Wednesday 10 September 2014

Has Antipsychotic Medication Made Me Worse?

The first time I took psychotropic medication was when I was 18. I had been suffering with depression for about two years and I was finally given help in the form of a prescription for fluoxetine (Prozac). I was put on 20 mg and I found that it did nothing to me. It had no benefits and fortunately, I had no side effects. After a few months on it, I decided to stop taking it as I felt like I was wasting NHS resources taking something that did nothing to me.

As well as the depression, my first symptom of psychosis (hearing a voice) began just before I started taking the fluoxetine. I had seen a psychiatrist for depression around that time, and decided to tell him about the voice I had been hearing. However, he took no notice of it and so I was left with no help for the voice, that became increasingly worse. More symptoms of psychosis manifested in the next few months; I became delusional and suffered with intense intrusive thoughts. In spite of this, I was still high functioning.

I was at a sixth form college at this time and at first, I struggled to do any work because of the voice I was hearing. I would get extremely distracted with it and at times couldn't make out what was being said by tutors. I remember getting in trouble on more than one occasion for doing little or no work, but it was because I simply couldn't hear what was being said on account of hearing this voice. After a while though, I began getting used to the voice and started being able to do some work. I managed so well that at the end of the academic year, my results were good enough to get me into university.

I was still psychotic when I moved away from home to go to university and despite a few little blips, I managed pretty well. As well as studying for my degree, I had a part-time job in retail, where I worked from 7 pm until midnight Monday to Friday. However, I was rarely home from work until 1 am or later, and because I had to take time to unwind after work before I could go to bed, I was rarely asleep until 4 am. Some days, I had to be up for uni at 7 am, just three hours after getting to sleep. Yet I could still function. I was still attending lectures, completing assignments and going to work on very little sleep. There were times when my job made me work all-nighters, where I would work from 8 pm until 8 am, and I still attended university the next day without going to bed.

At the end of my first year of university, I was given my grades. I averaged 65.5% for the first year, comfortably achieving an Upper Second or 2:1 for that year. And I was psychotic throughout the year! But just after I started my second year, I was sectioned. I spent a few days in hospital before I was forced to take antipsychotic medication. Because of refusing it, I was injected with it. The following day, the medication made me feel like I wasn't walking properly. It was like both wading through treacle and walking on clouds. Everything felt weird. In the following few weeks, I really struggled with the sedation of it. At first, I slept around 16 hours a day but after a while, this went down to about 12 hours. It was still considerably more sleep than I had been getting at university though. There was one occasion at uni where I woke up at 7 am on the Monday morning and didn't get to bed again until 1 am on the Saturday and I was still functioning well. Yet on the antipsychotic, I couldn't function with less than 12 hours sleep.

My work still kept my job open during my two months in hospital but after a few more months away from work, they terminated my contract. I had thought about getting back into work, but knew it was impossible with the antipsychotic I was on. It was a different antipsychotic to the one I'd been on in hospital, but it still made me need 12+ hours of sleep a night. To top it off, the antipsychotic didn't help with my symptoms. All it did was give me side effects.

Less than a year after being discharged from hospital, I was sectioned a second time. This time, I was in hospital for 17 months, being discharged in March 2011. Eight months later, I started volunteering in a cafe one afternoon a week. I was in the process of coming off my antipsychotic and when I started volunteering, I was on a low dose. I struggled a bit with the sedation to start with, but when I came off the antipsychotic altogether around two weeks in, I found myself able to work better. However, I started struggling with obsessive thoughts and after four months, I had to leave the cafe.

Fast forward to today. I have been on a total of fourteen psychotropic medications (nine of which were antipsychotics) and if I am totally honest about it, four have been of any benefit to me. And out of these four, only one of them was an antipsychotic. However, that antipsychotic gave me awful side effects which is why I'm not still taking it. The antipsychotic I currently take, 600 mg of Quetiapine XL, is the only antipsychotic that I would ever voluntarily agree to take. It does nothing to my symptoms but it helps me sleep and weirdly, it drastically reduces the number of headaches I get. Plus, the only real side effect I get from it is the sedation. My appetite is slightly increased from it, but my weight hasn't spiralled out of control, which it has done on other antipsychotics. But I wouldn't be able to work on Quetiapine as the sedation is too strong. I would need to get off antipsychotics altogether before I could even think of getting back to work.

I can honestly say that antipsychotic medication prevents me from working. I know that some people are on antipsychotics and able to work, but they are affected differently by their medication to me. Just because some people are able to work on antipsychotics doesn't mean that everybody can. But there is another thing that I think antipsychotic medication has prevented me from doing, and it's probably something you wouldn't think of.

A few weeks ago, I read an article about antipsychotic medication. I'm not putting a link to the article here because it would scare even the most med-loving person off antipsychotics and I know that some people DO need them. The article spoke of a healthy person taking antipsychotic medication as part of an experiment and one sentence about their experience jumped out at me.

"Highly personal memories of previous unhappy times - broken relationships or loneliness - seemed to be flooding back."

As I have written in previous blog posts, I was bullied in my final three years of high school and left straight after my GCSEs due to being unable to cope with the bullying. At the end of the school day, I would usually get a lift home from one of my parents but for a while in my fourth year of high school, I had to make my own way home. At first, I got the train home as few people from school used it. However, one day after school, while I was waiting for the train at the station, I was subjected to a half-hour ordeal of intense bullying, which bordered on assault, by three lads in my year. I became too scared to use the train again so at first, I walked the three miles home. After a while though, for reasons I can't remember, I decided to take the school bus home. Unsurprisingly, I was bullied on the bus and sometimes bullied as I walked home from the bus stop, so I was relieved when I was able to get a lift with one of my parents again.

After I left school, I used to have to get the train into town to get to work or college, and when I moved away from home to go to university, I had to get the bus every night to get to work. I had no problems on the train or the bus (aside from losing my bearings on the bus one night and getting off a few miles away from my stop!) and while I preferred going in the car, I was perfectly comfortable on public transport. And bear in mind that I was comfortable on public transport while I was psychotic!

Ever since I have been on antipsychotics, I have struggled with public transport. As the quote above says, highly personal memories of previous unhappy times, in my case, being bullied on buses and trains, came flooding back. So as well as preventing me from working, antipsychotic medication seems to have made me scared of public transport. It's something I am working on with my support workers, but I am wondering if I am ever going to be able to use public transport and be comfortable with it again.

As well as these two things, antipsychotic medication has made me gain over nine stone (126 lbs) in weight. I have been able to lose four stone (56 lbs) at various points but I'm still considerably heavier than I was before I started antipsychotic medication. I often worry about developing diabetes, something that other people I know have developed from their antipsychotics. I've had other horrible side effects too, one antipsychotic gave me urticaria, whole body itchiness that didn't go away with antihistamines, another gave me vomiting and diarrhea like I had norovirus for a week, a third one gave me terrible anxiety and at least three of them gave me arguably the worst side effect of antipsychotics: akathisia.

When akathisia strikes, it prevents you from sitting or lying down. You HAVE to walk. Constantly. And for some reason, it is usually worse at night. So when you're shattered and want to sleep, you can't. You have to walk around your bedroom until you collapse into bed with exhaustion. My record for walking is over eight hours, from midnight until 8 am. And there have been times where I have literally fallen asleep while walking. When I first had it during my second hospital stay, I couldn't cope with it at all. It got so bad that I begged a student nurse to kill me. Fortunately, that day was ward round, and I was introduced to the miracle that is procyclidine. It didn't take it all away but I was able to cope again.

Without doubt, antipsychotic medication has some awful side effects. And as finding one that works is trial and error, it can take a long time for a person to find a working antipsychotic with bearable side effects. I've been on nine and still haven't found one that works and has bearable side effects! But can antipsychotic medication actually make you worse? I think it can. After all, I was able to study at university and do a part-time job whilst psychotic before I started taking medication and now I can't. I could get on public transport without fear whilst psychotic before meds and now I can't. Before antipsychotics I was a UK size 6 (US size 2), now I'm a UK size 16 (US size 12). At one point I was a UK size 18 (US size 14). Before meds I could function on little or no sleep, now I need a minimum of 10 hours, preferably 12 hours. I would love to know what would have happened if I didn't get forced into taking meds. Would I still be able to work? Would I have finished university? Would I still be a UK size 6 (US 2)?

But in spite of all this, I would say that if you are struggling with your mental health and have been offered antipsychotic medication, give it a go. It DOES help some people and side effects vary from person to person. Some people get very few side effects and can tolerate them well. But one thing psychiatrists should always bear in mind is that antipsychotics don't help everyone. If an antipsychotic isn't working after three months of taking it, change to a different one. If you've tried several antipsychotics and haven't found one that works, seek alternative treatment, such as talking therapy.

Schizophrenia can be overcome. There is proof of this all over the internet.

But antipsychotics aren't always the answer.


  1. Really very eloquently written account of your experiences of anti-psychotic medication. My own experience was that whilst using the meds helped in the short term - they helped me sleep and obscured my unusual experiences and beliefs. Over time though I found them increasingly unhelpful and distressing. Akathisia was very unpleasant, dystonia even more so. Weight gain did nothing for my esteem or paranoia and the dry mouth was cloying. I was glad to get off them and reap the benefits. Observational studies of people who don't take antipsychotic medication (Harrow and Jobe's 2012) show that they make better recoveries in the longer term and this is also backed up by Wunderink et al.'s randomised control trial where people put onto a gradual discontinuation program after 2yrs vs a maintenance group also do better in terms of relapses. Thanks for some great writing!

    1. Hi Steve,

      I've had some similar experiences, the antipsychotic I take now helps me sleep, something I'm extremely grateful for. And I believe that psychiatrists who say that schizophrenia means medication for life are wrong. I know of a lot of people who function arguably better off medication than on it. Hope you are now doing well, nice to hear from you!

  2. I think part of your reaction to medication is because you were forced to take them in the first instance. When I first took them, I took them voluntarily. I have had the experience with akathasia also. I spent my time out walking and running feeling restless, it was awful. There is a lot of stigma about tacking antipsychotics in the press and on the internet, saying how bad the side effects are and how bad they are for you in general. Yet there are some success stories out there. Personally I have tried coming of antipsychotics and all kinds of things went wrong. I am better on them and don't really have any side effects. I think the dose of these drugs can play a big part on the side effects. The bigger the dose, the more likely you are to have them. Have you heard of Rufus May who gets by without antipsychotics I think? He may be an inspiration to you.

    1. Hi Jo,

      Yes, I agree that part of my negative reaction to meds is because I was forced into them. But I also agree that there are many success stories of medication and I would never tell anyone to never ever try medication. As I wrote in the post, I say "If you are struggling with your mental health and have been offered antipsychotic medication, give it a go."

      I remember watching a documentary by Rufus May before my psychosis was picked up on. He tried to help a young woman who was hearing voices without medication to great success. I remember wishing I could get in touch with him when I was first sectioned, to see if he would try to help me too. But it was wishful thinking and then came the meds!

      It's good that you are doing well on meds and don't have many side effects, I don't begrudge you for finding meds helpful, on the contrary, I am glad that you have found something that works and doesn't give you awful side effects! I hope you continue to do well, whether that's on meds or not!

  3. Do you realise that you can get psychosis - hear voices and become delusional - because of prolonged lack of sleep. A lot of psychiatrists don't realise this and are quick to diagnose and medicate. What you are saying about your life at University, happened to me too. Instead of burning my candle at both ends, I started living more sensibly, sleeping 7 hours a night etc. and the voices stopped and intrusive thoughts went away. I haven't had any problems since and have never taken any antipsychotics. .

    1. I have heard of psychosis being caused by sleep deprivation but my psychosis started before the sleep depravation. When mine started, I was sleeping fairly well. As much as I would wish that mine could go if I slept well, I know that's not the cause of my psychosis. I sleep very well now, mostly due to the quetiapine I take, and still have some problems, including hearing a voice so sleep depravation isn't my cause. I agree that sleep depravation made it worse, but unfortunately wasn't the cause of mine. It's good that you have found the source of your problems and were able to treat it without antipsychotics. I agree that psychiatrists are quick to medicate, the first psychiatrist I spoke to after being sectioned put me on olanzapine (Zyprexa) after a very brief consultation (I think around 5 minutes)! How she could know that antipsychotics were right for me after that is beyond me!

  4. i will tell you a secret. the drugs we are forced to are dopanime. the mind have a major power that normal people dont know. but it's not only the drugs that harm the mind, that's why when i was forced to mental hospital/Ward many pschologists and psychiatris forced to therapy, with both common sense arguments and humiliation because they wanted to force in me, sentimentalism. sentimentalism=heart, dopanime act on heart. so, the better way for a schizo patient like me that was put on the corner many times on this life, it's asceticism, meditation, pessimism, cold hatred(not anger), misanthropy, social isolation, negativism because this is our normal state and we ''schizos'' have syncrony with it. a saturnian way of life. this break the effect of dopanime on heart, even others effects it's imposible to break like pain in the head for exemple.