Fed up of medication.

[Aubergine]

I am so, so fed up of medication. I've been on an antipsychotic and an antidepressant pretty much non-stop since I was 20. I will be 28 next month. So frustrated I cannot explain. I don't want it anymore.


Risperidone and amisulpride made me lactate, olanzapine made me exhausted and fat, and now Clopixol is making my jaw ache and my tongue hurts where I've bitten it because of the jaw movements. I've been put on procyclidine to ease the jaw movements, which does help some, but it also makes me anxious and dry mouthed. The venlafaxine is fine as long as I don't miss a dose, but if I do then I get the shakes, brain shocks and diarrhoea.


I am 28 and take medication three times a day for something I'm not even sure exists for me. I take it because I'm told to. I take it because, when I don't, they take it upon themselves to drag me off to a mental health unit and won't let me out until I comply with their wishes. I do not want to get depressed again, because that was horrendous, but perhaps it would have lifted without medication? Perhaps that is the natural order of things?


If I had some kind of proof that I have the disorder they've decided I have (schizoaffective), then it might be easier to swallow (ha!) There is no proof though. It's just their word for the things I experience against mine. I'm not too preoccupied with upsetting thoughts, I'm happy and I'm functional. What if all that's being attributed to the medication, when actually it's just me. I am a happy person. Genuinely. I could be having these shitty side effects for absolutely no reason other than that I'm taking drugs that have been prescribed for me because of a random label they decided to apply to me almost eight years ago.


I don't know what to do. The mental health team won't let me stop them. I've already been threatened with a depot. I don't want to take them. I don't want any of it.


I know, I know. Life is not fair and I need to suck it up and either do what I'm told, or pretend to do what I'm told, or something. Tantrum. I am throwing my toys out of the pram.

[Aubergine]

And did I mention that I AM SO F'ING FED UP. My tongue is so, so painful. There is only so much Bonjela that one can use. STUPID. I want to really scream at someone, but there is no one to scream at. The psychiatrist, perhaps. I've been accused of being "hostile" when I'm "unwell" though, so that would probably give him ideas and I do not have the time. I have a life. A really good, productive life. It's just it'll be a life without speech before long, as my tongue with disintegrate.

[sherlock holmes]

I'm sorry you're feeling so fed up :(

Is it possible to see your psychiatrist and ask for a medication review? Suggest that one of your meds is reduced and then you can see if it makes you feel better or worse. And if that's a success you can try reducing another under his watch.

If he says no then you have the right to a second opinion from another psychiatrist.

It might be worth asking the psychiatrist why he thinks you have schizoaffective rather than 'plain' depression.

Please don't do anything yourself though. It would be seen as non compliance, and may make it harder for you to ask about reducing meds in the future.

[Aubergine]

Thank you, Sarah. I'm sorry. I know I moan a lot. I am tired and likely hormonal, which is not helping how I feel about things right now. Women and periods, eh?


The Clopixol was only increased about a month ago, so I don't know whether the psychiatrist would be willing, especially as my CPN reported an improvement to him. Less preoccupied, apparently. I am, I guess, but I'm unsure as to whether that's a good thing or not.


I've had the schizoaffective diagnosis explained to me before. It's because they think I hear voices that aren't there and have "unhelpful beliefs" or whatever term they're using on that day. Just because beliefs are not helpful does not make them untrue, right? I do sometimes get a bit caught up in them, and that I guess is what is particularly unhelpful. I haven't been too bad recently though. I've also had mixed up thoughts in the past, like thoughts floating away, but who doesn't get that when they're tired/stressed/worried?


A second opinion might be a good idea, but I worry about having to go through the same questions that i've been through a million times before. What if they came up with the same conclusion? What if they thought something worse? It's not the diagnosis I'm really that concerned with, more that I'm taking medication that could well be unnecessary. Time is a great healer and if things had been left for a while, they might have improved anyway.


I work in a pharmacy. Physician heal thyself.

[Epicene]

You are completely within your rights to ask for a medication review. I can hear how fed up you are and how much you feel taking meds is a barrier to you living the life you want.

My concern for you is that your mental health team might argue that you are happier and more stable now because of, rather than in spite of, the medication. But depression and other mental health symptoms can absolutely lift and the best way of testing this would be to see how you get on without whilst under close supervision of your team. Like Sarah said, it's important to make changes with professional input as otherwise it could be used against you (sadly).

Have you ever read anything by Jim Read? He's written a lot for Mind and done quite a bit of work on the 'cons' of psychiatric drugs. I just wonder whether citing some research might help your case.

[Aubergine]

Thanks J. You're replied a lot to me recently. I really appreciate it. :)


I'm worried about asking, because I'm worried I'll be frustrated with their response. CPN cited an improvement after an inquired in Clopixol a month ago, and that makes me think they'll be reluctant.


I haven't heard of Jim Read. I'll have a Google. I'm not anti-psychiatry, not at all. I think psychiatric drugs, used in the right way, can be incredibly helpful. It's just I don't think it's necessary.

[Epicene]

You're welcome!

Jim Read is not radically anti-psychiatry, just has put a lot out there about how medication can sometimes be unhelpful for people (either physically or emotionally).

I think as long as you're prepared to maybe hear your team disagree, it is worth asking. But give it some thought as to how you'll respond or take things forward in a safe way first.

[Ballerina123]

I have schizoaffective - bipolar type. I feel exactly the same as you. I've been on meds 10 years and im sick of the side effects.
I want to be discharged from the early intervention to my gp so I can stop my meds. I'm not saying that's the right thing to do. In fact I think many people would disagree with me but I really do get what your going through.
Taking my meds every day makes me almost cry because I'm so sick of them.
Sorry you're going through this too.

[Aubergine]

I feel like an angry child, who'll get told off for even considering the idea. I know I am being very immature about this, and it's not a quality I like to see in myself.

[sherlock holmes]

I can hear how frustrated you are. I really hope they listen to you and validate your feelings.

[Aubergine]

Thanks Sarah.


I've just phoned the crisis team. I am so pissed off. Crisis team can't actually do anything, especially as I'm not at risk, but I need to rant to someone or my head might explode. ****. It's all shitty and I'm wallowing in self-pity and it's not attractive.

[Epicene]

Well done for calling the crisis team. It sounds like there's lot in your head right now so hopefully sharing that will help. It's okay to be self-pitying sometimes!

[Aubergine]

Thanks J.


They phoned back and she was lovely. She said that I never cause a fuss. She thinks I should ask CPN for a medication review. I don't know about that, but she seemed to hear my distress. She's going to email my CPN and I'm going to phone her on Monday.


I don't want to take the medication tonight. I really, really don't. Crisis team lady said it's not about getting in trouble, it's about managing my mental health. It feels so much like I get into trouble with people though. Why else would they lock me away for not taking it? I get a bit low sometimes, granted, but so does everyone else. I'm not special. I want to scream.

[Steel Maiden]

I understand your frustration. I have taken over 35 different medications in my life, since I was a baby, for various conditions. I am currently on six medications a day as I have multiple illnesses.

As for the jaw movements - does the procyclidine help at all? Are the jaw movements TD-type or parkinsonian-type? I thought that procyclidine doesn't help with TD but don't do anything with meds without discussing it with your doctor.

I find that keeping to as healthy a lifestyle as I can helps me with my mood and wellbeing. I cannot leave the house on my own for various reasons, but I do exercise in my living room every day and my support workers to take me out places where possible. I try to eat healthily too but admittedly I don't always do that when my mood is low.

I understand if a healthy lifestyle is hard though. I often find I don't have the energy to exercise, but even a little bit works.

I don't know your medical status though, so if you can't exercise I don't mean to put you down.

I hope that you feel better soon.

[Aubergine]

Thank you, Oly.


Sometimes I think the procyclidine is helping, but my tongue isn't any less sore/ulcerated, so perhaps that's all in my head. I keep clenching my jaw. What's the difference between TD and parkinsonian movements? The pharmacist at work thinks it's TD and is wary of me taking the procyclidine. Why would the psychiatrist prescribe it though?


I exercise a reasonable amount, in that I love to cycle and that's how I get to work. My diet could do with a lot of work though, as I am lazy with cooking and eat too much rubbish. I've started shopping online again so I don't have unhealthy food in the house, and that's helping.

[Steel Maiden]

Quote:

Originally Posted by Aubergine

Thank you, Oly.


Sometimes I think the procyclidine is helping, but my tongue isn't any less sore/ulcerated, so perhaps that's all in my head. I keep clenching my jaw. What's the difference between TD and parkinsonian movements? The pharmacist at work thinks it's TD and is wary of me taking the procyclidine. Why would the psychiatrist prescribe it though?


I exercise a reasonable amount, in that I love to cycle and that's how I get to work. My diet could do with a lot of work though, as I am lazy with cooking and eat too much rubbish. I've started shopping online again so I don't have unhealthy food in the house, and that's helping.

You're welcome.

TD movements are more like involuntary jerking / grmacing / chewing / clonic movements. Parkinsonian I believe is more of a difficulty in movement / rigidity / "cogwheeling" movement.

I'm not sure. Perhaps if you're worried you should ask your psychiatrist to explain it.

I am not a doctor so I cannot say definite yes or no.

I've read studies that say that high sugar diets can cause all sorts of adverse effects. I used to eat loads of sugar but now I try to eat complex carbs (like pasta or brown bread) when I crave sugar, which helps a bit. I have been eating a bit too much sugar recently and that isn't helping me. Perhaps you could eat things like salads or pasta dishes, which are healthy but not hard to make? I have real issues with cooking so I understand.

[Aubergine]

Thanks again. You are very helpful.


I don't know. It's involuntary, but it's not hugely noticeable from the outside. I clench my jaw and my tongue's a bit restless inside my mouth. My manager said she could "hear [me] clicking" on Friday when I was stood at the computer. I was worried that my sore tongue was down to my oral hygiene not being good enough, but I always (when well) brush my teeth twice a day and have been using chlorhexadine mouthwash since it started. I guess there's still going to be trauma there if it's getting caught on my teeth all of the time.


I'm going to ask the psychiatrist for a medication review, I think. He's lovely, but psychiatrists make me twitchy. I'll see what my CPN says on Monday when I ring her.


I've started buying pre-packed salad and adding tinned salmon and low fat dressing to it. That makes a really nice lunch. I have porridge a lot, with soya milk. I'm really trying.

[Wellingtons]

Sorry not got much time but just wanted to say your post made me think of chemotherapy. The side effects are horrendous, it's an awful thing, but it's there to treat something that has much worse outcomes. The choice is yours; disease, or treatment. (unless you're sectioned, but you could argue that getting sectioned is a result of making the choice not to accept treatment).

[Aubergine]

I don't know, Wellingtons. With chemotherapy, there's a definite condition to be treating. There are scans and test results and a guarantee that without treatment, you will likely die. There's none of this with me, so why take it? I'm happy. The thing that's making me sad is the treatment, and it's treatment that I don't agree that I need. I get low. Who doesn't? I get stressed. Who doesn't? I work, I manage my flat, I have friends that I have great relationships with and I enjoy life. Things are tricky sometimes, but surely that doesn't warrant putting me on a medication that causes so many issues. What if they'd resolved themselves anyway?

[Aubergine]

Thank you though. I really appreciate the reply, especially give you're short of time. :)