i am 19 years old and have had schizoaffective disorder since i was 14 but was misdiagnosed just like you. I deal with this TD and restless leg just like you and my family "makes fun" of me for it or just points it out endlessly. they dont mean anything by it but it's annoying. i understand when you say you get frustrated. i am frustrated all the time i live like this because of medicine for an illness i can't control. i love your videos because they make me feel less alone ❤️
Yeah that's kinda shitty. As if whenever they are sick in any way, you constantly point out their symptoms to them as if they weren't aware... Wheres the empathy sometimes 🫤 I hope you also have friends and other supporters that aren't as unhelpful!
Thanks for addressing this. I did an episode on my movement issues. I got tapered off Abilify because it caused akathisia which made my dystonia appear worse. I'm very self-conscious about my movements especially when my mom and I film episodes. Thank you for doing this one. It makes me feel less alone in my struggle with SZA, which is also what I hope my episode did for others. 🙏
I was having daily episodes that involved dystonia and functional paralysis (completely conscious and can feel touch, but can't move or vocalize) that lasted 10-20 minutes. It was very alarming, so I went to the ER the first time. I was misdiagnosed with psychogenic non-epileptic seizures, but it turns out that wasn't accurate. The cause was taking an ADHD medication. I also take an anticonvulsant for bipolar II, and apparently the blend of the two can cause those episodes, especially in dysautonomic patients (like me). I stopped the ADHD medication, and my dystonia and functional paralysis stopped and never happened again. I guess you win some and you lose some. It's good to know there are others with specific, under-represented symptoms, and I'm glad it's being talked about! I had never heard of dystonia until it happened to me, and even then it took a few days to find the term. People who may experience these things need more ways to learn about them and be prepared to treat or cope with them!
Thank you very much for sharing what dystonia is like for you. I respect that you showed it openly. I have been watching a lot of your videos lately. They are amazing and are helping a lot of people! Also, thank you for all the support you have given me on my channel. I always like hearing from you!
Thank you so much for the comment! I think showing things is important even when it’s a little…scary. Thanks again for your kind words and you’ll def keep hearing from me 😎
I appreciate you being vulnerable and sharing your reality with us. I love that you’re able to openly discuss everything that comes along with taking meds, good and bad. Your videos are really helping me on my journey to self-acceptance!
Never diagnosed, but I used to get restless legs from my medication, didn't even realize it was a side effect until I started taking the slow release version of the same med and it subsided. I also somehow have a tic disorder that went undiagnosed for years and years, only found out a few years ago and it's been a mess trying to accept that I can't help it. It's weird not to be in control of your body because it's such an unintuitive experience, I always used to blame myself or find strange explanations for what I did. I isolated myself because I knew I was weird but didn't know why and I didn't wanna be weird around people. Now there's a lot more awareness and it's that awareness that alerted me that I should see a doctor, but there's a kind of unique pain that comes with having confirmation that it's a disorder. I used to live in the illusion that eventually, I would stop because I would grow up and become a serious person. Now I know that because I still have symptoms as an adult, it's unlikely to resolve on its own. But there are some upsides to my tics, they have a very unique "sense of humor" that I could never come up with. Some people find the sounds I make endearing. And I feel more energetic and creative on days that I have more tics, so if it's a ticcy day, I know it's a good day.
interesting you mention how you're hurt energy and creative when you have the tics~ i notice them happening when im stressed, overstimulated, also with some music like gongs ~ i will see if im more creative during that time too :) thank you for sharing
I'm currently on olanzapine and thankfully haven't had many EPS side effects -but when I was on haldol, I had dystonic reactions. My tongue would stick out uncontrollably, my leg would lock up (almost like a Charlie horse that won't go away) and I would be unable to walk. These reactions were so extreme and painful my doctor said I was allergic to haldol, and can never be prescribed it again. I am so glad to be on olanzapine because these side effects are less. I do get muscle twitches and jerks occasionally though. I also have schizoaffective disorder and really find your channel inspiring! Thank you for sharing, and I understand what you are going through.
I've been on Olanzapine since I was 17, today 37, so 20 years. I've had short episodes of Parkinsonism, like 15 minutes a few days in a row, when changing the dose, but that's it. No other movement problems. I now take the mouth melting tablets, because it goes SO much quicker into the blood and I have an effect after just 15 minutes. This is why I use 5 mg melting as a tranquilliser when needed, works way better than Benzo. I take between 10-15 mg per day for bipolar type 2. I LOVE Olanzapine, it saves my life, year after year. Without it I go straight into mixed episodes and become a danger for myself. With it, I only have mild, subclinical mixed episodes, which is a HUGE difference. I'm in control! And I usually up my dose for a week, and the symptoms usually go away. Sure, Olanzapine make me crave chocolate and being sluggish, but that's also just my usual depressive + ADD symptoms. Some days I'm more energetic and not hungry, so my energy level and appetite follow my moods more than my medications. I wish it helped better against depression, but one medication can't do everything I guess 🤷🏽♀
I have never seen someone who had the courage to speak and share experiences like the ones you show us. I really like your sincerity, and I have learned things that I was completely unaware of. You are a true inspiration.
Obviously it's not the same thing, but the feeling described immediately before the "twitch" reminds me of hiccups. I can't imagine how s****y it would be to have major muscle "hiccups" like that
Hey Kit, Greetings from Australia. yeah I take aripiprazole(Abilify) by monthly injection for schizoeffective bipolar 1. My face twitches when I watch your videos.😂 Left side of the mouth and left thumb. Anyway, keep up the good work. My family and friends often wonder what I went through. Hospitals etc. Your videos are perfect at trying to explain it while at the same time removing some of the stigma that goes with it. It turns a delicate topic into a laugh. Not saying the condition is funny, it just takes the hurt out of it and brings it back to a common sense if you know what i mean.
Kit this video was very informative and so many of us can relate as this is the reality of taking long term antipsychotics. While the side effects are real and unfortunate it's a reminder that the medication helps control symptoms and allows us to be functional as best as as can in society. That's the benefit of taking medication.
I have basically the same jerky movements from my abilify. It's really annoying when I'm trying to go to sleep. It comes and goes, so at least I get a break. Thanks for covering this topic!
I have tourettes, and the 'warning' before a jerk is something I get too - I know just a moment before a tic happens that it's coming, a little jolt that just brings it to my awareness.
I never had a name for this - thank you! This happens to me when I get tired. My left side seems to experience this much more than the right; my left cheek, left elbow and left thigh are often twitchy. Occasionally, my right elbow. It began when I was on citalopram, and now that I'm on fluoxetine, it happens much less.
It also sometimes happens with my eyes - when I look ahead, it's fine, but off to the side, it feels like a pressure-induced ear pop kind of thing, and creates almost an echo. The twitch gradually decreases a bit, but renews if you reset to a new position.
I appreciate the time you take out of your day to help people learn about and understand schizoaffective disorder, and also the vulnerability it takes to show first hand those symptoms that you live with. You are incredibly strong and I hope all the best for you❤️
Your video just appeared in my feed and I thank you for making it. My son has had schizoaffective disorder for over 35 years and gets painful lockjaw from most antipsychotic medications. As you can probably imagine, there was almost no information-sharing in the 1980s. I appreciate your being so open about your experiences. I'm looking forward to watching more of your videos.
Hi. I also have schizoaffective disorder. I was diagnosed at age 17 and take an antipsychotic medication and an EP medication. Thank you for sharing your story.
I am so sorry you have to deal with this. Meds are my only lifeline, I couldn't imagine them doing this to me. Peace be with you. I take Risperidone, and just increased my dose after a hospitalization two weeks ago.
You're an extremely candid and empathic person. I thank you for your open and no-nonsense videos. They do help others. It's tiring, isn't it? Big hugs and be well...
It feels so refreshing to put a name to my issue with the arm jerking mine will be my right or left arm and sometimes my body when I am going to sleep to me it feels like a small jolt of electricity is rushing through my body thank you for this❤
Thank you for sharing this! I recently got put on lithium again and started dropping stuff randomly... Its not happening all the time but after seeing this I'm definitely better equiped to talk to him about it about it so thank you for this! I love your content and you give me hope there's a life worth creating for myself.
Hello!! I have schizophrenia and Tourette's syndrome. The only physical side effects I have had from an antipsychotic (outside of weight gain) were oculogyric crises on Abilify and I thought for the longest time (over a year of having them) that it was a horrible eye tic and I was frustrated when I couldn't control where my eyes look. It can also be scary. In a similar ish situation to your ER visit, I was having a tic attack in the middle of the night and it refused to stop or calm down and I was taken to the ER at 5am and they gave me a shot which Yes, stopped the tics, but then gave me on and off oculogyric crises for the next 48 hours. It was horrible. I hadn't been on Abilify in months then and still since have been on a different antipsychotic. I have seen a few of your videos and really appreciate you sharing your experiences with schizoaffective disorder!! I might not be able to relate 100% but the movements remind me of tics that I have and just want to let you know you're not alone and again thank you for sharing. I have had instances of my legs being wonky and it hard to walk but with TS for me personally it can be hard to tell what is and isn't a tic. Wish you well
Wild. I have had motor tics since I was pretty young, maybe around 10 or 12. Around age 30 I was diagnosed with ADHD and tourettes (no vocal component). For me the involuntary movements change over time. I used to flare my nostrils which was very distracting. Now, it's mostly neck and arm movements. The neck movements can turn into neck pain over time which can be pretty debilitating, requiring painkillers. If I concentrate I can stop them for a while, but it requires close to 100% concentration - impossible to do while driving or paying attention to anything like work. For me they get much worse when I'm watching a movie with a strong emotional scene, or I am agitated or stressed in any way, like when I have a deadline at work. It also can prevent me from going to sleep. I am actually surprised that more people don't ask me about it because it's very very obvious. I guess I hang out with good people who don't feel the need to point it out. The few times I've watched video of myself, I cringe at how much I'm ticcing and don't even realize that I am doing it. I know it's not exactly the same as the dystonia, but feels similar enough to what I face. I'm very happy too see you share your experience with the dystonia. I've lived with my tics for over 30 years, and sometimes it's very frustrating, but we are still here.
That is so scary it makes me want to quit taking psychiatric medication. I couldn't take cyprexa because it caused lockjaw for me so I stopped being able to talk right when I was taking it. They made me take it anyway and added a drug to fight the side effects of cyprexa but it still didn't help so I finally got to have the meds switched.
Completely off topic for the video. I have been thinking hard on what building a life worth living would look like for me. Thank you so much for introducing that idea to me
I love your content, it gives me insight into what people with similar experiences to you go through, and that is invaluable to me (and to your audience also).
i clicked on this video because i recognized the term dystonia, as someone with tourettes and primarily dystonic tics. i had no idea dystonia was a term used for anything other than tics and its really interesting !
Wow! That is really strange, thank you for spreading awareness. However the number of people who act as if you can control this or you're faking is astounding. Does listening to different types of music affect you in different ways? Thank you!
Like with the little arm hiccups (as someone else here hilariously called them)? Nah they March to the beat of their own weird drum no matter what’s playing. Good question tho!
EPS are fing awful. I’ve experienced Parkinsonism, had trouble walking too, hands would tremble hardcore. The last time I had EPS I woke up with very sore shins because apparently they were clenching while I was asleep. It’s my top-1 in uncomfortable and anxiety inducing things
I'm sorry that you go through this, it doesn't look like the best thing to have. I take olanzapine so yeah, good to know that this could possibly happen to me and not freak out if it does happen to me.
Wow!! Thanks. Your videos are so great. Great info. Great delivery! You are helping so many people connect and understand. I live with complex ptsd. You are an inspiration for living openly and for lived experience education. Great job.
i've been off antipsychotic medication (geodon) 15 plus years and i still have this side effect, my whole body can almost convulse when im very stressed. or if im around a lot of energy like a gong. sometimes at night too if im over stimulated. it's not serious but def is weird for some people to witness. i used to be on that parkinson's medication you mentioned too~ thank you for sharing, helps me feel less alone 🌈🙏
Thank you for spreading awareness of dystonia! I get weird jerks in my shoulders and arms which can be offsetting to people that I'm with, but it's luckily not my whole body and I haven't needed professional help for it yet. It does give me headaches from time to time though
Be strong kitt, I watch every video you post of issues that I can relate without freaking me out 😓it’s comforting to know we all have our issue & how it is to be brave in conquering our mindset to be confident in who we are & how to live a better life by example of a survivor point of view .Survive today for hope of a better tomorrow my friends 💪💪💪💕But remember hope is what drives us but resolve is what makes us 💕
I had akathisia from many different medications - risperidone, abilify, haloperidol and amisulpride(on high doses). Now, I'm on a different medication. I noticed some tardive dyskinesia a few months back while recording myself. It's unlikely to have been caused by my current medication and more likely by the meds I have taken in the past. I'm not sure if I still have TD because I haven't seen my face for long enough. Thank you for sharing about Dystonia, I did not know about it. I hope you a quick and well recovery in a short amount of time!
Thanks for putting this info and experience out there. We've had something going on with muscles around our left shoulder since we took antipsychotic meds about 20 years ago. Can stop it happening by tensing but then all the muscles around the shoulder all tense up too. Warm bath totally helps but takes a while. Never been diagnosed and tbh not always sure if it isn't 'psychomotor agitiation' or how to tell the difference.
It looks like muscle twitching when I'm under long term stress, but much smaller for me like my eyelid or a muscle near the right knee. It usually just feels annoying, but knowing that it comes from stress makes it worse because I realize I've in a bad shape for a while and I don't know how to help it.
I am so thankful to have found your channel, it seems like you always encover specific topics that I can never find substantial information about. I had an extrapyramidal crisis back in August during an exchange in my antipsychotic medication and I will never forget the feeling of not being in control of my own body - it was this sensation of entrapment and deeply discomfort - it lasted for 12 hours until I gave up and called 911. My anxiety levels raised up the following days, I feared it would happen again, I feared driving myself insane (people did not understand the involuntary nature of the movements) and, overall, it was definitely not a good time. Thank you for sharing this with us, you are not alone. Also, you remind me so much of Anya Taylor-Joy. Much love from Brazil.
I have dystonic cerebral palsy, so my primary tonic presentation is dystonia. What you describe happening to you is called medication-onset parkinsonism, as opposed to TARD(Y)ive dyskinesia. Benzotropine is the first drug of choice in a class of medications called antichollinergics. Other good choices to discuss with your clinician are trihexyphenidyl (brand name Artane). Some other medications act like antichollinergics even though that is not their primary class, such as amitryptiline. Yes, dystonia is exhausting - and involuntary. Managed dystonia really is key. Something to know is that dystonia is exertion-dependent; i.e., the harder you try to move or exert the muscle that is dystonic, the more dystonic it will become. Neuroleptics/antipsychotics cause extrapyramidal side-effects because they block dopamine. Amitryptiline is commonly used for sleep/insomnia issues and neuropathic pain.
Thanks for sharing! I'm on other medication because of ASD. But I often recognise things in your video's. This time not so much, lucky me! Good luck and take care!
I'm sorry you experience this. I hope it's not too painful / uncomfortable. Id like to see a video review of Clonidine if you havent done one already. I found your prior med review videos informative.
I actually have a similar problem with my right arm except it will just jump at random. I've managed to pop myself in the face a few times. The musical meds tend to slow some things at times while causing others. Good Times, Good Times.
I used to take Abilify for autism (in hindsight I was developing Bipolar disorder when my psychiatrist began raising my dosage when I was in my mid teens) and at 10/15mg I got a lot of repetitive facial twitching and it sometimes got really distracting. I'm currently not on antipsychotics right now (I do take Lamotrigine as a mood stabilizer for my Bipolar) and never had that effect with it. Now I know why my face was doing that. People thought I was weird for it
It's like restless leg syndrome for your upper body... I have that and it's very annoying, I feel ya. Getting up and walking around helps with that so maybe you could try that
When I was dealing with the full body jerks at night most of the time that would help. But it did get to a point where only showers did. It’s still good advice tho 👍
My understanding is that Zyprexa is very good when it comes to extrapyramidal effects. I'm on it for 16 years now and literally never had any muscle rigidity or tremors or dystonia. But I did gain like 120 pounds of weight (some of it is muscle I guess, needed to support the fat) and I sleep more than I'm awake (on average). If there weren't for this huge weight gain and hypersomnia I'd call it a perfect medicine for me. I really hope your dystonia gets better over time Kit, rather than worse. And there may be new advances in medicine so we can finally move away from Zyprexa. I heard there's a new drug called Cobenfy, it just got approved for treatment of schizophrenia, apparently it has totally different mechanism of action than all other antipsychotics, so maybe mention that your psychiatrist. Ty Kit, wishing us all good health :)
Your a beautiful young lady. We all have our crosses to bear and lifes put a big one on you but your cheerful personality makes the video all fine. I enjoy watching your videos very much, Thank You.
I do have something similar in my legs, involuntary movements often when asleep. - Since I am a diabetic, the explanation is bad circulation in my legs, muscles contract if there is a shortage of oxygen.
I have tourettes syndrome i know exactly what you mean i know a tic is coming but i cant stop all of them, the more i try the worse they get, obviously its a completely different condition but theyre both unintentional and unavoidable. It's the same feeling in the body. I can't explain the feeling very well. It's a mix of pins and neddles, lightning, dread and euphoria when the tic leaves or is finished or whatever. I hope it doesn't stick around for you it can be very fatiguing fighting your own body to do even basic tasks i cant imagine constantly ticing and although some can be painful my tics change frequently enough they tend to not stick around for more than a month
I’ve had tics for years and they’re really annoying too, I have one in my arms that’s like when your elbow hits something. I’m being evaluated for psychotic symptoms and if I have to start medication for them, I’m curious to see how that’ll work out with tics. Thank you for making this video ❤
Hi. Thank you for this. I have schizoaffective disorder and take risperidone. I believe i have this sort of movement disorder in my right leg, but when my psychiatrist looks at the movements, she declares them normal. I don’t know how that can be except that i don’t have any sort of stiffness when she manipulates my arms and legs. But clearly, my leg is moving involuntarily!
Would you be open to doing a video on recovery from mental illness and sobriety? The hardest part of recovery from my bipolar 1 w/ psychotic features has been maintaining sobriety. I've managed to do it for a little over a year now, but it definitely has been the biggest challenge for me. Before I decided to try to get well from mental illness, I was doing meth and heroin every day for almost a year straight. Suddenly stopping and getting clean was very hard on me. Even after a year entirely sober, I still do not feel particularly well overall. I was so used to the highs being so high and the lows being so low, so life feels very dull now between sobriety and the psych meds. Nothing is particularly exciting anymore, especially in relation to methamphetamine. I go to the 12 step meetings + do the steps and I really like them, but I still dont feel fulfilled in any way. I know that you mentioned in another video that you are in recovery from alcoholism, so I would love to hear your take on this. How have you found fulfillment in your life after getting sober and going on antipsychotics + mood stabilizers?
I have dystonia from zyprexa too. It’s jaw-opening dystonia so my mouth is constantly trying to open, it’s uncomfortable but luckily hardly noticeable. I also have it in my right leg and it’s caused tendinitis because I twist my foot and leg while I’m walking. I am super curious if with the newer non-dopaminergic drugs in the pipeline, if this would heal if I switched meds or if it’s permanent.
Yo Kit, can you tell me exactly what you need to do in a morning just to live a healthy life. For me, the pills have done what they are going to do and now having a good day is more up to me, not the medications. They have helped a lot but there is still parts of these disorders that are still quite prominent. I need to know that there are still people who have steady work to do on a daily basis, beyond what the meds can do. It motivates me to do the work in knowing I am not alone with it.. So if you can, please tell me what the work is for you, all to live a meaningful life. You are an inspiration. ( You probably hear that all the time.) Thanks Kit, Bye!
I stopped taking antipsychotics because my entire personality was sucked away and I had movement problems as well while I was on them. I was so miserable and it was scary for my family. My psychosis was heavily drug influenced so I’m sure it’s different for me. We are all different people and medication may be right for some and wrong for others!
Thank you for sharing. I've been having twitches (especially right arm) and convulsions for around 25 years without drugs and seeing you freely sharing was really validating (been told no drugs for my condition). It also set off my twitches 😂😂 but that's all good. I'll bear the hot shower technique in mind too, might help. Take care.
Yes eps parkisons type movements,dystonia, ataxia, partial lower body paralysis put me in a wheelchair for 5 years, I couldn't walk.( Geodon did that) Risperdal gave me lower body paralysis in my legs and feet, ataxia, I couldn't walk forwards , but I could walk backwards! ( Moon walking!) Yeah..all the meds give me neurological side effects, except Clozoril and Seroquel...but they make me gain over 100 pounds..I tried Caplyta, some relief..but after 5 years, it gave me EPS where I kept falling..I'm just recovering from a severe fall where I fell out of bed and broke both ankles! Spent 3 months in the hospital and nursing home..also it gave me Bells Palsey 3x...I want to try the newest antiphychotic..Cobenfy....well I have to, no choice!
When I take anti-psychotics (i started taking it for no real reason - just a family problem started it) - i do begin to feel weird and I have abnormal movements - it's tricky to explain! I hope you'll be ok
im really sorry. i take zyprexa in 5mg twice a day and have never had anything like this. maybe like a few times... when im about to reach for something its like my arm twitches ahead of me while im thinking about moving my arm and does it on its own alot faster than i had intended. then i kinda wonder if anyone just saw me being weird. not sure if that counts. but thanks for sharing and raising awareness. i hadnt really considered it being a 'thing' before this video
Those involuntary movements seems to give you a feeling similar to what stuttering give me. I do not know how to describe it. Anyway, I think I understand very well what you are living, with your body refusing to obey you.
I've been taking Paliperidone for 11 years now (first as an injection and now as a pill). I get a lot of cramps throughout my body, but mainly in the same spots when I don't eat a lot. I'm already overweight with high cholesterol and am pre-hypertensive.. I'm hesitant to change the medication because it treats my Schizo-affective symptoms so well.
The crazy side effect i had from being on sertraline and quetiapine at high doses was i could lay in snow in just my boxers and literally melt the snow again and again and never get cold along with crazy hand tremors which stopped me from drawing and painting and even though it was years ago still not back into ether. Also with olanzapine it gave me diabetes
Geez, Kit, you know you don't have to do this to yourself for your TH-cam audience. But thank you. (Off topic, I didn't realize Madame Bee was that large. Big brown bowling pin. :-)
I've just been diagnosed with the Parkinson's shaking. I have a terrible left hand and it really suck I'm left-handed after a childhood stroke so with my bipolar so it's another side effects on the list
Waves...Enjoy your weekend. You should call them arm hiccups.
Arm hiccups 😂 love that
@@SchizoKitzo use it! I'll allow it.
Hiccarms?
Wow. The brain and nervous system are so much more complex than I thought. You are incredible ❤
It really is wild aint it?
i am 19 years old and have had schizoaffective disorder since i was 14 but was misdiagnosed just like you. I deal with this TD and restless leg just like you and my family "makes fun" of me for it or just points it out endlessly. they dont mean anything by it but it's annoying. i understand when you say you get frustrated. i am frustrated all the time i live like this because of medicine for an illness i can't control. i love your videos because they make me feel less alone ❤️
I love Kits videos too because they make me feel less alone
I'm troubled by the fact that your family makes fun and points it out all the time. This makes me very sad. You need support not to be made fun of. ❤
Yeah that's kinda shitty. As if whenever they are sick in any way, you constantly point out their symptoms to them as if they weren't aware... Wheres the empathy sometimes 🫤 I hope you also have friends and other supporters that aren't as unhelpful!
honestly...same
don't mind me, just popping by to wish you a great weekend!
Thanks for addressing this. I did an episode on my movement issues. I got tapered off Abilify because it caused akathisia which made my dystonia appear worse. I'm very self-conscious about my movements especially when my mom and I film episodes. Thank you for doing this one. It makes me feel less alone in my struggle with SZA, which is also what I hope my episode did for others. 🙏
akathisia is the worst ~ it's scary how it used to happen randomly for me ~ geodon caused it🙏 i am sad you experienced it as well *hugs*
Haldol gave me dystonia and I had to go to the emergency room and get a shot to stop it. Never took that medication again.
It is so cool how strong and persistent you are in this video. It really gives us hope. We can do this 💙
WE CAN 💪
@@SchizoKitzoye💪🏻
i feel the same way ~ what she's dealing with can be hard, i admire her attitude and upbeat way of sharing ❤
I was having daily episodes that involved dystonia and functional paralysis (completely conscious and can feel touch, but can't move or vocalize) that lasted 10-20 minutes. It was very alarming, so I went to the ER the first time. I was misdiagnosed with psychogenic non-epileptic seizures, but it turns out that wasn't accurate. The cause was taking an ADHD medication. I also take an anticonvulsant for bipolar II, and apparently the blend of the two can cause those episodes, especially in dysautonomic patients (like me). I stopped the ADHD medication, and my dystonia and functional paralysis stopped and never happened again. I guess you win some and you lose some.
It's good to know there are others with specific, under-represented symptoms, and I'm glad it's being talked about! I had never heard of dystonia until it happened to me, and even then it took a few days to find the term. People who may experience these things need more ways to learn about them and be prepared to treat or cope with them!
Thank you very much for sharing what dystonia is like for you. I respect that you showed it openly. I have been watching a lot of your videos lately. They are amazing and are helping a lot of people! Also, thank you for all the support you have given me on my channel. I always like hearing from you!
Thank you so much for the comment! I think showing things is important even when it’s a little…scary. Thanks again for your kind words and you’ll def keep hearing from me 😎
I appreciate you being vulnerable and sharing your reality with us. I love that you’re able to openly discuss everything that comes along with taking meds, good and bad. Your videos are really helping me on my journey to self-acceptance!
Just wanted to say you have a wonderful community. There are so many nice comments!
I love the SK Hive 🐝 thank you!
Never diagnosed, but I used to get restless legs from my medication, didn't even realize it was a side effect until I started taking the slow release version of the same med and it subsided.
I also somehow have a tic disorder that went undiagnosed for years and years, only found out a few years ago and it's been a mess trying to accept that I can't help it. It's weird not to be in control of your body because it's such an unintuitive experience, I always used to blame myself or find strange explanations for what I did. I isolated myself because I knew I was weird but didn't know why and I didn't wanna be weird around people. Now there's a lot more awareness and it's that awareness that alerted me that I should see a doctor, but there's a kind of unique pain that comes with having confirmation that it's a disorder. I used to live in the illusion that eventually, I would stop because I would grow up and become a serious person. Now I know that because I still have symptoms as an adult, it's unlikely to resolve on its own. But there are some upsides to my tics, they have a very unique "sense of humor" that I could never come up with. Some people find the sounds I make endearing. And I feel more energetic and creative on days that I have more tics, so if it's a ticcy day, I know it's a good day.
interesting you mention how you're hurt energy and creative when you have the tics~ i notice them happening when im stressed, overstimulated, also with some music like gongs ~ i will see if im more creative during that time too :) thank you for sharing
I'm currently on olanzapine and thankfully haven't had many EPS side effects -but when I was on haldol, I had dystonic reactions. My tongue would stick out uncontrollably, my leg would lock up (almost like a Charlie horse that won't go away) and I would be unable to walk. These reactions were so extreme and painful my doctor said I was allergic to haldol, and can never be prescribed it again.
I am so glad to be on olanzapine because these side effects are less. I do get muscle twitches and jerks occasionally though. I also have schizoaffective disorder and really find your channel inspiring! Thank you for sharing, and I understand what you are going through.
I don’t even want to think about what haldol would do to me. Thanks for sharing this!
Typical antipsychotics are no joke!
I've been on Olanzapine since I was 17, today 37, so 20 years. I've had short episodes of Parkinsonism, like 15 minutes a few days in a row, when changing the dose, but that's it. No other movement problems.
I now take the mouth melting tablets, because it goes SO much quicker into the blood and I have an effect after just 15 minutes. This is why I use 5 mg melting as a tranquilliser when needed, works way better than Benzo. I take between 10-15 mg per day for bipolar type 2.
I LOVE Olanzapine, it saves my life, year after year. Without it I go straight into mixed episodes and become a danger for myself. With it, I only have mild, subclinical mixed episodes, which is a HUGE difference. I'm in control! And I usually up my dose for a week, and the symptoms usually go away.
Sure, Olanzapine make me crave chocolate and being sluggish, but that's also just my usual depressive + ADD symptoms. Some days I'm more energetic and not hungry, so my energy level and appetite follow my moods more than my medications.
I wish it helped better against depression, but one medication can't do everything I guess 🤷🏽♀
I have never seen someone who had the courage to speak and share experiences like the ones you show us. I really like your sincerity, and I have learned things that I was completely unaware of. You are a true inspiration.
I hoped to be so, thank you
Obviously it's not the same thing, but the feeling described immediately before the "twitch" reminds me of hiccups. I can't imagine how s****y it would be to have major muscle "hiccups" like that
One other person described this as arm hiccups actually and I’m like I love that!
Hey Kit, Greetings from Australia. yeah I take aripiprazole(Abilify) by monthly injection for schizoeffective bipolar 1. My face twitches when I watch your videos.😂 Left side of the mouth and left thumb. Anyway, keep up the good work. My family and friends often wonder what I went through. Hospitals etc. Your videos are perfect at trying to explain it while at the same time removing some of the stigma that goes with it. It turns a delicate topic into a laugh. Not saying the condition is funny, it just takes the hurt out of it and brings it back to a common sense if you know what i mean.
I get what you mean. Thank you!
Kit this video was very informative and so many of us can relate as this is the reality of taking long term antipsychotics. While the side effects are real and unfortunate it's a reminder that the medication helps control symptoms and allows us to be functional as best as as can in society. That's the benefit of taking medication.
I have basically the same jerky movements from my abilify. It's really annoying when I'm trying to go to sleep. It comes and goes, so at least I get a break. Thanks for covering this topic!
I have tourettes, and the 'warning' before a jerk is something I get too - I know just a moment before a tic happens that it's coming, a little jolt that just brings it to my awareness.
I never had a name for this - thank you! This happens to me when I get tired. My left side seems to experience this much more than the right; my left cheek, left elbow and left thigh are often twitchy. Occasionally, my right elbow. It began when I was on citalopram, and now that I'm on fluoxetine, it happens much less.
Glad it happens less, and also yes it has a name! Took me a while to figure out what it was called myself!
It also sometimes happens with my eyes - when I look ahead, it's fine, but off to the side, it feels like a pressure-induced ear pop kind of thing, and creates almost an echo. The twitch gradually decreases a bit, but renews if you reset to a new position.
I appreciate the time you take out of your day to help people learn about and understand schizoaffective disorder, and also the vulnerability it takes to show first hand those symptoms that you live with. You are incredibly strong and I hope all the best for you❤️
Your video just appeared in my feed and I thank you for making it. My son has had schizoaffective disorder for over 35 years and gets painful lockjaw from most antipsychotic medications. As you can probably imagine, there was almost no information-sharing in the 1980s. I appreciate your being so open about your experiences. I'm looking forward to watching more of your videos.
Hi. I also have schizoaffective disorder. I was diagnosed at age 17 and take an antipsychotic medication and an EP medication. Thank you for sharing your story.
I learn something new with every one of your videos that I watch.
I am so sorry you have to deal with this. Meds are my only lifeline, I couldn't imagine them doing this to me. Peace be with you. I take Risperidone, and just increased my dose after a hospitalization two weeks ago.
You're an extremely candid and empathic person. I thank you for your open and no-nonsense videos. They do help others.
It's tiring, isn't it?
Big hugs and be well...
Thank you!
It feels so refreshing to put a name to my issue with the arm jerking mine will be my right or left arm and sometimes my body when I am going to sleep to me it feels like a small jolt of electricity is rushing through my body thank you for this❤
My hands are shaking from the Olanzapine. It is very difficult to do fine work.
Thank you for sharing this! I recently got put on lithium again and started dropping stuff randomly... Its not happening all the time but after seeing this I'm definitely better equiped to talk to him about it about it so thank you for this! I love your content and you give me hope there's a life worth creating for myself.
Thank you for opening up your life to this scourge! I’m sorry you must face this in life,
Life goes on and my meds do many wonderful things for me. Thank you for the comment and I hope you have a good day!
Hello!! I have schizophrenia and Tourette's syndrome. The only physical side effects I have had from an antipsychotic (outside of weight gain) were oculogyric crises on Abilify and I thought for the longest time (over a year of having them) that it was a horrible eye tic and I was frustrated when I couldn't control where my eyes look. It can also be scary. In a similar ish situation to your ER visit, I was having a tic attack in the middle of the night and it refused to stop or calm down and I was taken to the ER at 5am and they gave me a shot which Yes, stopped the tics, but then gave me on and off oculogyric crises for the next 48 hours. It was horrible. I hadn't been on Abilify in months then and still since have been on a different antipsychotic. I have seen a few of your videos and really appreciate you sharing your experiences with schizoaffective disorder!! I might not be able to relate 100% but the movements remind me of tics that I have and just want to let you know you're not alone and again thank you for sharing. I have had instances of my legs being wonky and it hard to walk but with TS for me personally it can be hard to tell what is and isn't a tic. Wish you well
Wild. I have had motor tics since I was pretty young, maybe around 10 or 12.
Around age 30 I was diagnosed with ADHD and tourettes (no vocal component).
For me the involuntary movements change over time. I used to flare my nostrils which was very distracting. Now, it's mostly neck and arm movements. The neck movements can turn into neck pain over time which can be pretty debilitating, requiring painkillers. If I concentrate I can stop them for a while, but it requires close to 100% concentration - impossible to do while driving or paying attention to anything like work.
For me they get much worse when I'm watching a movie with a strong emotional scene, or I am agitated or stressed in any way, like when I have a deadline at work. It also can prevent me from going to sleep.
I am actually surprised that more people don't ask me about it because it's very very obvious. I guess I hang out with good people who don't feel the need to point it out.
The few times I've watched video of myself, I cringe at how much I'm ticcing and don't even realize that I am doing it.
I know it's not exactly the same as the dystonia, but feels similar enough to what I face.
I'm very happy too see you share your experience with the dystonia. I've lived with my tics for over 30 years, and sometimes it's very frustrating, but we are still here.
That is so scary it makes me want to quit taking psychiatric medication. I couldn't take cyprexa because it caused lockjaw for me so I stopped being able to talk right when I was taking it. They made me take it anyway and added a drug to fight the side effects of cyprexa but it still didn't help so I finally got to have the meds switched.
Yeah that seems like it would make your shoulder sore after a while 😅 very interesting tho! Also love the person suggesting arm hiccups 😄
The arm hiccups is so accurate 😂
Don't be nervous, we're all here to listen ❤
Completely off topic for the video. I have been thinking hard on what building a life worth living would look like for me. Thank you so much for introducing that idea to me
I love your content, it gives me insight into what people with similar experiences to you go through, and that is invaluable to me (and to your audience also).
i clicked on this video because i recognized the term dystonia, as someone with tourettes and primarily dystonic tics. i had no idea dystonia was a term used for anything other than tics and its really interesting !
Wow! That is really strange, thank you for spreading awareness. However the number of people who act as if you can control this or you're faking is astounding. Does listening to different types of music affect you in different ways? Thank you!
Like with the little arm hiccups (as someone else here hilariously called them)? Nah they March to the beat of their own weird drum no matter what’s playing. Good question tho!
EPS are fing awful. I’ve experienced Parkinsonism, had trouble walking too, hands would tremble hardcore. The last time I had EPS I woke up with very sore shins because apparently they were clenching while I was asleep.
It’s my top-1 in uncomfortable and anxiety inducing things
Love you. May you experience joy and contentment.
This was educational, thank you.
I'm sorry that you go through this, it doesn't look like the best thing to have. I take olanzapine so yeah, good to know that this could possibly happen to me and not freak out if it does happen to me.
Just want to say I love you and appreciate you sharing this with us. BTW, the blue looks really cool in your hair too!!
Wow!! Thanks. Your videos are so great. Great info. Great delivery! You are helping so many people connect and understand. I live with complex ptsd. You are an inspiration for living openly and for lived experience education. Great job.
i've been off antipsychotic medication (geodon) 15 plus years and i still have this side effect, my whole body can almost convulse when im very stressed. or if im around a lot of energy like a gong. sometimes at night too if im over stimulated. it's not serious but def is weird for some people to witness. i used to be on that parkinson's medication you mentioned too~ thank you for sharing, helps me feel less alone 🌈🙏
Thank you for spreading awareness of dystonia! I get weird jerks in my shoulders and arms which can be offsetting to people that I'm with, but it's luckily not my whole body and I haven't needed professional help for it yet. It does give me headaches from time to time though
Be strong kitt, I watch every video you post of issues that I can relate without freaking me out 😓it’s comforting to know we all have our issue & how it is to be brave in conquering our mindset to be confident in who we are & how to live a better life by example of a survivor point of view .Survive today for hope of a better tomorrow my friends 💪💪💪💕But remember hope is what drives us but resolve is what makes us 💕
I had akathisia from many different medications - risperidone, abilify, haloperidol and amisulpride(on high doses). Now, I'm on a different medication. I noticed some tardive dyskinesia a few months back while recording myself. It's unlikely to have been caused by my current medication and more likely by the meds I have taken in the past. I'm not sure if I still have TD because I haven't seen my face for long enough.
Thank you for sharing about Dystonia, I did not know about it. I hope you a quick and well recovery in a short amount of time!
Do a video about akasthisia. And akasthisia vs dystonia. Please.
What a great video! I’ve had tardive dyskinesia from seroquel but thankfully I got off that med fast enough that it didn’t become permanent.
That’s so good that you managed to not have it be permanent! Super happy for you!
Thanks for putting this info and experience out there. We've had something going on with muscles around our left shoulder since we took antipsychotic meds about 20 years ago. Can stop it happening by tensing but then all the muscles around the shoulder all tense up too. Warm bath totally helps but takes a while. Never been diagnosed and tbh not always sure if it isn't 'psychomotor agitiation' or how to tell the difference.
It looks like muscle twitching when I'm under long term stress, but much smaller for me like my eyelid or a muscle near the right knee. It usually just feels annoying, but knowing that it comes from stress makes it worse because I realize I've in a bad shape for a while and I don't know how to help it.
Also thank you for making so many videos so often, they are all interesting
Glad you like them!
Thank you for continuing to make your videos.
At least it is fine when you don’t do certain poses, etc. and at least it’s not TD! Always be thankful 💜
I am so thankful to have found your channel, it seems like you always encover specific topics that I can never find substantial information about. I had an extrapyramidal crisis back in August during an exchange in my antipsychotic medication and I will never forget the feeling of not being in control of my own body - it was this sensation of entrapment and deeply discomfort - it lasted for 12 hours until I gave up and called 911. My anxiety levels raised up the following days, I feared it would happen again, I feared driving myself insane (people did not understand the involuntary nature of the movements) and, overall, it was definitely not a good time.
Thank you for sharing this with us, you are not alone. Also, you remind me so much of Anya Taylor-Joy.
Much love from Brazil.
I try to fill the gaps in knowledge on the internet. Thank you for your kind words!
I have dystonic cerebral palsy, so my primary tonic presentation is dystonia. What you describe happening to you is called medication-onset parkinsonism, as opposed to TARD(Y)ive dyskinesia. Benzotropine is the first drug of choice in a class of medications called antichollinergics. Other good choices to discuss with your clinician are trihexyphenidyl (brand name Artane). Some other medications act like antichollinergics even though that is not their primary class, such as amitryptiline. Yes, dystonia is exhausting - and involuntary. Managed dystonia really is key. Something to know is that dystonia is exertion-dependent; i.e., the harder you try to move or exert the muscle that is dystonic, the more dystonic it will become. Neuroleptics/antipsychotics cause extrapyramidal side-effects because they block dopamine. Amitryptiline is commonly used for sleep/insomnia issues and neuropathic pain.
Thanks for sharing! I'm on other medication because of ASD. But I often recognise things in your video's. This time not so much, lucky me! Good luck and take care!
I'm sorry you experience this. I hope it's not too painful / uncomfortable.
Id like to see a video review of Clonidine if you havent done one already. I found your prior med review videos informative.
Kit, thanks for educating the world. Why do I have an urge to hug you ? I have a thing for truly exceptional individuals. ❤😊❤
I actually have a similar problem with my right arm except it will just jump at random. I've managed to pop myself in the face a few times. The musical meds tend to slow some things at times while causing others. Good Times, Good Times.
I used to take Abilify for autism (in hindsight I was developing Bipolar disorder when my psychiatrist began raising my dosage when I was in my mid teens) and at 10/15mg I got a lot of repetitive facial twitching and it sometimes got really distracting. I'm currently not on antipsychotics right now (I do take Lamotrigine as a mood stabilizer for my Bipolar) and never had that effect with it. Now I know why my face was doing that. People thought I was weird for it
It's like restless leg syndrome for your upper body... I have that and it's very annoying, I feel ya. Getting up and walking around helps with that so maybe you could try that
When I was dealing with the full body jerks at night most of the time that would help. But it did get to a point where only showers did. It’s still good advice tho 👍
Well good luck! I'm sure it's no fun...@SchizoKitzo
My understanding is that Zyprexa is very good when it comes to extrapyramidal effects. I'm on it for 16 years now and literally never had any muscle rigidity or tremors or dystonia. But I did gain like 120 pounds of weight (some of it is muscle I guess, needed to support the fat) and I sleep more than I'm awake (on average). If there weren't for this huge weight gain and hypersomnia I'd call it a perfect medicine for me. I really hope your dystonia gets better over time Kit, rather than worse. And there may be new advances in medicine so we can finally move away from Zyprexa. I heard there's a new drug called Cobenfy, it just got approved for treatment of schizophrenia, apparently it has totally different mechanism of action than all other antipsychotics, so maybe mention that your psychiatrist. Ty Kit, wishing us all good health :)
Your a beautiful young lady. We all have our crosses to bear and lifes put a big one on you but your cheerful personality makes the video all fine. I enjoy watching your videos very much, Thank You.
Thank you so much for sharing!
My whole heart is with you ❤❤❤
Hang in there lil lady. You will be fine.
Thanks for showing this Nice video ❤
Prayers for u ❤️❤️
I am sorry that you suffer from this side effect. 😢🙏
Great video! I get it a little but nothing like what you are going through😁
Thank you for sharing ❤
I do have something similar in my legs, involuntary movements often when asleep. - Since I am a diabetic, the explanation is bad circulation in my legs, muscles contract if there is a shortage of oxygen.
Oh interesting! I had no idea that could be a thing thanks for sharing ^_^
I have tourettes syndrome i know exactly what you mean i know a tic is coming but i cant stop all of them, the more i try the worse they get, obviously its a completely different condition but theyre both unintentional and unavoidable. It's the same feeling in the body. I can't explain the feeling very well. It's a mix of pins and neddles, lightning, dread and euphoria when the tic leaves or is finished or whatever. I hope it doesn't stick around for you it can be very fatiguing fighting your own body to do even basic tasks i cant imagine constantly ticing and although some can be painful my tics change frequently enough they tend to not stick around for more than a month
I’ve had tics for years and they’re really annoying too, I have one in my arms that’s like when your elbow hits something. I’m being evaluated for psychotic symptoms and if I have to start medication for them, I’m curious to see how that’ll work out with tics. Thank you for making this video ❤
Hi. Thank you for this. I have schizoaffective disorder and take risperidone. I believe i have this sort of movement disorder in my right leg, but when my psychiatrist looks at the movements, she declares them normal. I don’t know how that can be except that i don’t have any sort of stiffness when she manipulates my arms and legs. But clearly, my leg is moving involuntarily!
Would you be open to doing a video on recovery from mental illness and sobriety? The hardest part of recovery from my bipolar 1 w/ psychotic features has been maintaining sobriety. I've managed to do it for a little over a year now, but it definitely has been the biggest challenge for me. Before I decided to try to get well from mental illness, I was doing meth and heroin every day for almost a year straight. Suddenly stopping and getting clean was very hard on me. Even after a year entirely sober, I still do not feel particularly well overall. I was so used to the highs being so high and the lows being so low, so life feels very dull now between sobriety and the psych meds. Nothing is particularly exciting anymore, especially in relation to methamphetamine. I go to the 12 step meetings + do the steps and I really like them, but I still dont feel fulfilled in any way. I know that you mentioned in another video that you are in recovery from alcoholism, so I would love to hear your take on this. How have you found fulfillment in your life after getting sober and going on antipsychotics + mood stabilizers?
I kinda go through this took meds for years now off them dont give up
I have dystonia from zyprexa too. It’s jaw-opening dystonia so my mouth is constantly trying to open, it’s uncomfortable but luckily hardly noticeable. I also have it in my right leg and it’s caused tendinitis because I twist my foot and leg while I’m walking. I am super curious if with the newer non-dopaminergic drugs in the pipeline, if this would heal if I switched meds or if it’s permanent.
Yo Kit, can you tell me exactly what you need to do in a morning just to live a healthy life. For me, the pills have done what they are going to do and now having a good day is more up to me, not the medications. They have helped a lot but there is still parts of these disorders that are still quite prominent. I need to know that there are still people who have steady work to do on a daily basis, beyond what the meds can do. It motivates me to do the work in knowing I am not alone with it.. So if you can, please tell me what the work is for you, all to live a meaningful life. You are an inspiration. ( You probably hear that all the time.) Thanks Kit, Bye!
I stopped taking antipsychotics because my entire personality was sucked away and I had movement problems as well while I was on them. I was so miserable and it was scary for my family. My psychosis was heavily drug influenced so I’m sure it’s different for me. We are all different people and medication may be right for some and wrong for others!
On both atypical and typical antipsychotics . Never had issues with movement though.
Thank you for sharing. I've been having twitches (especially right arm) and convulsions for around 25 years without drugs and seeing you freely sharing was really validating (been told no drugs for my condition). It also set off my twitches 😂😂 but that's all good. I'll bear the hot shower technique in mind too, might help. Take care.
I hope the hot shower can help!
Yes eps parkisons type movements,dystonia, ataxia, partial lower body paralysis put me in a wheelchair for 5 years, I couldn't walk.( Geodon did that) Risperdal gave me lower body paralysis in my legs and feet, ataxia, I couldn't walk forwards , but I could walk backwards! ( Moon walking!) Yeah..all the meds give me neurological side effects, except Clozoril and Seroquel...but they make me gain over 100 pounds..I tried Caplyta, some relief..but after 5 years, it gave me EPS where I kept falling..I'm just recovering from a severe fall where I fell out of bed and broke both ankles! Spent 3 months in the hospital and nursing home..also it gave me Bells Palsey 3x...I want to try the newest antiphychotic..Cobenfy....well I have to, no choice!
Thanks so much for sharing. hugz from afar.
When I take anti-psychotics (i started taking it for no real reason - just a family problem started it) - i do begin to feel weird and I have abnormal movements - it's tricky to explain! I hope you'll be ok
im really sorry. i take zyprexa in 5mg twice a day and have never had anything like this. maybe like a few times... when im about to reach for something its like my arm twitches ahead of me while im thinking about moving my arm and does it on its own alot faster than i had intended. then i kinda wonder if anyone just saw me being weird. not sure if that counts. but thanks for sharing and raising awareness. i hadnt really considered it being a 'thing' before this video
Awww Baby!❤️🩹🐾❤️🩹🐾❤️🩹🐾
THANKS MOM
Those involuntary movements seems to give you a feeling similar to what stuttering give me. I do not know how to describe it. Anyway, I think I understand very well what you are living, with your body refusing to obey you.
I've been taking Paliperidone for 11 years now (first as an injection and now as a pill). I get a lot of cramps throughout my body, but mainly in the same spots when I don't eat a lot. I'm already overweight with high cholesterol and am pre-hypertensive.. I'm hesitant to change the medication because it treats my Schizo-affective symptoms so well.
The crazy side effect i had from being on sertraline and quetiapine at high doses was i could lay in snow in just my boxers and literally melt the snow again and again and never get cold along with crazy hand tremors which stopped me from drawing and painting and even though it was years ago still not back into ether. Also with olanzapine it gave me diabetes
I was on depakote for numerous years 1500mg daily, and my hands and head shook pretty badly at times.
Omg what a interesting video!❤
Geez, Kit, you know you don't have to do this to yourself for your TH-cam audience. But thank you. (Off topic, I didn't realize Madame Bee was that large. Big brown bowling pin. :-)
Big brown bowling pin omg 😂 thanks for the laugh!
I was just taken off of Zyprexa because it triggered mania 😢
Kit, I hope you know how BEAUTIFUL you are 😍
I've just been diagnosed with the Parkinson's shaking. I have a terrible left hand and it really suck I'm left-handed after a childhood stroke so with my bipolar so it's another side effects on the list
did your dystonia improve during the years? if you quit zyprexa, will your dystonia eventually disappear ?