Life destroyed by my psychotropic meds

[NooNooHead]

I can't go on with my stupid lack of control over my body thanks to some evil antipsychotic meds given to me last year after my breakdown.

Having to suppress involuntary mouth and tongue movements every day is exhausting - and there is nothing anyone can do to help.

I have had enough but can't give up just yet - they might get better apparently and I have my daughter to live for. If it wasn't for her, I would be even more severely depressed.

Sorry for the mini self-obsessed rant... I am so tired of no-one ever understanding what it is like and how frustrated I feel over the lack of any change or control over my body. 🙄😥

It's horrible Sympathy

That must be awful to have to live with - poor you. No wonder you feel exhausted. Have you asked for some sort of counselling to help with the emotional side, or really, even just for a bit of regular support and sympathy in real life?

Your daughter is so lucky to have such a strong, brave mother

So the meds are making your mouth and tong move ? Not good at all, can you change the meds?

All antipsychotics tend to have some unpleasant side effects; the ones most likely to cause the kind of side effects OP is experiencing aren't really first-line drugs any more, so it might be that she's already tried the alternatives.

The movements really are exhausting. Have they suggested anything like procyclidine to try and deal with them?

Got a 'twitch' and a tremor in my hand due to neuro problems. Involuntary movements are utterly shite to have to live with. Have a massive slice of but guessing no or even a bloody coffee as that sets the buggers off. Children are amazing, mine keep me going too. I'm told they do get better, the one in my eye is better than it was, so there is light at the end of the tunnel

Thank you for both of your kind replies, and for your advice.

I saw one of the leading neurologists last week in London and he suggested Botox and seeing a clinical psychologist who can help with tic disorders etc. This may help to control the symptoms l have (lip smacking, grimacing etc). It waxes and wanes but it is generally manageable and I can just about tolerate it. Going out in public is crap though and I have awful social anxiety. 😥😔

I've had CBT and stress anxiety, along with practising mindfulness etc. I guess it is more coming to terms with acceptance that my body is not the same and may potentially never will be again.

It does make me feel so low - sometimes like I don't want to be here - but the alternative is too awful to bear thinking about. I just want to crawl into a hole sometimes when I am pulling odd faces and having stupid involuntary limb movements. 😖😥 I guess I may get used to it with time. Life goes on, but it is so hard. 😔😥

It's just horribly grim, dealing with side effects on top of the illness the drugs are supposed to treat Sounds like you're pursuing every avenue, at least, so I hope some of the things suggested will help a little. Agree, it's horrible having to be seen like that in public. Most of the time, people are really kind, though - I still remember a waiter in a cafe helping me with my arm which decided to twist up over my head and go stiff every so often for some reason (I don't know why, but it just felt terribly uncomfortable if I didn't?)

It really is horribly hard and I think you're coping brilliantly in the circumstances you've been dealt.

I was only on the bloody pills for a week last year - they have given me tardive dyskinesia and I hate the stupid GP that prescribed them. My tongue constantly moves, feels too big in my mouth and don't get me started on the grimacing, lip smacking and weird vocal tics (repeating myself).

The neuro said the drugs and my post concussion syndrome symptoms could just have all triggered a tendency to have a functional movement disorder alongside involuntary movements and tic-like 'Tourettisms' - I must just have been so unlucky.

I am so scared to take anything like Procyclidine, amantadine, tetrabenazine etc as they will prob all have awful side effects and possibly make it worse. I am pretty much stuck with it to be honest. Look up 'tardive dyskinesia' (actually, don't!) and see how ridiculous it looks. I wouldn't wish it upon anyone, and psychaitry should hang its head in shame for prescribing such drugs. 😖 God only knows why my GP prescribed me a first gen antipsychotic 🙄 Silly woman! 😖😥

Thank you for your sweet and kind reply. You're right - most people don't notice but I do feel terribly self conscious when I'm out and about. My DH and DD both deal with it brilliantly though and always make a joke about my 'funny waving arms' moving up over my head and DD esp pretends to dance or wave back!

I guess I will accept it with time but it is the constant feeling of being uncomfortable in my mouth (tongue feels too big, moves around etc) that really gets me down - it's relentless.

No use complaining though, life of course could be worse. I have my wonderful family and friends and am lucky to know such understanding people so I will just try to muddle along as best I can. Who knows, it may go into remission in a few years... 😬😔🤔

Oh wow, you have tardive dyskinesia from one week of treatment? That's rotten luck. I was on trifluoperazine for a while and had similar effects to what you describe (and procyclidine didn't help much), but luckily for me they stopped when I stopped treatment.

I wouldn't think you looked silly. I did have one or two horrible comments made to me so I don't discount at all how awful people's reactions can be, at all

I have diabetes probably caused by years of atypical antipsychotic treatment (they can cause it directly, and can also make you put on vast amounts of weight which doesn't help) and can empathise with the frustration of having to live with permanent effects from prior medical treatment. It really fucking sucks. I hope your symptoms do improve.

Was going to suggest botox, that is supposed to help. Also if it's any comfort most people are so totally hung up on their own stuff they hardly notice anybody else's. My eye totally shuts and my face hangs down but I believe most people who say they didn't notice. I don't notice stuff either.

Your DH and DD sound great :)

I know everyone's problems are equally bad but I guess having something that was entirely out of your control makes things harder to accept sometimes. 😖😔😥

Yes, Botox may help and things may improve over time hopefully. I thought about suing my GP when she told me not to look up the side effects but I don't think I'd get very far or it would achieve much. 🙄😳

You're right - medicine is supposed to help, not make things worse. I had a bloody awful breakdown last year after a head injury and post concussion syndrome, and to have TD on top of this really made me so depressed and pissed off. No one could have predicted getting TD from such a low dose for such a short duration and even the leading neuro said it would be very unlikely. Grrr...

Who knows, maybe life will be better in heaven. Or something. 😳😥

Thank you for all your kind replies. I will go to bed feeling grateful for lovely people in the world. 😘

It's just awful, isn't it? The psych who prescribed me olanzapine (the one that probably caused the diabetes) told me it had no side effects, when I asked! Bitch You were so, so unlucky :(

Life will get better without having to go to heaven and you have a fantastic family, from the sound of it.

Sleep well!

Bless you noonoo!x

Thank you, life is bitch, huh? 😬😖

Yep, guess I must have done something bad in a previous life to get such bad luck! Or I could just blame my birth mother who made my brain chemistry wrong with her drug taking... 😥😖🙄

Guess life is a box of chocolates and I got the awful fudge or strawberry cremes! Lol!! 😂😂😂

Ugh, strawberry creams. At least they're not coffee?

Ha ha! I actually don't mind the coffee ones! 😁

Oh how awful for you to get diabetes from your meds. I really hope you are getting the best support for that now too, and that it is manageable.

Doctors think they know best, but I guess it is sometimes their arrogance that ruins as well as saves lives too. The medical profession saved my life when I was born 3 months prem - I just wished it hadn't made it a bugger to live with now.😥

Still, I was too stubborn to try and stick with Citalopram when I was prescribed it last year before the pericyazine so in a way, I only have myself to blame. 😳😖😥 Hindsight is a wonderful thing...

Gosh you poor thing. It sounds like you and your family are dealing with it so well though, you sound so brave. Do you mind me asking which antipsychotic was it that caused the problem? Was it the pericyazine? Xx

Yes, it was. I was given all kinds of psychotropic meds to deal with a breakdown including sleeping pills, diazepam and sertraline / Citalopram - my GP prescribed the pericyazine in desperation as I hadn't slept in about three weeks and crisis teams were being talked of.

So I guess she just acted in my best interest in the time, with no idea that the drugs she prescribed would have such an adverse effect. I guess she just didn't think anyone would react so badly.

One of the five neurologists I have seen said I was probably predisposed genetically yo TD and my psychaitrist said I was just 'bloody, bloody unlucky'. Meh. 😖😔😥

Yeah, fucking drugs! GOK what my current ones are doing

I'll have your fudge ones if you'll have my minging coffee creams. Then I'll look at them mournfully while I suck a sugar-free Werther's 😂 The diabetes is manageable, thanks :)

It's not your fault that you were harmed by the drugs you were given when you didn't get on with the antidepressant And yeah it's kind of hard to reconcile in your head with the times that medical treatment has really helped. I guess we could just think to ourselves that we and the doctors were doing what we thought was the best thing to do at the time.

You've been given a shitty dice roll. But you are doing really well.

Xpost - we had the same kind of thought then, about doing what seemed like the best thing at the time.

😔 you poor thing. I'm sending you my chocolates too, I think you deserve them!