Mental Health Coming off Invega Sustenna (paliperidone)

[iridescentblack]

I had my special little tricks to keep myself motivated, active, and healthy. Those were just a list of my complaints I'd been wanting to voice ever since I started on injection medications. There were times I was so active in what I was doing that the invega sustenna (or the risperdal consta) seemed to wear off to the point that it didn't affect me. Of course that was usually for a short time, but sometimes as long as almost a month. I don't mean to bitch, because in a way I'm glad this medication was introduced to me... probably only because it was just a phase in my spiritual journey.

 

[invegascrewed]

Honestly I gained even more from the experience -- the suffering was for me a trial by fire. After the dust cleared I was able to gain a paradigm in life again. I am very well off now, compared to where I was while getting Invega-Sustenna out of my body, but even compared to my normal life before that.

I was diagnosed with brief PTSD and BPD (brief psychotic disorder) but it was well determined that I had no permanent mental defect. I had already graduated college by the time I had my 'episode' which led doctors to think Invega Sustenna was a good idea. What I frankly, really, needed was love. Just time, love, compassion, healing -- all these things were gratefully provided through my parents and others, especially a pastor and dear friend.

I can say that from the initial BPD and Invega injection, starting about a week or so after, I had serious depression -- yes, depersonalization. The way I phrased it was that I "lost my paradigm". I didn't have a basis of rational thought -- a foundation from which to build a worldview. It's like it left me when the drug altered my physical mechanism for thinking. I developed a very pessimistic, nihilistic, and almost atheist thoughtlife, and it haunted me for a long time.

All that said, yes, after 6 months it began to improve. The first 6 months were literally horrible, and I believe you when you say you have suffered and are suffering. For a time in the first couple months I had a strong uncontrollable impulse to get up, and pace/walk, as if to escape my body and thoughts.

After a full year I really was beginning to re-develop a sense of self and placement in existence. I read the scriptures (Bible) a lot more. Before the BPD I had read it entirely but Ecclesiastes in particular meant a lot to me in this time. My intelligence has been fully restored (if any were lost or altered in the first place). I'm firing on all cylinders. Eating well and a daily vitamin can only help you, even if the motivation is not there, you have to fight it. Do fight it. You can make it. I and others certainly have. I remember talking to a guy that said he suffered the same things from Invega but after 2 full years was totally back into a normal "swing of things".

What you (or anyone suffering from a temporary and especially unnecessary treatment with Invega Sustenna) need to know is this: You can and will get through this. I assure you that you may believe it is impossible, because so did I, but it is not impossible. The human body, mind and soul are absolutely glorious is their composition and capacity to heal.

Eat well, intentionally do good for yourself. Fight it. Pray. Pray desperately -- read scripture, do what you must, do what you can. Feel free to message back. I may not get around to responding immediately but I assure you I will make the effort eventually. As of now, I'm in graduate school working on a Ph.D. Nothing is impossible to him that believes, so do not lose faith in a full restoration.

If interested here's a thread I posted back in the thick of it: http://www.bluelight.org/vb/threads/712455-Life-itself-bothers-me

check this out

 

[Koz26]

For those interested, I am starting on Requip, a dopamine agonist and opioid agonist, in an attempt to offset the anhedonia I am suffering from due to Invega sustenna. There has been some research studies that have shown dopamine agonists such as requip and mirapex have been used successfully in treating treatment resistant depression and bipolar depression as well. I read somewhere on the forums of another website, I think crazymeds, that since Invega is a dopamine antagonist, a dopamine agonist can be beneficial in offsetting some of the side effects.

There was a success story from someone coming off risperidone and using mirapex and requip to alleviate his anhedonia and made an outstanding recovery. I don't have the links to all the studies and the articles, and I don't have time to look them all up again right now. I'll try to look them up later if anyone wants to read the research studies or personal stories themselves. But do your own research as well. Requip has made me feel slightly better thus far, but it has only been five days so I can't tell for sure if it's just a placebo effect. I don't think it is but I also don't want to give anyone false hope. I'll keep everyone posted with how it goes.

 

[Bad Robot]

For those interested, I am starting on Requip, a dopamine agonist and opioid agonist, in an attempt to offset the anhedonia I am suffering from due to Invega sustenna. There has been some research studies that have shown dopamine agonists such as requip and mirapex have been used successfully in treating treatment resistant depression and bipolar depression as well. I read somewhere on the forums of another website, I think crazymeds, that since Invega is a dopamine antagonist, a dopamine agonist can be beneficial in offsetting some of the side effects.

There was a success story from someone coming off risperidone and using mirapex and requip to alleviate his anhedonia and made an outstanding recovery. I don't have the links to all the studies and the articles, and I don't have time to look them all up again right now. I'll try to look them up later if anyone wants to read the research studies or personal stories themselves. But do your own research as well. Requip has made me feel slightly better thus far, but it has only been five days so I can't tell for sure if it's just a placebo effect. I don't think it is but I also don't want to give anyone false hope. I'll keep everyone posted with how it goes.

My doctor wouldn't prescribe me a dopamine agonist, but go back for a blood test next week and he might change his mind after looking at the results
Currently taking procycledine twice a day ,the beta blockers just made the depression and anhedonia worse
Just over 9 weeks since my last injection and startig to feel calmer about my situation , managed to sleep in the last 3 days which i'm taking as a good sign
The crazymeds site has some good threads about invega and risperone withdrawal
Risperone targets one of the major receptors and makes you feel how you do, invega must work the same way
Its just a waiting game for the poison to clear your system and the receptors to recover/regenerate
I read a good thread on surviving antidepressants ,but the lad redmerone jusl dissapeared after 4 months
A few are using wellbutin , but i think an antidepressant is not the way forward
Not many success stories on the net , this is the only one i've found and some of the advice is not very encouraging


s

 

[Quasarkid89]

Well... I really don't know what to make of it all. Frankly I am not pro-med nor am I anti-psych. I just want to get better. I know for a fact that I started to have anhedonia right after my first injection of Invega Sustenna. There is no way anyone could tell me otherwise. Another person I met at the hospital who was diagnosed as schizophrenia also had his anhedonia started at around the same time mine started. We started Invega Sustenna just a few days apart. Then I also found reports of other patients experiences that are identical as ours.

I didn't argue with my pdoc because I found it to be pointless. The medication also rendered me so docile and apathetic that I could not bring myself to argue with him. I was just thinking what is the point since the damage has already been done and there is little that he could do for me. The only thing I can do is to wait and let time decides whether or not I can recover. The fact that I really don't know when or if I will ever recover is extremely frightening.




Thank you.. I really hope you are right. I am suffering on a daily basis. It gets harder and harder as this drags on for it feels like it's going to be forever. I don't think there's a way for me to describe in words how torturous this experience is.

Hey, I know it's been a long time since your last post, and I was wondering if you finally managed to feel better? I'm going through a similar situation right now, with Risperdal Consta. The manufacturing company of the drug, Janssen Pharmaceuticals, states that the elimination phase of the drug is 7-8 weeks, but it's been practically 10 weeks and I still feel the same, which is a shitty mix of apathy, anhedonia, emotional flatness, low sex drive, and weight gain. So I can definitely relate to what you were, and maybe still are but hopefully not, going through. I'm going to see if there is anyone else on here that has been on Risperdal Consta and has had the same problem. Hope your doing better.

 

[Bad Robot]

I've read rispa has a shorter half life than invega, they are similar and are made by the same company. Invega is activating in your system for 120 days according to someone on crazy meds. All a.p's work the same way blocking dopamine and serotin in your body. You've just got to wait it out, each day that goes by is a step closer to recovery. Its hard not thinking about it every moment of everyday.

 

[Bad Robot]

10 weeks from last injection
Can't even concentrate to watch a movie yet
Still on procycledine twice a day, going to try to reduce to once a day next week after going to doctors for a blood test
No sex drive either, thats going to be another couple of months according to other people unless the doc prescribes me a dopamine agonist
No drink or drugs in 7 weeks which is good, just happy with a horlicks at night at the moment, the mornings are the worst waking up early with inner akathisia, by night time I feel almost normal, must be the invega peaking first thing
I'm hoping for an improvement by christmas and the new year and to be recovered by march
Keep the updates coming people, its the best thread on bluelight

 

[iridescentblack]

Update:

Approaching the sixth half-life of the medication here, seems one of my last posts on this thread was misleading... I was experiencing quite a bit of creativity for a while. Was seeing auras again and having meaningful, enlightening and fulfilling conversations with God. Was even able to do much more than just simple chords with my rhythm hand on piano for the first time in 4 years! (You have no idea the full extent of the damage from this medication unless you truly know yourself and your capabilities).

Anyway, it seems what I experienced for roughly a week and a half to two weeks there was merely a large "dip" in the medication. But I'll keep posting here, just to let people know how it goes and support any way I can.

 

[AlphaMethylPhenyl]

That's not how it works. The medication exits the body in a largely continuous manner, and levels don't spontaneously rise. I'm starting to sound a little like a broken record here, but I think people are real quick to blame all of their problems outside of things under their control. It's largely natural, maybe even human to do so. But it doesn't speed up recovery. It hinders it. There was problem something else that more directly lead to your increased creativity.

I really feel for those of you whom were wrongly put on this drug, but at the same time so many other things than waiting for a medication to clear one's system go into creating a meaningful life. It's never healthy to just wait for life to get good.

 

[Koz26]

I agree with Ho-Chi-Minh, but it's so hard when you literally feel like all the happiness and joy in your life has been taken from you and your brain doesn't work properly anymore. I truly think this feeling will go away in time and that we need to do everything in our power to force ourselves to carry on and live our lives as much as possible. I know how hard it is because I feel bad enough to warrant me being in the hospital, but I don't go back because I fear there is nothing that can really help the physical/mental feeling of my mind being trapped in a box or a prison besides time. It's depressing, and some drugs prescribed to me such as Adderall have made the days seem a little more bearable, but it's still hard to convince myself that life is worth living when you feel this horrible and you feel like there is nothing that can make it go away. But in time I'm sure it will go away. If I believed this state was permanent I would most likely contemplate suicide. It's truly no way people should have to live unless you're some type of murderer, violent sex offender, legitimate danger to society, etc.

Before this experience of being on Invega sustenna began two months ago, my career path was set on becoming a Social Studies and Special Education Teacher. I already have my B.S. In Psychology and my B.A. In History, and I am in graduate school for my Masters in Education. However, now I am strongly considering changing my career goals towards working in psychiatry. I now have this calling, or maybe just an overwhelmingly desire to become a Psychiatric Nurse Practitioner to dedicate my life to ensuring psychiatric treatment improves and nobody has to live this experience that I, and so many of you have. I was taken from being manic to being borderline suicidal...Undoubtedly, I had to come down from my manic state...but there had to be another safer and less severe route for my treatment team to have taken...So I feel for you all and I research ways to improve our treatment and help us get better on a daily basis.

UPDATE: The dopamine agonist I have been on for two weeks now, Requip, seemed to help a little during the first few days but now it doesn't seem to be helping at all. My depression has gotten more severe so that might be why...sadly the reason my depression keeps getting worse is because every day I wake up hoping this feeling in my mind, this relentless compression around my brain that I feel physically, will go away or lessen in severity just a little bit. It's only been close to two months for me, but with a proper treatment plan two months should be enough to put a bipolar episode in remission and return the person to baseline. I'm not religious, but I pray this is not my new baseline. In my heart I still have some fear that this could be permanent but I refuse to give up hope. Keep your heads up even though it's hard everyone. When this experience is over I know we will appreciate life so much more than we once did...at least I know I will.

 

[signalsign]

Update. 6 months after finishing paliperidone (18 months no lithium)... life is much better. I have the same city the same job the same girlfriend but a better perspective on all of those. I've lost weight, enjoy exercise, laugh and connect with people. There are times of fear, going off meds is scary, especially when many close people in your life don't know about it. It's different for everyone, but for me I hard work and grit are naught against natural urges. For example I think behind every great sports person, at the bottom is the love of their sport. That drives and feeds the hard work bit. There is some going the other way but the dance comes from the music.

My confidence in remaining well is not certain. I have had some nights of poor sleep, middle of the night waking. Nothing manic but days of high energy. I think I can feel improvement though stability and peace sinking in.

I had 10 episodes in 5 years. Now i've been well for two years. I credit this to compulsory paliperidone injections helping me weather lithium withdrawl, a stable quiet place to sleep (Mum's place) sacrificing work stimulation for stability, a boring city, a girlfriend who likes to cuddle, understanding friends, zopaclone, exercise both muscular and aerobic, the sea. A heart warming tale.

Like how working a soul crushing summer job is bearable if you give it a timeframe I think an ultimate goal of medication reduction/intermittent meds or even no meds helps make the present palatable.

And I think paliperidone makes you crave shitty food! There are way too many 'harden up' types, what we need is love and compassion. To be held. Levity.

 

[Kyliepsychic]

Can anyone tell me when weight loss starts after paliperidone? Thanks

 

[signalsign]

kylie.. on weight loss. In hospital I maxed at 120Kg. On 50mg about 108kg. 25mg 102Kg two months after cessation 98/6Kg four months after that (now) 94Kg.

imho If trying to lose weight on meds and the numbers are going nowhere focus on eating to feel good instead.

 

[Symbolicone09]

Hows everyone doing? Its been over a year for me. I can say a majority of the effects brought on by invega sustenna has went away. I still have medical issues (physical) and mental issues like depression and derealization... I can say to you guys though that experience derealization that it does go away and i think part of the reason it didnt go away was due to me still smoking weed, which although greatly helped with my depression and motivation, the paranioa and other minor issues gotten worse and though i love what weed was doing for me the negitive side effects ultimatly effect my ability in supporting myself, maybe once its legal and im financially stable ill change my mind but as of now im done.. Its been 3-4 weeks since i have stopped smoking, although ill smoked one bowl pack (my last bowl pack that i had left) last week due to the feelings of depression as i am taking a break from my job and considering out pateint treatment for managing my depression and insanly high axiexty under normal conditions.. Sexually all of my problems went away pyshically but on the mental aspect i have no motivation to engage in a relationship and i think that is most certainly a result of invega... I just kind of feel like a passive beta in someways..... Part of me would really like to try mdma but lets see how everything else works out first and give this other method a chance to work.. The derealization is pretty much off but im still disconnected from media pushed issues in the sense that im up to date with , isis, presidential election, france, syria etc etc but i dont really care one way or another, somthing will take thier place and it will be the same cycle... Thats what i have a problem with accepting as i want to care about things like that or football or sports but other then ohio state its not thier and prehaps maybe thats not derealization but somthing else. All in all its a heeeell of alot better from one year ago, night and day and though im not living a fulfilled like at least it feels like im living and everyday counts... Sorry for the long post

TLDR
1 year off invega -night and day diff
Sexual issues gone but passive in relationships
Derealization virtually gone.
Motivation-low
Anhedonia was gone at 7 months
Off weed for a month(very little paranoia)
Considering outpateint
Axiexty at highest ever in my life(lost here)
Depression- lowest in 1 year span but still there.

Low points are not as low
Brain functionality normal (memory, cognitive, etc)

 

[Bad Robot]

Giving up weed is hard, I've been a wake and baker for the last 3 years, but it doesn't have the same effect on me on invega, get almost panic attacks when I last tried it 7 weeks ago, same with beer. It actually scared me into giving up the last time I had a drink and a joint. My body and brain don't feel like they can cope with getting drunk or high at the moment. Its hard enough getting through each day sober at the moment and I know the cannabis is the reason I'm in this position in the first place. If only I'd been sensible and left the weed smoking and drinking till the nightime I might not be in this position.
Waking up every day depressed and anxious is new to me and i hope the doctor finds some vitamin or nutrient deficancy when he does a blood test this week even though its probably the long half life of the invega. It doesn't help with the maths for recovery when the half life can be anywhere from 25 to 49 days. The boredom from doing nothing but surf the net looking for answers or recovery stories each day is not helping me, but when all your friends are drinkers and you are not working there's not much you can do when your on this poison. At least my parents are back from holidays tomorrow having their dog for company and to look after isn't much fun when your ill, could be worse I suppose at least it gets me out in the mornings for some exercise. Only at just over 10 weeks so I shouldn't be expecting miracles, but it sure is a brutal punishment getting injected with this poison, It could be worse I could still be in hospital getting "treatment"

 

[Bad Robot]

11 weeks since last injection
Down to one procycledine tablet a day
Still waking up anxious and depressed, I come round a bit as the day progresses, hope to get off the procycledine before xmas, I don't know if they are helping, but I feel a bit calmer after taking them, its not going to be as easy as I thought getting off the last tablet
Go to the doctors tonight for the blood test results, not sure if I want there to be anything wrong, but the way I feel I'm sure there's got to be some definacy. The injection crosses the blood brain barrier according to the doc and dopamine medicine wouldn't help, he hasn't offered anti depressants yet and I'd rather not go down that route according to some of the horror stories I've read online. I'm still thinking the 16 week mark is when I notice some improvement and the daily grind gets easier, a lot of people stop posting just after the 4 months and it makes sense with the half life.

 

[paranoid android]

Can anyone tell me when weight loss starts after paliperidone? Thanks

Hmm this just goes to show that everyone reacts very differently to medications. I was on Risperidone (Paliperidone is it's main and only active metabolite) for a good year i think and never gained a pound no matter what the dose was. In fact most people i know find Risperidone and Invega to be pretty good with not causing weight gain. But i didn't even gain weight on a combo of Quetiapine, Divalproex (Depakote, Epival) and Amitriptyline and all 3 are notorious for causing weight gain. So i guess i am lucky there.

11 weeks since last injection
Down to one procycledine tablet a day
Still waking up anxious and depressed, I come round a bit as the day progresses, hope to get off the procycledine before xmas, I don't know if they are helping, but I feel a bit calmer after taking them, its not going to be as easy as I thought getting off the last tablet
Go to the doctors tonight for the blood test results, not sure if I want there to be anything wrong, but the way I feel I'm sure there's got to be some definacy. The injection crosses the blood brain barrier according to the doc and dopamine medicine wouldn't help, he hasn't offered anti depressants yet and I'd rather not go down that route according to some of the horror stories I've read online. I'm still thinking the 16 week mark is when I notice some improvement and the daily grind gets easier, a lot of people stop posting just after the 4 months and it makes sense with the half life.

Well if you want to try a anti-depressant that increases Dopamine Bupropion (Wellbutrin/Zyban) is a Norepinephrine Dopamine reuptake inhibitor. I find it to be the best anti-depressant for treating the can't get out of bed, Anhedonia, can't be fucked doing anything type of depression. As a plus it doesn't cause any real withdrawal symptoms either and i have taken it for years and stopped cold turkey with no symptoms. It's actually one of the very few anti-depressants that doesn't cause withdrawal symptoms and the side effects from it aren't that bad for most people either.

You could suggest that to your doctor if you are Depressed. I find it especially good for seasonal affective disorder as it actually seems to wake me up abit.

 

[Bad Robot]

Low or none vitamin D, got some tablets to take for 2 weeks then fortnightly
That can make you depressed, quite relieved the doc found something and the invega has passed through my liver and kidneys
The testerone and everything else was okay
Hopefully i start feeling a bit happier over the next couple of weeks and can get off the procycledine , the legs stopped continually shaking.

 

[Symbolicone09]

Low or none vitamin D, got some tablets to take for 2 weeks then fortnightly
That can make you depressed, quite relieved the doc found something and the invega has passed through my liver and kidneys
The testerone and everything else was okay
Hopefully i start feeling a bit happier over the next couple of weeks and can get off the procycledine , the legs stopped continually shaking.

just a pre intro i have been of invega for a year and these post for now on are just keeping people up to date with my status.... A hell of alot better then last year but still got someways to go.
Hey thats interesting i found out i have low vitamin d and was prescribed pills to help with that . Actually i just to mine for the week and seem to feel a little bit better. I experience the shaking to.. Not like the tardive symptom though.. Wasn't sure if it was from the invega or just axiexty in general. Depression seems to be erratic.. Right now im in a great mood after talking with family and friends and working on music. But its like the feeling can change instantly and i have not found this new trigger but maybe its something coming from the paranoia. After speaking with my therapist the paranoia is coming from my way of thought rationalization and it makes sense as im in the computer technology field and almost certain i was hacked but perhaps it was something else that was more rational, i did have a trojan and some spyware stuff but what probably happened is that my new virus software picked up stuff i had quarantined.. I also received emails in regards to setting up Citi bank and discover credit cards but that got clarified and resolved by those two companies. In the long run nothing has happened so ill leave that at that.. Their was some weird local connections but honestly from talking with my mom and therapist I'm moving on.. Im basically just writing this post as a check in.. Other then the sexual issues most of the effects are gone from invega. I believe the derealization has gone but my mindset has changed somewhat in the sense of how life just felt different. I cant think of the word but I'm just carefree about everyday media brought on content except my passion for sports has returned.. I do feel connection when i here something inspiring or sad or informative. And the actual connection with my friends and family i can feel that feeling more then in like 2 years.. I got a lot of people that care for me and im blessed cause when i went through the worst of it my mom was the only person i could feel connected to in this world and i caused so much stress its like, i don't know how to especially her and others who have helped. Being single sucks, on one end , i want to make sure im 100% before i enter a new relationship and i think that is best but it makes me feel like a jerk because i have giving some people the wrong message and i feel bad about that.. I just hope i can just improve day by day. Today was good, tommorow could be hell jr but one things for sure as long as i got a plan(which i do) to follow, i will get there. I have problems carrying out the plan, i do somethings some embarrassing that i would never do otherwise. My support system is strong and their to see me through it, i will be a better man and the person i was meant to be... If anyone ever wants to talk about invega or just life in general pm me, im all ears. God Bless Narshe i hope he's ok and God bless everyone.

 

[screwinvega]

Hitting 5 months soon after 2 starting doses still dealing with cervical/back/low-back stiffness that I had full time since the injections .. been reading all the replies in this thread and just wanted to say I might show up too for some chatting sometimes. Take care
M