APs and brain shrinkage

Yeah I think that this will be best. I'm scared that I won't get accepted though, even if they offer therapy, which I'm not even sure about - got to get my Mum to ring them...

Tapering after a year or so may well be the norm, but I wasn't diagnosed as 'first episode psychosis' or even schizoaffective until the end of May. Before that it was always 'psychotic features' cos no-one ever understood how significant/persistent it was.

Anne

I promise that I will look at that youtube video, and I'm really grateful that you posted it for me We're having internet issues so I can't watch a whole video at the moment and am using my phone to reply. They're coming tomorrow to fix it and I will watch it then, thanks again.

Thank you Mimi I don't feel very tenacious at the moment; instead I'm just wanting to hide in my bed away from the big, bad exam monster :/

I'm very much pro-choice and anyone who is respectful in their differing opinions is very welcome here as far as I'm concerned

Update: I've had the review paperwork through for my disability benefit *cry* which made me realise that I'd be screwed off meds & without my pdoc - they'll think how can I be ill enough for disability if I don't take meds or see a pdoc??! I'm already stressed about exams and being back at my uni house, filling in these forms and waiting for the outcome (which will likely be to go for an assessment cos I haven't been for a while) makes my anxiety go through the roof. I hate filling the form in - seeing it all in black and white makes it sound so depressing, while ironically the voices always tell me I'm faking and will be found out and rejected and then penniless and homeless

I'm also still taking the meds, despite the voices chanting "poison" as I take them. It makes it difficult to swallow them, and I don't even know if I'm doing the right thing!

*Willow*

I don't know if it helps but I think you're doing the right thing. Waiting to get therapy may get you off the meds permanently, you need support to do it. I know that mimi did extensive research and I have my Dr's support. If you get into the first episode clinic you too could do this with a Dr's support. You're in a pretty unique position being in the UK.

Intellectually I know you are right Sometimes, but emotionally I am struggling to take my tablets each night. I'm trying to tell myself that I'm thinking of the long-term. I could go off my meds tonight, but it won't be long before it all gets too much and I go crawling back, so I have to be strong, but it's going to take weeks if not months to organise the early intervention team, if they'll take me, so I'll have to practise the art of patience :/

*Willow*

All I know is if you treat the first episode right then you can have a full recovery. It's just like in that open dialogue project you were talking about where they have therapy and don't progress to sz. That is what I'm hoping for, for you.

My PDOC has told me the same thing, I have read this study numerous times. meanwhile he keeps prescribing new drugs for me to take(his job I suppose). I decided to try talk therapy. I am afraid to not take my anti psychotics as my manic moods are sometimes out of control, however I am worried about the effects of all of the drugs I have taken in my life time and I am seeing some of the effects in different ways. They all make me gain weight too, my husband isn't too happy about that either.
warm thoughts to you.

Thank you Sometimes Me too, for both of us

Thanks for your reply Chilekat! I'm sorry that you're struggling with the same thing I hope that therapy works for you and that one day, not too far in the future, you will be able to come off the meds if you want. It's fine if people want to take meds, and they help without unacceptable side effects, but it really sucks to have to take them through fear; both the fear of what they are doing long term and the fear of what would happen if you stopped them. I understand that all too well Chilekat All the best with your therapy!

*Willow*

I *finally* have internet at home again! So I will def check out that video you posted Mimi.

*Willow*

Thanks for the video Mimi I've finally watched it - sorry it took so long!

There seems to be a number of issues with me coming off meds:

1) It sounds like most people are stable on meds for a time before reducing them. I've never been stable either on or off meds for the last 6 years. So what does that mean for me re medication?? Am I just supposed to be miserable whether on or off meds?!

2) My family and pdoc are very pro-meds so I'm not sure I could talk them into supporting me in reducing meds.

3) I feel that my wellness tools are somewhat lacking, having had little to no therapy.

I feel like I want the impossible: to feel ok and to be off meds. I can't even feel ok ON meds! It seems like everything comes in waves, either the depression, the psychotic stuff or both bad at any one time, but never neither. I don't know how I'm supposed to cope with it though. I'm told to take meds so I do, but they don't help. I try ignoring the voices, which sort of works most of the time. I don't know what else to do to go about my daily life other than to dismiss what I feel and pretend to be 'normal', which is invalidating. And I sometimes wonder that if all my problems stem from low self esteem, then invalidating myself is just going to make the root of the problem worse. If I can only get out of bed by shouting at myself to stop being lazy, then I'm just learning to hate myself that little bit more... IDK.

I think that getting of meds completely/permenantly isn't going to be possible until I get some therapy and develop some positive coping mechanisms that don't denigrate myself. But that's going to take months if the early intervention thing is feasible, or might even be impossible on the NHS, and certainly difficult if not impossible privately (both financially and finding a psychosis-friendly pro-choice therapist)...

I'm just impatient and frustrated by meds that don't work. Pdoc keeps pfaffing about whether the quetiapine/Seroquel is useful or not (I say not) as a mood stabiliser, so I've come down from 500 to 250mg. Before he said 300+ was the mood stabiliser dose, but now he's pfaffing about. If I go home Friday, which it seems I am, I don't have enough quetiapine to last until my pdoc appt, though I have enough aripiprazole/Abilify, so I've decided to taper off rather than stay at 250mg and stop cold turkey. That way pdoc will stop pfaffing about it and consider another option. That's what I've decided to do about the quetiapine/Seroquel. Otherwise I could get a script off my GP, but then he'll fob me off with another 50mg a month drop like he did last month, when I just want to get off the stuff (he's being too conservative given that I've proven I can withdraw 100mg in 2 weeks with this drug with no issues!) I will keep taking the aripiprazole/Abilify for now and for the foreseeable future.

I haven't told my Mum that I'm tapering off the quetiapine and she will be cross when she finds out, but it's my choice really :/

*Willow*

yes, thanks for all the info, all, and yes know what you mean about disability, medication, therapy, etc. It is surely a difficult situation. The best!

Update:

So I saw my pdoc today. My Mum and I travelled up to my Uni house and stayed overnight for my appt, and then travelled back home today until term starts in just over a week.

I was worried that he’d be annoyed that I stopped my quetiapine, though I restarted the aripiprazole after talking to my parents, but he didn’t say anything, thankfully. When I said that I was concerned about the long term side effects of the meds, he said that was understandable, but I didn’t get into whether he thinks they cause brain shrinkage or not because of time (my appt is supposed to be half an hour, and I knew it’d be a long one as it was so I didn’t want to get into a debate; as it was I was over an hour).

Anyway he thinks my cognitive side effects are due to a mixture of the depression and the schizo-part of schizoaffective, not the meds. He says that depression causes problems accessing information, likening it to a computer with a big hard drive containing the information but a small RAM/ability to use the information, which explains my problems with my working memory.

Then he said that schizophrenia-type problems cause problems with working out meaning, which was interesting because lately I’ve been having some problems with attaching the wrong meaning to things I hear or read so it doesn’t make sense. For example, I was vaguely watching a wildlife programme with my Mum the other day and it was answering Qs people had written in with. One of the Qs was ‘why don’t spiders stick to their own webs?’ Now they meant cos spider webs are sticky (which seems completely obvious now!), but I interpreted it as the spider moves to another spider’s web and then his answer made absolutely no sense which confused me until I realised that it had the other meaning. Whenever words have more than one meaning I seem to be picking the wrong meaning for that context lately, which is very frustrating and confusing.

The meaning problems being sz-related surprised me cos I didn’t think any of my cognitive problems were due to that aspect of my sza; it being either the depression or the meds. The voices say that I’m attention seeking and there’s nothing really wrong with me so I was surprised to be actually having cognitive issues from the sz. I wouldn’t even have brought up my misunderstandings if he hadn’t specifically mentioned meaning issues. Anyone else have this problem? What other cognitive problems does sz cause (I don’t really understand what thought disorder looks like when not extreme)?

With regards to the early intervention team, pdoc has agreed to refer me even though they said on the phone that I should be prescribed antipsychotics for less than 2 years and it’s been 3 (only 2 years actually taking them though). He’s going to say he thinks I would really benefit from their multi-disciplinary approach. He also said that he’d talk to a research colleague of his who also works for the EIP team and ‘interest him’ in my case to see if that helps. He is a good guy so it’s a shame I’d have to leave him if I get accepted (EIP has their own pdocs), but I’m trying not to get my hopes up in case it doesn’t work out.

*Willow*

Oh, I am so happy for you Willow! I knew there had to be a way for your doc to get you into the EIV.

As far as the cognitive problems, I have experienced these issues like you have described, things get bogged down and jumbled in my head sometimes. I don't really know how to explain my cognitive issues other than to say it's like I "freeze" up in my thinking and things just don't compute in my head. Simple instructions become very very confusing and impossible. It manifests especially in my math skills. I can have an incredible almost photographic memory of trivial information, yet cannot remember what 9 times 5 equals. I fortunately have learned to compensate. Sometimes the thought disorder stuff is simply thought blocking, and I can't articulate. Sometimes I use the wrong word or reverse my words like a dyslexic does when reading. All of those things have been pretty mild for me. It only recently has come to my attention as being a symptom of MI. I probably could have excelled in school and work if I'd been aware of and addressed it when I was your age. I just didn't know any better. I just knew I was different. Nobody told me what disorganized thinking was. I also have always had trouble making decisions; even down to simply putting an outfit together. ( we talked about this in another thread) Choices become overwhelming and I get confused.

Anyway, congrats, and please continue to update us on how the EIV is going.

I think you are very brave to be coming off of your meds. The voices in my head drove me nuts. It was non-stop endless steam of torment and torture. I have some good ones too but the bad ones were literally hell. Now that i am on meds i can think clearly, and seem to have no negative side-effects. I still plan on coming off of them too, but after awhile of being stabled. I can't even tell my doc of the progress i made because it would mean saying goodbye to my disablity checks. So i plan in 6 months to continue filling the script but tapering off and for good. I miss the magic i used to experience everyday. I would never call them hallucinations either, they were miracles. I still can see some of them, but the meds seemed to change my thinking to a normal average view, as opposed to seeing the choice and the magic in everything. I really miss who I used to be before the voices came. If, when i quit my meds, the voices return i will be forced to continue taking them. Btw I suggest not listening to the voices when they tell you negative things about the meds. They are just tormenting you and helping you to come off of them. Mine tell me they hate me when i take them, because it drowns them out almost completely. I can't say i blame them, but its the ones that actually want me to be healthy that i care most about. I wonder a lot about them, like where they come from, and i find it interesting that they seem to live inside of me. Some of them are my best friends, and i would have loved to keep them that way too, if it weren't for the bad ones who ruined it for everyone. Sorry to ramble. You have my best wishes in your quest.

you are probably just stabelized, you may need to be on your meds longer if you don't want all the voices to come back. Maybe you can't tell he difference on and off meds, but believe me going off them is not a good idea, from my experience. I know i and others are different, but maybe if you try to go off them or lower them some of your symptoms will come back so if that happens recognise the symptoms and get back on them, and i also just wanted you to know i read your post and hope i helped, it's not much, but just what i understand about what happened to me.

@ Serloco & Avlady: It's my fault for causing confusion cos I've updated an old thread. Should've made a new one to be clearer, but I try to avoid creating threads for some reason and I thought it was relevant to this old thread. Anyway I'm NOT coming off meds, much as I'd like to, until I see the EIP referral through (Early Intervention in Psychosis). Until I learn some coping skills, it would be a disaster coming off meds. Anyway, thank you both for your replies and support

Well he's just writing a referral...no guarantees they'll accept me cos budgets are tight and I don't technically fit their criteria. But I am a bit more hopeful than I was when Mum rang the EIP team.

Thanks for replying about cognitive difficulties. It's really hard to explain the problems I have too, and I still don't really understand all of what's going on. Maybe I should be brave and create a new thread about it, so it's clearer?

*Willow*

good info, Willow et all, it is a complex issue, for sure, and different for many of us. I've changed and gone off and on meds and tried all kinds of therapies for so many years now. Have found that holistic therapies and natural, helpful activities, laughter, creativity, socializing etc. have all helped tremendously when I've been able to carry on. The best!

Found this today;

Loss of Brain Tissue in Schizophrenia Tied to Antipsychotics | Psych Central News

Thanks for this Trippin! It's scary stuff!

*Willow*

You're welcome