Need help getting off Risperdal Consta or Invega Sustenna

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My son is 23.  He was attending college, working part time and working out daily at the gym.  He had a stressful period, and did a lot of drinking and smoking stuff that he shouldn't have been. He naturally desended into a psychotic episode. He was hospitalized briefly but recovered from it.  

He went back to live with his roommates in his shared apartment.  But they were afraid of him, and wanted him out, so they called the police, and claimed that he was hallucinating and had a weapon (none of which was true).  The police broke into his room, handcuffed him and took him to a hospital where he received a 234mg shot of Invega Sustenna on Dec 12th 2015.  It has rendered him a emotionless and physical wreck. He now sleeps at least 18 hours a day, sometimes getting up in time for dinner, sometimes not. He can bearly hold a simple conversation while he's up.

For the first couple of months he was suicidal.  He kept telling me that he just wanted to die.  He had and still has a severe case of anhedonia.  He feels no emotion at all, other than anxiety.  He doesn't like or dislike anything.  He gets no pleasure from eating or seeing the sunshine, or watching something really funny on TV.  He feels no satisfaction about anything and didn't look forward to anything.  He's worried that he may have permanent brain damage.  

We're tried seeing a different psychiatrist. But that one doesn't believe my son and thinks he needs to be on a "mood stabilizer".  I think that would definitely kill him at this point.

My smart, good-looking, athletic and motivated young son now wouldn't even make a decent zombie.

Has anyone had a similar experience or have a success story about getting off the long acting Invega or Risperdal?

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  • Posted

    Very sorry for what has happened to your son mom. Its tough when doctors or psychiatrists do not believe what really went down and try to diagnose someone with a unrelated or unnecessary medication or disorder. The best thing you can do at this point is let your son go the natural route. No medications. Sometimes all the body needs is a natural approach to situations like this. Obviously cleansing his system is an immediate option. I'm not sure if that medication can cause brain damage. I wouldnt like to think that they would be willing to inject your son with medicine that will provoke brain damage of any kind. It might just be all in his head at this point as far as the brain damage goes. Sleeping 18 hours and not eating certainly wont help and you need to help him change this. I believe this is depression and post traumatic stress related in a sense. I thought at one point myself i had brain damage after smoking marijuana and i swore by it and i can tell you it was just something i stated out of depression and convincing myself i had it at the time. Seek out another psychiatrist and get a different opinion and if they give him the same diagnosis then you should take this into your own hands. Dont let this impact the rest of his life let it lean more towards a learning experience. Good luck and i hope you take my advice.
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    • Posted

      Thanks Cristian.  I agree 100% with the natural route to recovery without medications.  He tried a number of antidepressants which gave him a variety of weird side effects and never helped the problem. It’s seems to be like a crap shoot with psychiatrists.  From my experience, they don’t use any science, blood tests, brain scans, nothing.  They just do some educated guesswork, based on what seems to work.

      I assume there must be people who are helped by Invega, but many are seriously damaged by it.  I’ve been searching on line for anyone who’s recovered from this drug and instead found a shocking number of people who are in the same desperate situation as my son, not knowing if they will ever recover and considering suicide instead of living with the constant suffering.  I’ve come across a couple of people who said they started to feel a little bit better at the 5 or 6 month point, but nowhere near normal.  I have yet to find a single person who says they’ve completely returned to normal – not one person anywhere on line. 

      We are now very conscientious about eating healthy foods and getting proper nutrition. For the first month he managed to occasionally go to the gym.  He just can’t do it anymore.  I’ve coaxed, reasoned and pleaded, but he’s just unable to get out.  Everything exhausts him – even talking or thinking.  I make him wheat grass smoothies (very healthy), and give him CBD oil (cannabidiol).  The CBD oil has helped a lot with his anxiety.

      Getting him out of bed is another story.  He says that’s the only time that he feels OK. For a few weeks he was having terrible nightmares.  But the CBD oil seems to have helped with that too. He’s dreaming normally now.  Hopefully that’s a good sign.  But he’s just miserable, sitting in a chair or lying on the couch whenever he’s not in bed.  I’ve read in other forums about lots of other people who are going through the exact same thing.

      Why this is considered responsible modern medicine is baffling.  What happened to the Hippocratic Oath that doctors take – “First of all – do no harm”. Doctors seem to have given up on that. All I can figure is that all these people who are suffering so much are just expendable from a pharmaceutical company viewpoint.  

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    • Posted

      The medicine invega sustenna cause people to be very tried and that means the body's not use to it. So it's normal the body to react this strong that your body's not should not have. He's on too high a dose that's why his exhausted. His body is having a hard time handling his dose. It's not depression. Think about it. He's awake for only 6 hours a day. That's not even normal for someone with depression. That's extreme exhaustion from way too much meds.

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    • Posted

      Dont be so sure Anne92645! Psychiatrist never know how their patients will react to any of the drugs they prescribe. My son's been on disability since 2015 because of his adverse reaction to invega sustenna. Any amount of that drug is too much for him.

      Prescribing psychotropic drugs is a very inexact science. No, I take that back, it's not a science at all. It's a crapshoot.

      Research shows that those who are never prescribed psychotropic drugs do better in the long term then those who who have taken any amount of psychotropic drugs.

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    • Posted

      I don't want to be on invega sustenna but psychosis is much too difficult to deal with. One day I hope I am well and can get off the medicine. I have been on it for 10 years. Well invega sustenna four years. Abilify four years. And invega just the pill for a year. Resperidone or resperidol the first year. And I went 7 years before that without treatment. It's difficult to deal with medicine. but 100% worse without any help at all. The doctor will not let me off this medicine. Of course I never wanted to go on pills. I also wanted to be healthy and extremely out going. But people are always hurting me and people that I loved died and moved away. In a short period. Either way I am not okay. Although it's way better now.

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    • Posted

      Nevermind I had no idea what you were going through cause I couldn't understand what you were saying. Drugs are crazy. Just like me. Sorry.

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  • Posted

    Hi, I tapered off risperdone slowly as withdrawal is hard going. I reduced it every month until off it completely. Unfortunately 4 months after being off it went psychotic. Am now on Aripiprazole which is less sedating. Good luck and take it slow. I get the zombie thing too, is awful.
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    • Posted

      Thanks for your response Louise.  The first time that my son had a psychotic episode, after much partying and generally unhealthy behavior 7 years ago, he was put on risperdone (Risperdal).  He became a zombie then too.  But I started weaning him off the medication as soon as he got home.  He stayed psychosis free for years, until he started the smoking, drinking and stressing out about school and roommates.  I will try to keep him on the CBD oil. It seems to do wonders for him.  Best of luck to you too.
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  • Posted

    Yes, very similar to my son's experience. He wanted to talk to someone about his excitement about being in tune with the universe & I foolishly took him to a public Mental Health Service. They locked him up & forced Respiradal Consta 37.5mg injections into my bright 72kg, 1.85m fit skateboarder son. He gained 13kg in 26 days, was unable to function to the point of needing assistance to shower, but the Doctors were happy with this outcome. We sent him overseas to avoid the Compulsory Treatment Order as we could see that this drug would kill him.  After 6 months of not being able to get out of bed he started to improve a little. 

    He had another psychotic episode after having 2 general anaesthetics within a month & this time they used 1.5x the manufacturers maximum recommended dose of Olanzipine. They realised him after 5 weeks (still completely psychotic) & we sent him overseas again for more holistic treatment.

    He has started Biobalance therapy (biochemical treatment using nutrients) using the methods of Dr William Walsh & takes a small amount of lithium & just 5mg olanzipine. He is back! I feel as though he has returned and will be able to live a quality independent life! There is hope for your boy. Lower your expectations, live each day as it comes and celebrate the little things. Mine now loves life & has no desire for suicide, has stopped smoking.

    My suggestions are to keep an open mind about what might work, be suspicious of the doctors, follow your lioness instincts to protect your boy & be there for him. I wish you luck and love.

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  • Posted

    I'm sorry to sound so negative, but people do experience long term brain damage from high doses of antipsychotics, it is absolutely an abuse of power on the psychiatrists side. It has been proven that for the majority of people, LOW doses of antipsychotics over a short period of time or as a preventative measure are far more effective, both in terms of quality of life and related side effect reduction. 

    It it will take some time and you are obviously doing your utmost for him. From what I've gathered, he's still on the ridperdal consta? If not, keep encouraging the following - nutrient rich, varied diet, light exercise, and rest. Allow him to rest, he needs it. Keep hoping. Possibly look into psychological therapies for him. Keep some sort of a routine and consistency if possible. I would also write to the health authorities and complain about the initial injection and the effects it has had.

    If if he is still on the injection, demand to whoever is prescribing it that he be taken off it immediately, or that the dose is tapered and maintained at a LOW dose..the equivalent of 1-3mg per day of risperidone is usually more than sufficient to prevent relapse. 

    Good luck. 

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    • Posted

      Thanks for your input.  My son only had one shot of Invega Sustenna. Luckily we were able to get him out of there before they gave him any more.  He has been completely off all prescription drugs for 4 months. We were seeing one alternative health care psychiatrist who recommended some high quality liquid vitamins and Nootropics.  We are also seeing a great psychologist (1 1/2 hour drive from here), who did a brain scan and started CES (crainial electro stimulation) for an hour every day and brain neuro-biofeedback 3 times a week.  

      I think he may be improving a little bit.  He was able to take a couple of walks last week (despite the chest pains). That's pretty sad for a 23 year old previously physically fit, athletic guy.

      The doctor said that my son had one of the top 5 worst brain scans that he's ever seen.  He said that my son was undoubtably in a high anxiety zombie-like state. He encouraged us to sue the doctor who gave him this shot.  I am still trying to find an attorney who will take the case.

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    • Posted

      We also did some genetic testing and loaded the raw data into a few of the services on line that do an analysis of DNA to determine which nutrients might be helpful and which supplements to avoid.  We've found that he needs to avoid folate and folic acid (because his body is genetically predisposed to not have the ability to utilize folic acid (which then builds up to toxic levels).  He is not able to detoxify other toxins efficiently.  He is also shouldn't be taking grapefruit, turmeric, and a few other things.  

      This type of epigenetic study should be where we are concentrating mental health research, not just throwing drugs at people in crises without a clue how these people will react.

      The Walsh Research Institute has a lot of fascinating research and information on their website.

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    • Posted

      You're doing a great job of helping him, and you are lucky to have access to such avenues of support. I wish you both luck. Little by little things will probably improve, it's baby steps. 

      I was on a huge amount of anti-psychotics, including a depot injection that made me extremely agitated. It took me quite some time to return to anything close to normal (somewhere in the region of 2 and a half years) and that included a lot of high intensity exercise, high dose cod liver oil, and vitamins. Although I wasn't sleeping well and lived in a permanent state of severe anxiety. Since stopping the drugs I suffered more with depression and extreme mood swings. I had to go back onto an SNRI because I have no ability tolerate certain types of stress any longer. I've had a brain scan too, but it was never looked at and I never heard anything about what, if anything was revealed. It was done as a run of the mill thing when I was admitted to hospital with delusions and paranoia. 

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  • Posted

    Hi, it does get better I was the same after having psychosis. I switched from risperdone to aripiprazole and find it less sedating . I am back at work now after two years of going through the same thing. Hang in there and all the best x
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