Anyone else been wrongly prescribed anti-psychotics?

[OldLordy]

I was. Took em for years. Fucked me up to be honest as they're bad for you. Turns out I wasn't psychotic at all. The whole thing was nonsense. I'm grand now I've stopped taking them but angry and sad that I did for so long. Anyone experience anything similar?

Curious to ask, how do you know you weren't psychotic? Did you ever hear voices? Family member takes them and I can't help wondering.

ime anti-psychotics are sometimes prescribed for deep-seated depression rather than psychosis. from my experience in my family, I would resist this use unless there was no other choice.

Do you mind if I ask how you ended up on them?

A friend was given them because they didn't want to give her diazepam for anxiety and they did so much damage. She ended up going private and got more appropriate treatment.

The anti pyschotic experience was dreadful for her. She ballooned in two weeks - I mean really, never seen anything like it - and was a complete zombie. She finally went private because she felt the risk of her losing her job was very high, so though the bill was huge, she recovered and kept her job.

I know lots of people who say they've been wrong prescribed them. Until the lack of meds takes over. They end up sectioned so they have to take them. Then they think they are better and the whole cycle starts again. I don't know anyone who has actually been wrongly prescribed them though.

Not saying that's the case here though as I'm aware that's how it looks.

@HipsyOngeza yeah I had perceptual disturbances. I mean I was distressed. That led to me acting strangely and becoming withdrawn, so people avoided interacting with me. Which in turn meant I didn't trust people.

However I discovered through counselling (on the NHS so not a quack) that what I was experiencing was PTSD. I hadn't realised. It was the counsellor who said I should come off them. I was resistant because y'know I'm a crazy person right? And crazy people need strong pills.

Well, I don't. I'm fine now. Have been for over two years.

But I do feel sad about the time on anti-psychotics. I completely lost sight of who I was. And the physical effects are brutal.

There isn't a pill for psychosis anyway, not that I had it. I mean there isn't a pill that stops you thinking your neighbours contract killers. There are pills that sedate you so heavily that you can't summon the energy to give a shit though. They'll also make you put on four stone, sleep 15 hours a day and become diabetic.

I guess some people call that a cure.

What's the script with your relative? What support do they have?

@CarmelBeach I'm so glad your friend got herself out of that situation. That is worth every penny.

@pallisers yes. Is that off-label prescribing? Christ alive, what a thing to prescribe off-label, when you think about it. Awful.

OP yes, I was pretty shocked it happened at all. There were so many alternatives available.

I'm so glad you aren't taking them any more.

Re off label, I also know someone who had them for a while for back pain. She also gained a lot of weight. That seemed to be about avoiding codeine.

@CarmelBeach thanks, I'm glad too.

How worrying it must be for you with your relative. It's not a good situation to be in.

And your friend got them instead of codeine? Dear God alive. I don't even know how they would remotely help with back pain. Other than stopping you having the capacity to feel distress about it I guess.

The counsellor who realised I had PTSD turned my life around, really. It was a difficult process. Especially as I'd had all of this turmoil for so long and it was hard work examining the event that triggered it all. But it was so, so worth it.

@OldLordy I hope you didn't think I was minimising or disbelieving you. My comment didn't read quite how I intended it!
Anti psychotics are brutal from a physical point of view.
I'm glad you managed to find the real cause of your illness and that you are better now.
Apologies again if my comment came across badly.

OP I'm glad it was worth it for you

I have had one incident where counselling was considered a good idea and it was useless. But time healed that trauma for me, or as much as it can be.

There's a neuropathic link for anti psych drugs for pain, if you're interested

www.uspharmacist.com/article/antipsychotics-for-pain-management

I just started a thread about blood pressure meds because I feel the GP shouldn't be asking me to go on them and if they think it's important, the choice of med isn't great. What's happened to you is a good example of why I question things.

I've also had trouble getting my parents issues taken seriously. The NHS, even pre Covid, seems a bit topsy turvy.

Thanks for your post OP and I am so pleased to read your story. I agree wholeheartedly with you, no pill will erase the thought pattern, and often if the therapeutic work can take place at a deep level it can shift an entire life's worth of beliefs and thoughts. I find it quite worrying that that isn't discussed more, rather than medication being seen as the panacea for everything. I often find on this website that people are constantly told to medicate as though that will cure all anxiety and depression. I appreciate that medication can have a place but also believe that the individual can do the work to heal themselves in a long term, holistic way. Why is this view almost outlawed though? I recently had experience with my GP about my own mental health and I felt completely powerless and he shook my trust completely. I am having long term therapy and am slowly unpicking all the crap that has led me to a life of self hatred, low self esteem and self sabotage. The work I am doing is for myself and for my kids as I have no desire to pass down these thought processes. There is no pill that could address any of this stuff. It has been painful, uncomfortable and necessary.

I was for almost ten years for a condition I did not have.

I was later diagnosed as autistic and all support was ditched within days and not so much as an apology for the years of trauma or having the carrot of recovery dangled in front of me and being blamed for not doing enough when I just didn’t get better., something that was never going to happen because they were treating the wrong thing.

I lived those years as if I was in a bubble. I could only see what was directly in front of me and the world around me was so fuzzy and abstract. My brain slowed right down and I had awful
Tics. I often slept for 20hours a day. I had the best years of my life taken from me treating an illness I didn’t have. I should have been dating and partying and learning how to work in the adult world instead I was a zombie.

I cannot forgive what they did to me and I still haven’t had the courage to face the trauma of those years but I’m so glad I got an answer that allowed me to escape the chemical prison.

@GCAutist so much of what you are saying resonates with me. I am really sorry you have experienced this.

I feel a bit angry too, more regretful and sad though. Like you I missed out on life. My kids missed out on life : that's the kicker for me tbh. I knocked around in shitty low paid jobs unable to cope with even the minor responsibilities that came with them. As a result our household income was restricted, we lived in shitty housing, we didn't do even half the things I would have wanted to do because I just couldn't do them. I feel that actually their lives have been wasted too.

When I came off the pills I thought something was wrong with me, for months. I couldn't work out why I was feeling like nothing touched me but that I was simultaneously functioning so well. I got promoted, scheduled loads of activities, it was all great, but I didn't feel like "me".

It took me ages, really an embarrassingly long time, to work out that this is me. That I'm someone who does stuff and is competent. I didn't know what it felt like to not be overwhelmed, unable to cope and unable to function. Because that's how I'd been all the time I was on anti-psychotics.

In hospital after a major trauma, and like yourself no apology afterwards, much less an acknowledgement that they had tried to medicate away a completely natural and normal response to extreme trauma.

Or indeed a commitment to ‘first do no harm’ by exploring possible reasons for behaviour other than psychosis.

It’s a little like putting someone in a full body cast because their elbow hurts but forgoing any questions that might show its only the elbow that hurts, why the elbow hurts, x-rays to rule in/out breaks, and exploring less restrictive remedies like an elbow support cuff or ibubrofen 😂

I suppose ‘here have a pill’ is easier, less time consuming, less thought, less effort to work out an actual cause and, if it doesn’t work, a handy excuse to dodge responsibility (drugs fault not mine or you didn’t take it correctly, your fault not mine)

Glad you are in a better place now and I recommend thinking about all the things you learned because of going through that experience. It kinda makes it feel less like a waste of years if you can identify even one lesson.

And that applies to your kids too, my DS had an awful time of it but we have both learned so much about ourselves, our abilities, our tenacity, and our relationship.

Not enough to say it was worth it maybe but as it can’t be changed, at least enough to feel it wasn’t ‘wasted’ time.

This happened to my DD. Was misdiagnosed and spent 6 months in a psychiatric hospital aged 17 getting worse and worse. Was eventually discharged so drugged up she could barely function.
Ended up taking antipsychotics for 8 years and gained 8 stone in that time.

Recently found out she had a treatable neurological condition and not a psychotic illness.

She is trying to sort her life out now.

I am beyond furious!

I have in the past been prescribed quetiapine to "augment" a standard antidepressant. This was because I was complaining of apathy (which I attributed to the antidepressant) and apathy is also a symptom of schizophrenia, so the psychiatrist reasoned what will treat schizophrenia will treat apathy. Not so. I put on loads of weight and also experienced several occurrences of thrombophlebitis in my left leg - there is a known link between antipsychotics and blood clots. APs are strong, dangerous drugs that should only be used for the condition they were made for.

I take anti psychotics for bipolar disorder type 2. They act as a mood stabiliser.

A counsellor should not be diagnosing you. They are not trained for that and have massively overstepped their professional boundary. If they thought you’d been misdiagnosed, they should have reported this to your psychiatrist.

@madyogafan I am sorry. That must be heartbreaking for a parent to witness. I hope your daughter's path is easier now.

@Iamnotmad urk. The physical side effects terrify me tbh. I've no real idea of the damage I've done to myself. I try not to think about it. I mean I know I'll have to address it at some point but I want to make the most of my mental wellness and not have any more shit to deal with right now.

I didn't know they caused blood clots. They don't tell you shit about this stuff. When I'd been on the pills for a couple of months I asked my CPN if it was normal for hayfever to disappear. She said she'd never heard of this before. But a quick Google tells me they have an antihistamine effect.

@BarefootByMoonlight thank you, those are wise words. I admire you for being able to get to the place you're in now wrt your experiences. I'm not quite there yet.

I guess one positive is that in line with what @Leafy12 is saying I do feel that I've broadened my outlook on mental distress which has given me a different perspective on lots of things. I agree with you @Leafy12 that the way we approach it, including the way we talk about it, using words like illness and wellness and so on, often seems unhelpful.

I met a lot of people travelling briefly or for longer periods with me on my long journey through the psychiatric system and all of them had a story. Very few of them had a voice. And they all had a prescription.

It sounds like it's working for you though @Diddumz.

As for @Soontobe60 the counsellor was a psychologist working in an NHS therapeutic setting that provided counselling services. He did more for me than the GP that put me on that garbage and the succession of psychiatrists who kept me on it. He provided therapy in line with the features of distress which he observed and evaluated and his treatment worked. If that's overstepping then I'm glad he did. The thought that I could have spent even more of my lifespan unable to function and lurching from relapse to crisis endlessly fills me with horror.

'I met a lot of people travelling briefly or for longer periods with me on my long journey through the psychiatric system and all of them had a story. Very few of them had a voice. And they all had a prescription.' Thank you for using your voice. What you said here is so true. Is this really what we want? I'm glad your counsellor was brave enough to overstep the mark too. Thank you so much for sharing your experience.

Thanks @Leafy12 and thanks for sharing your thoughts and experience too. I hope that the work you are doing is helpful. It sounds like it already is. As you say it's a slow process. I was initially referred for 12 weeks' counselling but it ended up being much longer than that, around nine months all told. These changes don't happen overnight when addressing thought processes, habits and behaviours that have been there for so long they feel like a fundamental aspect of one's personality.

Maybe it is "easier" as you say to medicate rather than provide that. But only in the short term. In the long term I cost the NHS much more with repeated "relapses" etc and sadly I'll likely cost it more again in the future as the physical damage takes its toll. Plus the pills themselves are not exactly cheap, and there are new ones under new patents coming out all the time. And that's before you even start to count the money I've cost the state in benefits, both sickness and income top ups, the loss of tax revenue due to earning fuck all, the free school meals for my kids and so on.

I'll tell you who's overstepping the mark, it's the people who tell their patients to take this muck that drastically limits their intellectual and emotional capacity and that devastates their bodies. Which then leads to all of the above harmful societal effects.

Yeh, I agree. When did we lose the right to question how we are treated? Just to question if that is the right treatment pathway. You are reminding me of a book I am currently reading called 'The body never lies' by Alice Miller. She also questions the same, and the need to tell and feel our stories in our own words. I have also massively drained our beloved nation by not effectively working for most of my adult life and have been repeatedly offered medication. This therapy is the first time I have felt my eyes open. Thanks for this enlightened conversation on a Thursday morning! Have a good day.

@Leafy12 it really sounds like you're on the right track with your therapy. I'll have a look out for Alice Miller. I've been reading Daggers Of The Mind which makes the very good (to me) point that a "mind" can't actually be ill. This sounds like a radical concept but it is true: there is no such physical entity as a mind and therefore it cannot have pathologically observable signs.

Incidentally my kids made me watch EastEnders tonight (I swear they do it to wind me up) and there's a story about a young black man who is questioning his diagnosis of schizophrenia.

Ofc I am well aware that young working class men of colour are massively over represented in secure wards and in terms of psychotic diagnoses but still it's incredible to see this storyline on a flagship soap.

I hope they are brave enough to see it through. It being EastEnders he's already gone from questioning to flushing the pills down the sink in the space of one episode so I'm nervous that it's going to turn into a cautionary tale about "The Terrible Things That Happen If You Don't Take Your Meds". It would be absolutely amazing if that wasn't the case though.