Recoverlog 15: Coming off clozapine
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- Опубликовано: 28 окт 2024
- I'm creating a video diary to chart my recovery from mental illness.
I hope this will help other people who are also struggling with their mental health to speak out, get help and recover.
Ps you can now buy me a coffee here:
www.buymeacoff...
Man, keep holding on, you're not a coward, you decide to live everyday and that makes you my hero. I have schizophrenia as well, and I know how painful it is to face daily life, I just want you to know that I'm thinking of you on the other side of the world and that you inspire me. I read an article about you on the BBC a while ago, and since that moment, I knew you were a really special human being who deserves to be listened and be loved, because that is what is all about at the end of the day, isn't it?, I have problems writing this down, because my concentration dissipates very easily, but I have to tell you, you're more powerful than the struggle, believe me.
Jonny I have that constant critic in my head too! I fuck up too but I have learned to love myself, apologize when I'm really wrong and if people think I do weird things I say to myself that's their problem and I happily get on with daily life! I never lose hope! Everyday is a new day! You are a Beautiful soul!💖💗💖
Thanks for making the video! You are a great person! Sending you lots of love!
You are so brave for sharing your experiences, thank you.
I've just watched both your new vids and felt this the better one to comment on but your such a brave and wonderful person. Since following you it's nice to see every now and then that your still optimistic and you give hope and knowledge to so many and that's an amazing thing. You are no coward and you don't look a fool your beautiful and even though we have never met or spoke i care for you so much. It probably seems ridiculous and doesn't help at all, i hope better days come soon x
You sid you had a gift of knowing eveything will be all right? Hold onto that my friend. God Bless you. ♥
I am on Clozapine for 13 years now, with 2 withdrawal periods. At first the withdrawal feels like a personal victory, and stamina and wanting to live etc. goes way up. The weightloss is rapid too. But then a half year later, the period comes when you get psychotic again. At least i did, twice actually. Yes weight gain and self image is a bitch on Clozapine, but hey, like the other commentor says, the positive effects are way more important than just weightgain issues and pride. I am now om 62,5 mg dosage, daily. I am still feeling incentives, having trouble with focus, getting stuck in past memory, etc. So the dosage i take kills the painbody i guess, and let me live more in peace, and in the moment. I have a love/hate relationship with Clozapine, so you know now, you are not alone. And surrender to what is, that will be the best option. Namaste.
Dear Jonny, I've missed your videos, but am delighted you had such a wonderful holiday! It sounds like your holiday in Sardinia did you the world of good - you look well rested and have a great tan!
I totally agree with what people have said here. Honestly, you don’t come across awkwardly at all, despite what you think. As you've previously stated, you are your own worst critic, Jonny. However, I can definitely relate to these feelings, as I too experience them. I'm unsure what the answer is: however, I know that people who love you, will neither notice, nor care, that you may blush or become anxious with them. They love you, for YOU. I wish you could see yourself through the eyes of those who love and cherish you. Your videos make a huge difference in increasing mental health awareness. Thank you for sharing a large part of your life with the world. Jonny you not only inspire, but give hope and reassurance to many people who feel isolated and in despair.
Also, you’re most certainly not a coward; the side effects of clozapine sound horrible. It’s so hard trying different meds, in search of the elusive ‘perfect’ one - if such a thing even exists! Always here for you Jonny - please just reach out any time. I really mean it. Keeping you in my thoughts and prayers. Sending you hugs and lots of love and the very best of luck for the future. :-) XXX
Fiona O'Kane You show such great compassion, Fiona. I feel the same way you do about Jonny's impact on others. For me, the only solution is for each of us to develop a combination of self-love and self honesty. See my fuller response to Jonny's two new videos. -- Donald in Cardiff
I can feel what your saying. I've been on clozapine since 2006. Hope you got everything sorted since making this video. I get cardiac problems with clozapine. But doctors don't want to know. As far as they see it, clozapine works for me. Doesn't matter about side effects.
Ah man that's hard. I've found i'm more listened to when dealing with mental health charities/support groups. There's some great ones in Scotland like SAMH and Recovery College. Check them out if you haven't already!
you r the strongest person to be talking and helping others I take k pins and when I try ed getting off the I was sick headache s never slept my head would like make a japping noises I lose vision for a second in what your going threw and believe me you can do it
My friend was diagnosed with schizophrenia/schizoaffective when he was 18. He was really fun and happy, different before he was diagnosed. Then after he was diagnosed and giving medication he wasnt the same person again. He couldnt laugh anymore and hardly speak. It was really quick and as he got worse because of the medication he wasnt able to take it anymore. He was a really strong person, he really loved life but he then became unable to respond it was so sad to see. in the end he killed himself . I know it sounds sad but I know no he is at peace, we all loved him and looking back it didnt matter that we didnt always see what he did, i would have given so much to have him smile again. i wish we could have let me be who he was instead of being scared, then he would still be here with us
Bro you got this I swear you do you have to believe it
Hi Jonny,
I watched 'Stranger on the Bridge' and have only recently found your videos on here. I never usually comment on any videos, but after watching I feel compelled to. Please know that you have so many people rooting for you and although to you, it may feel that you come across awkwardly, please know that that's not the case at all. On the contrary, each time I watch one of your videos I think that you are an inspiration, and your videos have definitely made me more aware of the difficulties faced by so many people. I will continue to follow your recovery and, of course, wish you much luck and love for the future. Elizabeth xx
Hi Jonny also did a video failed by the NHS that's also a good one he did in 2013 on BBC its on RUclips
Hi, Johnny, so sad to see your video. I want to recommend you tdcs. It works. I'm using the neuromyst with a loved one and in a few days a saw the difference. God bless you. Never give up.
Oh wow i've not heard of this i'll look it up! Thank you!
I love you Johny Benjamin for being the way you are... You will never mess up... I can always listen and try to understand... I know life is scary with our imperfect human nature... but if you trust other human beings it becomes easier... I don't care whether you gain or lose weight... I can see your beauty.... the real one and not the one that fades with years or with weight gain... I wish I could be there and just sit there and listen... and listen.... and listen... to hug you gently whenever you need that close human contact... probably wipe your tears whenever you feel you need to cry... I am here... whatever the distance... I am still here listening and caring for you...
Believe there is a way forward, your in the eye of the storm and it will get better.
It’s amazing you are facing this many can’t, be your captain of your ship, show up for yourself like a good best friend and nurturing mother
List ERN to your gut it’s guiding you well, safe journey my fellow human
Janicex
Thank you for you words. They really help me :)))
Jonny, I never comment on any videos but I just want to say that you are so unbelievably brave to talk about your experience with mental health and you have helped other people including myself to not feel ashamed about their mental condition and speak out. And this is so important.
I hold so much respect for you and for what you are sharing and doing.
You will be okay, I truly believe that.
Thank you.
Love & Peace
I can't really add anything here that someone hasn't else here hasn't articulated better, but from what I have seen in your videos you are about as far away from being a coward that anyone could be and you're quite clearly good man, and your ability to articulate your own problems has helped many others.
Due to the different meds I've been taking over the past few months, I have gained 44lb. It's a daily struggle for me to try and convince myself that the pros outnumber the cons, that going through everyday without excruciating emotional pain should really make my body image issues seem irrelevant. Hope you'll feel back on track pretty soon. Take care.
Ask your doctor to prescribe Metformin to you, to reverse the weight gain caused by antipsychotics.
This may read and come across in a way its not ment, its ment in a good way to you Jonny. Every little step you take and every small word you say and every reaction you make or take is a big step forward and I hope every little step you take is going to get you into a good place sooner, if you do feel like you are going backwards and not feeling right, don't look at it that way, your a good person with a big heart and your doing your bloody best to be happy and to find a place in your head and sprit to be OK, just keep going and keep pushing yourself and take the small steps, they will be giant ones soon, don't look back, go forward and many many people are with you and will help you and to catch you if you fall......keep going my friend, keep going, its worth it, life is so worth it Jonny. Head up, ..
Hey my name is katrine I also have schizophrenia, and I have read a lot about antipsychotics, and it isn't good. I have been on riperdal, quetiapine and ability.
Risperdal made me psychotic. Quetiapine made gain weight. But what I have read is true for all of them is that it can impair your cognitive ability especially what was mentioned was your vabal ability. What it mentioned was that the longer the people had been taken antipsychotics , the wors it was. Now I have also heard from lectures. Ted talks ect. That the brain is an ever changing structure that can change tremendously efter what we spend time doing. Also long time change. Memory was also impaired by antispchotics and it it may simply be that you have forgotten alot of words. I know that reading (alot but a little can also do it) can really help your store some words in your off Mets brain again and also sentences.
the side effects of the meds are so tough right! i'm on quetiapine right now and the weight gain isn't fun at all :(
You are a handsome brave young man. As Winston Churchill said, “keep buggering on” don’t waste your youth start talking therapy & alternative treatments to break free from the cycle of drugs working/not working. We pay a heavy price
Jonny Benjamin 1
Hey, I hope you see this message. I've commented quite a few times on your twitter and on your videos. I'd like to get in touch with you properly but a comment on here will have to do :/
You are no way a coward or vain. You've helped so many people by posting your experiences on such a public format. That requires real bravery and courage. The extremes of the side effects were too much for you and that is totally ok. Everyone is different and what works for them is different and doesn't make you anyway a coward or anything like that by coming off clozapine.
I wish you best of luck with everything. I understand exactly how you feel when you were talking about feeling silly and thinking that you're going to mess up your words. I suffer from panic attacks and I always think people are thinking bad of me.
You're not alone. Take care of yourself xox
Sophh Mclaren Good response, Sophh. You nailed it. -- Donald in Cardiff
Thanks very much :)
Hope you're well.
JONNY,
It's 3:45am here in Cardiff. Something woke me up in the middle of the night and said check my emails -- and there you were. Back in your full video glory again. Great to see two new videos from you. You break my heart with your courage and honesty -- yet you also inspire me with your great heart, determination and communication skills. I'm here to tell you, Brother, that your struggle, videos and entire life are encouraging me. You precisely mirror and confirm my own process to me. So we can't both be crazy, can we?
Of course it's a lie when your Inner Critic says you don't have courage. SOOOO much I see myself in you. I too have long had these powerful visions of my value, wild fantasies of success, and huge ambitions for good -- but also immense self-doubt. What's wrong with all that? You are aware of this passion inside you, so there's no big problem here -- except maybe you are feeling terrified of your own power, potential and size. That's natural. Let it rip. It's better to think big about yourself -- because we ARE big! But you've got self-awareness too about this -- and you share your doubts. It's precisely what will keep your ambition and self-love in perspective. Keep thinking big, while also being self-observant. Honor both your immense imagination and also your precise and honest self-awareness. Yin + Yang = Healing. God, I wish more Brits could think big about themselves like you do.
Notice also your Inner Critic -- who has a role you gave it but doesn't know how to stop doing it in such a harsh way. He too needs your awareness and compassion. He fears you hate him, but he has a role too. Maybe negotiate with him to revise his role from harsh judgemental critic to alert, honest, helpful and gentle self-observer. You can do this self-re-creation -- but you need to accept and love him first, for he too brings something to your inner party. All parts of yourself contribute. However, healthy self-love will naturally adjust and refine the roles of each of your sub-personalities. You've got a big universe inside you that you are managing very well indeed.
"Mindfulness" is a powerful new concept in psychology, as you probably know. Here's MY version of it. "EVERYTHING YOU FEEL IS "REAL" -- BUT NOT EVERYTHING YOU FEEL IS "TRUE". Your job as self-leader is to distinguish between what's "real" and what's "true" and what's "false". Very subtle.
Bathing yourself in self-love is essential here. You talk negatively about your vanity, but tell me more about your healthy self-pride. Do you ever have waves of healthy self-love wash over you? In moments of great stress and hurt, you can CHOOSE for this to happen. In any situation, you can CHOOSE SELF-LOVE. Try it and maybe then talk about it in one of your videos.
For example, saying you feel like a vain coward is honest -- but it can't be the full truth. Also, you judge your weight-gain -- but I see your fuller face as more mature and softer towards yourself and your viewers. Maybe your vast progress so far is allowing the fuller, more loving Jonny Benjamin to come through for yourself and your viewers.
My email address is donaldlwan at hotmail dot co dot uk -- and I would love to hear from you. In fact, Jonny, take this on board (if you can). Of all the people on the planet that I've never had direct ongoing email contact with, you are the one I hope for the most. Can you take that onboard? Do you realize how much impact you are having on me and others?
By the way, I loved your TV show recently. Even feel some envy at your visibility -- while I'm unknown. Just being honest here.
LOVE, Donald in Cardiff
Oh yes - that's great! And yes, I'm developing my astrological intuition more & more with every opportunity I get to practice. :)
Gianni Love Feel free to tell me more. I'm a Taurus sun sign with moon in Aries and Aquarius rising -- with a birthdate of 30 April 1946. So I'll be 70 years old next year. Currently I struggle to find an external ROLE for all the wisdom I have developed for myself over 7 decades. Do you pick up anything for me? Or maybe you could tell me more about your own chart. I live in Cardiff -- the capital city of Wales. -- Donald in Cardiff
Dude you are not aCoword mental illness is a serious problem. I feel you man perhaps I'm only suffer from mild anxiety depression but still.I know that psychiatric medications have evil side effects, personally I had never take antipsychotics. I think weight gain is a least your problem more important isThat medicine makes you feel better mentally.Personlly I would rather gain weight and be stable than be skinny crazy and psychotic.
Maciej Krypczyk Amen. Good point.
Yeah and what if you're tipping the scales at nearly 300lb because of it? 500lb? That is not worth experiencing to be what the evil, sadistic psychiatrists (the majority of them are evil) cosider "normal". Not just weight gain but most of the other anti-psychotics aside from Clozapine and Seroquel, cause a serious condition called Akathisia (inability to sit still). Imagine feeling like thousands of fire ants are crawling up your legs and biting you simultaneously making it impossible to relax and sit still? Clozapine is not really known for this but most of the other ones are and it destroys the individual's life more than the illness does itself. The point you are making is mostly made by those in the mental health field who are not taking the medicine and don't know its terrors first-hand.
Yeah I feel better mentally, but gaining weight isn't the only problem here. You can get diabetes from it, the worst part is you can get hellish psychological dependence (if you use long term) and get complication with it because you can't diet. It's like certain death in short time!
Thank you for making this video you are helping so many people 💗
I know this is a very old video. I cam across it by accident when I was looking for technique for nurses administering the drug but im so happy I found your video. Im a MH nurse in training. You mistake your strenght for weakness. Being able to speak about how you feel is half the battle. As I said I know you posted this a long time ago but just a message to say I hope your MH has improved and the critic has gone or if not that you at least understand that we have little control of the thoughts that pop into our head...but we have control on the behaviours we can adapt to make them manageable. Wish you all the best my friend
Thanks Marcus. What a kind and thoughtful message to end my 2022! I really appreciate it!!!
Hey I want to say your brave and a stronger man than me. If I wet the bed due to meds that woulda been the discontinued med. You tough it out and went above and beyond. Don't be to hard on yourself
Your message means more than you know
God bless you mate I really hope you have good health and happiness.
shitt .....i hope you feel my compassion for you ....we ll get over that ...please remember not every day s gonna be the same
You are so hard on yourself. As I listen to you speak, I just want to wrap you in a bear hug and plead that you be more gentle with yourself! You have the courage to face who you are and share it us...and in doing so help countless others to face their own pain. You are a beautiful person. If only you could yourself through our eyes. With love and compassion.
Just keep talking and sharing with people that's my strategy xx your wonderful for sharing this, hugs xx
You are far from a coward.
Side effects are nasty, awful things and if the medication isn't worth the side effects... I have come off so many different tablets because they made me feel like hell.
I think you're really brave and strong. Way stronger than you give yourself credit for.
Keep calm and carry on x
Have you experienced Akathisia or feeling like you can't sit still? If so, did you find that any of the medications you've tried caused it the least? I'm investigating Clozapine because it's supposed to be the least likely to cause restlessness and shaking in the legs.
You can't just wean off Clozapine as it has a very short half life and once you get down to lowest level you will relapse. The only way is to switch on to a strong antipsychotic like olanzapine and get down to a low dose eventually. But not easy.
Are you doctor? Or a patient
You truly are so hard on yourself. You'd still be gorgeous if you put on 10 stone because the essence of who you are is gorgeous but I understand that the side effects were too much for you.That's not a weakness, we all have different tolerances to different things. Sardinia sounds awesome.I'm sorry the clozapine didn't work out for you. It saddens me that you pull yourself to pieces when a lot of what you describe is what so many others go through but just aren't brave enough to admit. To be the person you have become has taken courage that few of us possess,don't ever forget that. Love ya Sue Blu xxxxx
You are not vain. You just have healthy self-esteem and a strong instinct to survive. Being overweight can take decades off one's life expectancy and lead to all sorts of serious health problems. Ask your doctor to prescribe Metformin to help reverse the weight gain caused by antipsychotics and avoid carbohydrates while taking them.
I’m just starting on clozapine currently in the titration phase
you are a beautiful soul.....don't believe the thoughts even though they seem so real.
I've been on clozapine for about 5 months. It does suck - i have had several very near misses reaching the loo, I dribble, my words are slurred. I've put on weight as well - trying to diet and getting nowhere. But I'm sticking with it as it has had good results on my positive symptoms, to the point that i even agreed to increase the dose to 400mg. I really feel that clozapine is my last choice.
There is nothing cowardly about coming off a medication due to side effects. I'm currently on topiramate and I'm seriously considering stopping, as even though it has helped my condition a little , the side effects have taken over my life and are almost more of a problem than the condition I'm being treated for.
You are a wonderful person and should love and care for yourself first .
What I do to help that is think things through. I don't like to think of what people are thinking... but when I put myself in their shoes in my head, I manage to realize... Why in the hell would they be thinking about me? Why would they even want to make fun of me when they're submerged in conversation. There's no way they're paying attention to the major details of me, let alone the smaller details like for ex. you blinking. And again, you just got to brake the cycle and try to rationalize what's really happening. It's also a good mix of self talk to help you build your confidence.
I hear it gets vetter every year your mind is clearing even if it doesnt feel that way...
Johnny you are looking really well... you are not vain...You just want to do better for yourself...I did put on alot of weight about 2 years ago...But since then i've lost 4 stone...It is hard but you can do this...x
First off I want to say that I'm very happy to hear that you had such a great time on your vacation. I watched the other video first and wondered where you'd gotten that great tan from. I'm glad that you made some more videos, it's always nice to see how you're doing. I know you're having a hard time right now and you feel vain for going off of your new medication, but I understand why you wouldn't want to take it. I wouldn't either, believe me. Just try not to be so hard on yourself, and keep listening to that little thought that pops up saying "it's going to be okay" because it is and I really believe that. Stay well and stay safe.
The doctors tried to kill me by double dosing me with the generic and brand name. I don't even have mental illness, I was suffering from PTSD. I was close to dying.
Hope your finding joy. A smile starts on the inside
Italy is awesome wanna go back there when im FKN off of my clozapine ....
Why were you on clozapine for? Did it help any symptoms?
I think not eating out during the pandemic helped me loose 10 pounds. It also might be the stress, but I'm not sure. Been on clozapine and Fluvoxamine for 10 years now. I can't stand the loss of time I've spent sleeping. When I stop taking meds I get terrible nightmares. I keep up with the exercise. Lots of racing thoughts as well. I think I'm going to take these meds until the day I die.
Lots of people in our support group gained weight during the pandemic. I'm hoping I'm loosing weight because of not eating out as much, getting rid of soda and juices, eating more salads and not something else like diabetes. Main thing is the time I've spent in my head thinking about too many things....day and night even at work when I'm outside. All over the place.
I hear you! Please take it easy on yourself x
I know this video is almost five years old now, but if you still think you were a coward to come off of the clozapine, I can tell you you are not. If the medication was difficult to tolerate there is absolutely nothing to be ashamed of. It is not easy to be on an antipsychotic, and you should not feel bad for wanting to stop it as a result. I hope you have had success with other medications and are well. I wish you all the best.
Look up coco Peru. Her singing,"you know how I feel"! It made me feel better. Nina Simone ! God I know exactly how you feel! Drag queens will make you feel better! I have watched all your videos and have been waiting to hear from you on the ol computer. Jonny you're a gem! Trust!
Gurl, relax, you are wonderful!
Hii Jonny I'm sad to hear your not doing well, thanks for doing these vlogs because its a comfort to know i am not alone in how I feel, Stay strong xx
Hey thanks for responding, I really think you should get thous antipsychotics, I have read in an article by volmark aderhold. Wenn psychopillen das gehirn schrumpfen sie lassen. The artikel is in German, but the artikel will translate to English.
I am 45lbs. over. took me 6 months to start to feel better 9 months all side effects gone. Give it time and then some more. Never give up or in. All things must change nothing remains the same, the only constant is change. Just do your best, ~ FOR IT WOULD BE A SHAME TO DO ANY LESS ~
Hi Jonny Benjamin 1 ive comment on a few of your stuff now really hope you dont mind sure u hear this from lots of people but would be nice to get in touch. Your not vain and posting these videos is brave bet it helps lots of people. I Cant say i know how you feel because i dont but really Like the way your so open with what you tell people. Your not vain or a coward posting the videos is very brave. . Glad you enjoyed your hoilday hope you get to go back one day ;-] Hope the doctors help you off the medication and you find something that suits you xxx Have you got to go on new medication ? thinking off you jonny your VERY brave and not vain
did it at least help with the hallucinations?
For one u are not a coward. I'm in pain every day because of the tablets I'm on. Sulpride and mirtazapine I no what it's like I'm putting on weight tired all the time and I've told my girlfriend I'm scared. Because doctor has told me the only option is clozapine which from what I've heard isn't the best medicine with the side affects and having to go into hospital. I don't like the risk. I'm at a point I don't no which way to turn. I started CBT and the risk were to high so this week had to tell the truth and had to stop CBT. I like u don't no what the next option is and that's what scares me.
mark shaw MARK -- Thanks for being so honest about your own pain and challenges. The medical world can be very helpful in certain cases, but they don't have answers for everything. Besides, it's our responsibility to take care of ourselves and learn to discover and love ourselves in the process -- instead of having medicine shut down our feelings.
I feel great compassion for your desperate "don't know what the next option is and that's what scares me." Can you just OBSERVE your fear and reactions. Feel them thoroughly -- but also keep some distance in order to understand yourself better.
I often say it this way. "Our emotions are very real, we know that. But they are not always TRUE."
Part of the challenge is to not confuse the PAIN we are feeling with the MESSAGE that the pain is saying. Sort of like a mother sorting out what a crying baby really needs. Let me know if you want to talk more. I'm passionate about this stuff.
Another element is learning how to actually LOVE all these pains and voices inside us because they too are part of who we are -- and each one of us is magical, powerful vast and essential. I definitely do NOT advise the "get rid of" mentality.
Please share if you want to talk further. There ARE answers available for you -- INTERNALLY. By the way, "Mark" is my favourite name in the whole world. --
Donald in Cardiff
Donald Johnson I say if your not honest about things it can't be fixed. The medical world can help but not always. Day to day things change some days I'll feel OK some days I just don't want to get out of bed. When u have voices all day ever day talk about u or the person u are with life can be hard and the pain also. Partly side affect of medication other I belive are the voices that make u feel in pain thanks for writing to me.
Way too hard on yourself. Doing great. Hang in there
Do you have a significant other with whom you are going through this and be consoled by?
Johnny there is no cowardice in not being able to tolerate side effect of a certain medication; I think you are smart by addressing it with a psych doctor about it
I am currently on Seroquel for my SED. and I have the same issues namely weight gain and I find myself sometimes thinking why continue with all those side effects so I am going to ask my new doctor If I can be put on a new med as well. You are not a coward however, you are a very brave soul.
The artilke by psykiatrisk Walmart aderhold is about the antipsychotics that can be really bad, and it is worse the longer you use it.
Has your talking improved? The voice that says don't. Has it gone away?
it's still a battle. there's a lot i'm trying to change rn
I had the same kind of social anxiety in my 20's, but it subsided a lot as I got past my late 20's. I read recently that that's backed up by research, but you're probably more qualified to comment on that than me. It does get better.
I took this stuff 2006-2017, in the final years only 25 mg at night so I could sleep. I told the psychiatrist I wanted to taper slowly but there is not fluid clozapine or dosage lower than 25 mg. It really sucks and the pyschiatrist told me that it should not create issues and that if it did, it was because of something other than Clozapine. Yeah right. It was a devestating experience (2 weeks alternating dose withdrawal) and I am still struggeling with getting sufficient sleep. I get 5-7 hours and often I wake up around 2 am and fail to fall back asleep. It is as if my body has very limited melatonine. I have many other problems like allergies, thick mucus in my left sinus dripping in my throat constantly, skin rash and itches and genereally a low stress tolerance, also fibromyalgia. Over all, it gets a little better, but never in a constant improvement. Rather, you are taken through ups and downs with hope and despair. Noone really knows what you are going through with your petty little soul when you have not experienced it. It is a crime in my opinion not to give people the tools necessarry to taper off this JUNK more efficiently. Becauee there could very well be tools such as Clozaril powder to wean off slower of scientific research into efficient withdrawal procedures.
Benjamin David I was on it from 2011-November of 2018 and under the supervision of my nurse practitioner we very slowly tapered off. At the end though I did have the 12.5mg dosage and finally came off that. I was doing fine with the reduction until the very last drop. Then insane insomnia came and the back of my head has a really strange pressure. It’s not so much long but a pressure that you can’t ignore. Did you experience this? It’s scaring me every day but I don’t want to return back to it just to get rid of this.
@@Molly-sv9yn how much you taper each time tks
Does anyone have the same issue with medication (in my case Seroquel) helping for a while but then you find it suddenly ceases to help despite any increase in dosage. I am struggling with the decision to wean myself off my meds and somehow learn to cope without meds because I am so frustrated with meds and the severe side effects .
Hi Jonny,
I also have a hard time with the side effects (weight gain being my least favorite). You've done a remarkable job here with your collection of short films, poetry, and candid discussion on the subject of mental illness. I've watched most of them and feel mixed emotions. Very relieved on one hand that I (and everyone on RUclips) who are suffering from the illness or may know someone can both identify with you and find helpful advice provided in your very special and kind way. Agony (for you) on the other hand (I can see the pain in your eyes and hear it in your voice). I wish I was handling it as well as you. Take care, Jonny and please be well. P.S. this song makes me feel better sometimes: ruclips.net/video/KAzV2PxbzvA/видео.html
I bet most everybody who encounters you doesn't even notice anything that you feel people can see. You worry too much. Easy for me to say though
You're not a coward love. Not at all. I understand you not wanting to put up with the side effects. They're nasty. I'm sure you doctors can help you some more
So happy you got to go away and had a relaxing time :-)
It's ok. Here's what you do. One pray, ask the universe, what will it take to heal, to accept things as they are? Just find a comfort mantra ( I repeat the mantra: my compassionate God) it will slow down the racing thoughts . ( something we all have). Say it over and over and over. Then if you want to get familiar with your voice, start reading aloud. You are ok. It's ok. I'm sick too. So is my daughter. Drink a lot of clean water. I know you have a tender heart. You are OK! The world is crazy making. It's not your fault . Accept your emotions are raw and intrusive. Deep breaths! Breathe in for four, hold for 8 breathe out for 7. It's ok.
Before mental health crap, I was 80kg. I thought 80kg was fat. Because of Olanzapine, I gained 30kg. I was a chick magnet in my lighter days. I could do many reps of press ups. Because of my weight gain, I can't even do one.
Ang on. You've only been on Clozapine a month havn't you.
keep the faith
Hi Jonny, I see a lot of myself in you. Self-criticisms & all. Thanks for being vulnerable with it - I'd like to help in some way... was curious if you've ever had your natal chart done or read?
Gianni Love Good suggestion, Gianni. My partner William is a psychic who does astrology too. Jonny's chart would be amazing -- but then so is yours, I'm sure. Are you an astrologer? -- Donald in Cardiff
Hi, did you know the European word for clozapine is ' leponex ' . . all danish doctors, I think all in Europe, learn latin in school, for muscles, bones, joints, also diseases . . Lepo is latin for ' scales ', ' flakes ', and nex means ' death, deaths ' . . Now, leponex doesn't cause scales, or flaky skin, it's never mentioned . . But, it does cause diabetes, hard diabetes . .
Not many people know this ( see wikipedia, leprosy ) but leprosy is a small bacteria, that causes nerve-damage . . Then people can't feel stepping on a small stone, or maybe a nail, it sits in the body for days, not get removed, it gets infected, and people have to have amputations, medically . . Leponex ( clozapine ) causes intense diabetes, even on dosages of 50 mg, or 100 mg, really bad diabetes, and diabetes has four major complications . . a. blood vessel damage ( anginopathy ), eye damage ( retinopathy ), kidney damage ( nephropathy, I don't know word ), and nerve damages ( neuropathy ) . . 50 % of all diabetes patients have nerve damage, in the skin, and 30 % have damage to internal organs, like heart, lungs, other places, digestion . .
My guess is you got put on clozapine ( leponex ) because you did something bad, a crime . . And, the doctors gave you this, to get rid of you, ' fix ' you . . The answer isn't to get mad, they will only increase the dosage, or give you a court order, as well . . You need to call a lawyer, the police, the authorities, and report this . . IF you have nerve damages, decreased sense of touch, or chest pains, angina, that is permanent, and it is very serious . . For that reason, get a lawyer, and sue you doctors, for recklessly endangering your life, if you didn't deserve it, as a human being . .
If you want, I can give you more documentation, but reading wikipedia, about leprosy, and then about diabetes, is a really good start . . Remember, if you get angry, they will simply sue you, and have you put on forced medication, it's not worth it . . Get a lawyer with a reputation for suing doctors, call the police, and do the right thing, be legal . .
This is sooo scary. My son has just been forced to go on this medication. They call it the Gold Standard for treatment resistant schizophrenia even though his diagnosis is schizoaffective disorder. The trouble is he is on a 6 mth mental health section in hospital which will probably be extended. He has been on Olanzepine during this time.
He was on Clozapine for a while a few years ago and started urinating himself regularly overnight. I feel desperately disempowered after talking with his solicitor who told me basically that he has no choice in the matter of his treatment.
They are just killing my son slowly and torturing him along the way. It is a barbaric system.
Just like the Nazis…or even worse. 😭
Hey Jonny. Dude, if you don't know what to do than let it be. Don't think as though you need to become someone or something extraordinarily special just cause your friends and family are smart popular or beautiful like Italy. Just remember that there's millions of ugly people who are so happy and yes beautiful just like they're meant to be. Try smiling and talking smiling and talking etc. Cheers!!!!
Can I ask you a question about Clozapine? How long were you on it, what doce were you on and did you cold turkey?
By the way metal health side effects with pills are horrible, it's good to look good an natural and find somebody to help you fight your delusions. All the best dude.
What dosage were you on?
Jonny,
Have you, by any chance, had your testosterone levels checked? I ask you this because many of the physical symptoms you've described are associated with low levels of testosterone. Anti-depressants and anti-psychotics will only make you feel worse as they exacerbate these already debilitating symptoms. I highly advise you to seek a good endocrinologist (hormone specialist) in your area and go for a blood test to check your levels of free testosterone, total testosterone, LH, FSH and E2. A look at the levels of each one of these variables in your system should offer a glimpse into what's really causing your body to make you feel like this. A young man your age should be in between 500-700 ng/dl of total T and between 12-17 ng/dl of free T. Considering your symptoms, I wouldn't be surprised to find your levels on the low end of normal. Testosterone is vital for a man's well-being. It's what gives men their drive for everything in life. Lately, there seems to be an epidemic of low testosterone affecting many young men in this age that's alarmingly increasing in numbers. Give Hormone Replacement Therapy (HRT) a try in combination with a good weightlifting regime and you'll see how fast your 'joie de vivre' returns. For more information on the topic, I suggest you follow another fellow RUclipsr's channel bignoknow where he chronicles his battles with depression and how HRT helped him turn his life around and improve his overall quality of life...
ruclips.net/channel/UCfTFGpTl0VV016Meh8i9idg
You can do this, Jonny!
Hugs from Mexico!
do you think i can lose all excess weight by nutrition ana exersize ....while still on the clozapine
it's hard but when i was first on olanzapine i exercised (ran) every day and ate healthily and it seemed to keep the weight off. But talk to your doc or psychiatrist as they might be able to help.
@@mrjonnybenjamin thanks Jonny , hope you keep up with the channel ..its really soothing and helpful to relate to someone..knowing we re not alone ..i 'll pray for you
Hey buddy. Not sure how your journey went but I found info on tapering strips (also Clozapine) that can be ordered from the Netherlands. The man who invented them seems a nice guy as he replied my email very friendly. You find him speak on youtube on ‘Mad in American’ Epidode 44 Dr Groot.
Link to the tapering strips:
www.taperingstrip.org/prescribing-and-ordering/
Was the clozapine helping you at all?
Yes I feel amazing on 800mg a day!
Really? Amazing? It must suit you. Good luck
Please look into the Soteria House movement and also find a very good therapist to attend intensive sessions with and weekly.
im coming off clozapine , i have the 100 mg pill form, how do you go about tapering off ???
please see a doctor or psychiatrist. clozapine is so strong. don't do it on your own
@@mrjonnybenjamin i would if there was ANY ''doctor'' or psychiatrist who put pp off meds here .i ve been to 8 of them and no one does it they only there to shove it down your throat .Thats a reason why ppl do it their own .God is helping me in that process and i trust Him .
Hey, just looking quickly, you've got caught in a circle of focus of a symptom and not the cause. This is common. The CAUSE is getting down to the next layer and the next layer is fear. It's kinda like, ok so if I mess up what am I actually fearing? People's view of me? Why do I fear people's view of me? What's going to happen if everyone views me negatively? What's the absolute worst case scenario if I look strange or say something odd or sound unauthentic? These are the questions that need answered. Not wanting to live (although real,- I say this with real experience of not wanting to live) is not the actual true answer it's a deflection oddly. If I don't want to live out of the fear of shame for example, what is it about shame I can't face? Why is it that I need people's approval so much. So this is how "we" tackle symptoms. It's generally related to something that happened when you were young..........I know, yawn. But it's true. Let me give you an example, when I was young a man berated me by shouting and shouting at me and asking questions I had to get right. I was in fear if I said the wrong thing the consequences would be dire.Would he kill me? physically or sexually hurt me? I was terrified. So as an adult I fear saying the wrong things to men. This has only became apparent in the last few years and believe me it is not helpful in my current job. I can physically feel myself shaking as I get a male caller on the phone and then floods of tears. Really not good for my job! So I try and go back to that scenario with that man as a child. It's tough going back mentally and causes real pain. But the healing is in feeling the fear, and crying about the fear I experienced then. So you have an underlying experience that you can't go back to. It's too painful. Now sometimes we simply don't know what it is and it can be something very very subtle and not as obvious as my situation. So don't try and force it. But the way to find out what it was is to allow the next stage of fear? Some people say put yourself into the very situation that causes you the most anxiety and feel what comes up. I say don't do it without assistance. Like, I should ask a male friend to shout at me consistently and berate me (which I haven't done-but hmm I think I will actually) and then I'd feel the pain of being in that situation as a child................... Anyway lastly, I follow some spiritual teachings which has made me realise that people's view of me is not important and our bodies can cope with any emotional situation thrown at us without any reliance on medication etc. But meds is of course an individual choice. But I'm truly surprised how efficient our bodies can cope with stuff if we know the secrets of how that is achieved. BTW the whole fruit and veg no processed foods etc is spot on. Good luck with your journey.
Hey go check out a RUclips channel called actualized .org it will really help you !
I have schizophrenia too and the constant voices that crticize makes would get anyone tired as I type I hear it and I honestly don't know what to do either except I try really hard to not believe the words the voices say, I'm also getting off my meds side effects are too strong
anonymously strange Please see my long reply to Jonny's video. I admire your honesty about your own critic. This part of us can be so brutal and out of control. However, they too are frightened and need love. I believe that by literally bathing ourselves in self-love for specific parts of ourselves, we can gradually transform their harshness and improve their effectiveness. For example, the harsh self-critic can -- over time and through self-love -- be gradually transformed into an alert but gentle self-observer. The last thing we want to do is to DESTROY or GET RID OF our critic -- but we can help it to safely change into a more gentle voice, which will make it (ironically) an even more effective observer. After all, THE HARSHNESS OF OUR INNER CRITICS IS ONLY MIRRORING TO US HOW HARSH WE ARE TO OURSELVES -- AND ALSO HOW ESSENTIAL SELF-LOVE IS. You sound troubled, and I recognize your struggle with self-acceptance as my own. Can I help further? I would love to hear more of your story. -- Donald in Cardiff
Donald Johnson hey I did read that other comment yea... the perception over my inner critic is always changing there will be a time where I am accepting everything that goes through my head I realize it's just a thought it doesn't mean it's your own soul or real self...what you believe in... perceptions of your own thoughts
how are you know ?
I am doing ok thanks. I have bad periods and good periods. Now is a good period. I am so grateful for that!
Im glad to hear my man stay strong and try to be happy do what you want its your life 💪
You're not a coward at all...you're way better without this drug. It's toxic to your body.
I pray for ur health
Good vid sir I have schizophrenia and see and hear things in my head and see things also I take these pills the make me heavy and pee the bed I'm with u brother
Thank you. That's tough. Talk to your psychiatrist about side effects if it's impacting you. I've finally found a psychiatrist i can be open with. It makes a real difference.
I've just gone off clons as well.
It's ok.
Dood you should try invega. It's a good antipsychotic
before i was on clozapine i was 9 stone,, now im 14 ! its horrible!
What's clozapine like. I have to go on it this month but I'm already so weighty from other meds
its ok yeh just the hyper salvation haha im on clozapine and risperidone i think so i cant tell u what one does without being confused by another! but it works well! better than any other u just need frequent blood tests!
Right OK thanks. yeah the doctor said that's because of the white blood cells or something that you need blood tests done but I don't have great veins...always end up getting a huge bruise when i get blood taken lol. Sorry I hope you don't mind me asking as I know this may be sensitive but have you have ever struggled with weight with your meds I tried resperidone but it didn't put much weight on but serequel and amisulpride has blown me up!!! I eat too much! I think its the combo too that's why I'm now trying clozapine and because I could sleep 24/7 lets just say I don't need rocked to sleep lol. Would you sleep a lot? Sorry hope you don't mind me asking these questions, its just that I don't have many people I can talk too with about my illness that understand too. Many thanks and hope your doing well.
How well does this med work for you?
clozapine does almost absolutely nothing for me at all
Me too in fact it makes me suicidle
Also get yourself the book : LIVING with voices.
Ya that's gonna cure him dr oz
I am taking Clozapine too, it takes.
Eric R Hello, does the clozapine work for you? Doed it reduce your symptoms?
?
You are far too good at beating yourself up, my friend. Like all of us, you're a package of good things and bad-the fact you have friends means they have taken your measure and decided, "I like this person. What I like about him outweighs any traits or habits that are less likable. I choose him as my friend." If people make that statement about you by their presence in your life, why argue it?
I watched this entire video and didn't notice anything about blinking, could just barely tell you flushed at the point you mentioned it (wouldn't have noticed if you hadn't brought it up), and thought you spoke with perfect clarity. First, this tells me you're "awfulizing" your tics. Do you really think when you're walking along beside someone, eating at a restaurant when half of everyone's attention is on their food, etc. that people notice half these things? Very likely not. Second, just take what steps you can to ameliorate the tics. Like, wear sunglasses when it makes sense so you're not worrying about your blinking, maybe do some tanning so flushing would be less noticeable-and carry on!
I'm not saying that to be cavalier-I know these things are very important to you-I'm saying them because, once you've done all you can, what is left is to say "This is who I am, so I'm going to live life and everything else be damned." It takes some "c'est la vie" in your attitude to live life, and the more you relax and say "c'est la vie", the more you'll develop your own "savoir faire". I'm 51, balding, ugly as a mud fence..."c'est la vie"! Because I accept who I am, the people in my life like my "savoir faire". You will NEVER be all things to all people, and loved by everyone. Real life is being there for your family and friends, loving them and accepting their love back. Try to get the scope of your ambitions in line with real life, not your self-critical definition.
I wish you do therapy😢😢😢😢
please reach out to Jesus , God loves you you shouldn't be alone .im so sorry gor your condition right now
hi jonny hope you are ok x