Your parents saved your life before the medication did. So many other parents, understandably, would've handled this poorly and in those cases, the sufferer is lost to suicide or O.D. Thankfully, your parents were right there fighting every day with you. So happy for you now and that you have found some peace and happiness, not to mention the long awaited and overdue symptom relief.
I love the fact that you have such a supportive dad. My dad is also very supportive, in fact, he lives with me because of my diagnosis. I have paranoid psychosis, not schizophrenia though but I'm pretty much symptom free with risperidone. My only troublesome side effect is brain fog with with intrusive thoughts but no psychosis.
Iam on resperidone too and i have no psychosis symptoms at all no voices but my mood is very auful i think to change nowin clozapine cause i heard is working on negative symptoms
I’m currently on clozapine. I’ve been on it for about nine months. I’m still at a really low dose because I’m scared of the cardiac issues it can cause but this video makes me have some hope. I have schizoaffective. Thank you for this video, I’m rooting for you!
My brother has paranoid schizophrenia, he is always anxious and only talks about his delusions, he is very nom compliant and can have hypo manic violent episodes. Me and my father had him admitted a few days ago, we are very stressed as we are still trying to find the meds that work. Thank you so much for this info, I will keep clozapine in mind. One of the meds he tried gave him jaw dystonia, we got him off it immediately, he is currently on risperidone, we will see how that works. Psychosis is horrible, and being in that psychiatric ward is one of the worst feelings ever. Being strong for my brother. You and your dad give me hope that there is light at the end of this tunnel. Good bless.
Please tell us how your brother is doing now. I know this must be so stressful & heartbreaking. What I’m learning here is to NEVER give up. No matter how unwell your brother may be he will know if he is loved & supported. Make sure you yourself have support & rest. ❤️✅👍
I've been through same issues with my son he was non compliant but clozapine was the one that finally helped. Latuda caused the same problems with my son's jaw
Look into viibryd. They make people go through so many medications before they get to this one. It only works with certain people and they do sone sort of dna test to see if it will but those who it does work for it is a life changer and it's not dangerous like these other ones.
The part when your dad said (we’re not gonna abandon steven made me cry so hard). Get well soon inshallah my friend, remember that Allah (god) is the most merciful, it’s a hard test for you and your family but i’m sure you’re much stronger ♥️
My daughter was suicidal. Since starting on Clozapine she says she’s happier (since the voices are so much less bothersome). Her dose is still being gradually increased. Even still, she’s so much more hopeful now and talking about her future. Thanks again for sharing your experience.
This title is important. My good friends share that Clozapine is demonized even when they obtain their refill from the pharmacy! The pharmacists actually demean clients being treated with this drug- THAT'S how bad the stigma is. So thank you for this video- it's SO IMPORTANT 🙏
@@wobina They denigrate. They speak to the clients (my friends,) as though they have a severe cognitive deficiency and thus do not deserve respect. They whisper and giggle between themselves. In short: laugh at their patients brave enough to live with this illness. Just because this medication has a strong association with psychosis. Psychophobia in all its perversion, even at the pharmacy 😭
@@rpink8531 That's interesting. I've picked up lots of anti-psychotics at the pharmacies here and thankfully I've never experienced that. I have had voices pretend to be people around me though and pretend to whisper horrible things about me.
I have a neighbour on clozapine. He had a couple of bad psychotic breaks but has had decades of relative wellness outside of those episodes. It is the drug of last resort.
When Stephen was talking about side effects, I could relate a lot to his experience. Especially with weight gain and sedation. I was on abilify and halodol for about three or two years...the dates are a little fuzzy for me. The doctor recently took me off abilify, but I've found halodol to be very effective... especially with psychosis. Some of my symptoms are a little different though, and there was a period where I considered myself a danger to those around me because of psychosis. I've had many symptoms that I'm ashamed of and it's been a struggle opening up to doctors in the past. I'm actually part of a mental health program called the FACT Team, which is based in Florida. They are really good, especially for people with more severe problems, because they provide financial assistance and come to your house for check-ins, meds, and therapy. I've been with them for about 7 or 8 years now, and I feel like I've improved a lot. Stephen, you seem like an outstanding kid and it's refreshing to see your perspective and experience, as well as others' experiences here on RUclips. I'm glad that you've decided to continue living and that you've overcome a lot of your symptoms. I wish you the best on your journey to recovery and thank you for sharing!
@@SchizophreniaSurvivor you should try creatine thiamine and rinoflavin..these are natural treatements as well as niacin...drugs can't cure they can just hide symptoms
I'm so happy this generation has the second generation drugs. The first generation was like a sledge hammer. I had an acute psychotic break, and they used Thorazine, etc. (i don't think people really improved on them). I hope eventually there is a safer alternative. BTW, tiredness can be partly due to living with a disability. It is much harder, and ordinary things take much more energy. Thanks to you and your dad, you are helping a lot of people and you seem like a wonderful father and son.
Thank you for sharing your story. I recently found your channel and enjoy watching you and your supportive dad. God bless you. My daughter was diagnosed with schizoaffective and tried several antipsychotics for years. After 9 hospitalizations she was finally put on clozapine. Her dose is still being adjusted but she's already doing so much better. It helps to hear about your journey.
I appreciate you sharing the details of the medications. I am the legal guardian for my sister. I need to learn everything I can about the medications. Thank you so much! I am a new subscriber and am so glad RUclips sent you to me!
You and your dad have helped me understand what y 33 yr old son goes through. He got sick with schizophrenia at the age of 19 to 20. He is on a shot of Invaga stestina. Thank you for sharing your knowledge.
My son was diagnosed age 26 in 2016. It has been a tough go, multiple hospital stays. He is currently taking Invega Sustaina and is doing well. He responds well and the positive symptoms are at bay. It is the negative symptoms that are bothersome to me. Flat compared to his baseline. He has been smiling a lot more lately...has his own place and a job and somehow, was able to complete University (without meds) with a chemical engineering degree. This drug Clozapine should be used more than it is in my opinion. It seems more people with this illness quit over unwanted side-effects I'm glad Steven is doing well. There is a new drug in the pipeline coming out in the next year or so that helps with the negative symptoms of Schizophrenia and doesn't cause co-morbidities. Looking forward to seeing what it may do for those who suffer.
Clozapine has made a world of difference for my son...he started on invega sestena and other second generation drugs ...they were better than nothing but then a major relapse...from the age of 15 to 21 he had already spent months in the hospital at different points...at 25 he needed hospitalization again and that's when I was like why not just try the only drug known to truely work...Clozapine...it can be a dangerous drug...blood work everyweek while he adjusts...He my son is a beautiful kind and generous soul...The drug has literally saved him...he is happy.
Stephen, I am so happy that you are doing well even though everyday is probably not perfect but I am so pleased that you have a supportive family because that helps. Thanks already for providing hope, awareness and sharing your experiences.
Stephen, you're such a Leader in this area of advise regarding Schizophrenia. On an empathic level I feel sorry to know how you've suffered to gain your position yet on a philosophical level I see the genius of reality in choosing someone as articulate & together as you to safely lead others in their journey. Thankyou, for your generosity
Thanks, my son's new Psychiatrist is considering Clozapin for my 33 yr old son . He's been diagnosed 14yrs ago and tried several other meds with over a dozen different doctors with unsatisfactory results. Just started researching this med. Thanks for sharing your experience
Schizophrenia is more linked to males, partly because it is highly associated with overactive adrenaline and cortisol levels, as well as a highly overactive immune system, both of which get triggered in adolescent males. Keep up the good work!
Is there a way to calm the contributing immune system over activation that would show with elevated AnA? Or inflammatory markers I assume? I’ve read a lot about adjunct fish oil Nac and reservatrol
My brother takes it. It seems to help along with other meds for anxiety. Overall doing better. Had to cut his lithium in half .. lithium was becoming dangerous to him I had to jump through hoops to get the lithium lowered in half. It was very difficult. Keep praying and supporting the research 💛💛
Oh thank you for sharing this my 24 year old son is currently in a physchartic hospital with paranoid schizophrenia he has only just begun the clozapine because he was not responding to other medications, I don’t know what to do if the clozapine doesn’t work 😢 he’s in hospital since January 2022 and I would give my life up to see him get better, he’s violent with his illness unfortunately 😢 but he hasn’t had an outburst in a couple of weeks. Keep up the great work I wish you and your family well ❤
This drug was tough on me at first. It used to make me feel weak and sedated, not in a tired way but in a very unpleasant way. It makes me slobber at night. From those I've known on it the same happens to them. But it goes the extra mile, kind of even reducing superstition and lighter delusions, less voices.
I had weight gain on an antidepressant that was prescribed for my insomnia. I gained over 20lbs and can't lose the weight no matter how much I diet or exercise. But at least it improved my 20 years of insomnia and anxiety. These psyche meds are very helpful but the side effects can sometimes be hard to manage. I am very happy that the Clozapine finally worked for you.
Hello everybody i am on clozapine for 21 years keep up the faith the hungriness and tiredness will all go Also my body proved that you can stop the blood test to twice a year hold on your trouble will end
Steve and Stephen, I've watched several of your videos and I am in a situation with my daughter which shares many similarities to your experience. My daughter is in Riverside County where she spent a year living on the streets, unwilling and uninterested in being anywhere else. As an adult, she couldn't be made to do anything without consent and until this past summer was not meeting the criteria for an involuntary hold. Long story short, we're in a strange limbo phase where we still can't make decisions for her, but she is not able to take care of herself either. We anticipate another 5150 on the horizon and we're praying that maybe she'll end up at a different hospital, or something different will happen to get some real ongoing help this time. It feels like she has been passed along from one facility to another with no continuity of care. If there is any chance you might be able to have a private conversation with us, my husband and I would love to talk to you about recommended hospitals and doctors in the Southern California area. Your story is a huge ray of light in such a dark and seemingly hopeless situation. Thank you for your transparency and for sharing the comfort you've received, with others like myself.
Thank you so much for sharing. I hope things get better. Wishing you and your daughter the best. I was hospitalized at UCLA and have received my treatment there.
Bonjour, I'm sorry, but i dont speak english very well, donc je vais continuer en français et j'espère que vous pourrez traduire. Mon fils a été diagnostique schizophrène en 2018, il avait 22 ans. Il a commencé par prendre du Zyprexa, puis également Abilify, enfin il a essayé plusieurs traitements et finalement la psychiatre ne lui a pas laissé le choix ce serait le Leponex ou Closapine. Il prend ce traitement depuis 2020 et ça l'a vraiment stabilisé. Il me fait penser à votre fils. Il a toujours été très timide, mais très très calme, très cultivé très passionné. Bref c'est un ange. Même dans la maladie il a été d'une maturité, incroyable. Il a toujours pris ces traitements. Cette maladie est très mal connue. Mais ce fut quand même un tsunami dans notre vie. Step by step.... Je vous souhaite le meilleur pour les années à venir
Hello everybody i am on clozapine for 21 years keep the faith the hungriness and tiredness will be gone also my body proved that you can stop the blood test to twice a year hold on your future is brite
Thank you for the video. My son started taking 100mg, and so far the side effects are awful, your video however gives me hope when I wanted to quit. I wanna give it a chance.
Thank you Stephen for your honesty and willingness to share. We may be in 2023 and LGTBQHS... is well accepted BUT MENTAL ILLNESS IS STILL STIGMATIZED!😡. I have been dx with depression and Borderline Personality Disorder which most videos and information out there label as the worst and a death sentence to the support system. This has been very hard for me. Suicidal every day. Thank you for your courage in de-stigmatizing mental illness❤️
You need a good therapist and psychiatrist. That being said, I have those thoughts daily too, but they aren't nearly as bad as they once were. Here's what I did: I imagined the self-harm thoughts were country music (I don't like country music). They're noise. Bad data. No matter how loud the "radio" gets, I tell myself it's just nonsense. With the right therapist, the right meds, and remembering that the thoughts are just errors, I've learned to ignore them. HTH
I just got diagnosed with schizoaffective bipolar type and have been diagnosed bipolar the past 7 years and I have tried a few antipsychotics. Right now Im on 20mg of Zyprexa and have been doing really well. My doctor says since I have been doing so well on 20mg of zyprexa I will do even better on clozapine and I can take a lower dose. My worst fear with starting it is sedation and I already sleep 12 hours a day on zyprexa and I work a 40 for a week job. I also have tardive dyskinesia and my doctor says clozapine is good for TD. Anyways I love your videos!
Has been a lifesaver as well for our son. Side effects are being managed well with other meds, good to have an advocate to help with this as you obviously do with your dad. . Thanks for you videos , they are excellent and very helpful.
Our son went for almost two decades trying different medications before finally being prescribed Clozapine. He struggled with non-compliance before trying Clozapine. He now reminds us when it is time to take his medications. Like you Stephen, clozapine has saved his life. I wonder if you take any other medications besides Clozapine? Our son has been prescribed Depakote as a mood stabilizer which I have heard increases the negative symptoms.
Thank you, Diana, for joining us on our journey. I would very much like to hear more about your journey and how your son is doing. Stephen was taking Depakote in early 2013, but only for a couple months as it was causing too much sedation. Take good care.
Sir I am schizophrenic to i am on clonzpine 10 years i been hearing voices it been a month i am on clonzpine..i don't want to feel sick again i suffered lots
Clozapine is the last result that some psychiatrists use to help patients with resistive schizophrenia. It does work in lot of cases but the side effects are dangerous. Most important, low white blood cells( assess for s/sx of flu like symptoms regularly such as sore throat, Fever…) orthostatic hypertension, inflammation and/or enlargement of the heart cells, bradycardia, seizures, one serious issue that lot of people are not aware of is severe constipation or impaction; causes build up of feces that might come out from the wrong end. The advice is to be extremely on top of your assessment with clozapine.
Have you connected to Dr. Robert Laitman of Team Daniel Running for Recovery? Dr. Laitman has written a book about Clozapine being the gold standard for recovery from psychosis. Thank you for sharing your story. You are helping us all and giving us hope. God bless you.
You ask,, why hasn't there been any advances in medication,, because it's in the best interest of pharmaceutical companies to keep people sick and dependent,, mental health industry is big business
Haldol has worked for me very well also trileptol hydroxyzine Prozac but I'm schizopaffective so maybe different but I understand when you find the right medicine it's a real miracle what these drugs can do
@@SurvivingSchizophrenia follow your heart it never lies don't ever feel guilty about what's doing best for you. Mental illness doesn't mean your dysfunctional it's a special trait there's nothing wrong with up we are beautiful people
Hello I’m on olanzapine. Gives me tiredness and sleeping a lot. What I did for the sedation is I take lots of B vitamins, vit c, niacin and taurine. Creatine too gives me boost of energy with my whey protein powder. I have changed diet to keto diet. Lots of protein and aminos. Best of luck. 😊
medication works for each person differently for each individual depending on ones anatomy make up. As have been on haloperidol for many years that has also saved my life
Thank you for your videos, we appreciate how your dad supports you and how you tell us all how it is even if some days are not great. My question is at what mg dosage did you have an awaking? Our 15 year old son is on Clozapine and has slowly titrated up to 175mg and shows some improvement but is still in psychosis and says he doesn’t have schizophrenia.
I am on 175mg a day and have been for the last 10 years. That was the effective dose but did take several months to pull me out of psychosis. I am also on 5mg of Abilify which has been shone to enhance the effect of Clozapine.
Olanzapine saved me Stephen. I have side effects but it’s a good compromise. The other drugs they tried me on were torture. I had the patience to endure all that horrible stuff until I found a med that worked for me. I’m in the UK so I don’t know if Clozapine is the same drug as Olanzapine.
Hi Stephen, I am interested in knowing what side effects occurred during the beginning period of your Clozapine titration, for example, fast heart rate?
I lost 3 homes, 2 of them was because I didn't take my anxiety meds, my dad is not as nice as understanding as your father. He blames me for all my mental illness
This is such a tragedy. Clozapine got discovered in the 1950s. The whole world changed since then. CT, Ultrasound, MRI, PET all were invented. Internet came into use. Devices, smartphones, AI, cancer treatments. Complex brain operations while the patient is awake. But for us poor sufferes they have nothing. Last decades did not bring any valuable advancements. It is such a shame. They actually know kind of nothing were it comes from and can barely treat it and the meds have horror side effects. I cannot think of a single field that made no actual advancements. Of almost all diseases, the mechanisms are know. Even with MS and Alzheimer's they make huge steps... It is hell.
My son had great results from clozapine but the side effects where pretty bad. Nevertheless he stuck with it because he'd tried so many other antiphycotics. In the end the combination of clozapine and prozac killed him.
Thank you so much for this video! I’d like to ask if you had any cognitive decline with the psychosis and if the clozapine helped with that? My son has decreased cognition, on clozapine since 8/3/22, we are still titrating up to reach a therapeutic level. And also, do you take any meds for the sedation? Thank you!
Hi Lisa. Thank you for watching. Yes I did have a decline in cognition with my psychosis and the Clozapine did help. I do not take any meds for sedation. I do have a small amount of coffee every morning with breakfast. I took Ritalin for a few months several years ago for sedation and it caused more stress and anxiety, as well as a making me feel physically sick. I have not taken Ritalin in years. I am currently taking 175mg of Clozapine, 5mg of Abilify, and 5mg if Lexapro. I have been on this dose for about 7 years now. If you have any other questions I will be happy to answer. Have a happy and healthy rest of your day!
Hi! Yes I did have auditory hallucinations. They started in early 2012 and lasted a while. I don't have them any longer. My symptoms included hearing voices, depression, anxiety, delusions, and headaches. I just recorded a video yesterday with my dad focusing on psychosis and delusions. It may answer your question in more detail. The video "Psychosis: War of the gods. Dad's Perspective" will be posted Tuesday. Thank you for your comment. Have a happy and healthy rest of your day!
How much dose do you take? I was on 500mg and my Psychiatrist lowered it to 200 because he says it's dangerous, if you can answer that would be so nice
My social anxiety and panic disorder is triggered from my paranoia and schizophrenia. Will clozaril treat my paranoia and schizophrenia? Then after that treat my anxiety and panic?
Hi Stephen, Do you have problems with drowsiness when taking clozapine? My daughter is on clozapine 150mg, the side effects cause problem with her work?
I used to be on Clozapine. It all depends on gender, height and body weight. I had to take over the amount for recommended guidelines because I am 6'2.5", 220 lbs., and male.
I am sorry but these types of medicines are pretty much pushed on everyone in the hospital people who shouldn’t be taking it.both medications you take Abilify and clozapine and nearly killed me. I shouldn’t have taken them and they caused me neurological problems massive weight gain and worse swallowing problems, restless leg syndrome etc. Maybe a small percentage is ok on these medications and it has helped. these medications made me crazy and caused the worst side effects. Schizophrenia is real and there’s better treatment out there but today society has chosen medication when there is people who better without it. I am not saying stop taking your medication and cause you harm or a mental breakdown of course not. We are trained to treat mental health only with these awful medications when there’s alternatives. I am not speaking of just eating healthy or mindfulness that won’t fix the problem. There was very good therapist that understood the mind back then and there was so much funding taken out of mental health in decades now it’s just heavy medication and out patient therapy or out patient programs which. It’s really bad in Connecticut. I have something that most therapists today are not trained properly in dissociative identity disorder and it’s considered rare so I have an extremely hard time getting help for it. My disorder is just as common as yours and it’s basically controversial to get it diagnosed and regular non profit places don’t acknowledge it. I am constantly bullied in hospitals that I need medication and must have something else yet my private aprn and and therapist diagnosed me with and a pastor that helps with trauma. Medication doesn’t work for everyone I am someone that doesn’t benefit from medication and I get worse.
Lot off people make it better with out Medication I tryid little nothing for me There are iven people that get free from schizophrenia but only with out medication People that want and it helps for its ok But it doesn't work on all And Doctors have hard to accept it
Your parents saved your life before the medication did. So many other parents, understandably, would've handled this poorly and in those cases, the sufferer is lost to suicide or O.D. Thankfully, your parents were right there fighting every day with you. So happy for you now and that you have found some peace and happiness, not to mention the long awaited and overdue symptom relief.
I love the fact that you have such a supportive dad. My dad is also very supportive, in fact, he lives with me because of my diagnosis. I have paranoid psychosis, not schizophrenia though but I'm pretty much symptom free with risperidone. My only troublesome side effect is brain fog with with intrusive thoughts but no psychosis.
Thank you for sharing!
Iam on resperidone too and i have no psychosis symptoms at all no voices but my mood is very auful i think to change nowin clozapine cause i heard is working on negative symptoms
I’m currently on clozapine. I’ve been on it for about nine months. I’m still at a really low dose because I’m scared of the cardiac issues it can cause but this video makes me have some hope. I have schizoaffective. Thank you for this video, I’m rooting for you!
Thank you, Ella, for joining us on this journey. Please keep us updated on your progress! Best wishes and be well. Steve
Risperdal and Depacote are working for my loved one.
Do you get ssdi for it
@@bryontharp5790 what’s that?
How much dose do You take?
My brother has paranoid schizophrenia, he is always anxious and only talks about his delusions, he is very nom compliant and can have hypo manic violent episodes. Me and my father had him admitted a few days ago, we are very stressed as we are still trying to find the meds that work. Thank you so much for this info, I will keep clozapine in mind. One of the meds he tried gave him jaw dystonia, we got him off it immediately, he is currently on risperidone, we will see how that works. Psychosis is horrible, and being in that psychiatric ward is one of the worst feelings ever. Being strong for my brother. You and your dad give me hope that there is light at the end of this tunnel. Good bless.
Thank you for sharing. It is so great that you are there for your brother. I wish you both the best.
He needs riboflavin , niacin and thaimine ttfd and magnesium chloride...he has biological issues not lack of drugs
Please tell us how your brother is doing now. I know this must be so stressful & heartbreaking. What I’m learning here is to NEVER give up. No matter how unwell your brother may be he will know if he is loved & supported. Make sure you yourself have support & rest. ❤️✅👍
I've been through same issues with my son he was non compliant but clozapine was the one that finally helped. Latuda caused the same problems with my son's jaw
Look into viibryd. They make people go through so many medications before they get to this one. It only works with certain people and they do sone sort of dna test to see if it will but those who it does work for it is a life changer and it's not dangerous like these other ones.
The part when your dad said (we’re not gonna abandon steven made me cry so hard). Get well soon inshallah my friend, remember that Allah (god) is the most merciful, it’s a hard test for you and your family but i’m sure you’re much stronger ♥️
Thank you very much Youssef for your kind words and encouragement! Have a happy and healthy rest of your day!
My daughter was suicidal. Since starting on Clozapine she says she’s happier (since the voices are so much less bothersome). Her dose is still being gradually increased. Even still, she’s so much more hopeful now and talking about her future. Thanks again for sharing your experience.
Thank you very much! Very happy about your daughter!
This title is important. My good friends share that Clozapine is demonized even when they obtain their refill from the pharmacy! The pharmacists actually demean clients being treated with this drug- THAT'S how bad the stigma is.
So thank you for this video- it's SO IMPORTANT 🙏
what do the pharmacists say?
@@wobina They denigrate. They speak to the clients (my friends,) as though they have a severe cognitive deficiency and thus do not deserve respect. They whisper and giggle between themselves. In short: laugh at their patients brave enough to live with this illness. Just because this medication has a strong association with psychosis. Psychophobia in all its perversion, even at the pharmacy 😭
@@rpink8531 That's interesting. I've picked up lots of anti-psychotics at the pharmacies here and thankfully I've never experienced that. I have had voices pretend to be people around me though and pretend to whisper horrible things about me.
@@rpink8531this doesn’t sound right, are you sure that maybe this is the schizophrenia?
I have a neighbour on clozapine. He had a couple of bad psychotic breaks but has had decades of relative wellness outside of those episodes. It is the drug of last resort.
Thank you for sharing. This illness is so consuming for the person affected as well as the family.
I'm happy you're doing so well!
Thank you!
This is grest ingormation gor the people whi are confused to start Clozapine. Thanks snd Gid be with you ❤
Thank you!
Clopize side effects
Good luck with your treatment. I’ve taken similar medication for over 30 years and enjoyed a decent life. Nice to see your dad supporting you. 👍
Thank you very much Graham!
When Stephen was talking about side effects, I could relate a lot to his experience. Especially with weight gain and sedation. I was on abilify and halodol for about three or two years...the dates are a little fuzzy for me. The doctor recently took me off abilify, but I've found halodol to be very effective... especially with psychosis. Some of my symptoms are a little different though, and there was a period where I considered myself a danger to those around me because of psychosis. I've had many symptoms that I'm ashamed of and it's been a struggle opening up to doctors in the past. I'm actually part of a mental health program called the FACT Team, which is based in Florida. They are really good, especially for people with more severe problems, because they provide financial assistance and come to your house for check-ins, meds, and therapy. I've been with them for about 7 or 8 years now, and I feel like I've improved a lot. Stephen, you seem like an outstanding kid and it's refreshing to see your perspective and experience, as well as others' experiences here on RUclips. I'm glad that you've decided to continue living and that you've overcome a lot of your symptoms. I wish you the best on your journey to recovery and thank you for sharing!
Thank you, Jana, for sharing with us and joining this journey. Be well and stay in touch. Steve
@@SchizophreniaSurvivor you should try creatine thiamine and rinoflavin..these are natural treatements as well as niacin...drugs can't cure they can just hide symptoms
I'm so happy this generation has the second generation drugs. The first generation was like a sledge hammer. I had an acute psychotic break, and they used Thorazine, etc. (i don't think people really improved on them). I hope eventually there is a safer alternative. BTW, tiredness can be partly due to living with a disability. It is much harder, and ordinary things take much more energy. Thanks to you and your dad, you are helping a lot of people and you seem like a wonderful father and son.
Thank you for sharing your story. I recently found your channel and enjoy watching you and your supportive dad. God bless you. My daughter was diagnosed with schizoaffective and tried several antipsychotics for years. After 9 hospitalizations she was finally put on clozapine. Her dose is still being adjusted but she's already doing so much better. It helps to hear about your journey.
Thank you very much! Have a happy and healthy rest of your day!
I appreciate you sharing the details of the medications. I am the legal guardian for my sister. I need to learn everything I can about the medications. Thank you so much! I am a new subscriber and am so glad RUclips sent you to me!
Thank you! You are very welcome. I appreciate you joining my journey!
What a great father - son relationship. ❤
Well done Stephen, thank you for making these videos!
Glad you like them!
You and your dad have helped me understand what y 33 yr old son goes through. He got sick with schizophrenia at the age of 19 to 20. He is on a shot of Invaga stestina. Thank you for sharing your knowledge.
My son was diagnosed age 26 in 2016. It has been a tough go, multiple hospital stays. He is currently taking Invega Sustaina and is doing well. He responds well and the positive symptoms are at bay. It is the negative symptoms that are bothersome to me. Flat compared to his baseline. He has been smiling a lot more lately...has his own place and a job and somehow, was able to complete University (without meds) with a chemical engineering degree. This drug Clozapine should be used more than it is in my opinion. It seems more people with this illness quit over unwanted side-effects
I'm glad Steven is doing well. There is a new drug in the pipeline coming out in the next year or so that helps with the negative symptoms of Schizophrenia and doesn't cause co-morbidities. Looking forward to seeing what it may do for those who suffer.
Thank you for all of this great information. It takes a village! Be well!
Clozapine has made a world of difference for my son...he started on invega sestena and other second generation drugs ...they were better than nothing but then a major relapse...from the age of 15 to 21 he had already spent months in the hospital at different points...at 25 he needed hospitalization again and that's when I was like why not just try the only drug known to truely work...Clozapine...it can be a dangerous drug...blood work everyweek while he adjusts...He my son is a beautiful kind and generous soul...The drug has literally saved him...he is happy.
It's been I think a little over 2 years now and I still want to kiss the ground and thank God for Abilify.
Stephen, I am so happy that you are doing well even though everyday is probably not perfect but I am so pleased that you have a supportive family because that helps. Thanks already for providing hope, awareness and sharing your experiences.
Thank you for supporting us!!!
Your dad is supportive that’s so great, good luck to you ❤
Thank you very much Sarah! I really appreciate it!
Stephen, you're such a Leader in this area of advise regarding Schizophrenia. On an empathic level I feel sorry to know how you've suffered to gain your position yet on a philosophical level I see the genius of reality in choosing someone as articulate & together as you to safely lead others in their journey. Thankyou, for your generosity
Thanks, my son's new Psychiatrist is considering Clozapin for my 33 yr old son . He's been diagnosed 14yrs ago and tried several other meds with over a dozen different doctors with unsatisfactory results. Just started researching this med. Thanks for sharing your experience
Thank you for watching and sharing.
Schizophrenia is more linked to males, partly because it is highly associated with overactive adrenaline and cortisol levels, as well as a highly overactive immune system, both of which get triggered in adolescent males. Keep up the good work!
Thank you for this valuable information and your encouragement! Have a happy and healthy rest of your day!
Is there a way to calm the contributing immune system over activation that would show with elevated AnA? Or inflammatory markers I assume? I’ve read a lot about adjunct fish oil Nac and reservatrol
That's why I am getting my 'bottom' surgery next week; I am a transgender female.
@barneyronnie what?
Big hugs to you all the way from Ireland, rooting for you along your journey!
Thank you, Floriana!
My brother takes it. It seems to help along with other meds for anxiety. Overall doing better. Had to cut his lithium in half .. lithium was becoming dangerous to him I had to jump through hoops to get the lithium lowered in half. It was very difficult. Keep praying and supporting the research 💛💛
Why is lithium dangerous?
Nice to meet you, I'm Sayuri. I'm from Japan and I suffer from bipolar disorder and telepathic hallucinations.👍
Oh thank you for sharing this my 24 year old son is currently in a physchartic hospital with paranoid schizophrenia he has only just begun the clozapine because he was not responding to other medications, I don’t know what to do if the clozapine doesn’t work 😢 he’s in hospital since January 2022 and I would give my life up to see him get better, he’s violent with his illness unfortunately 😢 but he hasn’t had an outburst in a couple of weeks. Keep up the great work I wish you and your family well ❤
Thank you for sharing, hope things get better
Praying your baby boy is better and out of the hospital and that you’re doing well too. God bless you both. Sending so much love 💗
ECT with Clozapine may help .It helped my daughter
This drug was tough on me at first. It used to make me feel weak and sedated, not in a tired way but in a very unpleasant way. It makes me slobber at night. From those I've known on it the same happens to them. But it goes the extra mile, kind of even reducing superstition and lighter delusions, less voices.
Thank you for sharing your story. Have a happy and healthy rest of your day!
There are meds that can help with the excess salivation at night, talk to your health care team if this is a big problem for you .
So glad you are doing much better. Very nice of you to share your story for others. Good luck to you.
Thank you Heidi!
Thank you for sharing all that you do I’m so happy to have discovered your channel! It’s helpful to us who have a loved one that has Schizophrenia!
God Bless you and thank you so much for making this video.
Im so proud of you to keep going 💓 💗 you and your dad are great ❤
Thank you very much Niki I really appreciate it!
😊 thanks for sharing your lived experience of schizophrenia
I had weight gain on an antidepressant that was prescribed for my insomnia. I gained over 20lbs and can't lose the weight no matter how much I diet or exercise. But at least it improved my 20 years of insomnia and anxiety.
These psyche meds are very helpful but the side effects can sometimes be hard to manage.
I am very happy that the Clozapine finally worked for you.
Thank you for sharing your story! Brings hope to mine!
Thank you, Silvia, for commenting and joining us on this journey. Take care. Steve
Glad you were doing so well.❤
Great dad great young man 💯👏👏👏👏👏👏👏
Hello everybody i am on clozapine for 21 years keep up the faith the hungriness and tiredness will all go
Also my body proved that you can stop the blood test to twice a year hold on your trouble will end
Thank you for sharing
You are amazing 👏🏽 This is absolutely helpful!
Sooooo informative! Thank you! My son has this…incredibly helpful!! 👍💖
Thank you for this Information. It's good to see and hear from people with good outcomes with a medication that is so elusive.
Steve and Stephen, I've watched several of your videos and I am in a situation with my daughter which shares many similarities to your experience. My daughter is in Riverside County where she spent a year living on the streets, unwilling and uninterested in being anywhere else. As an adult, she couldn't be made to do anything without consent and until this past summer was not meeting the criteria for an involuntary hold. Long story short, we're in a strange limbo phase where we still can't make decisions for her, but she is not able to take care of herself either. We anticipate another 5150 on the horizon and we're praying that maybe she'll end up at a different hospital, or something different will happen to get some real ongoing help this time. It feels like she has been passed along from one facility to another with no continuity of care. If there is any chance you might be able to have a private conversation with us, my husband and I would love to talk to you about recommended hospitals and doctors in the Southern California area. Your story is a huge ray of light in such a dark and seemingly hopeless situation. Thank you for your transparency and for sharing the comfort you've received, with others like myself.
Thank you so much for sharing. I hope things get better. Wishing you and your daughter the best. I was hospitalized at UCLA and have received my treatment there.
Bonjour, I'm sorry, but i dont speak english very well, donc je vais continuer en français et j'espère que vous pourrez traduire. Mon fils a été diagnostique schizophrène en 2018, il avait 22 ans. Il a commencé par prendre du Zyprexa, puis également Abilify, enfin il a essayé plusieurs traitements et finalement la psychiatre ne lui a pas laissé le choix ce serait le Leponex ou Closapine. Il prend ce traitement depuis 2020 et ça l'a vraiment stabilisé. Il me fait penser à votre fils. Il a toujours été très timide, mais très très calme, très cultivé très passionné. Bref c'est un ange.
Même dans la maladie il a été d'une maturité, incroyable. Il a toujours pris ces traitements. Cette maladie est très mal connue. Mais ce fut quand même un tsunami dans notre vie. Step by step.... Je vous souhaite le meilleur pour les années à venir
Thank you so much for sharing and your encouragement. Have a happy and healthy rest of your day!
Thank You so much. Have a Nice day
You are such a wonderful inspiration 😊
Thank you very much!
Thank you for sharing your story ❤️
Hello everybody i am on clozapine for 21 years keep the faith the hungriness and tiredness will be gone also my body proved that you can stop the blood test to twice a year hold on your future is brite
Thank you for sharing!
Thank you for the video. My son started taking 100mg, and so far the side effects are awful, your video however gives me hope when I wanted to quit. I wanna give it a chance.
My loved one didn’t get better with Zyprexa, it made the psychosis worse. Hoping his doctor will help him with something else.
Thank you Stephen for your honesty and willingness to share. We may be in 2023 and LGTBQHS... is well accepted BUT MENTAL ILLNESS IS STILL STIGMATIZED!😡. I have been dx with depression and Borderline Personality Disorder which most videos and information out there label as the worst and a death sentence to the support system. This has been very hard for me. Suicidal every day. Thank you for your courage in de-stigmatizing mental illness❤️
Psychophobia should be treated by law and society, same as Homophobia: shameful & totally retro!
You need a good therapist and psychiatrist. That being said, I have those thoughts daily too, but they aren't nearly as bad as they once were. Here's what I did: I imagined the self-harm thoughts were country music (I don't like country music). They're noise. Bad data. No matter how loud the "radio" gets, I tell myself it's just nonsense. With the right therapist, the right meds, and remembering that the thoughts are just errors, I've learned to ignore them. HTH
Stephen I start my clozapine soon I’m going for my blood test it’s good to watch your video on it
I’m starting on the clozapine soon I’ve been on it before but I stop because I’m a idiot so pray for me and glad your doing well
Thank you! Best wishes
How's your experience with clozapine so far?
I just got diagnosed with schizoaffective bipolar type and have been diagnosed bipolar the past 7 years and I have tried a few antipsychotics. Right now Im on 20mg of Zyprexa and have been doing really well. My doctor says since I have been doing so well on 20mg of zyprexa I will do even better on clozapine and I can take a lower dose. My worst fear with starting it is sedation and I already sleep 12 hours a day on zyprexa and I work a 40 for a week job. I also have tardive dyskinesia and my doctor says clozapine is good for TD. Anyways I love your videos!
Thank you Mary for sharing and joining me on my journey!
Been on 500mg of clozapine for about 3 years and it works like a charm
Thank you Chase for sharing!
Same, unfortunately it causes me to oversleep which has become a major problem
@@totallynotj8387 it does that to me aswell
Has been a lifesaver as well for our son. Side effects are being managed well with other meds, good to have an advocate to help with this as you obviously do with your dad. . Thanks for you videos , they are excellent and very helpful.
Our son went for almost two decades trying different medications before finally being prescribed Clozapine. He struggled with non-compliance before trying Clozapine. He now reminds us when it is time to take his medications. Like you Stephen, clozapine has saved his life. I wonder if you take any other medications besides Clozapine? Our son has been prescribed Depakote as a mood stabilizer which I have heard increases the negative symptoms.
I take Clozapine, Abilify (a small amount), and Lexapro.
Thank you, Diana, for joining us on our journey. I would very much like to hear more about your journey and how your son is doing. Stephen was taking Depakote in early 2013, but only for a couple months as it was causing too much sedation. Take good care.
@@SchizophreniaSurvivor sir clozapine is good??? This is works on negative symptoms
So glad the right medication was finally administered. Is Dad Steve a medical professional???
Thank u sir may God be with u and ur son ..every moment I am very happy to see your video this video will change people is life..god bless
Thank you, Afg, for your gracious words and for joining us on this journey. Be well.
Sir I am schizophrenic to i am on clonzpine 10 years i been hearing voices it been a month i am on clonzpine..i don't want to feel sick again i suffered lots
@@afgafghan5523 Thank you for sharing! Be well.
Clozapine is the last result that some psychiatrists use to help patients with resistive schizophrenia. It does work in lot of cases but the side effects are dangerous. Most important, low white blood cells( assess for s/sx of flu like symptoms regularly such as sore throat, Fever…) orthostatic hypertension, inflammation and/or enlargement of the heart cells, bradycardia, seizures, one serious issue that lot of people are not aware of is severe constipation or impaction; causes build up of feces that might come out from the wrong end. The advice is to be extremely on top of your assessment with clozapine.
Thank you for your excellent advice!
I'm currently in Florida, USA on a tourist visa, staying with my boyfriend😌😌
Have you connected to Dr. Robert Laitman of Team Daniel Running for Recovery? Dr. Laitman has written a book about Clozapine being the gold standard for recovery from psychosis. Thank you for sharing your story. You are helping us all and giving us hope. God bless you.
I have not, but will look into it. Thank you!
Love the support but would like to hear more from Stephan, Dad is clear but is Stephan?
You ask,, why hasn't there been any advances in medication,, because it's in the best interest of pharmaceutical companies to keep people sick and dependent,, mental health industry is big business
Haldol has worked for me very well also trileptol hydroxyzine Prozac but I'm schizopaffective so maybe different but I understand when you find the right medicine it's a real miracle what these drugs can do
I agree!
@@SurvivingSchizophrenia follow your heart it never lies don't ever feel guilty about what's doing best for you. Mental illness doesn't mean your dysfunctional it's a special trait there's nothing wrong with up we are beautiful people
Hello I’m on olanzapine. Gives me tiredness and sleeping a lot. What I did for the sedation is I take lots of B vitamins, vit c, niacin and taurine. Creatine too gives me boost of energy with my whey protein powder. I have changed diet to keto diet. Lots of protein and aminos. Best of luck. 😊
Did u gain weight
medication works for each person differently for each individual depending on ones anatomy make up. As have been on haloperidol for many years that has also saved my life
Thank you Chris for sharing
Thank you for your videos, we appreciate how your dad supports you and how you tell us all how it is even if some days are not great. My question is at what mg dosage did you have an awaking? Our 15 year old son is on Clozapine and has slowly titrated up to 175mg and shows some improvement but is still in psychosis and says he doesn’t have schizophrenia.
I am on 175mg a day and have been for the last 10 years. That was the effective dose but did take several months to pull me out of psychosis. I am also on 5mg of Abilify which has been shone to enhance the effect of Clozapine.
Olanzapine saved me Stephen. I have side effects but it’s a good compromise. The other drugs they tried me on were torture. I had the patience to endure all that horrible stuff until I found a med that worked for me. I’m in the UK so I don’t know if Clozapine is the same drug as Olanzapine.
Clozapine and olanzapine are two different drugs. They are not the same.
Hi Stephen, I am interested in knowing what side effects occurred during the beginning period of your Clozapine titration, for example, fast heart rate?
My daughter will be starting this today. I am feeling so frustrated.
Hi Marilyn, I wish you and your daughter the very best! If you have any questions please ask. I will do my best to answer.
I lost 3 homes, 2 of them was because I didn't take my anxiety meds, my dad is not as nice as understanding as your father. He blames me for all my mental illness
This is such a tragedy. Clozapine got discovered in the 1950s. The whole world changed since then. CT, Ultrasound, MRI, PET all were invented. Internet came into use. Devices, smartphones, AI, cancer treatments. Complex brain operations while the patient is awake. But for us poor sufferes they have nothing. Last decades did not bring any valuable advancements. It is such a shame. They actually know kind of nothing were it comes from and can barely treat it and the meds have horror side effects. I cannot think of a single field that made no actual advancements. Of almost all diseases, the mechanisms are know. Even with MS and Alzheimer's they make huge steps... It is hell.
MRI is not enough. Serum and CSF antibody and autoantibody analysis is needed. And also a PET-CT.
My son had great results from clozapine but the side effects where pretty bad. Nevertheless he stuck with it because he'd tried so many other antiphycotics. In the end the combination of clozapine and prozac killed him.
🙏🙏🙏 oh my gosh…. This is so sad. I am so sorry and pray that you know He is in a good place.
Hopefully he didn't over dose/or was given the wrong amount. It's unusual to die from prozac. Sorry for your loss.
Steven how long were you on clozapine before your hallucinations went away, or have they? Our son just started 1month ago but still has hallucinations
It took about 12 months on Clozapine. I don’t have hallucinations anymore, but everyone is different.
Thank you so much for this video! I’d like to ask if you had any cognitive decline with the psychosis and if the clozapine helped with that? My son has decreased cognition, on clozapine since 8/3/22, we are still titrating up to reach a therapeutic level. And also, do you take any meds for the sedation? Thank you!
Hi Lisa. Thank you for watching. Yes I did have a decline in cognition with my psychosis and the Clozapine did help. I do not take any meds for sedation. I do have a small amount of coffee every morning with breakfast. I took Ritalin for a few months several years ago for sedation and it caused more stress and anxiety, as well as a making me feel physically sick. I have not taken Ritalin in years. I am currently taking 175mg of Clozapine, 5mg of Abilify, and 5mg if Lexapro. I have been on this dose for about 7 years now. If you have any other questions I will be happy to answer. Have a happy and healthy rest of your day!
I take 1 before sleep, it works fine. I m on clo. From 2014. No side effects. Recomand 4 all who strogel with. (1 before sleep is more then enogh)
Thank you for sharing!
How much do you take at night?
I cant help but think some people are easily manipulated
Thank you for your presentation! You said you take 175 mg. We’re you ever on a higher dose? Curious how you react to dosage reduction. Thank you
Yes I was on 200mg for a while. I had no problems with the dosage reduction
Did you have auditory hallucinations? What were your symptoms?
Hi! Yes I did have auditory hallucinations. They started in early 2012 and lasted a while. I don't have them any longer. My symptoms included hearing voices, depression, anxiety, delusions, and headaches. I just recorded a video yesterday with my dad focusing on psychosis and delusions. It may answer your question in more detail. The video "Psychosis: War of the gods. Dad's Perspective" will be posted Tuesday. Thank you for your comment. Have a happy and healthy rest of your day!
How long and what were the closapine doses changing over the time?
LATUDA what doses, how long and what was the effect/improvment?
How much dose do you take? I was on 500mg and my Psychiatrist lowered it to 200 because he says it's dangerous, if you can answer that would be so nice
I take 200mg. Thank you for asking
@@SurvivingSchizophrenia thank You for answering
What dosage of clozapine do you use?
Stephen how long did it take before the clozapine worked ? :)
It took just a few months
@@SurvivingSchizophrenia like 2 to 3 months? before it start working
How soon after starting Clozapine did you notice a positive change?
My social anxiety and panic disorder is triggered from my paranoia and schizophrenia. Will clozaril treat my paranoia and schizophrenia? Then after that treat my anxiety and panic?
Please talk to your doctor. Thank you very much. Have a happy and healthy rest of your day!
Hi Stephen,
Do you have problems with drowsiness when taking clozapine? My daughter is on clozapine 150mg, the side effects cause problem with her work?
Hi Mai. Yes I do have problems with drowsiness and fatigue.
Do you mean that when in psychosis he will never be aggressive or violent ?
Not necessarily
Hi i am from germany, my question is how much in mg of clazapine do you take a day.
Hi! I take 175 mg of Clozapine a day. Thank you for watching! I would love to visit Germany someday!
I used to be on Clozapine. It all depends on gender, height and body weight. I had to take over the amount for recommended guidelines because I am 6'2.5", 220 lbs., and male.
Is there a way we can connect?my son just took clozapine. Currently we are here in Canada due to we are from Carson California.
Please post your questions here and I will try to answer them. Thank you
I am sorry but these types of medicines are pretty much pushed on everyone in the hospital people who shouldn’t be taking it.both medications you take Abilify and clozapine and nearly killed me. I shouldn’t have taken them and they caused me neurological problems massive weight gain and worse swallowing problems, restless leg syndrome etc. Maybe a small percentage is ok on these medications and it has helped. these medications made me crazy and caused the worst side effects. Schizophrenia is real and there’s better treatment out there but today society has chosen medication when there is people who better without it. I am not saying stop taking your medication and cause you harm or a mental breakdown of course not. We are trained to treat mental health only with these awful medications when there’s alternatives. I am not speaking of just eating healthy or mindfulness that won’t fix the problem. There was very good therapist that understood the mind back then and there was so much funding taken out of mental health in decades now it’s just heavy medication and
out patient therapy or out patient programs which. It’s really bad in Connecticut. I have something that most therapists today are not trained properly in dissociative identity disorder and it’s considered rare so I have an extremely hard time getting help for it. My disorder is just as common as yours and it’s basically controversial to get it diagnosed and regular non profit places don’t acknowledge it. I am constantly bullied in hospitals that I need medication and must have something else yet my private aprn and and therapist diagnosed me with and a pastor that helps with trauma. Medication doesn’t work for everyone I am someone that doesn’t benefit from medication and I get worse.
Thank you for sharing Chelsea!
how many years you were have been on olanzapine
you have to take blood examples every time.
Yes I do have to get my blood drawn every 30 days to get my Clozapine prescription filled
Also, Stephen have you investigated with the doctors if there is anything that might help with the sleepiness and tiredness?
Yes, I will be talking about that in an upcoming video
This viedo translate in Hindi please
It is translated in the closed captions
Did you use quetiapine?
Can i Ask you what do you eat?
I don’t limit my diet except I try to limit my sugar intake.
Lot off people make it better with out Medication
I tryid little nothing for me
There are iven people that get free from schizophrenia but only with out medication
People that want and it helps for its ok
But it doesn't work on all
And Doctors have hard to accept it
Do you get ssdi for that