I've been following these threads on Coming off paliperidone/invega since I discovered them this October. I've decided to post, hoping my story might help and be of comfort and insight to others, corroborating what they have suffered
and the severe injustice and shortcomings of our Psychiatric profession, and that I could also find resources and support. I apologize for the detail and length, but believe it is absolutely necessary and crucial. Mods, please do not delete this, even
though its my first post. I am diligently trying to follow the rules and am not denying that antipsychotics help with psychotic disorders nor suggesting that people with psychotic disorders go off them. I am not trying to defame Psychiatry or the Pharmaceutical companies, but rather, I am trying to make fair, justified, well-mannered and valid criticism, in the spirit of medicine and the public good and of reasonable free speech rights.
Quick preface: 34 year old male, midwest United States. I was on paliperidone 6mg/3mg for ~5 months. As of this post, I've been off paliperidone for about ~11 months. I have been suffering much of what has been reported in these threads for 12 months straight with no relief at any time whatsoever. Nothing has improved, not with time nor with numerous antidepressant and sexual dysfunction treatments.
It's clear that antipsychotics in general can cause a syndrome consisting of what posters in this forum have described. IMO no scientists, doctors or psychiatrists have really, to date, acknowledged and coined a term for this syndrome.
The closest approximation would be Neuroleptic Induced Deficit Syndrome, apparently coined in 1992, although their definition is overly strict and really does not include the full range of typical symptoms of this syndrome. It also includes features that some of us, including myself, do not have, for example, indifference and apathy. What we are suffering, then, could be called a Paliperidone Induced Deficit Syndrome or perhaps Paliperidone Syndrome, a very distinct and overwhelming yet cohesive/related array of symptoms with varying levels of severity.
Background--Why I was prescribed paliperidone
July 2021, I started taking paliperidone. I believe I took 6mg at first, (first two or three months) and had it reduced to 3mg later, and was taking it through mid January 2022, for a total of about 5+ months. It was a stressful time in my life in June 2021 (construction and neighborhood noise, city traffic, family quarrels and arguments), and I did have temporary irritability, some strange behavior and some impaired perceptions. For instance, I got into an argument with my mom about where my paternal grandparents' pictures were, when in fact, four years earlier, I myself had moved them somewhere else, which I had temporarily forgotten. But I never during this had hallucinations nor delusions, nor have I ever. One morning, we got into an argument, and apparently because of previous arguments and my irritability, she threatened to call the cops on me. This actually happened once before in 2018/19 or so--I wasn't irritable back then, we would just get into arguments over chores and money, she was rather easily angered and disrespected back then. 2018 is when my Dad passed away so it was a stressful time for her. In 2018/19 incident, I remained calm, didn't stop her from calling the police, the police came, I was calm and cooperative, they took me to the hospital for a psych evaluation, I was deemed normal and sent home the same night. This time, however, I was frustrated and tried to wrestle the phone from her and in doing so knocked her to the ground. She became hysterical, called the cops and it escalated into a battery charge. I was committed in a psych ward for 3 days, then released and basically I had to demonstrate compliance with treatment by taking an antipsychotic for a good long while. I had no choice but to take medicine. The run in with the authorities sobered me up right away, and my irritability and behavior improved immediately. I'm positive it was a temporary situation and at most I should have been medicated for a few days and would have improved naturally. I didn't feel the medication made any difference. My family relations have been totally serene for the near year and half since my incident (me, my older brother, my Mom and my dog live together in our family home.
My Dad passed away in 2018; my brother and my Mom, mainly my brother, run the family business).
It was in the psych ward that the psychiatrist prescribed me paliperidone, misdiagnosing me with schizophrenia without evidence (except for, perhaps, remnants in my personal file about a only once previous incident which I will talk about later) (I never had delusions nor hallucinations in my life, nor have I ever had long term or medium term persistent strange behavior/irritability or anything that can be construed as being psychotic symptoms, etc.) and claiming I could do anything I wanted to/achieve anything I wanted, if I took this drug (he was impressed when I told him I had a 1480 SAT score). He couldn't have been more wrong. He didn't warn me neither of the typical "claimed" side effects (man-boobs, sexual dysfunction) nor of the notorious syndrome we all know of now, which might be called NIDS, paliperidone induced, or Paliperidone induced deficit syndrome.
(If only I had known, at any time, during those first five months, of the true damage paliperidone could cause, then perhaps I could have been on it for less time, switched to a "less-dangerous" antipsychotic, and have avoided paliperidone syndrome...
abilify has still proven to be hazardous, lawsuits have been settled with Big Pharma for paliperidone, abilify and other antipsychs and I've heard NIDS horror stories produced by other antipsychotics, and with all the failure to report and acknowledge such side effects and incidences in antipsychotics, by psychiatrists and big Pharma, one would want to be cautious with them. Psychiatry's batting average with me regarding antipsychotics is a perfect 1.000 of causing, every time, irreversible severe side effects, as I'll explain. These irreversible severe side effects should result in these medications being banned--I don't believe even severe continual psychoses by even the worst criminals should justify and excuse these side effects, much less should people with mild or non-existent mental health problems/psychoses be exposed to these risks. I understand antipsychotics work and people need them, but the medical profession has to have antipsychotics that meet minimum safety standards).
The first day I took it (end of June/beginning of July 2021) I was in excruciating whole body physical pain. That was the first sign this medication could damage my body. They gave me hydroxyzine for this and the pain went away. I would continue taking hydroxyzine with the paliperidone until I stopped them both in January 2022.
Later, in August 2021, I began to experience some painful mental effects, similar to what I describe later in the onset of insomnia. I would feel a mortal heaviness with regrets or a wistful, painful regretful nostalgia about my life. Such unpleasant thoughts emerged without my control, and I'd never experienced anything like it prior in my life. Later in September/October, I would have uncomfortable physical feelings and awareness in my dreams. Other than that, however, I was fine the first five months. Then, acutely, in early December 2021, my syndrome began.
Main syndrome, begins December 2021 (-present)
All these symptoms began at the same time
Insomnia
For the first month and a half, I had severe difficulties sleeping and napping. Often times, when I attempted to sleep and was trying to fall asleep, I would find that my brain would involuntarily recall memory snippets, sometimes moments of regret or embarassment, or even regular moments, but it would be with sudden and high frequency and it would be painful, like a physical and quasi-emotional jolt, so that it would be like painful static noise that made sleeping and napping difficult if not impossible. It was very strange and hard to describe and distinct, I never experienced anything like it prior to paliperidone. My psychiatrist prescribed trazadone for the insomnia and I also tried taking benedryl. Neither really helped and I eventually just started sleeping better until the issue went away completely after a month and a half. This was the only symptom that went away.
The rest of these symptoms have stayed consistent throughout and not improved or changed
Depression with severe and total anhedonia. Loss of all ability to feel enjoyment, feel joy, and derive pleasure, aside from a basic and much reduced, and often brief, but often not-present, enjoyment in eating, using the bathroom and sleeping.
Loss of endurance, energy, passion and zest and motivation; and lots of lethargy
To be certain, I wasn't depressed "about" anything. It wasn't related to the ups and downs of life and events, or anything about behavior, cognition, thought, lifestyle, etc. In my life, I've certainly had "ups" and "downs" related to life and events. But I never had anhedonia before this.
Loss of exercise faculties
Greatly decreased endurance and strength
Loss of motivation for exercise activities
Loss of enjoyment in exercise activities
Seeming shutdown/disappearance of the exercise breakdown and recovery process
Gone is the pleasure in training, the happy soreness of muscle breakdown and the enjoyment in recovering, with the cascade of hormones from onset of sleep, to the mood and libido and beauty boosting effects. Before, for all of my adult life, I've regularly enjoyed running, going to the gym, yoga, swimming, basketball, volleyball, etc., and jogging and walking my dog. Never before had I had any problems with exercise like paliperidone syndrome produced.
Notable: my family care health practitioners, talk therapist and second psychiatrist kept suggesting to keep exercising, keep going outside, and "fake it til you make it" but while this may work with normal etiologies of depression, it does not work at all with NIDS/paliperidone syndrome. These things just don't work like they do normally, because paliperidone syndrome fundamentally seems to destroy the receptors in the nervous system. Thus, no amount of exercise, walking, meditation, prayer or forcing oneself to work or go to school, makes any positive difference or has any effect whatsoever, other than increasing stress and exhaustion. I have found lifestyle, behavior, diet, and thoughts have zero positive effect whatsoever on this syndrome, the symptoms, etc. Of course all these things used to work great and normally, for all the years of my life before this syndrome. Of course, eating poor and untasty food still is unpleasant, but eating healthy, aside from avoiding the displeasure of poor food, does not reap any benefit on the symptoms, recovery, etc. of this syndrome. Many doctors and psychiatrists, it seems, will also misidentify/misdiagnose the symptoms of NIDS/paliperidone syndrome as being the negative symptoms of psychotic disorders like schizophrenia. There was a research study by Japanese scientists specifically warning about and against this. One can rule out this syndrome and its symptoms as being the negative symptoms of schizophrenia by looking at the patients history before paliperidone. In the years when they were first suspected for a psychotic disorder like schizophrenia (whether accurate or not), to the time right before taking paliperidone, did the patient ever experience symptoms like paliperidone syndrome that might be called the negative symptoms of schizophrenia? If true, then that might be grounds for such a suspicion, but if not, then it's clear that the person never had the negative symptoms of schizophrenia, and these symptoms (which far exceed the negative symptoms of schizophrenia) of paliperidone syndrome have an acute cause and onset after paliperidone.
I should disclose that I had one prior time of stress and strange behavior that got me into trouble, just one prior time in my life, in the Spring 2010 (I was 21 at the time), for which I would take abilify from Fall 2011/Spring 2012.
(like my second time taking abilify, it was a low dose, 10mg/5mg or less, caused severe irreversible weight gain/obesity, and also caused reversible sleep apnea, which went away after a few weeks) My community psychiatrist at the time, the same as my second psychiatrist years later, suspected schizophrenia or some psychotic disorder but never made a conclusive determination. Like 10+ years later in July 2021, the first time in Spring 2010, I sobered up quickly after running afoul of the authorities. I was not on any medication for a whole year and a half until a court resolution of my incident mandated I start taking medication for awhile. I was fine during this whole year and a half before the court resolution: no strange behavior, and as I have maintained, I've never once had delusions nor hallucinations in my life. I was fine in the 10+ years between the two incidents I mention. I say this to corroborate my claim that I have never suffered from the negative symptoms of schizophrenia, and never suffered from the symptoms of paliperidone syndrome until its acute onset after taking paliperidone for five months. My current psychiatrist and my talk therapist both agree with me on this matter, that the paliperidone syndrome is not the negative symptoms of schizophrenia and that this is in fact NIDS/paliperidone syndrome. I say this, again, because there are critics on this forum and in our medical professions that would deny the existence of NIDS/paliperidone syndrome and its possible severities and write it off as the fault of the patient's behavior, lifestyle, and as being symptoms of a psychotic disorder. If the person were in fact lazy and not practicing a good lifestyle before taking paliperidone, etc. and if the person were continuing to experience psychotic symptoms, especially severe ones like hallucinations and delusions, then perhaps there is a case for that. But if the individual doesn't have continuing psychotic symptoms, never has had the most severe ones, has never had the negative symptoms of schizophrenia, and has never had the symptoms of paliperidone syndrome prior, and that they have been successful all through their life in lifestyle related to these areas/symptoms (artistic, social, romantic, hardworking, athletic, beautiful, religious, meditative, intelligent, capable and accomplished in school and at work), as is my case, then it's clear we can rule out other causes and recognize it as severe NIDS/paliperidone syndrome. I say it, again, to give my evidence to others that a very severe version of NIDS/paliperidone exists, which destroys ones' life completely in all these areas, and that what I share is what I've found to be true (what works, doesn't work): so far, no methods or therapies have worked, and that the severe version of NIDS/paliperidone can be suspected to have no known medical cure. In those who are lucky, it seems, time may bring healing generated by the body, perhaps. This underscores the severity, seriousness, outrage and injustice of this syndrome, caused completely by the medicine, with Psychiatry and Big Pharma at fault, with neither acknowledging the existence of this syndrome.
Loss of ability to do chores, including cooking
For all the years of my life, I've been a very healthy, passionate and fanatical eater and ardent cook. All that is gone. I've lost my ability to cook, my motivation and enjoyment to and in doing so, and my motivation and enjoyment in various healthy
eating practices I used to do. I don't feel their benefits either. Neither does eating healthy alleviate any of my symptoms.
Loss of ability to take care of my dog (walks, outings)
For all the years of her long life, I've been my dog's primary walker/runner. For more than a decade, almost every day, we would go out, to all kinds of places (often with the help of my car) and adventures. Of course, these things are the staple and delight of a dog's life. While in the Spring and Summer of this year I managed to force myself to take her out alone or attend dog walks with my mom, unfortunately the rest of the time I've not had the stamina to take care of my dog and walk her exclusively. My mom has had to take up these duties. Therefore, we see that paliperidone syndrome also negatively affects dependents, whether human or animal. Unsuprisingly, forcing myself to go on dog walks did not at any time alleviate my symptoms.
Loss of ability to go to school
Loss of ability to work
Loss of ability to enjoy sunbathing
I have for many years enjoyed sunbathing and in recent years been enjoying it immensely, with access to private land, with my beauty routine, and connection to nature, etc. It's been great for my skincare, my beauty, my mood, my libido, my
self-esteem and social/romantic life, my artistic life and enjoyment, my exercise, etc. After the onset of paliperidone syndrome, all these benefits and capacities related to sunbathing completely disappeared. Sunbathing does nothing for me now, much less alleviate my symptoms.
Loss of artistic faculties
Lifelong artist, enjoyed musicianship (piano, drums) and music production, listening to music, painting, drawing, writing, photography, filmmaking, as well as curating these things and consuming artworks by others. Lost my ability to do these things, to enjoy these things, to engage in artistic worlds and emotions, to feel nostalgia and sublime. Forcing myself to produce or consume art, these days, unsurprisingly, does nothing to alleviate my symptoms.
Sexual dysfunction
Erectile dysfunction: Although I can still get erections, it was clear my erectile function was affected. Penis size, flaccid and erect, was also markedly reduced.
Low/no sexual pleasure and low/no libido
Lost ability to feel sexual pleasure and felt like my libido/mojo totally sapped.
Shutdown/complete disappearance of sweating related to arousal
Shutdown/complete disappearance of arousal/pleasure based vocalization
No capability to feel and enjoy any romantic intimacy
Can't process and enjoy romantic/erotic stimulation psychologically and emotionally, either.
No longer experiencing the usual increase in arousal and libido from (all these things used to work like clockwork):
coffee
exercise,
sunbathing,
fasting/healthy diet,
sleep,
meditation/religious austerity
nor from abstaining/fasting from romantic activity
Loss of social and romantic faculties
Felt like I lost the "bridge" and "apparatus" as well as the "inner light" that before allowed me to socialize and romance--best way I can describe it. Aforementioned inability to feel and enjoy romantic intimacy in any way.
Loss of beauty faculties
Normally, I regularly engage in and take much pride and derive much joy, a lot of it overlapping with social and romantic faculties, in maintaining my physical beauty, through exercise, physique, skin care, self-hygiene, appearance, fashion, etc.
Lost the motivation to do these things, lost the pleasure in doing them. Feels like I lost the ability and capacity to be beautiful, like there's no possibility of it. Hard to explain. Forcing myself to do these things, unsurprisingly, does nothing to
alleviate my symptoms.
Loss of religious faculties
Loss of ability to engage in and derive joy from:
Meditation
Prayer
religious and spiritual emotions and thoughts
austerity, sacrifice, sublimation
Loss of sensitivity to coffee/tea/caffeine
Normally, all my life, these had produced dependable, tremendous boosts in mood, awareness and alertness, physical stamina, and libido. All that, totally gone. Interestingly, I've only read maybe two to three sites on the internet that make any discussion of loss of sensitivity to coffee/tea. This effect (loss of sensitivity) clearly proves that paliperidone does unusual, cruel and unique damage that is on the frontier of science. None of my psychiatrists or regular doctors had ever encountered or heard of cases of people losing their sensitivity to coffee/tea. Unsurprisingly, when I asked them repeatedly about this matter, its clinical significance and if they could do research or contact experts about this problem (which they knew nothing about), they balked, made excuses and refused to help.
Loss of sensitivity to alcohol
Dysphoria
Feeling of being uncomfortable in my body
Treatment--Standard medical measures
I saw my family care physician a bunch of times and managed to get my prolactin, testosterone, urology and thyroid/blood lipids checked. This was approximately from January to March 2022. Every one of these things came back normal (urinalysis with microsopy in the case of urology). Aside from being obese from taking abilify in Fall 2011 through Spring 2012 (never was able to lose the majority of the weight gain in all the intervening years, despite tremendous and near constant, exhaustive exercise, diet and lifestyle practices), and becoming morbidly obese this Summer and Fall 2022 from taking abilify, and health complications from that including high blood pressure and heartburn, I am in good health. I've had multiple EKGs this year and one electrocardiogram from October 2022, all normal.
Treatment--Lifestyle
Like I mentioned before, in my case, lifestyle, behavior, thoughts, etc. have had no effect whatsoever on the symptoms of this syndrome: exercise, walks, going out, being social or nonsocial, going to school, not going to school, working, not working, praying and meditating, not meditating and praying, etc. have made no difference. I actually did a semester at the university from January to May 2022--I was already enrolled before the onset of paliperidone syndrome in December 2021. As you can imagine, feeling no pleasure nor joy in anything, including art, and having no social/romantic capacity nor pleasure made it awkward and difficult but I soldiered through. However, after that one semester, it was clear I could not do any more. (I'm finishing up an Art History degree and am one more semester away from completion). I have retained my cognitive and intellectual capacities during this syndrome, but my ability to do such work in volumes and to concentrate is greatly affected.
I share a lot of this, not to discourage people: there are many on these threads who have the great fortune of recovering quickly, within 6-7 months, after discontinuing paliperidone and/or onset of paliperidone syndrome. It seems like for those individuals, conventional antidepressants and lifestyle factors can make them feel better and even help them recover faster. But there is a critically suffering subset of people with the severe type of paliperidone syndrome, who haven't recovered at all within 10-11 months post discontinuation of paliperidone and/or onset of the syndrome, and I'm in that category where absolutely nothing has worked at all.
Treatment--Psychiatry
I didn't find out about NIDS nor this forum and other people's experiences with a paliperidone induced syndrome until this October, 2022.
Yet I was certain from the beginning of its onsent (December 2021) that this was a syndrome and that it was caused by paliperidone. I have never had these symptoms or problems in my life until their acute onset after taking paliperidone. Up to that point, the two psychiatrists in the community, through my insurance, who had overseen me taking paliperidone, had told me that the worst that could come about from it was "man-boobs," and certainly they told me nothing about the risks of this syndrome we all are familiar with and its symptoms. It later turned out that no psychiatrists I have talked to through my insurance, nor any health care professional for that matter, was familiar with NIDS/paliperidone induced syndrome, or even the possibility that antipsychotics can cause these severe effects (depression, anhedonia, sexual dysfunction, and so much more).
So in the community, I started seeing one psychiatrist from August 2021 to about October 2021.
Then I started seeing another psychiatrist from October 2021 through October 2022, until I started working with my third and current psychiatrist.
So, I was with the same (second) psychiatrist from the onset of this syndrome in December 2021 until I started meeting with a new psychiatrist in October 2021.
In January 2021, we switched off paliperidone, swapping for abilify, 10mg and later reduced to 7.5mg.
I stopped abilify starting in October 2021 with my new psychiatrist. FWIW, from abilify, I had no side effects other than severe (and likely irreversible) serious weight gain--gained about 25-30 pounds--and a recent bout of sleep apnea.
My old (the second) psychiatrist basically denied all these symptoms (depression, anhedonia, loss of coffee/tea sensitivity, loss of faculties, sexual dysfunction, on and on) were from the paliperidone, with the exception of sexual dysfunction, although he dismissed paliperidone as the cause of even that once it had been 2-3 months off of it/discontinuing it. This was a common experience with psychiatrists and health care professionals: being ignorant of this Paliperidone induced syndrome and apparently finding no mention of it in their databases, they denied the possibility that symptoms it caused could continue to persist after discontinuing it for a few months, a truly faulty understanding.
My old (second) psychiatrist basically would come up with a new explanation, every successive meeting, for my symptoms, all of them clearly innacurate. I would try three antidepressants and abilify under his supervision, and he took to ad-hoc blaming these drugs he had prescribed to me for my sexual dysfunction and loss of coffee sensitivity, even though these symptoms predated them. In the late Spring 2022, he seemed to suggest that my depression and anhedonia was more a product of schizophrenia or bipolar disorder, neither of which would be true, as I had no symptoms of either (again, he may have mistaken these symptoms as being the negative symptoms of schizophrenia, which I argued previously I've never had) and suggested I try a bipolar disorder drug, which I rejected.
He had no expertise whatsoever on sexual dysfunction, a fact that he hid. He provided no resources on the problem of my sexual dysfunction, didn't even recommend I see my doctor for medical tests (hormones, urology, underlying health problems, etc.) and I had to try to navigate treatment and find experts on my own. He later insisted, after about eight months of this syndrome, out of nowhere, that my sexual dysfunction was due to anxiety, even though I had no, nor ever had any, anxiety, generally speaking, nor any psychological/cognitive/behavioral issues or hangups, sexually or romantically speaking. He asked if I engaged in romantic/sexual activity and self-pleasure, and I said I did, if only to check in to see if my sexual dysfunction
continued, and it always remained constant, with no pleasure and no libido. He then, tone-deaf and in poor taste, thought this was the problem and suggested I find another source of pleasure, even though I was suffering a syndrome and a life
precisely replete of pleasure and that was what I was going to him for help for. Not to mention that these psychiatrists were responsible for the syndrome, having been so ignorant of it and thus having caused it (all due respect to the pharmaceutical
companies for their culpability, notwithstanding). He suggested I abstain from all sexual activity of any sort for a month or more. I did and of course it did nothing. My whole sexual functioning was lost, including the usual process/practice of abstinence that leads to such pleasurable super libido, which I had practiced in my life frequently before.
During my time with him, we tried three antidepressants:
first, Fluoxetine, 20mg, from December 2021 to April 2022.
Then, wellbutrin, first, 150mg, then 300mg, and briefly, 450mg, from May 2022 to July 2022.
Then, Escitalopram, first 10mg then 20mg, from July 2022 to early November 2022.
These trials were long and painful--waiting at least one month between meetings, for slow changes (one medicine, one dose at a time). Nothing worked whatsoever or provided a single second of relief or efficacy. I had no side effects from the SSRIs, but I developed bad diarhea and severe heartburn from the Wellbutrin. I eventually went to the ER for the severe heartburn and then later scheduled an endoscopy, in which they found evidence of an allergic reaction in my esophagus. My family physician and I agreed this was due to Wellbutrin.
It took me awhile to find a psychiatrist with expertise in sexual dysfunction. My insurance had a provider search function which helped. Surprisingly, somewhere around 97% of the psychiatrists did not have such expertise. My family care physician
and my psychological therapist were equally inept as my old (second) psychiatrist about treating sexual dysfunction. None of them even bothered to mention/offer, say, viagra, etc. for even the erectile dysfunction. I finally got a referral to a urologist in about April/May 2022, and the urologist was equally inept. He said he could only treat erectile dysfunction and could do nothing for low libido/low sexual desire. He gave me a prescription for viagra and told me to talk to a sexual health psychologist for my low libido/low sexual desire, itself a faulty premise. I had made clear it wasn't a lifestyle/psychological issue and it was a medical one and I needed medication. Sexual health psychologists can only provide talk therapy, they don't prescribe medication. I needed a psychiatrist who could and would prescribe medication for this problem and so in July, three and a half months wait, I scheduled an appointment with my new psychiatrist for October 2022.
With my current psychiatrist, we tried Pramipexole from October 2022 to November 2022.
I had theorized that the primary effects of the paliperidone induced syndrome were from its antagonism of dopamine receptors, given that dopamine pathways seemed to be involved with symptoms like anhedonia (general), musical anhedonia,
loss of coffee/tea sensitivity, and loss of libido/sexual pleasure, among other things. I was hoping pramipexole would be the silver bullet for both my sexual dysfunction and my depression-anhedonia. Unfortunately, it had no effect or benefit. I was on a paltry low dose of 0.5,g, increased to 1.2mg in early November 2022, but I developed pretty bad side effects: jaw clenching, diarhea, nausea, indigestion, heartburn, lightheadedness, headaches, some difficulty falling asleep at night and night time itchiness.
Current Prospects: Outlook, treatments, networking, advocacy
As of the end of November 2022, I'm giving duloxetine 60mg a try. I was dismayed in a recent meeting when my psychiatrist told me that, in spite of being a sexual dysfunction expert, he's never managed to cure anyone of low libido/low sexual desire and no one ever returns 100%.
It's clear that conventional insurance and family psychiatrists and health care in this regard--the treatment of the symptoms of NIDS/paliperidone syndrome--have been atrocious, callous and incompetent. My symptoms themselves resemble
treatment resistant depression and treatment resistant hyposexual desire disorder/sexual dysfunction/low libido, sexual anhedonia, whatever you want to call it.
The truth is, it's even worse because these were not natural in etiology but themselves caused by paliperidone, and we know this paliperidone syndrome in severe cases can be very untreatable and even permanent. It's clear that these symptoms are on the frontier of science, medicine, psychiatry, etc.
It's sad that, especially for men, in all of medical history up to us already being nearly in the year 2023, really no one has bothered to find nor develop a treatment for low libido/low sexual desire, assuming normal hormones, urology and no underlying health conditions. From my research, it seems like the only treatments are dopamine agonists (wellbutrin, and the restless legs syndrome/parkinsons drugs used off label, like pramipexole) and they are not official treatments but off-label.
It's also very sad that nobody is trying to find or develop a treatment for NIDS, or the paliperidone induced syndrome we all talk about. This is a very common problem, and in severe cases it's life destroying. Even if it were rare, it's standard medical practice and obligatory by the values and traditions of humanity and medicine that these side effects and this syndrome be acknowledged, reported, and that psychiatrists and health care professionals warn their patients in advance and concurrently during treatment. As none of the psychiatrists and health care professionals I've encountered knew about this, were educated about it, or read about it in databases, and few are likely to be interested in warning their patients even after having learned about it, there is obviously a serious systemic failure in Psychiatry on this matter. Some may not follow up with patients and don't witness the patient with the syndrome; some may see it and confuse it for something else, like the negative symptoms of schizophrenia for instance; and some may see it and ignore it willfully. It's clear the profession has overwhelmingly failed to report these cases. Patients should not have to ever suffer from this syndrome nor should they be made to run the risk of having their life destroyed by it. It's clear that since their original development, psychiatrists have long known that antipsychotics cause apathy, lethargy anhedonia and sexual dysfunction.
Besides not adhering to basic medical standards, and issues of incompetence and database reporting problems, I suspect this issue to be deliberate and willful on the part of psychiatrists.
One can imagine two reasons.
First, the monetary influence of the Pharmaceutical industry on psychiatry: it has previously been reported that the industry has had undue influence and corrupt practices in regards to marketing and defending antidepressants (Eli Lilly), including undue influence on and tampering with research studies and conclusions, influencing the FDA, monetary incentives for psychiatrists, and suppressing dissent and criticism. The same thing may be true for antipsychotics, including but not limited to paliperidone and abilify. Consider: Bristol Myers Squibb settled a lawsuit over concealing weight gain effects of abilify in 2016; Janssen, acquired by Johnson & Johnson, settled a lawsuit concerning manboobs with paliperidone. IIRC, the abilify lawsuit was settled in the hundreds of millions, while the Jannssen lawsuit/s were settled for less amounts. It indicates that these antipsychotics are big money for these companies, if they can shell out this money in settlements. Furthermore, I consider these Coming off Paliperidone threads: I haven't heard anyone complain about manboobs, actually (surprisingly), and I only recall a few people complaining about the weight gain from abilify (which is extremely severe in my experience), which leads me to believe that paliperidone syndrome is a much more severe problem than the problems addressed by the aforementioned lawsuits, by a scale of 10 to 100, at least. First, I'll argue that paliperidone syndrome itself is much more severe in severity, suffering, and damages and anguish than the "manboobs" problem. Second, I'll argue, from the numbers on these threads, that paliperidone syndrome is far more common than the "manboobs" problem.
It seems like these lawsuits also are mostly related to off-label uses, meaning that society, the law, etc. willfully ignores the needs of patients who suffer from being prescribed antipsychotics because they could have a psychotic disorder or even were misdiagnosed. There have been no legal actions, consequences nor accountability for the most infamous of side effects from the antipsychotics, the NIDS (which itself is an inadequate term). Seems to be a matter of social control and a lack of respect at all for people so diagnosed or misdiagnosed.
The second explanation, not necessarily exclusive, would be that the Psychiatric profession itself, independent of Big Pharma, benefits monetarily from antipsychotics and that they also afford Psychiatry power and authority and the ability to abuse power. Thus, damning reports of the life destroying effects of antipsychotics would discredit and disrupt their power and authority as well as revenue.
Make no mistake, this is certainly one of the worst injustices in all of Medicine and Psychiatry. In my opinion, it's the worst injustice of our time outright, in proportion to the amount of attention, advocacy and support it gets (does not get). Unfortunately, few if any journalists, NGOs, lawyers, doctors, etc. care about this injustice. I hope that can change and folks, including this community, can spearhead needed reform so that this syndrome is acknowledged, all its incidences responsibly reported, Psychiatry and Big Pharma kept accountable, and patients and consumers duly warned. I hope that those who have suffered it, especially the severe forms, may get justice and damages and remedies. The suffering caused is incalculable; it destroys lives. Those who've suffered it deserve compensation, furthermore, for:
medical expenses (especially since effective treatment options are almost completely lacking for the severe form of the syndrome, and that those suffering, taking the responsible initiative, will still spend lots of time and money trying many and almost any therapy in the slim hope that something will work), for disability (inability to work, go to school, take care of oneself, etc.) and survival,
for dependents (inability to take care of children/pets, etc.)
and for legal advocacy,
Otherwise, it seems, we all will have suffered for nothing.
I compare paliperidone and its destruction as similar to a weapon banned by the Geneva Convention--it's a novel manmade horror and weapon that can cause irreversible life destroying damage in areas already on the frontier
of science and medicine (these areas themselves without good treatments). Its damage is unique, cruel and unusual and there are no standard medical treatments available. There appear to be few prospective psychiatric treatments available, much less proven. For severe forms of this syndrome (wide array of symptoms and they persist and do not improve even 10/11 months post discontinuation of paliperidone), it appears no treatments are available.
Currently, my hope and effort is in finding better psychiatric care and expertise.
I am looking into contacting national and world-wide experts/contacts for Neuroleptic Induced Deficit Syndrome and sexual dysfunction. If anyone has contacts/leads,
please DM me.
I will also press my current psychiatrist about reporting my Paliperidone syndrome to the appropriate databases (in addition to my severe and, as of 10+ years, irreversible abilify-caused obesity) and whether the related insurance Psychiatrists will be willing to warn their patients of the severe and, as of present, irreversible side effects I have experienced (from paliperidone and abilify).
I hope to continue to share my journey and what things I will have tried in an effort to alleviate and cure these symptoms and this paliperidone syndrome/NIDS. Of course, my greatest hope is to find a cure.
I hope we can spearhead need reform as well. Paliperidone syndrome is real and undeniable and is mostly unacknowledged by doctors, psychiatrists and the pharmaceutical companies as well as the public. I hope we can find law firms to contact for civil and criminal litigation and class actions and get NGOs, rights organizations, social media, news and investigate journalists involved. Only litigation, advocacy, teaming up and public awareness can affect the needed change. The medical and psychiatric establishment is doing nothing to remedy this evil they are at fault for. Some people in these threads have suggested not to do some of these things, but we precisely absolutely must do all of these things. The reality of this problem is that it is a true injustice, perhaps the worst of our time, and is super-qualified for these actions. There is also at least a quasi-precedent--previous lawsuits and settlements involving Bristol Myers Squibb regarding Abilify and Jannssen (Johnson & Johnson) regarding paliperidone. The only reason not to do these actions is the valid fear and reality, already demonstrated by these companies and the profession, that they will retaliate, countersue, deny, defame, cheat, conspire, intimidate and repress. We should therefore diligently endeavour to replicate and preserve this community of victims of Paliperidone syndrome elsewheres: other anonymous message boards, other websites, etc. and we should also team up and network in real life: DM each other, get connected on social media, meet in person, etc. This forum and these threads are a treasure trove. Mods/administrators should back up these threads offline. I have not found a collection of such reports on paliperidone syndrome anywhere else, nor anywhere else have I found a community of sufferers supporting each other. If these threads and/or this website were to disappear entirely, prior to our Victory, our cause would be in trouble and this evil will be prolonged much longer. If we fail to team up and take much action, this evil will continue indefinitely.
