Hello, I'm a guy with Schizophrenia

Family
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Hello everyone,

I’ve spent all my time on the forum for people with schizophrenia but I thought I might be able to help out a little bit over here in the family and caregiver forum. I can provide the perspective of someone with schizophrenia and that might help you understand your loved ones better.

I was diagnosed as a high functioning schizophrenic 18 years ago, back in 2004 while in University. I was working towards a B.Sc Biology but that all went to hell when I became psychotic and I had to drop out and get help.

I spent 5 months in a mental health facility getting better. I had auditory, visual and tactile hallucinations and I was delusional. I experience a little bit of the “flat effect” but negative symptoms and cognitive problems were never really a problem for me.

Back then they put me on a very high dose of medication, 40mg of Olanzapine (Zyprexa), and it knocked me on my ass. I couldn’t work or go back to school, I slept all the time, became extremely overweight (240lbs), developed diabetes (A1Cs of 8-9), my cholesterol and triglycerides were way too high, but the medication kept me stable, albeit at a cost to my physical health.

In 2019 I switched to 60mg of Lurasidone (Latuda), my physical health improved dramatically while keeping me stable, my diabetes is under control, I lost 80lbs and I am a healthy weight now. My cholesterol, triglycerides and blood sugar are all good. I have 2 part time jobs. One as a delivery driver and one as a freelance computer technician. I work about 20 hours a week, give or take. I am also on disability.

My cognition was never affected so I thought I may be able to help answer your questions about what it’s like to have schizophrenia in a coherent manner so you can develop a better understanding of what your family, friends or patients are going through.

Keep in mind every person with schizophrenia has different experiences but if I can help you understand what it’s like based on my experience then I’m happy to do so, you may be able to understand your loved ones better and provide better care.

There is an old saying…

“In theory there is no difference between theory and practice, in practice there is”

What family, friends, caregivers, doctors, psychiatrists, therapists and other people in the general population have is a theoretical understanding of schizophrenia, but they will never know what it is like to actually have it, and while their intentions are good, that lack of practical experience with the disease can lead to a lot of misunderstanding, confusion and stigma. I’ve read a lot of that theory too, but I also have practical experience because I have schizophrenia. So I may be able to provide a perspective you can’t get by reading the literature.

Cheers!

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Thank you for providing your story and incite into this disease .

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Hiya @Headspark , and welcome to this forum. Your words certainly struck a chord with me, there was so much misunderstanding, confusion and stigma, especially in the beginning when no one knew what was happening with my daughter’s mental state. So much advice from the unknowing to use “tough love” when I had no idea what hallucinations and delusions she was dealing with. I am happy that you are working two jobs and doing well yourself and grateful that you want to share your knowledge.

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Hello Headspark, My daugter was diagnosed in april last year she has been in a step down facility from the hospital for 9 months. She is on 3 month shots, that leave her a little muddle headed and she still hears voices. They just put her on Welbutrin, not so good so far causes her to cry uncontrollably one minute the next laugh in glee. I know there just trying to help her but she seems like a test subject to me. They said the meds will take a while to normalize in her system. She tells me not to worry even though she is crying she is not sad, she says she cannot control crying it just happens. She has a hard time now talking. She is in her head so much with the voices that she really had to concentrate to talk and listen. So when did you know the meds were not working and how were you able to try different meds. How did you get the doctors to listen to you. ???

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These meds alter your brain chemistry, and because everyone’s brain is wired differently and has differentl levels of neurotransmitters these medications affect everyone differently. What works well for one person can be a nightmare for another.

There are statistical probabilities on what meds work best and lists on the internet stating which medications are considered the strongest or weakest but nothing is written in stone. I went from a very high dose of Olanzapine, which is considered one of the strongest antipsychotics and affects more neurotransmitters in the brain than any other antipsychotic, to a low dose of Lurasidone which is considered a weaker antipsychotic and I improved dramatically.

Dopamine is the primary target of antipsychotic medication, but depending on the medications she is on serotonin, histamine and GABA are commonly targeted too.

When you start playing around with brain chemistry it’s no surprise there is can be changes in personality, cognition, emotions, behaviours, etc… The brain is responsible for all of that. Unfortunately there s no way to predict how a medication will effect you until you try it. I had a horrible experience with Haldol and had to quit after a few weeks, but for others its a godsend.

If your daughter has been stuck in the step down facility on the same medication for 9 months and she is still hearing voices then maybe it would be a good idea to talk with her doctor and try something else. Einstein defined insanity as doing the same thing over and over gain, but expecting a different result. For her to stay on the same medication for 9 monhs and think things will get better doesn’t make any sense to me. Patients typically respond to these medications from a few weeks to a few months, but 9 months seems quite a long time.

It took me about 15 years to finally find a combination of medications I am happy with. I’ve tried Ativan, clonazpeam, paxil, effexor, trazodone, olanzapine, abilify, haldol, lurasidone and several others for various problems.

I’m currently on 1.5mg of clonazepam, 75mg of Trazodone and 60mg of Lurasidone. I’m finally in a much better place.

It takes time and experimentation. Staying on the same thing when its not working, altering her emotional state, and seemingly making her look unstable (crying then laughing) doesn’t make any sense to me given there are so many medication options out there

In a way she is a test subject. No one can predict how any given medication will affect someone. It’s trial and error. You try something, give it some time, and see what happens, if it works and the side effects are manageable great, otherwise move on to something else.

Yes that is true, but typically they start working from within a few weeks to a few months. For example they kept me in the mental health facility for 5 months before they felt I was okay and then released me, but I was feeling find after 3 months. When I switched to Lurasidone it took a couple months to become fully effective.

Yeah, whatever medication they have her on obviously isn’t working. I heard voices in my head too, and I could have conversations with them in my head (i didn’t talk out loud). Those voices went away with olanzapine and lurasidone, but when I tried abilify it didn’t work and I was having visual hallucinations. I saw ghost like heads floating around, but I saw them with my mind, not my eyes, but they were out in front of me and shooting out of peoples faces. Very weird, lol. If it were in your daughters situation I would demand to try a different mediation.

Keep in mind there is such a thing as “Treatment resistant schizophrenia” in which case no medication will work, but might bring some relief.

My medication did work, but the side effects were life threatening. I was overweight because of the medication and my doctor told me I was at risk of a heart attack because my gut was so big, it put stress on my heart. My cholestoerl and triglycerides were too high, my blood sugar levels were way too high which can lead to a ton of problems. Basically I was at risk of an early death because of Olanzpaine. So I started reducing my dosage but when I got down to 10mg I started having symptoms and ended up in the hospital. That is when I met a new psychiatrist who decided to try Lurasidone and everything has worked out great since then. I don’t have any symptoms and all the health problems I was having on Olanzapine are gone.

At first they didn’t listen to me. I was just another crazy person in their care They had me “formed” for 1.5 years which gives them the power to lock me up in the psych ward if I do anything weird. It took time to build trust with them and to show them I’m stable. Now my doctor takes what I say seriously. I suffer from insomnia and asked my doctor for a prescription for clonazepam and he agreed. Then I developed akathisia and I asked him for a prescription for Trazodone and he agreed to that too.

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Hello :blush:. I’m so glad you came here. I’m always reading on the people with SCZ side. I try my best to understand how people with SCZ feel. My son has insomnia. I don’t understand why he can’t sleep and it’s sad to see this. I always think it’s because his mind is not as ease. Can you describe your mind/thoughts when you were in psychosis? We’re your thoughts intrusive to the point of not being able to sleep. Was your mind constantly racing? I really need to know how did you realize you were having delusional thoughts. I need my son to realize this. Thank for you offering help to us :heart:.

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Hello, we schizophrenics are a diverse group. While some of us hear voices, what we hear varies from one person to another. We don’t all hear the same thing, or see the same things, or believe the same things (delsuions),

When it comes to feeling, many of us have flattened emotions. That is an example of a “negative symptom”. Medications can make us even less emotional. Antipsychotic medications are also called “Major tranquilizers” so it’s no surprise they flatten out a lot of people. This is a problem I have. While my cognition is fine, my feelings are usually flat. The types of feelings we do experience are usually negative ones. Anxiety, depression, sometimes anger, fear. It took me 17 years to finally get to a place where I am happy.

I have absolutely brutal insomnia and not being able to sleep is torture. I had to start taking a medication called clonazepam, it’s the only thing that gives me a solid 7 hours of sleep. It’s a class of medications called benzodiazepines. I take 1.5mg every night before bed. The problem with benzos is that they come with dependency risks. At this point I am dependent on it (don’t’ confuse that with addiction, I am not addicted). What dependency means is your body become accustomed to it and when you take it away you have withdrawal symptoms. but it’s not an addiction because I don’t crave them like someone might crave a cigarette. The withdrawal symptoms of benzos can be very serious. If I were to just quit at this point there is a good chance I would have a seizure and possibly even die. It’s a serious medication and a “controlled substance” under government regulations but I knew that going in. it was a trade off I was willing to make so I could sleep. As long as I take it every night before bed I’m totally fine and can sleep properly.

I don’t know what is causing his insomnia but there are different types of medications you can try to treat it. An old antidepressant called Trazodone is used by a lot of people for insomnia, it’s not considered a very effective antidepressant but it’s widely prescribe “off label” for insomnia. Hypnotics or z-drugs like ambien, lunesta, immovane are another solution but you can become dependent on those too. And of course there are benzos like I am on. Clonazepam is one of the best for sleep, or so I’ve heard. Some people use antipsychotics like Olanzapine or Seroquel for insomnia but those are known to cause serious weight gain. so there are a lot of options. In my case melatonin and herbal remedies were completely useless. But with all these medications there are risks of side effects, dependency and/or losing effectiveness over time. Insomnia really is an awful problem to have. Sleep is soooooooooooooo important. After doing a bunch of research and trying various meds, I decided on clonazepam and my doctor agreed to prescribe it for me. I experimented between 0.5mg up to 2mg and found 1.5mg effective.

My delusion was that I was being mind controlled by my mom. I believed the voices I heard were certain people speaking to me telepathically, or that sometimes I was broadcasting my thoughts and others could listen into what I was thinking. I also had tactile hallucinations where I felt energies come over my body (not feelings/emotions). Love energy, orgasmic energy, happiness energy. It felt amazing but I had no control over it, I believed my mom was preventing me from controlling these energies with my mind. I was fixated on this mind control delusion, I couldn’t get past it. I was absolutely convinced I was being mind controlled by my mother and it lead to arguments because I kept telling her to stop but she said she wasn’t doing anything, and that hurt her emotionally, and doubly so because I wouldn’t accept help from her, she was the problem in my mind, controlling me and I was upset with her. It was only after I ended up in the hospital on meds that it all went away then I realized it wasn’t real. It’s all really weird looking back on it, but I don’t believe or experience any of that anymore.

When someone is delusional it’s almost impossible to convince them it’s not real. it’s part of the illness so don’t be hard on yourself, there isn’t much you can do and it’s not your fault. No one could convince me i was delusional, not my mom, friends or doctors. I believed it 100% and there was no compromising my belief… until I started medication.

You’re welcome!

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Hi. Good to hear your experience and how you live a good life with work and purpose despite your negative experience at university. Are you aware that in Torneo, Finland people suffering psychosis are treated differently. They avoid antipsychotics where at all possible and have managed the situation by bringing family together and having open discussions about feelings focusing on the needs of the sufferer. The results are dramatically better than any drugs related treatment. Schizophrenia is a list of symptoms, it’s not a disease. It is something that happens when a person’s mind is overburdened. Good to have you here and share your thoughts with family

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We definitely could use your input…
My son, who is 36, has had schizophrenia affective since 2012. Every time he stopped taking his meds, he ended up in psych hospital.
Now on once a month injection, and therapy. Did gain weight, and now also taking quetiapine fumarate, for his condition. Hope he doesn’t gain more weight! Already overweight from the shot…
Doing good, on disability, and lives with us. So we can see any changes.

He has no friends, use too, but close with family.
What forum do you go to?maybe he would be interested.

Thanks!

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I think it’s dependent on the patient and their symptoms, some are able to go without medication, I am not one of them.

I was on olanzapine and that got rid of my symptoms but had horrible side effects. I switched to Abilify and it was like a sugar pill, completely useless, within a week I was having visual hallucinations, so I went back to olanzapine and my symptoms went away. The side effects of olanzapine were awful so I reduced my dose, when I reduced my dose my symptoms came back.I tried haldol and it had intolerable side effects. So I switched to Lurasidone which has worked out well. So over an 18 year time frame, between meds that don’ work and low dosages my symptoms always returned.

I have a friend in Finland with schizophrenia who is on medication. We chat daily on the Telegram app. She, like me, needs meds.

Not for me. Talking about them, changing my diet, exercising, supplements, etc… don’t work for me. I’ve tried it all. I need medication. The problem is most of these medications are Nasty, many times they don’t work and have awful side effects. I’m lucky I found one that works.

They don’t really know hat schizophrenia is or what causes it. I agree ti is a list of symptoms, and every schizophrenic has there own unique experience, although there are commonalities across individuals. I’ve heard numerous theories but no facts. Genetics, marijuana, dopamine imbalance, trauma, etc…can all cause it. My opinion is schizophrenia, whatever it is, can be triggered in numerous ways. Similar to cancer. Cancer can be caused by chemicals (cigarette smoke), radiation (The sun and skin cancer), genetics (oncogenes), but whatever the cause of your cancer the symptoms are similar, some kind of tumour. I think schizophrenia is the same way, different people may develop these symptoms for different reasons, but the symptoms are the same.

Unfortunately there is no DNA test, blood test, or brain scan that can conclusively say you have schizophrenia. It’s just a set of symptoms you tell the doctor and based on his/her experience they diagnose you, I’ve had several different diagnosis from different doctors, but the majority opinion is schizophrenia so I go with that. I don’t even care about the label anymore, I’m just happy the meds get rid of my symptoms. And they don’t even fully understand how the medications work, just more theories. There is very little hard definitive science on the matter, all we can say for sure is something has gone wrong.

Thanks

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Hi, thanks for your thoughtful and considerable response.

“There is very little hard definitive science on the matter, all we can say for sure is something has gone wrong”.

There is a lot of definitive science on the subject of schizophrenia. The problem is that it goes mostly ignored. You describe a medical approach to tackling the symptoms of schizophrenia. There are other approaches which do not follow the medical interpretation.
If you consider students like yourself who have suffered “breakdown” at University while under the pressure of intense work whilst trying to cope with other pressures of life, then you may consider yourself as suffering a “crisis of thoughts”. Perhaps the unwanted voices and visions is what happens normally to the brain when it is under extreme stress. You might describe this as trauma. What we do know is that successful treatment has come about through the study of the way in which we humans connect with each other, and empathise.

Since the 1980’s in Torneo, Finland a dialogical approach to schizophrenia has been adopted. It is well documented, there have been long-term research studies carried out. It is an approach that is beginning to be trialed and integrated into mental health care systems in other parts of the world. Open Dialogue for Psychosis | Book and conference on using the Open Dialogue approach with people affected by psychotic experiences

Here is a recent ten-year comparative study of adolescents (10 to 20 yr old) who used the psychiatric services in Finland. As you can see different regions in Finland have different approaches to psychosis. In this article the Open Dialogue approach proves more cost-effective over the long-term and the use of anti-psychotic medication is minimal. The use of medication is replaced by a social network understanding in which dialogue is the key element, an exchange of words and feelings to the effect that perspectives gradually change.

EarlyInterventionPsych-2022-Bergstrm-The10yeartreatmentoutcomeofopendialoguebasedpsychiatricservicesfor1.pdf

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I cannot fathom how this actually works. When my son was very ill it wasn’t only mentally, I could literally see it in his eyes. I don’t understand how talking with family would do anything without medication.

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Hi

I found it difficult to understand myself. It was this video that encouraged me to look at “schizophrenia” differently. This short film by Dan Mackler (former American psychiatrist) gives a better explanation than I could ever explain in words.
OPEN DIALOGUE: an alternative Finnish approach to healing psychosis (COMPLETE FILM) - YouTube

Regards

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Yes, it’s unfortunate. The social aspect of having schizophrenia is that it scares a lot of people away. It’s hard meeting new friends too because a lot of people are scared of us due to all the negativity you hear about the condition in the media. A lot of people have there own problems too and just don’t want to deal with us.

Thanks to meds I’ve made a pretty good recovery, no one suspects I have mental health problems, but when I tell people I have schizophrenia the results are not always good, they kinda disappear outta my life. I do have a few good friends that know, I’ve explained my illness and experiences and medications in great detail and they except me for me.

Based on my experience the blunt honest truth is that it may be hard for him to make new friends, not because of who he is, but as soon as you utter the word “schizophrenia” people, for whatever reason, move on and disappear out of your life.

This website has another forum just for people with with schizophrenia (and related psychotic disorders like schizoaffective disorder). Here is a link, he is more than welcome to join us. We’re a fun bunch and we understand each other like no else can.

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I’d like to see the definitive science. It’s all theoretical. They can’t scan your brain and say look at that part, that’s wrong, the research is ongoing. We’ve mapped the human genome but no one can’t point to the gene or set of genes that cause the disorder and develop some type of gene therapy to make us better. Even when you read about the various medications they are not fully sure how they work, and on some people they don’t work at all, while we do know a lot,about the human brain it is still full of mysteries and no one understands consciousness, how it arises and why things go wrong, just more theories.

I found CBT (Cognitive Behavioural Therapy) very helpful improving my mindset but it didn’t eliminate my psychosis. Other types of therapy were useless. I’ve tried numerous supplements, exercising diet and it had zero effect. If the non medical approaches worked as you suggest, word would spread across the internet very quickly among schizophrenics. The fact is, is that what we think about schizophrenia is mostly theory, different approaches work for different people. There is no one definitive approach that will work for everyone. I know schizophrenics that can function with therapy and without medication but still have mild symptoms, there are schizophrenics like myself that are symptom free because of medication, and there are schizophrenics that show no improvement no matter what they do

I suppose that is possible but I doubt it. I enjoy learning. I graduated high school as an Ontario Scholar (A average), I was accepted into the University of Toronto for a science program which is generally considered Canada’s top University. My life was great, school wasn’t pressure, it was interesting and fun, but my mental health problems started first year. I don’t know the reason why I became psychotic, but I wasn’t stressing out about school. I lived on residence, made a lot of friends, but that is when my mental health problems began.

That’s interesting. But the fact is antipsychotic medication is still needed for some people, as you said minimal not eliminated. That goes to my previous point. Schizophrenia is not understood and the “cures” are not absolute. There is a lot of experimentation. What works for one person doesn’t work for another. I am on 60mg of Lurasidone (Latuda), it’s been a wonder drug for me, but I’ve spoken to others who had a horrible experience with it. Open Dialogue may work for some people with psychosis, but keep in mind some people have one or two psychotic breaks, but that’s it, and then they are fine without any therapy or medication. Mine is chronic, without meds it always comes back.

I’m not saying Open Dialogue doesn’t work or is bad, personally I’ve never heard of it, and it if helps some people that awesome, I’m just saying when it comes to this disorder, based on my experience with it and talking with other schizophrenics, the more options there are the better, because no one has come up with a treatment that is 100% effective and works with 100% of patients.

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I have a very open personality, I’ll talk about my experience with schizophrenia, all my hallucinations and delusions, the medications I’ve tried with anyone. I’ve told friends, family, doctors, therapists, anyone that is curious. This thread right here in this forum is proof of that. I hate having this disorder but it’s not my fault and I’ve done everything I can to get better. Talking about never helped me, and I’ve talked about it a lot over the last 18 years.

Talking about it with other patients can be therapeutic though (but doesn’t cure it). Just knowing others are having similar experiences, and that there is a community of people that actually understands what its like because they have experienced it too does make you feel better. You know you are no alone.

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This is the very reason why I decided to create this thread in this forum. Everyone here, family, friends doctors, therapists, etc… They’re all studying us like lab rats and disusing it among themselves, but they really have no idea what it’s like. I can, to a certain extent, provide a perspective none of those people can.

Here is an analogy. Try explaining to someone what it is like to be drunk (and have an altered state of mind) who has never had a sip of alcohol. You can tell them you lose your inhibitions, some people dance around and are happy, others become mean and angry, some people can’t handle it and pass out. There are a lot of things you can say when descrying what it is like to be drunk, but until that person gets drunk they will never really understand it. That’s what schizophrenia is like, everyone is telling each other what it’s like, but until you experience it you will never fully understand it. And just like alcohol everyone’s experience with schizophrenia is a little different…

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I am glad you have created this thread so you can speak first-hand about your experience. There has been a lot of talk about the value of peer-support. There are groups like, “the hearing voices network” comprised mostly of people who hear voices. As you point out where alcholism is concerned there is AA and “friends and family of AA” these groups are very helpful and made up of people who have direct experience of the situation. People who have got through difficult times in their lives can be more understanding of those who have similar experiences.

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Hi there I kept a journal when they changed meds just noting good day or bad day and then over the course of day 30-60 days see how often he had a bad day. That’s how I got my son off hal dol. docs always want to try increased dose but if they are not doing well on it be firm and say no.

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Thank you for your insight on this, I will be questioning her doctor about her meds. One of the problems is she doesn’t recognize she has SZ, and she won’t tell the doctor the truth and she won’t talk to a therapist. They don’t have one at the ranch (step down facility) its only on the phone and only if she asks to talk to one. And I have tried getting appointments with the doctor when she has her appointment. Well long story short the ranch is short handed (still blaming covid) and you never seem to know when the doctor will show. I will start being they’re worst nightmare, to get this issue noticed by them what ever it takes. Thank you again, for taking your time to answer me.

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