Has anyone came off of invega sustenna?


#767

The place where I was injected still feels painful from time to time, and it’s been over a year since getting the shot.


#768

yes…If you can’t live without medication then pills are way much better when it comes to “Side Effects”


#769

I’m being scripted 10 mg zyprexa. I’ve been some days secretly dosing half of that 10 mg dose as 5 mg , because I sleep the entire night, then the entire following day on the full dose. If I take 5 mg, I typically sleep no more than 13-15 hours. That’s along with depakote er and topamax.

I’ve heard good things about invega. Mainly because it’s a neuroleptic that is geared toward Sz and not also bipolar disorder. Zyprexa / magazine is for both. Me thinks if I get on a medication geared specifically toward the Sz, that I might experience fewer side effects, as I haven’t been having issues with highs and lows in many months.

What can you tell me about invega?


#770

I’ve been on the Invega Sustenna monthly injection for almost a year now. I started with the max dose of 234mg and successfully got it lowered to 156mg. In the beginning I basically became impotent and my sex drive was gone. I was able to masturbate normally but wasn’t ejaculating anything.

It took about 2 - 3 months for me to come back down to reality but the medication works. Since lowering the dose I’m producing sperm and can masturbate ejaculate fine. I haven’t gained any weight and even the weight I gained I’ve managed to successfully lose it. Went from 183lbs to 169lbs. I don’t hallucinate, voices are like background noise, I’m not delusional, firmly grounded in reality, I have insight into my illness, and overall doing a lot better than before.

I also read about raised prolactin levels and went to get it tested and my psychiatrist said that they were a little high so she decided to lower the dose. I had some breakthrough symptoms but they have all subsided.

I also work 7 days a week as a cashier and try to go to the gym 2 - 3 days out of the week even though I haven’t gone in 2 weeks. I listen to podcasts, maintain my hygiene, work on languages at my job, try to read when I get a chance and basically keep my brain working. I have memory and cognitive issues which my psychiatrist said is because of the illness other than that I usually sleep about 12 hours a day which I want to cut down but I’m working on it. Just thought I’d share my experience and hopefully it helps.


#771

Hi Schizophrenic,

I can see that you are a fighter. Keep going. Thanks for sharing your experience.


#772

Thanks!!! It has gotten better with time. My sleep is definitely improving and my positives aren’t as noticeable. I get hit with low motivation here and there but I don’t have any negatives so I try to hang in there and keep it going.


#773

@jon.kelly are you sure I want my chakras back is your ability to smoke and feel nicotine back? What about your empty head and adhedonic?


#774

Invega sustenna is definitely my miracle drug cause my auditory hallucinations were pretty loud but it makes me wonder if im even schizophrenic cause i never was delusional except before i knew how schizophrenia work or what even was. Other than gaining over 70 pounds its not bad. Hopefully i wont need any antipsychotics after a while cause ive only had one minor episode of auditory hallucinations


#775

John it’s not out of your system can you get a buzz from nicotine


#776

That’s not what I meant. I feel everything. I am literally in the “Zone”. Well I am a smoker…Right now my senses are back. I enjoy smoking …I get buzz from smoking…like before. What matters the most is…I process thoughts really fast and I am full of energy. One more IMPORTANT thing…I enjoy and taste music AGAIN!! …Trust me…the only thing you need to do is WAIT. Hang in there…TIME is on your side…You are going for a full 100% recovery.


#777

You made my day do you hear voices still or is your mind blank? And weed or nicotine?


#778

I’m on 75mg and have been for 26 months. I often wonder if I really need it. I’m court appointed to take it but I honestly think I don’t need it.


#779

Invega sucks. Remember, brain damage is permanent. I’ve been on the Invega shot for almost 3 years. It helped with the voices, and seemed to be a pretty clean drug, but now I’m having difficulty concentrating. Also, you can forget about enjoying drugs or alcohol, it wrecks the part of the brain that allows you to feel high. Like if I have a beer, I can feel it just fine for about 20 minutes, then I feel nothing. If I drink another one I feel nothing. It’s like there’s a window of 20 minutes or so that you can feel the effects, but once it closes you have to wait 3 or 4 days before being able to feel buzzed again.

Cigarettes make me feel nauseated on this drug. When I smoke weed it’s over the top psychoactive at first, then the high is gone in 30 minutes, and if I smoke 4-5 days in a row it gets to the point that I can’t feel any effects at all. It will make your teeth ache, and give you headaches pretty regularly.

The biggest and most devastating effect for me was losing the ability to sleep. I was sleeping 10 hours a night until about two months into the shot when one night I just happened to stay up reading most of the night and that was it. After that night I haven’t slept more than 20 minutes a month. That’s been going on for at least a couple of years although I’m not tired during the days because of it. I do lie in bed the whole night though so I’m able to rest.

Another devastating effect is that I’m probably 15 or 20 IQ points dumber and slower, and I don’t grasp concepts that I know I would have grasped before being on this garbage.

I was also prescribed Visteril to help me sleep (which didn’t work) but it just put me in such a fog I could hardly communicate with anyone because when I spoke, I would forget what I was talking about by the time I got to the end of the sentence.

And I have lost interest in doing anything worth doing. I just struggle to give a damn anymore.

The only reason I’m on this forum is to find out if anybody taking Invega has filed a lawsuit against the company that makes it for causing brain damage, and to see about getting of it. I figure there’s got to be other people who’ve found out they can hardly feel a cigarette or a beer, or whatever. This drug causes mayhem big time and I’m surprised I’ve not read about any recalls or lawsuits regarding it; it’s a blessing for voices, but a terror for everything else.


#780

You dont even get a buzz off weed? Do your voices come back when you smoke?


#781

Wait a second, you sleep 20 minutes a month? Of course you can’t heal the damage, it’s a typo right? Btw I am currently 4 months and ten days off after six shots and I sleep 12 hours a day, I feel like the cognitive impairment is gone, at least that, I’m having some bad withrawal right now, I feel weak, I struggle to walk.


#782

20 minutes a month is an exaggeration I sleep LESS than that. I’m seriously thinking about hiring a lawyer to at least get them to pay for me to be tested in one of those sleep labs; I won’t sleep one wink for as long as they can stand to test me. That seems like pretty good proof to me that my brain is indeed damaged. And no, brain scarring does not heal. Once you scar the brain that’s it. The brain is really resilient, and can move work to parts of the brain that are undamaged, but Invega does so much damage that four or five shots down the road you’re starting to see signs of brain damage. Neuroleptic basically means “seize the neuron”. They seize it by chemically defacing it; it just scars your brain. I have memory problems. If I take Remeron with it I am put in such a fog I can’t be alone or I’ll go nuts. I can barely get to the end of a sentence and I’ve already forgotten what I was talking about. I can’t concentrate for ■■■■. Those aren’t side effects for side effects sake; it is the result of brain damage; your brain is being turned into Swiss Cheese.

Seriously though, make sure you go to bed on time every night. I was getting 10 hours sleep per night until I stayed up one night watching YouTube till 4. When I tried to go to sleep I couldn’t sleep, and it’s been that way for a way long time, like 9 months to a year now. When I fall to sleep, I have incredibly realistic dreams. I just somehow fall to sleep for a minute or two and I dream awesome dreams. But it only lasts a few minutes then I’m awake and trying to keep my dreams in my mind.

If you are finally off that ■■■■ you are very fortunate. It was forced on me. They took me to court and committed me because I told them it’s my constitutional right to refuse a drug. They took me off the shot, but they monitor my medications still. I am trying to get advice on how I might be able to attract a lawyer that deals with this kind of thing.


#783

I’m very sorry, this sounds like a tragedy, I thought it was a typo… Brain damage can be reversed, but of course it has limits… Google neuroplasticity.


#784

Thank you! Maybe this won’t end up as bad as I think it will.


#785

pls help some ppl dont recover


#786

I don’t feel slow because of the Invega pills I’m on, I feel slow because of the pressure in my head, it literally hurts to think too much. Some kind of brain injury.