Do we really need anti psychotics?

Family
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I hope it’s OK to discuss another side of Schizophrenia. I’m having a lot of questions/doubts about how to go about treatment of a first episode. I’m reading Peter Simon’s articles. I don’t know him so read with a critical mind…

This is an interesting article that presents another side of the anti-psychotic issue. I’m a sceptic of the medical establishment. I’m sure we all see the literature that tells us to take these meds with all their horrible contra-indications. I keep wondering how many of the studies I read are funded by big pharma.

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If you do a search, you’ll find a lot of opinions on this hotly debated subject on this page and the Diagnosed Forum, where most members are on meds. They frequently discuss changing meds or tapering, or supplemental therapies.

From what I’ve read and seen, the vast majority of those diagnosed with SZ have a hard time managing their symptoms and dealing with life without medication. Few wish to take meds and many suffer from the side effects. For some, nothing seems to really help. Negative symptoms are the hardest to manage. The person I am supporting (virtually, since we live far apart) underwent classic psychiatric therapy for years and finally tried a combination of meds for a little over a year, but then stopped for good. He blames those meds for his illness or tries to rationalize away why he is in the state he is in. Once or twice he has hinted that he might have SZ but usually quickly backs off. He refuses all medical help, other than of the emergency kind. He severely neglects himself and has numerous, serious chronic illnesses. He is isolated and fearful and trusts very few people, but his basic needs are being met via hired help. If he had found the right combination of treatment after the first psychotic break in his 20s, perhaps he would have achieved a decent quality of life, as many on the Diagnosed Forum had. But that didn’t happen. I support him as much as I can and as much as he will let me, but I stopped trying to change anything. It’s heartbreaking.

I urge you not to waste time now on alternative treatments for your wife, or fall into the tempting denial trap. Big Pharma is not to blame for her problems. Her use of traditional healing treatments shouldn’t be a problem and as you say may help her in some way. But she most likely suffers from a genetically caused mental disorder. She is still young, and she trusts you, which is great, but be prepared for her feelings to change. Her reality is what it is, and all you can do is work with her “where she is” at any given time. You have a long road ahead but you should remain positive. New drugs or therapies will eventually come on the market that may help with all symptoms. Keep trying to educate yourself and working to get the services you need.

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I researched this a few years ago. I am worried about Dopamine supersensitivity

However, according to: What is the risk-benefit ratio of long-term antipsychotic treatment in people with schizophrenia?

However, overall, the current literature does not support the safe reduction of antipsychotic dosages by 50% or more in stabilized individuals receiving adjunctive psychosocial interventions. In conclusion, the critical appraisal of the literature indicates that, although chronic antipsychotic use can be associated with undesirable neurologic and metabolic side effects, the evidence supporting its long-term efficacy and effectiveness, including impact on life expectancy, outweighs the evidence against this practice, overall indicating a favorable benefit-to-risk ratio.

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I’ve been reading. I find it curious that the increases can be huge, 1 - 2 Mg/day, but the literature suggests a 10% reduction rate monthly. I’m wondering if a bigger reduction is OK because it’s only been since Jan.1? I also wonder if a reduction and no issues would mean she’s NOT schizophrenic?

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You’re right, increases are much higher than the decreases. I think increases are aggressive to get the psychosis under control.

Just a word of caution: a 10% monthly decrease could be aggressive. Make sure the psychiatrist is the one monitoring this and not you or your loved one. Reason being, is that they have a lot more experience in seeing what works and what doesn’t.

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Over the past 2 months we’ve gone from 1Mg to 6. Now we’re, under supervision, reducing and have gone from 6 to 3 in about 4 weeks. On my own, I would have come off these, which is what we’re doing, at a much slower pace. The prescribing nurse has told us to stop decreasing and increase if we see issues, but so far so good. My wife hated being “out of it” with the meds. We questioned the diagnosis to begin with so I guess we’ll see if it was Schizophrenia or a 1 off psychosis.

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I have a strong objection to horseshit. And you just wrote a pile of it. Sorry to be blunt but we need real talk and helpful solutions. Conspiracy theories have no place on this board.

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@KevinSkilton, that’s kind of harsh. We all make this journey of learning about the meds our loved ones are taking, and the side-effects are very concerning.

In my son’s case, he’s adapted to the meds and no psychoses going on for 3 years. His psychiatrist said his mission was to see that he didn’t relapse. I don’t know what the end point is, but they (he and his psychiatrist) work as a team to figure out what the dosing should be – it’s called shared decision making. I stay out of it.

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Agree. Was a bit harsh. Sorry

Best regards,

Kevin Skilton

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I haven’t logged in here for a long time, but I browse occasionally. This forum was super helpful to me back in 2018 when my son was undergoing psychosis, and I think everybody here is caring and thoughtful. I also did the Family to Family class with NAMI and again, found help and comfort and good ideas for how to talk to my son. But it does feel hard to talk in either of those places, about managing schizophrenia without medications.

I read the book Anatomy of an Epidemic by Robert Whitaker and it scared me pretty badly. I don’t want to be anti-med, since I think a lot of people feel that meds really help them, and if they do, that is great. But I do also think that schizophrenia (and all mental illnesses, really) are on a spectrum, and it’s not true that nobody can manage without. One of the studies in the book pointed out that a decent proportion of people can recover, given enough time and rest, within 5-7 years. My son was perhaps lucky that while he heard voices, he always knew they weren’t real. He wasn’t very delusional except the feeling that people could read his thoughts. Even that, he knew it wasn’t so, although it was hard for him to shake the suspicion.

So here we are 6 years later. He still lives with me, and he doesn’t have much of a social life outside of online gaming. BUT… he finished his degree in computer science from home during COVID and landed a really great WFH job. He’s funny and pleasant to be around. He’s fit and health - he works out at the gym a few times a week and walks every day. We cook together and enjoy each other’s company. He’s even thinking of trying to date again. I feel like his progress has been extremely slow, but also very steady. My boyfriend and daughter think he’s ready to move out and ought to - I’m less sure, but I think we’re heading in the direction in the next year or so.

So TL/DR; not every person needs medication, nor are they condemned to a terrible life without them.

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@soworried, agree that mental illness is on a spectrum. My son thought the voices were real and were commanding him to do things, like don’t move or you’ll die, and he’d become catatonic. Or to go somewhere, and he’d go missing and we’d have to get the police involved.

5 - 13% of people with schizophrenia commit suicide

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Hi, good to hear your son is doing better. It gives me hope that my son will some day get a little more functionable. My son is now 28 and still mostly delusional, paranoid and has horrible mood swings and is very difficult to spend time with. Doesn’t drive or work and is very overweight, having gained over 100 lbs since he was diagnosed in 2015. He has recently started stealing from his neighbors, which is frightening. I have bribed him to give the stolen stuff back, but he can t seam to stop and know he will get arrested if he continues. Is your son on meds and what, if anything, has made a big difference in his recovery? If you can answer, thanks!

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I agree it’s a spectrum and the need for medication could be on an individual basis. When he was 31, my son was on ziprasidone/Geodon for 3-5 days. We could see a wonderful difference. He might have done really well if we could have gotten him on meds.

In his early 30’s, not being on meds was a disaster.

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Interesting! We can only control so much with this illness. Thanks for your response! It really does help to know others have gone thru this.

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Hi Irene, I’m sorry things are difficult with your son right now. :frowning_face: My son is not on any medication. He’s only been on it once back in 2018 for just a few weeks.

He’s always been a different sort of kid - not formally diagnosed, but just about everyone who knows him thinks he’s on the spectrum though highly functional. So he’s always been pretty introverted, but his first few years of college, he had friends, he even joined a frat. But then in 2018, at the end of his junior year, he withdrew completely while living far away. I finally had the police do a wellness check and he admitted to them he was hearing voices, so they took him to the hospital. He was only there a few days. They gave him an Rx for Risperidone. He came home after that and I got him to keep taking it for a few weeks. However, he started going to an FEP program at the local university and they took him OFF of it. He said it didn’t make any difference in the voices anyway. After a few months, the program signed off on him trying school again, and so he went back in early '19, but did not sign up for classes. He withdrew again, and eventually ended up in the hospital again.

When the lease was up, he moved in with his dad for a few months, then back home with me. For a while our relationship had been very strained - he felt like I was controlling and intrusive and he may have had a point, but of course I was terrified and desperate. He was sour and sulky and I felt like I had to walk on eggshells. But over time we got closer again, and I started to see signs of his old sense of humor. He was depressed, though, about the turn his life had taken.

He had finished 3 years of college before having to drop out, so I was researching ways he might finish up closer to home, when COVID hit. I realized this was a big chance for him, and somehow we got him re-enrolled at his old university and signed up for classes that would get him to the finish line. He graduated in '21 with a degree in CS, and honestly that was enough for me. But his sister helped him with his resume and some code he’d written and published to github favorably impressed the right person, and that October he started a real job, WFH. All of this has been a tremendous boost to his self-confidence and overall happiness.

So how did he do it? I wish I could tell you. He told me that he spent a lot of time just blocking the voices out. I guess I would say it was like a form of meditation. He would focus on a phrase over and over that let him hear his OWN voice in his head instead. I’m not actually 100% sure if he still hears them or not. When he’s around other people, he can be very funny and charming, though he has that propensity to talk at length about his interests without noticing if other people are bored or not. In a way, if he is ASD, it might have a slightly protective effect. He is kind of hyper-logical, and so I think less inclined to become delusional.

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When I first posted this, being new to this whole topic and a first diagnosis of Schizophrenia, I started to research and found that some places treated without meds. Behind all of this was a question about how the whole process works. In our case, my wife was diagnosed during her forced hospitalization. That was a trauma for her. She was diagnosed “Brief Psychotic Episode”. Yes, she was psychotic and the hospitalization WAS necessary. On the other hand the Dr. there made a quick call during a “brief” hospitalization of 6 days. We now think there was more to our situation and, in fact, my wife is suffering something more akin to PTSD as a result of some issues growing up, child abuse, near death trauma, etc… We’re coming off the Risperidone completely and hoping that she’ll just not repeat. The whole thing has trashed her self confidence which was not good to begin with. So sorry for all the confusion, but I still think it worth while to question things. I have the DSM-5 here. The categories are so close and many of the symptoms apply to so many of the diagnoses. When I attended a NAMI meeting and people said “I am this” or “I have this”. Well, I’m not sure it’s best for us to label ourselves as anything. Perhaps that’s a negative in one’s life. I am just me and struggle to do the best I can every day just like everyone else on the face of this planet.

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One would have to question the original doctor’s diagnosis as it would/should be unusual to be diagnosed with schizophrenia after one episode of psychosis. My NAMI class stressed that a diagnosis would need at least 6 months of work with a psychiatrist. As you are learning, what is once diagnosed is not always the same upon further review of symptoms - sometimes years later.

As you have also learned, the world of schizophrenia diagnosis and treatment, is like schizophrenia. Vast differences between the individuals’ symptoms and the treatments needed for those individuals. Categorizing schizophrenia may work for textbooks, less so in real life.

One thing that may help you, and like everything else related to schizophrenia, it won’t be easy to figure out. Schizophrenia is genetically based, and yes, while it could generate in a current generation - that is more of a “zebra” - you have heard of zebra references in your medical research?

Not only is schizophrenia genetically based, but it is a spectrum disorder. In the simplest of terms, there can be schizophrenia light (less symptoms) and schizophrenia heavy (more symptoms).

Autism and bipolar are on the same genetic strand as schizophrenia.

To sum it up, you might find it helpful to look at your wife’s extended family for clues. You are not only looking for light to heavy schizophrenia, you are also looking for light to heavy autism and bipolar. You might be looking for something as simple as a relative with anger issues - anger is a form of mania that presents in bipolar.

I realized in the Family to Family class that my dad, one brother and one sister live with bipolar. My family had always normalized dad’s, brother and sister’s extreme behaviors. My brother was diagnosed with bipolar several years after my son was diagnosed with schizophrenia. My husband’s mother and her sister had schizophrenia that closely resembled my son’s symptoms. Both women had been married had families, and both had lifelong habits of shutting themselves in their bedrooms for periods of time. My MIL often claimed that people in the family had said things that we knew had not been said. We thought she was just a troublemaker. The reality was that she was hearing voices - in the same manner my son heard them. Not mysterious voices, but voices that belonged to the people around them saying rude things to them. (Other voices as well but these are the voices they would talk about)

Keven apologized, it’s all good, we are all just working to solve our problems - or at least get them to a livable condition.

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It must have been my fault for running with the Schizophrenia diagnosis. Afterwards, reading the DSM, I realized that one would have to have symptoms, as you say, for a lot longer than the short time in hospital.

I think part of the issue in hospital was telling the Dr. that sister had issues hearing voices as well, but my opinion is that it was the same type of PTSD thing cause by the same parental abuse. Time will tell… Thanks so much for replies. Great group and nice to have a place to turn to. I’ve yet to meet personally anyone affected or a family member other than here.

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My brother was diagnosed at age 22, highly functional on clozapine 25 years later but has breakthrough episodes every five years or so - I think bc he has a lot of emotional baggage and unresolved issues that get triggered when he’s stressed.

I’ve been fascinated recently with Jung’s ideas on psychosis, that it’s a process of psyche integration pushed to the brink. The person must work through it in order to truly recover. The psyche is lost in a mythic world where their mind makes the abstract/unconscious concrete and the person doesn’t realize that this world is not the same world as our shared reality. Delusions of persecution, martyrdom, grandeur come from the trauma of growing up shy/ignored/abandoned and also shame etc - the psyche manifests phenomena to reinforce the projection that it’s important, powerful, and wanted.

The idea being that antipsychotics just pause this process, draw it out, and when the person compartmentalizes it to function in everyday life, just makes it bound to pop again in another episode. CBTp seems a modern method to work through it, rather than just pause and repress it. A good therapist will take the time to understand the person’s mythos and decode the purpose it serves, and then help the person work through those beliefs about themselves.

Anecdotally, my boyfriend developed psychotic symptoms a couple years ago and came out of it without meds or therapy. I was terrified he would end up with chronic symptoms. But it seems like he worked through it or by the grace of God it spontaneously resolved. Similar background trauma and stress to my brother - father abandonment, isolation and social withdrawal. I was supportive and tried to help him feel safe while gently challenging his delusions/hallucinations…probably in a CBTp type way. Two years later he’s doing amazing and isn’t symptomatic at all. My brother on the other hand, his first episode lasted for years even on meds. He wasn’t in any sort of meaningful talk therapy at the time.

I recently reached out to therapists to find one for my brother when he gets out of the hospital from this episode (his therapist retired a few years ago) and only two responded, one of which said he probably needs more help than what a private practicioner could provide. I replied that it’s probably easy to think a Schizophrenic has much bigger issues than whatever can be improved through talk therapy, but that having gone through CBT myself, I saw a lot of his issues as pretty basic human ones - low self-esteem, trauma symptoms…just so intense and repressed for so long that they can only come out in psychosis.

I see this problem as one of a lack of resources and lack of early prevention/mental health self-care. It would take a very patient, skilled therapist to help someone in active psychosis, and it wouldn’t resolve overnight. If the person is a danger then meds seem a critical way to keep them safe. It should be done with some deep therapy tho. Schizophrenia/psychosis shouldn’t be a reason to brush someone off as beyond therapeutic help. Recovery should always be a goal, not just lessening of psychotic symptoms and making sure the person isn’t dangerous. They deserve and are capable of quality of life, of resolving whatever issues are hindering a healthy self-concept. Reducing someone’s internal world to neurotransmitters that can be fixed with drugs seems so silly and harmful.

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Yes - while there are definitely issues with the current anti-psychotic medications all the evidence from the clinical studies is that the best outcomes longterm are with the medications, although at as low a dose as possible. So best to work with doctors to optimize the medication dose and not give up entirely.

And if possible try to get the person into a CBT for psychosis program - these are available from many clinics now, especially in major population centers of the US and elsewhere.

Active psychosis is very stressful and hard on the brain. The more relapses a person has, the less well they recover, so you really want to avoid relapses and the best way to do that is through careful medication management (and avoidance of psycho/social stress, and other stressors).

I will also mention that families who have been in this situation for a while know that the diagnostic criteria are very vague in this area of mental illness… people will be diagnosed by one doctor at one time as having bipolar, then later schizo-affective, then later schizophrenia, sometimes brief psychotic episodes… just be ready for a ongoing changes in the exact diagnosis and don’t be too confident that any of them are exactly right. Just focus on the symptoms and try to help alleviate them as much as possible. Don’t get too caught up in any one diagnosis.

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