The Future

[Raelyn_Fenn]

I’ve been thinking recently if I want to come off meds, and I’m now leaning towards staying on them.

But I’m really concerned about serious irreversible long term side effects in the future.

Parkinsons and Tardive Dyskinesia.

I had a friend who had parkinsons. It was incredibly sad to watch how the disease took hold of him. His weight completely plummeted and he got psychotic, I guess from the dopamine raising med, he got paranoid of his own wife trying to kill him. And he was bed bound.

This kind of stuff makes me want to come off my antipsychotic.

But I want to move into a place one day that I can only afford from working full time and if I relapse it could ruin that.

Psychosis is truly challenging disease, so many important things to consider due to unpredictability of the disease.

[Greenmind]

I have dystonia (oculogiric crisis) every week. But i have the sz under control.

I fear future. I have to work on see the future with pink glasses.

[Marbles]

I think TD is quite rare nowadays… Maybe the future brings new medicine It’s quite common disease with a high cost to society so we got that going for us…

Do you have any other plans for the future?? Something to keep you going??

[Malik_27]

I know the literature says it can cause these things, but I think the stats are that it is quite rare.

You have to remember that the body is constantly regenerating, whilst it may feel like you are close to developing symptoms it won’t happen likely reason being, you just aren’t taking enough of it and aren’t confined in terms of activity in your environment - meaning, you are free to upkeep the right amount of dopamine even with a antipsychotic; something as simple as listening to music or eating the right foods for example.

I agree though. Psychosis is too unpredictable. Way way way too unpredictable.

I’ve recovered a lot from where I was initially in the worst of psychosis and worst of strong medication however I still carry the fear of breakdown, I have no idea if I’ll ever be able to hold a full time job even though I aim and can be offered full time roles.

I’m the same. I want my own place. And I want to be self sufficient completely.

[Raelyn_Fenn]

I plan on getting a job once Lockdown is over. I’ll be a cleaner, and I’d like to maybe change to another job over time. If I can cope.

I want to live out.

Continue with my hobbies, take on new hobbies.

Maybe even volunteer but depends on how much resting time I need from work.

… Also to get my treatment for a personal health condition…

How about you?

I’m on a low dose meds now so that’s what helps me personally make these plans.

[Raelyn_Fenn]

You say the body is constantly regenerating, yet our risk of getting parkinsons is higher than the normie person… That’s the thing.

But just gotta try and look after myself in efforts to reduce risk and hope for the best?

Idk, sometimes I still want to come off but it seems mad to do that too.

It is a tough decision to make, especially as I am not sz, I am psychosis patient so my pdoc even gave me the approval to come off, it’s very tempting.

[Malik_27]

Yeah, your dr will be in a good position to hell you most tbh, and only you can tell from your own experiences if you feel you can manage stress and triggers.

I’m like yourself, psychotic (bipolar type) but another dr said schizophrenia. I’m starting to think it’s the former and can understand why a dr would say that I/you can stop using the antipsychotics,

My advice is that use them for as long as you know you have security, eg a stable environment and then come off with the understanding that those around you (friends/family/workplace) are aware you have had a past of psychotic illness. This way, if anything goes wrong, you can quickly access treatment

[Raelyn_Fenn]

Aw thanks for the advice.

Not sure if I will go off yet but that is solid advice, yea.

You remind me of my younger self cos of where you live and the fact you go to uni.

It brings back memories haha.

Anyways, wishing you well.

[Marbles]

I plan on getting a job as well. And saving up to buy a little property in France and build a cool little house to live in with a nice garden. I have family living there and I know a lot of people in the area. It’s what keeps me going…

I’m also not diagnosed as sz. In two years I can try to get off meds as well. I’m probably going to risk it once I kicked all drugs out of my life.

What hobbies do you do?

[Dunno3x]

[Raelyn_Fenn]

@Marbles

I’m probably going to risk it

Good luck, hope it goes well for you :), yea my doctor says that sometimes drugs can worsen mental health, not always but sometimes. I think that it may have worsened it in my case, especially cos I took a big amount, I think, in one session and my body seems to be susceptible to it. but kicking it out of your life sounds like a really good idea. and could probably really help a lot

I like art… used to be passionate about jogging too and pilates but can’t do those things on meds.

I also have a keyboard in my room that I have not touched in a long time. So I want to play it one day or else sell it.

Take care

and sounds like you have some really nice plans!

[Raelyn_Fenn]

lol how lovely and depressing

[Three]

Never come off your meds
Only thing keeping any of us sane and alive and with any prospects

[rogueone]

I’m 50. I got diagnosed at 29 which was late and wasted a lot of time.

Your young enough and that is good. Life tends to get in the way of most ideas so keep living. Connect with people. Do things you enjoy. Hang out with friends or other people who like what you do.

One day you wake up and your 50 and it’s like gawd…didn’t that go fast! Best thing to deal with the future is to deal with the now. Live in the now but plan for things you like and just do them…it will all sort itself out and life often gets in the way of metaphysical plans. Love, friendship, family, community. All good things to invest in!

[Raelyn_Fenn]

Thanks Three, needed to hear that. I probably will stay on them, though there’s still a tiny part of me that wants to come off

[LevelJ1]

I think you have to be on it everyday for years for it to be a higher possibility of getting Tardive.

if you dont have chronic sz and your pdoc gave you approval to come off it. It isnt a terrible idea to try. If you have all your coping mechanisms and stuff in place it may be something you could do.

I still get recurring psychosis is with my bipolar but it isnt extreme. hearing voices are a nuisance, intrusive images and weird visual stuff is more disturbing for me. I also don’t get delusional, I use logic and reasoning everyday and have many good techniques and therapy stuff I have practiced for the past 10 years. I have a great support network of friends family and doctors too.
So my psychiatrist is ok with me having an AP as needed instead of daily. She said that puts me in the risk taker category. She has other patients that do the same method.
I would admit it is riskier because if you don’t catch it in time if your heading out of control then it doesnt go well.

I know the forum is insistent about daily meds but thats because theres a lot of people with severe illness here and it is definitely the safest approach.

[Three]

I came off once properly, led to 9 months of psychosis, and 3 months in hospital
Because I was then susceptible
I spent another 9 months in hospital subsequently

[Raelyn_Fenn]

The thing is, it would be an ‘attempt’ to come off aps. As Quoted by pdoc. Meaning that she thinks I might relapse too. I don’t know if I wanna risk some important things. Like where I might end up living, my job, a future different dose of med etc etc. If I relapse. Having said that, hopefully I don’t even relapse on meds either because I’m on a low dose atm.

So it’s good to hear your story and you know what you feel most at ease with, out of all your options, but for me, I’m still leaning on not coming off.

Thanks for sharing though. It is good to hear.

[LevelJ1]

yeah that sounds good to stay on it.

[karl]

not in a million yrs do i want to come off antipsychotics…even if there is a risk of parkinsons…imho, i believe sz ia worse than parkinsons…id rather run the risk of getting iit than be persecuted all my life