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  • TDS Moderators: AlphaMethylPhenyl | Eligiu | deficiT | paranoid android

Mental Health Coming off Invega Sustenna (paliperidone)

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hey guys and bad robot,

i have been on xeplion for over 8 months now and its so difficult for me. this drug makes me feel panic, anxiety, depression, crying attacks, aches all over my body....its so very hard have you improved since you hav taken it? i read it took a while and you didnt feel better how is it now? are you back to normal again?
 
Hi everyone,

Im French, sorry too if my english isn't perfect, as long as you understand me that's the main thing.
After I had a brief psychotic disorder (due to an emotional shock and burnout) the doctor gave me 4 shots of Xeplion (European version of Invega Sustenna): 150mg + 1 week later 100mg, then 75mg the next month, and 75mg the other one, and I've stopped the medication given that the first injection I had lost my emotions,my periods, motivation, as you I've experienced anhedonia and my mind was blank. Now it's been 6 months that I've stopped my injections, I recovered my thoughts, I talk more, I have more concentration and memory, but I still have no emotions nor motivation. In France we have Drug safety centers, so I've called them to explain my case and they told me that I will recover my emotions and motivation 8 months after the last injection, time of the drug to be entirely eliminated in my blood stream, so I hope I'll see some improvements within 2 months... I'll keep you updated :)
I know a guy in french forum who had only 2 injections and he told me that he recovered everything 6 months after he stopped the treatment, now he is like his prior state before the injection.
It's a pity that Narshe81 stopped posting, I would like to know if he recovered and especially when, reading a post like Khaverim7's (page 16) gave me hope!
 
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16 weeks for me
Noticing slight improvements, talking slightly more, smiled at a few things recently and managed to get to the cinema to watch star wars. Its still a slow process, still no sex drive, no motivation or interest in previous pursuits, the depression is still almost constant, got to be thinking its going to be 6 to 8 months to recover from this poison.
Still waking up anxious and depressed, got to be thinking thats from my previous 3 years constant weed smoking, having a couple of beers at night just to chill out, it helps and I manage to feel almost normal, stopped having a joint at night, the weed scares me a bit and its hard to chill out on it at the moment, just don't feel mentally strong enough to handle it although its tempting me just to try to cope with the depression and to try and get myself motivated.
You've got to laugh, had a pysch meeting last week, told him how I'd been poisoned in hospital and how I was feeling, even mentioned the sex drive and all he offered was 25mg of seroquel, jeez another AP and its meant to say on my notes that I have a bad reaction to AP's, god help me if I ever go back in hospital, I'll be getting injected with more of the poison, no dopamine agonist for me, thinking about making another doctors appointment just to see what he offers, I might even settle for an antidepressant although I could self medicate with weed for a couple of months, that sounds more fun. He even had the cheek to say that the poison was out of my system and that it wouldn't be affecting me anymore despite me telling him the half life and what I have read of other peoples stories. Got to see him again in 6 months and politely refused the seroquel. They really haven't got a clue what the poison does to people.
I did read that the poison is active in your body for 125 days, although that could be the minimum half life times 5, there's just not enough information out there, it does look as if it takes at least 6 months to recover, I thought some of the previous posters would return to give us an update, but I suppose when you recover you just forget or its a bit depressing to want to, I'll try my best to return next year, although I need to get out of just surfing the internet all day and try and get on with my life. Not to be to depressing but I did read on another forum that narshe hadn't recovered in a year, thats just hearsay though, whatever happened to redmanone aswell, come on guys its the new year lets have an inspiring update.
 
A great tool if you want to visualize how dosing affects paliperidone plasma concentrations following administration of invega Sustenna, and have a rough estimate of when the drug will be eliminated: http://www.educationaldoseillustrator.com/pp1m/schizoaffective
 
This is my reply to someone who PM'd me.

Hi [redacted], thanks for the message. FYI, I generally hate this website because of the way the admins run it (insecurely) and so I would encourage you to not depend on me as a resource. It would also be better for you to ask these questions in the invega sustenna public thread (if you haven't already); I will copy/paste my response to you into the public thread so that other people in similar situations can benefit from the answers.

I don't know what "xeplion" is, but I was given something called invega sustenna.

After about 10 months or so I started to notice the effects to noticeably wear off. After two years the effects were mostly gone.

I was also given anti-depressants because Invega made me suicidal (first Effexor, then Welbutrin in addition to Effexor). I am convinced that anti-depressants are pretty much just placebo in terms of fixing depression, but I mention it because they do mess with your head and do come with side effects.

As far as getting better, if you had only two shots well that's good news because that's exactly how many they gave me and I was able to recover.

My recommendations for getting better are:

1. Take time off to relax and do simple exercise like walking, biking, swimming. As much as you need. I took all of 2012 off.
2. Eat healthy. That means: avoid all fast food. Try going vegetarian. Eat plenty of vegetables. Explore foods you've never tried before at Whole Foods and see how they make you feel. Make sure to take Vitamin B Complex. Avoid all junk food.
3. Take care of yourself. Pamper yourself. If you want to watch things on YouTube for several hours then watch things on YouTube for several hours, or whatever else appeals to you.
4. Make sure you are surrounded by people who love you.
5. Try experimenting with nootropics, but make sure to do them right (common mistake for example is to take piracetam without proper amount of choline). If you decide to try this, do plenty of research first. I did take nootropics as a way of self-medicating after the imbecile "professionals" nearly killed me.
6. If you consider yourself intelligent, don't let people make you doubt yourself and become subservient to an imbecile psychiatrist. Those people are way over-valued in our society. Especially in some parts of the country, they think they know more than they actually do, and this arrogance and ignorance causes them to either kill or maim people. Pity them. Good psychiatrists do exist, but depending on where you are you may find it better to go to a General Practitioner.
7. Be patient. Force your perspective and interpretation to change so that you view the whole thing as a forced vacation.

Hope that helps!

Much love,
Starkid
 
@Bad Robot, how many injections did you have and what were the dosages ?

@Starkid, have you recovered your emotions and motivation? Is it after 10 months or 2 years ?
 
@Starkid, have you recovered your emotions and motivation? Is it after 10 months or 2 years ?
Click to expand...

If you can't tell by the anger behind my words when I discuss this topic, yes, I have recovered my emotions.

Recovery takes time. It is a very gradual process. You can't monitor it by days, but by months, and just ignore the first 7 months (or more, depending on how much of the poison they gave you).

After 1 year, like I said, I started to believe I could recover. After 1 year I went back to university and finished my final year of university. I sometimes had to rely on large doses of stimulants (depending on the work load). I drank lots of Rockstars. Be careful with stimulants however. First recover, then if you need them, try them and monitor how they're making you feel. Excessive stimulant use can itself lead to major problems for some people. Remember, I also have ADD/ADHD, so for me stimulants are more important than for other people.

After 2 years I'd mostly recovered. My brain will never be the same as it was before, but in some odd way I do feel stronger for the experience. My contempt for crappy doctors is certainly larger too. And looking at this thread I see that something must be done to bring this problem to the wider public conscious. I encourage everyone to become evangelists and raise awareness of the problem (after you've recovered).

I am more sensitive to stimulants now, but not as sensitive as before Invega Sustenna. It's been about 3 years now. I am back to my original mental sharpness (or close to it) and I can feel emotions. As a somewhat positive side effect, I don't get anxious easily.

I understand and remember how dark it felt, how hopeless it felt, but there is a light at the end of the tunnel. Again, see my advice and think of it as a forced, long vacation.

Much love,
Starkid
 
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Thank you very much Starkid for your answer, it gave me hope ! :)
I only had 4 injections of Xeplion which is the european version of Invega Sustenna (the initial dose:150mg+100mg, then 75 mg for 2 months). Some pharmacists told me that it would take 8months after the last injection to recover everything, now I'm at the beginning of month 7, I'll see if in March I recover my emotions and motivation.
How did you manage to return to university, have you felt motivation ?
I had to take a year off this year and cancel my university registration because 4 months ago it was hard for me to concentrate during the courses. Now I recovered everything excepting my feelings and motivation.
According my half lives calculations (I took 50 days as the max half life), I'll have 0.53mg in my blood in september 2016, so I think I can return to Uni.
What do you mean when you say that your brain will never be as before? Is it about the intensity of emotions, creativity, speed of thoughts ?
Sorry if I'm redundant it's hard to find people who recovered from this drug!
 
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How did you manage to return to university, have you felt motivation ?
Click to expand...

Well I finished at the end of 2013. I was only given two shots so perhaps that's why I was able to go after about 1 year. YMMV as they say.

What do you mean when you say that your brain will never be as before? Is it about the intensity of emotions, creativity, speed of thoughts ?
Click to expand...

I would say that mostly I notice it in terms of my response to stimulants. To this day stimulants just don't affect me as much as they used to. I used to be quite sensitive to them. Now I am less sensitive than the average person. However, emotions, creativity, and speed of thoughts are within "good" parameters (as evaluated by me). I am satisfied with my recovery in other words. It could have been worse, but since my decision to not kill myself I've actually been able to accomplish quite a lot. There is a sense in which I am stronger. True, Invega does seem to have done some permanent lasting damage to some small part of my brain (related to stimulants), but the part of me that survived appears to be stronger than it otherwise would have been.

I don't thank Invega for anything. I still consider it to be an entirely unnecessary poison. I would have preferred to have had a more intelligent doctor than the one I had. But, I can't change the past, I can only move forward, and I can tell you that it does get better.

Again, find people who love and support you, relax, and make the most out of your forced vacation. During mine I became the strongest (physically) that I'd ever been by spending a good amount of time in the gym.

Another piece of advice: if you catch yourself feeling sad, just tell yourself: "Give up on being happy." This, at least for me, works whenever I get sad in a paradoxical way. I guess there's a sense that if you "want to feel happy" or are unhappy that something isn't right (and there's a "wanting" for things to get better), then that "wanting" itself is actually causing part of your unhappiness by the fact that it is repeating to your subconscious that you don't have happiness (or whatever it is that you want). So if you give up on wanting that thing and just resign yourself (spiritual people like to use the word "surrender"), you paradoxically feel relief because you're no longer grasping at something you don't have. That grasping takes energy and itself creates mental anxiety/frustration/despair. Just be like, "things are shit. Yep. Maybe time to watch YouTube or take a nap."
 
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Oh, one other thing: some stimulants used to have zero effect on me at the height of my Invega experience. Now I am able to take ADHD medication again and it does do its job, I just have to take a larger dose than the average person.
 
Thank you very much for your advices :) I'll keep being patient for my recovery
Do you think that 0.53mg (in september 2016) will be enough to block emotions and motivation?
 
Yes, I think by September 2016 you'll be feeling much better and you'll most likely be ready to go back to University. Just relax and make sure to take care of yourself, eat healthy, don't freak out, don't grasp, stay with loved ones, etc. I've gotta head out and work on stuff now. Warm wishes and much love to you & everyone else here!

- Starkid
 
Thanks for your share ! :)
Have a good day or evening (I don't know what time it is in America) but for my case I'm going to sleep, it's 1:06 AM in France lol

Decisive
 
Hi everyone,

Ive been on Invega 6 mg tablet for 9 years and 9 mg for 1 year so far, how long will this be in my system if I stop today?

The reason Im thinking of going cold turkey is because my psychiatrist is against tapering off and wants me to stay on it. I cant believe someone else has the nerve to play God and tell me what goes in my body. Ive been requesting a taper off for a year now. I want my old self back when I was in my early twenties and everything was interesting and weed actually felt good.

Whats the difference between God and a Psychiatrist? God doesn't think he's a Psychiatrist.
 
Everyone plays god with everyone else. We all have our opinions.

I sure as hell don't know advanced biochemistry.

You can't go back, only forward.

Ultimately, it's up to you to get better.

I can assure you that any decent psychiatrist doesn't view themself as God.
 
Does anyone feel like even if their not there old self one day that its still the point of not being on meds that conquers all? Ive never felt good on them so what justifies being on them if you can control symptoms and live life even without a pill in your gut? Yes people experience pyschosis but people can also realize they need to stop and think that whats going on is an emotional repression that needs to be dealt with. Theres not a lot of info out there on how to maintain your life without depending on antipsychotics which is part of the problem. Did you guys know hearing voices is normal and a ton of people who never went to a hospital in their life experience it. They learn to unravel why its happening and try to use reflection and healing to deal with it. Im not perfect at this myself but just laying it out there because we really need to have a way for people to live without a psychiatrist controling their lives.
 
Ho-Chi-Minh said:
Everyone plays god with everyone else. We all have our opinions.

I sure as hell don't know advanced biochemistry.

You can't go back, only forward.

Ultimately, it's up to you to get better.

I can assure you that any decent psychiatrist doesn't view themself as God.
Click to expand...

They may not view themselves as God but their actions speak it when countless patients of theirs are getting no better or worse but just stuck in the system waiting fir their next refill.

I dont play God with people. I dont choose who dies and who lives. I give money to a homeless man not take his jacket. Most people dont have authority to make these types of decisions that could be detrimental to someone. But Psychiatrist deal with the needy and they treat them as a customer with no real future or ability to make their own decisions.

I know software development you know wood working. It doesnt mean knowledge proves humanity.
 
Decisive said:
@Bad Robot, how many injections did you have and what were the dosages ?

@Starkid, have you recovered your emotions and motivation? Is it after 10 months or 2 years ?
Click to expand...

I had 3 injections, the first injection I had was clopixol an older AP, I had a bad reaction my leg got a constant shake, I could hardly speak and it was a struggle to even swallow food, in other words I was drugged out of my mind and had to take procycledine for 3 months just for the side effects, then the psych decided I needed invega just as I was coming round and I received the starting shot and another injection 8 days later, that was 16 weeks ago, to say I'm bitter about my treatment is an under statement, why I was given the invega injection in the first place is a mystery, even my doctor doesn't understand it, I should have been given tablets not injected with more poison, especially after already having a bad reaction to the first AP. I can hardly remember the first months stay in the hospital and lost a lot of weight with not eating, all for getting manic from smoking too much cannabis. I should never of told my mother to take me to the hospital in the first place. All I needed was some diazipam to bring me down, but hey ho you can't change the past or the incompetance and dangerous treatment I received during my 2 month hospital stay. I just worry about ever going back in again and getting shot up with the poison again, I'd be chilling with a joint to help me through the next few months otherwise. I'm having a couple of beers at night just to cope with the constant dwelling of this poison still being active in my system.
Thanks for the update starkid, did you have any problems with the sex drive and when did you notice any improvements. Its a boost when people return to say they've recovered or are doing better and good advice about just relaxing and accepting the suituation, I've noticed an improvement from month 3 to month 4 and am just trying to accept the suituation and the depressed state I'm in at the moment and realise its not permanent, I'd be suicidal otherwise, I don't think antidepressants can help and I look back a month ago and can see the improvements I have made. I'm slightly able to chill out in my own company, but I'm still spending my days at my parents house for the company and free food, its wierd that I don't like being by myself, I never used to be like that before the injections, that the sex drive, the depression, the lack of motivation or any interest in previous hobbies and being scared of getting to drunk or high are my main problems at the 16 week stage.
I did manage to go to the pub last night for a couple of pints and some food, was tempted to have a joint on my return home, but I'm weed free so far in 2016, anyhow keep the updates coming, lets keep this thread rocking, maybe narshe will return one day.
 
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