Family and Caregiver Schizophrenia Discussion Forum

Is anyone anti-drug?

My dad gets out of the hospital today. He has been off medication for 4+ years with no problems. We have learned that for him, his schizophrenia is the result of a lack of sleep.

Recently his father got a terminal diagnosis and which made his mind race. He certainly has a problem getting a handle on his anxiety because it causes him to lose sleep. After about a week with no sleep, schizophrenic dad comes out. It happens to any of us… just ask the NCBI. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048360/

My entire life, dad has been put on psychotics, and every year, without fail, he goes off of them. I always thought that when dad was being crazy, it was because he wasn’t on his meds. What we learned over the past several years, he was crazy because he was withdrawing from a powerful drug. Like a heroine addict.

My sister and I are convinced that dad would be best off being released with PRN(as needed) sleeping pill and an anti depressant meds and nothing scheduled(daily). Because history shows that he will not stay on anything scheduled. Not to mention he doesn’t need them as evidenced by the previous 4 years, AND the health side effects of these drugs are incredibly destructive.

That’s what we were hoping for, but what we are getting is dad being released on two scheduled drugs. An anti psychotic and a mood stabilizer.

So here we go again. Back to ground zero. Eventually these drugs are going to kill him.

Has anyone had a similar realization? Any progress? Thoughts?

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Yes
My thoughts are people are over prescribed medication…
I don’t really care what anybody here has to say about it since there are many pro meds here…
You’re very lucky that your dad didn’t suffer any terrible permanent side effects from it…
I hate psychiatry’s current system right now.
It needs huge improvement
It’s actually disgusting…
My partner was on 234mg antipsychotic Invega shot for a huge chunk of her life
Now she is on 78mg
Which we will be cold turkey get pretty soon since it’s the lowest dose…
My thoughts are “f&@* them”.
They don’t make anything better.
Because my partner has been detoxing ,she has slowly been able to regain her life back.
My brother is pretty happy to see he never went that route to experience those horrific side effects of the medication which are far worst than the original illness itself???
He’s a high functioning schizophrenic that doesn’t need medication…
Good luck on your journey!
I gave you my two cents!

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The first few times my husband was hospitalized and medicated, he was miserable. They were diagnosing him as bipolar II with strong psychosis, and he was on a cocktail of tranquilizers. He stayed on the medications for a few rocky years, with his physical health deteriorating the whole time- weight gain, muscle spasms, mask-like expression, joint and digestive issues, etc, AND still symptomatic from his MI.

Then, when he was 21, he had what he can only describe as “a vision from God-- and I know what that sounds like.” He said he had a brief sense of direction and comfort for the first time in years, and then immediately felt like he got the worst flu he’d ever had. For three days, he was physically ill, feverish, vomiting, and could not take his medication without throwing it back up. His mother scheduled a doctor’s appointment, and he woke up on the day of the appointment feeling “more normal than he had since he was a teen.”

He went to see the doctor, who told him he needed to gain weight, but was otherwise physically healthy. The doctor said it looked like his body had undergone a complete and spontaneous hemolysis, and all of his blood had destroyed and refreshed itself. I am not joking, and we have the medical records to prove it.

He went unmedicated for a few years after that, but he wasn’t magically cured. It was pretty dangerous because for this period of time, he was convinced that it was God’s will that he NOT take medicine, even when he became dangerously symptomatic again. It was rough.

A few years ago, I finally got him back to a psychiatrist, who listened to his story and said she suspected he was not really bipolar, but probably SZA. The dr started him on Latuda as his primary antipsychotic. It’s been a completely different journey. His diagnosis was changed to SZA and he’s now on a cocktail that really works for him. The side effects are minimal-- he’s actually lost weight because he can be more active and healthy regularly.

This is what is influencing my opinion on medication. My understanding of medication is that it shouldn’t make you a zombie. At a certain point, if you’re suffering because of medication and not your illness, the meds are wrong. My experience with my husband leads me to feel that not being on medication is really risky, because of how unpredictable the symptomatic cycles are. My husband has admitted that the periods of his life where he was unmedicated were still significantly less pleasant/fulfilling than they would have been if he’d had PROPER medication. In his own words, he has said he never thought he would feel as good as he does now. He thought that medication was a long term suffering he would have to bear, the cost of being alive. It isn’t. Meds should make you feel better. I look at my husband and feel like this is true, and possible. Check that the diagnosis is right, press for different dosages, different delivery methods, different combinations of something.

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I couldn’t agree with you more. Whether we are talking about schizophrenia or not. My mother in law was just diagnosed with high cholesterol. As opposed to addressing it with diet, she is put on a med that has in turn jeopardized liver function. I get it, meds are easy. Most people aren’t willing to put in the work. But seldom do I hear it as an option. I think the same is true in the psych field.

All that to say, I do think medicine has it’s place. In my experience my dad does not need it every day. But he does need it some days. Even he will admit that.

Oh, his health is in shambles. Literally the last psych he went to did not want to put him on any anti psychotics because he was worried about his health.

Thank you for sharing! Hang in there!

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I cannot thank you enough for your post. That is very interesting and hopefully helpful to hear about your journey.

I think this is a very interesting insight and very well put.

How difficult was it for you to find the psych that was willing to work with him on the meds In my experience, they(heck we all do it) tend to presuppose as oppose to listen and work with. Perhaps this is where a family member getting involved could be helpful.

It does sound like our experiences are little different in the sense that we know when an episode is coming on. We know the triggers, can recognize the warning signs and have in the past been able to nip minor episodes in the bud. Really, in our instance, his crazy is really just a result of prolonged loss of sleep.

We are at the beginning of our journey in the world of the schizophrenia spectrum disorders. My 18 year old daughter was diagnosed with a mix of schizotypal personality disorder and borderline personality disorder. She had been silently suffering with this for two years before she told us something was wrong.

At this point we are working on getting her balanced establish stability…

This is where meds have their place…
To help provide stability. We are on our way there, but there are still struggles. Of course “normal” life has its struggles too…
It’s just the illness adds new ones or makes them more difficult to deal with.

Being a zombie because of the meds or dealing with other negative side effects is not stability.

I am in favor of a combination of the right medications and natural means for recovery… a holistic approach. Working with the physical (chemical imbalances), emotional and spiritual aspects.

The chemical imbalances may be dealt with by medication or herbal solutions or both. Everyone is different.

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Hello, There is no need for any of us to universalize our or our family members’ experiences, no need to be anti- or pro-medication. We all want our family members to feel better and be able to live lives they want that make sense to them.

Psych meds work for lots of people and for many people, they do not. It’s not one or the other.

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Thank you for bringing this up @Hereandhere . I am not trying to universalize any one way of thinking. BUT I do feel alone. So is asking for advice from people who see things like me wrong?

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I’m so glad y’all can read the signs & symbols of the symptomatic pendulum! There are definitely triggers that we can observe – and sometimes my husband has the insight to observe them for himself. Its becoming more and more easy for him as we stabilize more and more.
I want to say, i agree with @TheSunshineMaras about how overmedicated many people are. When my husband & i discuss it, there seem to be 2 root causes:

  1. People with SZA or psychotic symptoms only rarely have longterm regular access to good psychiatric treatment. More often, it’s a situation where someone is in & out of hospitals, which cycles into a near constant crisis. Common practice in hospitals seems to require the heavy tranquilization of people with psychosis. These tranq doses are not meant to be routine, but i think they often become the ‘norm’, which only feeds the cycle because it doesn’t help. For example, my sister is NOT schizophrenic, but has severe anxiety & depression. She was hospitalized once, voluntarily, and put on MASSIVE doses of risperdal and clozapine. she left with those prescriptions, and because she didn’t have the insurance to see anther doctor, ended up in the ER after months of taking ridiculous horse tranquilizer doses of medication that was supposed to be for 3 days.
  2. The second reason is, my husband suspects, is that men with psychosis are percieved as much bigger threats to others than they really are. He was prescribed serious drugs as a 120 lb teen that he never needed, much less that were going to help.

That is an interesting point about longterm regular access to good psych treatment. In the past it has been swinging from one crisis to another. We get him into the ER, then he goes to the first psych hospital with an open bed. Does your husband have one specific psych? I am curious, say you go to hospital A and end up with psych A for one episode, and the next episode you are sent to hospital B, can you still get psych A? In our experience dad has seen a different doc almost each time. Which certainly doesn’t help.

That is SO sad about your sister. What do you do about that? Has she learned to cope/medicate?

My dad swears the 3rd reason is $$$. I’m starting to believe him.

Is your husband stable now? Or are there still bumps?

Re: my sister, yes, she is doing much better now. Thankfully, she is not SZA, so our conversations about medication and doctors did not require working around paranoia or psychosis. She struggles with bipolar disorder, and is on a really good track now. She is still working with a clinic doctor, but is no longer on the overwhelming hospital tranquilizers. She has two different medications, at a lower dosage, that she takes regularly, and she just started a new job! So things are really moving along for her. She is lucky, we are lucky. I feel really grateful. I try to be there for her as often as possible.

Re: My husband…
yes, we have one psych now, but it’s been a rocky road. We are stabilizing… it’s a constant process, but it feels so much better now than it did even a few months ago. Our current psych is not related to a hospital at all, but is part of a psychiatry practice. I found someone in our insurance network, we had to wait 2 months for an appointment to open up, but we’re in the system now and he has regular monthly appointments.
Let me say, It’s a GAME CHANGER. My husband has asked me to go with him to his appointments so I get as much information as possible. The psych’s office monitors his vitals (blood pressure, weight, etc) and we review every month how the medication is doing, where he is with his symptoms, and what we can do. Sometimes, we leave with a slight adjustment to medication. Most of the time, we leave with no changes to our current routine.

I feel like the lesson i keep having to learn is this…
whether we are struggling with SZA or another mental illness, “support” is the name of the game. Whatever decisions you are making about yourself or your loved ones, MAKE SURE YOU HAVE SUPPORT.
That can look like a lot of different things. Maybe you don’t want to take medication. That’s a valid choice! Support in that case might look like… not taking meds, but still seeing a psychiatrist regularly. The psychiatrist cannot demand that you take medication. They can only recommend, and then support your choices. Having a psychiatrist in your corner means, maybe your father doesn’t have to take medication regularly…BUT the next time he becomes symptomatic, it’s solved with an appointment with the psychiatrist, who writes a short-term prescription for a sleep aid, instead of the symptoms building to the point of hospitalization. That’s a choice you can make, but it works best if you’ve taken the steps ahead of time to have supports in place.

Hospitalization is almost always a crisis point. It’s not treatment, it’s another symptom. And that’s part of why it’s a huge huge problem that, for many people with SZA, it’s the ONLY option they have as far as access to care is concerned.

But most mental health care that means anything for a MI person is going to happen outside of a hospital. Think of it this way: if someone is hospitalized for a heart attack, it does not help if they decide, on a gurney in the operating room, that they are going to be vegan and it will solve everything. They’re still having a heart attack. Could eating healthier have prevented a heart attack? Maybe, but they still need immediate care. Can eating healthier in the future avoid another heart attack? Maybe, and they still need immediate care. But it doesn’t help the current crisis to say “oh, doctor, I don’t need bypass surgery, I’ll just eat this salad and be fine.” You have to treat the crisis, AND take steps to support a lifestyle, and it’s an ongoing thing.

Your dad is right that $$$ is a problem. I’ve mentioned before that Latuda was a game changer for my husband. It’s also literally $1500 for a 30 day supply, because there’s no generic version of the drug yet. It’s ridiculously expensive. We cannot afford that! We have really good insurance now (Thank goodness-- we were uninsured for a while, and it was a whole other monster) and Latuda would STILL BE $300/MONTH. Luckily, our psychiatrist was able to give us a discount card that has cut the cost down to just $15/month.
But… The money problem is another reason I’ll swear up and down that having a regular psychiatrist is worth it, even if you don’t want to take regular meds. I had to be upfront and say “Latuda is perfect, but we can’t afford it, what are our other options?” A good doctor will be ready with other options for getting you what you need. The brand name meds too expensive? There should be a generic . The generic doesn’t work as well, or has a lot of side effects? There’s forms the doctor can complete to require your insurance to cover it. A good doctor will listen to what you’re experiencing, and will adjust their treatment accordingly. If they don’t do that, if you don’t feel heard, that’s the cue to start looking for a new doctor.

So… is my husband stable now, or are there still bumps? The answer is yes to both. He’s much more stable than he was. He’s on medication that works for him, and does not make him sicker. He’s got a psychiatrist who listens and helps him keep his meds on the right track. He’s got a therapist, separate from his therapist, who helps him with coping skills and practical skills for dealing with his though disorder. He’s got me, and I try to advocate for him as loudly as I can. He’s got consistency, which gives him a feeling of security. The security ultimately gives him the freedom to actually be himself, as unconfined as possible by his MI.

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@Fort sorry for the wall of text, but I wanted to make sure I was thorough. Please feel free to message me! I want to be helpful, if I can.
No one explained any of this to me before my husband came into my life, and I hate how so often, the family and caregivers of people with SZA are thrown in to “worst case scenario” situations and forced to make difficult decisions with little to no information.

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Anti drug is the same as anti solution

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My son is in 546 mg Invega Trinza. He is doing very well. The alternative is not an option for him…we have tried it.

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If this was Reddit, I would have awarded this post gold. I can’t tell you how much I appreciate this. I will give you a proper response when I get to a computer. Thank you!

Yes I’m anti medication for long term use.
I’ve had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If you’ll like some ideas on how to get better here’s a link to my short essay Link: http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf
Also I’ve also done some videos on my channel explaining why psychiatry is fraud
.https://www.youtube.com/user/caketheory

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Not wrong to ask, but the thread title implies that anti-drug, like anti-vaccine, is being promoted.

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I very much agree.

Our entire family was “anti-drug” for over 30 years. I had three children natural childbirth without any drugs. We raised the children with natural solutions. We thought psychiatry was bad, and psych drugs were terrible.

Then, my oldest child went schizophrenic, with almost 24/7 episodes of dramatic psychosis and paranoia. Nothing “natural” worked. Perhaps helped a bit, but her life was in ruins, and so was the entire family.

For six months now, she has recovered a life, because of the anti-psychotic, Haldol, injected monthly. So, now, we are anti-“the wrong drugs” or anti-“illegal drugs”.

Each person has their own path. Good luck finding the right type of medical and natural doctors to help your father. It can be done.

It is NOT either/or … it is finding the RIGHT treatment for your loved one. It takes a lot, and I mean A LOT of work.

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Maybe…maybe not. Sleep deprivation is a form of torture. Lack of sleep will literally drive you insane no matter what your previous mental status was.

My son is 15+ years into this journey. What I noted years before the diagnosis was periods of no sleep brought on paranoia and delusions. I put it down as young person who was running a bit on the wild side and drug experimentation. However as he married and settled down it became clear more was going on and eventually the diagnosis was made.

Please consider though, the illness that is causing the periods of sleep deprivation not the sleep deprivation causing the illness. With any chronic illness stress and lack of sleep will send the illness into overdrive and symptoms that may have been manageable prior now are out of control.

That said, many people are anti med. Some are very pro med. The truth is with meds for chronic illnesses, you are managing symptoms of an illness not curing it.

My son is anti med and uses CBT to control most of his symptoms. However several weeks ago those tools began to fail and a bit of a Robin Hood delusion landed him in jail. He has been deemed incompetent and we are awaiting a decision on where he will be treated.

I respect his desire to be non med complainant. I will work with that as long as he is not a danger to himself or others. However as his mother, I can tell you if a maintenance dose of the right med had been found we would not be in the situation we are now and that is really what breaks my heart.

“…ridiculous horse tranquilizer doses of medication that was supposed to be for 3 days.”

I agree with this totally! I think a huge amount of the bad rap for anti-psychotic meds comes from this kind of misuse. And from lazy GP docs continuing the previous prescription without evaluating if it is appropriate anymore.

My sz sufferer needed a full dose to get back to reality after their first breakdown, and because we have good access to medical care, it was no problem to get the medication reduced when it no longer needed to be so high.

But after a stressful event, they got the delusion that they’re never been sick and the meds were a conspiracy. After years of delusions, eventually there was another total breakdown and hospitalization. Then after just two weeks on AP, near total recovery!

In my family, at least, only side effect of anti-psychotics was a nap every afternoon and profound embarrassment over the years of delusions.

Unfortunately, there was another stressful event a few months later, and now they’re off their meds again, sicker than ever, paranoid and hallucinating with no insight, and with another hospitalization probably coming soon.

Also consider that the illness affects everyone differently, and different people need different amounts of meds to be stable. Some people only need it once, some people can taper it off or only need it occasionally, and for some people, maybe the only choice they have is either living in a paranoid nightmare with multiple incarcerations/hospitalizations or living in the real world but sleeping half the day.

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