Life is good and stable but I'm having a really hard time with my meds, can anyone advise?
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I've been dealing with schizophrenia since I was 16 years old (I'm now 30) and am still taking 600mg of Quetiapine (or Seroquel) XL (prolonged release)
This medication works for me, I'm asymptomatic in terms of the hallucinations and delusions, however lately the side effects have become a bit much. I don't want to try another medication in case I relapse in the process, as the idea of going through that again is horrific.
I'm really looking for some advice on which of my side effects might be the easiest to manage, from other experiences of people on this platform. I'll list them here and ask my question at the end, I hope that's okay.
Tardive dyskinesia, meaning I have involuntary muscle spasms primarily in my facial area. I can be on a phone call speaking and my mouth will suddenly decide to just flail around for a few seconds and I trail off, which usually prompts a concerned "are you okay?" from whoever I'm speaking to.
Then there's the general tremors that I get in my hands, it tends to be when I'm focused that my hands won't stay still. I cut my hair today and had to use 2 hands to hold the clippers because I couldn't hold them still, my hand would not stop shaking.
I take my medication on an evening, go to bed, and then I have to get up to pee every 5 minutes for about an hour or 2. No exaggerations either, I will pee about 20 times before I fall asleep.
In the last month or so I've also started having quite angry outbursts at myself whenever I make any kind of mistake, no matter how small. I knocked my cup of iced coffee over today and hit myself in the head 5 times, which left a headache and a ringing in my ear. I can't explain why I got so annoyed and why I hit myself, but it hurts now and I know it'll happen again.
This one is probably the most frustrating: appetite. I never want to eat food, ever. I get very hungry, get some food and then realise I have no appetite to actually eat the food and will instead just drink water. Eventually I get so light headed and weak from hunger that I have to force something down just to keep going after several days without any food. I have started trying one of those "meal drink" subscription services where I mix a healthy powder with water and milk and drink that, which I can just about manage, so I have a solution but it's no life constantly drinking vanilla flavoured drinks and not being able to enjoy the foods I used to love so much.
Does anybody here have experience with managing such side-effects from Seroquel or even any other medication and if so please, which ones did you manage and how did you do so? My healthcare is managed by my GP currently and I can't get help for all of these side-effects with my GP, they forget me the moment I leave the room and any subsequent conversations are just starting from square 1. I need to try and pick 1 or 2 side effects to try and deal with, to lessen the impact of the others, because at the moment my brain feels overloaded and I'm terrified that the stress with cause me to relapse.
I'm sorry for posting such a huge thread here, I am brand new to this community and I hope this isn't too much for people to read through - thanks if you did make it this far.
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