Hi Craig - I wondered, you had mentioned John Nash and I know he was anti-meds, do you know whether or not John Nash’s son took meds for his scz?
Not sure, as I am only familiar with John and his mathematical breakthrough in the field of economics. I now realize insomnia occurring in a stepwise fashion with a later progression following symptom reduction is actually withdrawal. Could be one day savant like abilities are restored to contribute to society, but maybe never at John Nash’s level.
My son is unmedicated, he has been fortunate to retain his cognition. He did work with a therapist to learn CBT which has helped him immensely day to day.
Have you tried Lion’s Mane? I know some of the diagnosed users were getting really great results from it. I tried it myself, and noticed an improvement in day-to-day cognition (being able to find that word or name I was looking for - I’m in my 50s). I was using a cheaper brand, but I’ve ordered the more expensive Amyloban 3399 (supposed to help with positive symptoms of scz). That might be overkill for memory improvement, but I wanted to see if I personally noticed any difference. Also, I was hoping my son might like to try them at some point, and I thought he might be more favorably disposed if I tried them first. (My order is supposed to arrive today, so I don’t know yet whether I’ll notice a diff).
Thank you for the tip. The insomnia came back, but my colon was in excruciating pain leading to a bowel movement. An analysis denoting withdrawal as the root cause of insomnia appears to be correct. Many have regained complete cognition over time, since low dopamine levels are related to memory recall.
One of my biggest fears: my son turning into a complete vegetable while on Zyprexa, along with a slew of other physical ailments resulting from neurological as well as physical damage to the major organs like the liver, kidneys, heart, etc. Trying to get the doctor to lower his dosage as much as possible gradually. Initially this med did the trick to bring him out of psychosis, but I don’t feel this should be a life sentence.
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Your fears are warranted as the deleterious impact of AP’s is well documented. I would personally try natural drugs in the form of supplements before resorting to AP’s as a negative symptom stop gap. Exercise and fasting are also suitable alternatives with proven efficacy for various neurological issues. For 4 months and 1 week I had severe depression and anhedonia that disappeared and resolved completely overnight. Others are not so fortunate.
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I actually had bloodwork taken at about 3.5 months in showing no abnormalities and I can remember conversations and events from a month ago. My story does not mirror the story of myriad others; however, many recover and you will see a trend that they are content, because they are recovering. The horror stories are alarming and made me realize even the worst of my symptoms paled in comparison to issues like Tardive Dyskinesia or Parkinson’s Disease.
Soworried, I meant to mention that the issue you are describing is a common occurrence among the entire populous known as circumlocution: using multiple words to describe anything that may only require one or two. A rare few people can be precise in their verbiage usage while utilizing the imprecise guttural language of English where more exceptions to rules exist than constituents. Hopefully my posts shed light on the possibility of full improvement and the pernicious, nefarious risks of AP’s including many deaths.
I am still anxiously awaiting recovery. However, drug companies can stop calling me as you are the cause of unnecessary suffering and death. You value money over human life much like Ford deciding not to recall the Pinto and install a rubber bladder around the gas tank to prevent explosions upon crash impact. Actuaries actually calculated the cost of the 10 death lawsuits to be less than the recall. Therefore, they placed a value on human lives. Despicable and you deserve each other as I lay waiting to recover from needless suffering. Sleep well as I won’t, but pretty certain you won’t be resting in peace.
I had 5 shots of this after i had a manic episode. Since going of it i never feel tiered. But get 12 hours sleep a night. Can’t zone out get high or drunk. I get alot of headaches. Have no sex drive and feel numb. So i forget about sex.very low motivation. So it’s hard to get motivated to shower or do laundry it used to be really easy.i used to clean the house all the time. But now no dopamine reward. Weight gain lower interlect. Its hard to haVe conversations now because i can’t think as fast. Thoughts of what to say don’t seem to come to me anymore. Long term and short term memory is screwed. Always forget things.Dont enjoy my hobbies and interests. Eg i watch a movie and my face and soul is just blank/numb. Couldn’t cry for 5 months now i finally can. Sadness happiness love anger fear jelousy have come back alittle bit. Hardly any food tastes nice anymore miss calling my friends and chatting but get scared because i hardly talk anymore. When i do its just pre memorised phrases. Very over this as my spirit has preety much gone hopefully it wears of soon as it’s been 6 months. I have read on other forums that baron magnesium and iodine help. Also cabergoline is supposed to help dopamine levels. Hope everyone is going ok and know that it will get better in time
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I hope you keep us updated on this. My son had 2 shot and we did not contiune with the third due to side effects. Its been 20 days off of this and he still has the problem with void of motivation ,numbness in feeings and sadness. The half life for the med. is long and will take some time to get out of his system… I pray it does. My feeling is that this med workds best for the more aggressive and agitated patients … Since in numbs so much…
Do you know what psychosis looks like?
If it you don’t know what full blown psychosis looks like
You are most likely misdiagnosed…
And perhaps it ain’t even a big deal as you could go on without the medication…
Sure
There are always those people
But if you’ve seen a real out blown psychosis
You’d be thanking the antipsychotic to pull you out of it as there is nothing else that will help you stop it
Or even be compliant to even consider it.
Yeah the side effects suck…
The idea is you take enough medication to help remove psychosis
Where at the same time take less medication necessary to reduce side effects…
My partner and I reduced the AP over their course of 3 years
From highest dose
To being completely off Invega sustenna for about 10months now
She’s been experiencing terrible form of psychosis and depression and her moods are up and down all the time
We tried to stop the medication and do the all natural approach
It did not work anymore…
She used to be so independent with her life and was able to make music and do her things before this
And now she Just wants to fight me all day and mistreat me with delusions and mistrust over me…
It’s really terrifying
Perhaps we have to wait longer to be off it?
But it’s really been very difficult
And we are literally trying to get back on a small AP.
We should really stay on just a small dose for a while!
And play it by ear then!
It’s been so difficult
But let’s see if we can pull through
Maybe the factor of taking APs for about 15years plays a huge role to this
So reducing the AP from 256mg to 158 made miracles happen!
She was able to function a lot better
Then from 158 to 117mg
Was perfect!!
Then 78mg
It was a little rocky due to the withdrawals
But pretty good
We think the mixture of 78mg of invega sustenna with lamictal would be the cherry on top for high functioning and low side effect profile than previously…
Anyways
When we stopped the AP
We experienced terrible side effects that lasted the whole 9months
Maybe the psychotic depressions and delusional mind is still from the AP
But we can’t prove that
We found that she has aspbergers on our journey off the medication
She has a lot of behaviorals and melt downs
She has a lot of anger
The APs helped a lot control her behavior
We did a lot of the alternative route…
We feel like if she would of gotten therapy from when she was a kid to manage her aspie symptoms…and not just drugged up
It would of maybe been different
So at this point this past 3 years have been highly stressful for her
So at this point we both need a break and will just stay on an AP
It’s about quality of life …
And if APs help with that
Then that’s what matters
Psychosis will destroy you and your family and everything you love
And you can’t talk your way out of it
Goodluck.
You’ll find this out in your own.
No editing
Just raw typing and thoughts above…
Im not sure who your messege is for @thesunshinemaras but my son is not off of APs all together… he is on another one as he is being weaned off from Invega S. He is being monitored by a Dr. for this, to make sure he doenst become psychotic again. I think a low dose would be wonderful but I cant talk him into it. He was very clear on this medication in his thinking but became “dangerously” depressed. We were in fear for him. The dr. said he shouldnt be feeling this way on it so he decided to take him off of it. Each patient is diffrent and I think his situation is not the norm.
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That sounds very hard, @the sunshinemaras.
It sounds a bit similar to my husband’s experiences with antipsychotics - he was able to hold things on lower and lower doses of medication and felt better physically on the lower doses.
He ended up on nearly nothing for over a year and was doing OK but developed side effects anyway.
Because he seemed OK on an incredibly low dose (and because it was his first time on medication), we (he, his doctor and I) were all in agreement that he should stop.
He was feeling better than he had in years for the first couple of months, things were slipping in month three (although I did not realize it), and then he relapsed in month four.
His psychotic symptoms are “mild” (mostly paranoid delusions/ideas of reference with what seems to be a relatively low degree of auditory and perhaps visual hallucinations), but severe enough to make us both totally miserable. And after nine months with no improvements, he agreed to go back on medication.
He has been on the new medication for about 3 1/2 weeks now, and it is helping immensely with his mood and psychotic symptoms: I could see improvements within four days and even he is starting to notice that he feels better (he has anosognosia, so he attributes this to the surveillance lessening).
However, he is feeing hungrier than usual on the medication and is gaining weight (bad luck, as this medication has a relatively good profile with respect to weight gain).
I, too, was really hoping that he could make it without antipsychotics - he’d been on them for less than five years and most of that was a slow, gradual taper from what was a relatively low dose in the first place. But it did not work for us, either.
You are right, it is really about quality of life. It is very sad to have to make these kinds of choices. I wish you both all the best for your journey together.
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I had the same thing happen to me. I was “Baker-acted,” and force-drugged with 2 shots of Invega Sustenna, and Risperdone. I was going through alprazolam withdrawal, and had a seizure and blacked out. The incompetent psychiatrists misdiagnosed me as having schizoaffective disorder, and being catatonic.
I developed severe Parkinson’s symptoms. Not tardive dyskinesia, but actual Parkinson’s disease symptoms. My primary care doctor put me on benztropine after I got out of the hospital last year, and it took about three months for me to be able to hold a conversation without slurring my speech and drooling on myself. The symptoms have not fully gone away. I have restless leg syndrome, worse than before, REM sleep behavior disorder, and tremors to name a few. I am now taking ropinirole. I have to take higher doses of dextroamphetamine than before, as my ADHD is much worse. Like you, my IQ is fairly high and I felt like it was cut in half from these evil drugs. I also got gynecomastia from the risperidone, and now have liver disease.
I spoke with three different law firms, all of whom said that in 49 other states, they would take my case in a heartbeat. In the state I live in, it’s a great area. I am astounded that these people who called them selves medical professionals can get away with this. I’m so sorry you had to go through it also. Apparently, it’s not so rare.
i was commited and put on invega i lived with heart arrhythmia for over 5 years i kept telling the doctor prescribing invega about she kept saying contact your family doctor i could had a stroke easily not only i got up to 333lbs had erectile dysfunction then finally my dad went in with me and told her to lower my dosage so i went from 234mg to 156mg still had the heart problem just not as bad then a bout 6 months later she lowered again to 117mg this time the heart problems went away and istarted to think about my health a little over a month ago i started walking everyday and eating healthier just yesterday she lowered it to 78mg im no longer on a commitment im now walking over 10000 steps a day and lost a little over 20lbs if it wasnt for my dad i would still be on the highest dose with heart problems thanks centerstone of columbus indiana for about killing me