Long term use of anti psychotics

[Ballerina123]

Lately I've been worrying about the long term effects of using anti psychotics.
I'm scared that they can cause brain damage after being used for a long time.
I've been on APs for 6 years now and im not currently well enough to come off them.
I spoke to a MH pharmacist about it and he was not very helpful because he basically said he didn't know the long term effects.

Does anyone know anything about what these pills are doing to my Brain in the long term.

[tamobhuuta]

psychs have never talked to me about long term effects. I think I've been on APs about 6 years too. psychs always tell me meds are necessary for me long term and emphasise the positives of meds. I will be interested to hear what others know.

[not_so_insig]

I dont have any answers but I would like to know too. This year marks 10 years of being on antipsychotics.

[Cacoethes]

I was on APs for 8 years (from age 12) and I had no long lasting ill effects.
There is a theory about my seizures (that started out of nowhere last year) that they could have been caused by a 'build up' of the meds over the years but the meds I was put on was very unusual for the age I was. And it's still just a theory, might not be related at all.

I think that the doctors wouldn't put people on APs so much if they thought that there were serious long term effects, so that reassured me when I was on them.

[Morpheus]

Well, in denmark there has been many studies the past few years that shows that mentally ill people die in general 15-20 years earlier than people who are not mentally ill. This is due to eating disorders, suicide, bad habits, people being less likely to go to see doctors for physical illness but it is also a great number of seemingly young, healthy people who just drop dead for no apparent reason. Studies show that when looking into this, it is often due to long term use of many different antipsychotics, mood stabilizers and anti depressants and lack of monitoring the patients who take them.

To say that these medications are harmless would be a lie. There are side effects and very serious side effects to many of these. Antipsychotics are strong medication that affect your body and to think there will be no consequences is naive. In denmark the psychiatrists are not happy to tell you about side effects, any really. I have very rarely been informed of them and when asking for the leaflets when in hospital, they almost refused to give them to me. I had to bug them for a week before they would hand them over and then they would excuse the side effects with whatever they could come up with. They do not like us to know these things. The studies that were made here were independent and not influenced by medication companies or psychiatrists. The fact that they choose not to tell their patients about side efffects is a huge problem in denmark and they have been greatly critisized for it. Also how lightly doctors prescribe these medications without follow ups etc. When therapy, lifestyle changes and exercise for example, could be just as, if not more effective for many patients. But its cheaper and faster to prescribe medication so thats what the doctors do. You dont even have to be a psychiatrist or have seen one to get these prescribed. Your regular doctor who is in all honesty, not qualified to prescribe these medications, can do it.

Studies shows that people who take several different antipsychotics are in bigger danger than people who are only on one. I have been on medication where i had to get my heart checked at the hospital every three months because they were known to affect your heart in a negative way.

After this has gotten a lot of attention in the media, it is now recommended that mentally ill who are on these medications for years get regular health checks on lungs, heart and so on because the medication can affect them. How they affect your brain long term, i am not sure. However unvoluntary movements can continue even after you come off your antipsychotics. More common in the old ones but still.

I am not saying, dont take them if they help you. However doctors need to make the patients aware of the side effects they can have. Also long term. But as it is now, they are very reluctant to inform patients. One can argue that if they really help you, the side effects may be worth it but that is, in my opinion, a personal choice.

Ive come off my meds for several reasons. I had serious side effects on several of the medications i was on, i had not serious side effcets on all of them. I was on anti depressants, mood stabilizers and antipsychotics for ten years before coming off them. I was forced and scared into taking them by professionals telling me i would die if i didnt, that i would become so psychotic i got brain damage etc. If i refused to take them they threatened police and section. i even had nurses coming by in my flat every day to make sure i took them. To me, it seemed more like a terror campaign than help. I was never helped particularly by medications in all those years and they tried pretty much everything. When i said they werent helping, they said they might without me knowing and refused to listen or just gave me more. In periods i was on four different medications at the time along with prn. I was drugged to the point where i could do nothing but sleep 20 hours a day and to me, that is not life quality that they promised it would give me. I may not have been psychotic but that was because i wasnt awake.

I came off my medication four months ago and again, was threatened with police and section however this time i wouldnt let me scare. On medication i still had several long hospitalisazions a year, i still got psychotic, depressed etc. And on top of that, i had many side effects. Coming off the medication was the best thing i have ever done for myself. I havent felt this alive for ten years. I can feel again. Angry, sad, happy and so on. Smething i havent been able to feel for years. I am more present in conversation, my passion about things is back. I can concentrate better and i am far more creative. Ive started doing things i love doing that i havent done for years and i have more energy, to be social, to do things during the day, to cope with my illness and so on. I still hear voices but no more than when i was on meds. The same with my paranoia, delusions and so on.i am not saying i am no longer ill and have no symptoms, but i am better suited for coping with them. Everyone around me comment on how i am far more talkative, have come more alive, am more open and just completely changed. My psychiatrist and psychiatric nurse have even admitted that i made the right decision even though it was against their advice.

Iwouldnt recommend doing as i did. Coming off meds against advice and cold turkey but psychiatrists are not always right. This is my body and brain and i can feel if things are working better than anyone and medication wasnt working for me. I think it is a flaw that whenever someone get a psychiatric diagnosis the first and most important treatment is always medication. You dont need medication for every mental illness. There are other and often more effective ways to treat them and medication should never be the only treatment. Not everyone responds to medication either. I am a clear proof of that.

Whether you are willing to risk the side effects is our choice and you should never be scared into taking medication if you do not feel it is right for you. I spent years trying to convince professionals it wasnt working and begging them to at least let me try without but they refused. I was deemed as uncooperative and noncompliant because i had an opinion about my own treatment when in fact, it turned out i was right all along. I regret i let them scare me into taking all that medication for so many years. I regret the side effects i had to deal with and still i only got worse year after year. It definately wasnt worth the side effects for me but i wasnt allowed to choose for myself. And that is wrong. It is the patients choice if they think they are willing to risk their physical health to maybe get better mentally.

I was also so unfortunate to experience one of my fellow patients at the hospital dying from side effects so that has affected my opinion as well, obviously.

[consequential]

I have been on anti psys for 8 years and contracted an auto immune disease and put on 7 stone from them. I don't know if the disease is from the meds but the weight gain is and I believe this is the reason for the disease. I eat very well, very healthily but due to the arthritis my mobility is reduced to to the point where i have disabled parking. I am being forced to take a high dose of drugs that my body cannot tolerate and they won't listen to me. I had a terrible childhood and this is the reason i am a fking mess but I know I need meds but if I take too mush I feel very sick and sleep way too much. I have final exams and a dissertation to write still and have been in hospital a month and don't know how I will ever get back to full flight again. anyway i digress i believe in meds but not to the point where they stuff them down your throat knowing that you can't tolerate them. they gave me invega as an inpatient and I was shaking, weak, fainting, unable to function and when I complained they said it was in my head cos I didn't look sick. I came off meds for nearly a year and i was fine. I hope to again once I find people who care about me enough to stick around.

[not_so_insig]

I dont know if you know this, but in the UK anyone with a serious mh problem is entitled to a yearly physical check from the GP. Sadly many GP's dont do that automatically, if you want it done, you have to pester the GP. I know someone who got a letter from their GP, mine doesnt bother. I havent seen my GP for the past 3 years, maybe more. Certainly I have never received such letter.

My psych makes me go for an annual blood test which tests for diabetes (amongst other things, I am not sure what they test for) and an ECG, so if there was any long term effects it would be picked up. I am on Clopixol, if I were on Clozapine then I would have much more frequent blood tests.

So yep there are safe guards. The doctors/psychs may not know the long term effects, but a good doctor should be putting in procedures to monitor your physical health. If you are concerned that your meds are effecting your physical health, then you should make an appointment to see a doctor.

[consequential]

What would be considered a 'serious' mh problem?

[not_so_insig]

What would be considered a 'serious' mh problem?

I dunno, but that's what I have heard. My guess is that it would include schizophrenia and bipolar. Basically anything except for depression that isnt treated by psych.

[bipolarschizo]

i'm schizoaffective and was put on haldol for about 7months. it was making me lactate from the beginning(antipsychotic induced hyperprolactimia) and after that long of being on it and not wanting to say anything to the doctor because it was helping me mentally, i told him finally and he had blood work done then an mri done because my prolactin levels were through the roof. there ended up being a cyst on or in my pituitary gland from all the prolactin being excreted there(i assume). so i was taken off of it and it slowly stopped(the lactating), but other antipsychotics do it to me too sometimes like the one i'm on now. there are other medications to counter some of the side effects that antipsychotics sometimes give, i plan on looking into that soon myself. i don't know much about long term overall, but it never hurts to look into the medication you're taking to know what you're taking and maybe even look for as far as a reaction goes.
i try not to think about what medications does to the human body long term because i'm on so many and have been on so many for a long time. *sigh* life.

[tamobhuuta]

I am on clozapine and have a blood test every month. i also have received letters from my GP inviting me to a physical exam because i have a serious mental illness. my sister has severe depression but i don't think they've offered her the same thing.

[Ballerina123]

Thanks for all the replies. I'm in olanzapine and lithium and get 3 monthly checks due to the lithium and 6 monthly checks due to the olanzapine.

I think I may ask my cc or psych next time I see them and see what they say x

[consequential]

i'm schizoaffective and was put on haldol for about 7months. it was making me lactate from the beginning(antipsychotic induced hyperprolactimia) and after that long of being on it and not wanting to say anything to the doctor because it was helping me mentally, i told him finally and he had blood work done then an mri done because my prolactin levels were through the roof. there ended up being a cyst on or in my pituitary gland from all the prolactin being excreted there(i assume). so i was taken off of it and it slowly stopped(the lactating), but other antipsychotics do it to me too sometimes like the one i'm on now. there are other medications to counter some of the side effects that antipsychotics sometimes give, i plan on looking into that soon myself. i don't know much about long term overall, but it never hurts to look into the medication you're taking to know what you're taking and maybe even look for as far as a reaction goes.
i try not to think about what medications does to the human body long term because i'm on so many and have been on so many for a long time. *sigh* life.
This drug causes tardive dsykinesia and I am terrified I will gte it and be shaking in a corner years from now. One doctor refused to give it to me over this but the other said I would be ok. I manage to do well academically on it and get work doen and get washed, cleaned and cook etc and drive but I am very bad around people on it and it's given me funny thoughts and intrusive thoughts and anxiety

[consequential]

Thanks for all the replies. I'm in olanzapine and lithium and get 3 monthly checks due to the lithium and 6 monthly checks due to the olanzapine.

I think I may ask my cc or psych next time I see them and see what they say x
How does this work for you? I found I was very outgoing on it and was able to go back to drawing big time but the eating became too much and I put on a lot of weight but what does it matter now as I still managed to put on so much after all that. Did you put on weight? You don't have to answer if you don't want x

[Ballerina123]

How does this work for you? I found I was very outgoing on it and was able to go back to drawing big time but the eating became too much and I put on a lot of weight but what does it matter now as I still managed to put on so much after all that. Did you put on weight? You don't have to answer if you don't want x

Olanzapine has honestly been my saviour. The next choice was clozapine if I didn't react to the olanzapine. It has helped with my paranoid thinking, my voices are quieter and my visual hallucinations are almost non existent (I get like one major hallucinations a week now where as I was getting them daily before).
I'm schizoeffective bipolar type and the olanzapine has also helped to stabilise my mood. I have fewer mood episodes on it than I had before.

Yes I did put on weight but not a lot. And to be honest I'd rather be a few pounds heavier than endure the horrible hallucinations I was having before.

It doesn't get rid of all the symptoms, or at least it hasn't for me, but it has reduced them so that I can manage my illness better day to day. In fact since being put back on it occupational health at my university has clearer me fit to go back on my nursing course. I really want to be a nurse so I decided I was ok with a little weight gain if it means being well and being able to go back to my studies.

[consequential]

That sounds really good I am glad for you. I think mine was just major as I put on a stone in less than a week so it was obvious there was something wrong. You are lucky it has worked for you and I hope the nursing goes well for you.

[HildaOgden]

I've been on an anti psychotic for over 10 years. Been on several different ones & am now on Clopixol depot. I get concerned over long term side effect,s. I've never had an ECG related to a health check. I know I'm on the serious mental illness register (I've got bpd) at my GP surgery, but I've not been sent for a health check. I do have blood tests every three months as I'm on Lithium though.

I'm reducing the frequency of having my injection as a way of reducing the amount of Clopixol in my system, this is as agreed with my psych. He know I want to come off it.

[Wonderland.]

I'm on Olanzapine and get regularly checked by my doctor every few months, with bloods and BP. So far the only thing that has been effected has been that my weight has gone up, but it's slowly coming back down to a healthier level, so I'm not worrying too much.