you psychiatrist if taking seroquel (an anti-psychotic) would make me a zombie. This was a deep-seated fear; my understanding of anti-psychotics was entirely shaped by visiting my brother whilst he was sectioned in a mental hospital when I was 11 and him being so drugged up he could barely speak or walk. The psychiatrist laughed at my question (an all-too-common experience I have with mental health professionals) and said “No, no, we won’t make you a zombie”.
That was it. That was the extent of the discussion we had about the medication I was being prescribed.
I went home and googled. Because of course I did. I learnt, immediately, that the 300mg I had been prescribed per day was relatively high, and that every site said that that dosage should be achieved gradually. I had no means to ‘work up’ to 300mg, the tablets weren’t easily divisible. So I simply started.
Seroquel was, and is, brutal. It did quieten my mind and that was what I needed at that time. But it took me too far beyond quiet. It did precisely what I feared, precisely what was laughed off by the psychiatrist: it zombified me.
I was slow to think, slow to speak, slow to wake. I piled on weight – something I had already done as a result of taking mirtazapine – and became physically heavy as well as intellectually and emotionally slow. Everything stopped.
When I had a review a fortnight later with the psychiatrist he enquired after my symptoms, I reported my hypomania had subsided and I wasn’t depressed – mostly because I couldn’t feel anything. He asked if there were any problems; I complained of the hypersomnia, mental slowness, morning hangover. He said they were all to be expected.
That was it. Consultation over. I never saw him again.
A few months passed and I asked my GP about the side effects which were becoming increasingly difficult to bear. He said he could not advise me because he was not an expert on that medication but suggested that as it was working I should keep taking the medication.
Nobody was interested in my quality of life. Nobody was interested in taking the time to help me find the correct therapeutic dose. Nobody cared that I couldn’t function for at least 14 hours out of every 24 in which I took my dose of seroquel and mirtazapine.
Months passed. I moved house and GP. I visited my new GP and requested assistance in coming off the seroquel as I had decided I could no longer live with the side effects. He asked me one question; “do you still have the symptoms for which you were prescribed this medication?”. He phrased it in this way because he did not know why I had been prescribed it. He did not ask what specific diagnosis or symptoms I had. I replied yes, I still experienced dulled sensations of ups and downs. His answer was absolute; “I think if you are still experiencing the symptoms then you must stay on the seroquel. It could be dangerous to come off”.
No discussion. No alternatives. Just a sense of brutal efficiency.
It is like being asked to cut down a tree; you are offered two tools, a hand saw or a nuclear warhead. And you choose the nuke. People appeal “but, the nuke will destroy everything around the tree and change everything, can’t you use the saw?” and the reply comes “why does it matter? You want the tree gone, the tree will be gone. You didn’t say anything about keeping the grass, the flowers, the soil when you asked us to rid the world of this particular tree!”.
I made the choice, the lonely difficult choice, to come off seroquel, and mirtazapine. I had lost all confidence in medication at this point. I did it alone. I did it cold turkey. And it hurt. Nobody told me it would hurt, nobody told me it was dangerous. Nobody told me when I began taking either of these drugs that there were clear and specific issues which could be caused by withdrawal. I was trapped. Nobody told me I was walking into a chemical trap when I began taking these pills.
Why are mental health patients not briefed on the side effects – long term, short term, and withdrawal related – of drugs? Why are we presumed to be incapable of making informed choices? Why is the medical opinion always that absolute cessation of symptoms is more important than quality of life?
I believe that I was given the wrong dose of seroquel. I think it may have even been a mistake in how much I was actually prescribed versus how much the psychiatrist was intending to prescribe. I know of people with similar conditions who are prescribed not even one sixth of that dose and nobody cared to either check or resolve that mistake. It terrifies me to think I crushed my brain with a chemical that was entirely disproportionate to the problem, and which may well have damaged some functions permanently.
I think seroquel broke my body. I suffer chronic digestive problems and migraines now. I suffered neither of these things before taking seroquel. They both emerged within 2 months of stopping seroquel and have persisted for more than 5 years.
I think the treatment and lack of discussion I experienced in relation to going on, and coming off, seroquel have scarred me emotionally. I did not feel I had any control over my own health. My own sense of wellbeing was utterly and completely dismissed. I felt stigmatised by the GP who implied I may be a danger if I came off a medication which was suppressing hypomania, the GP who took no time to understand what it was the seroquel was being used to treat. I felt ashamed of this condition and I felt afraid of who I was on and off medication. It’s taken a long time to work through that.
Ultimately, my trust in the mental health services in this country was entirely destroyed in the series of events which surrounded my time on and off seroquel. And the worst thing is: it simply did not need to be like this.
All I needed was choice, information, discussion. I needed responsive care which takes into account the needs and wishes of the patient. A model of care which actually prioritises quality of care over efficiency of patients through the door and out in the world, drugged up to the eyeballs.
I needed information on the risks of trying multiple antidepressants. Information on the risks and consequences of going on and off medication with and without medical advice with regard to it making relapse more likely, and developing resistance to the meds.
I needed to be treated like a person. Not a chemical reaction which could be successfully neutralised.
All too often, pills are used as a simple solution to what is in fact a complex issue. Too often pills are placed before the person. Pills are the absolute, the thing that is right and complaints from the person of pain, side effects, and poor life quality are inconvenient asides which can be shrugged off, swept away, ushered out the door.
I think there might be a combination of medication out there which could make my life better. I am much too afraid to try again. Terrified of even worse side effects, even more catastrophic long term consequences. I won’t try again. I live in fear of ever being ill enough that my choice to that end is removed. And it should really, really never have been like this.