Oh my god everyone thought I was crazy when I started having these episodes of my eyes looking upwards almost to the point of going to the back of my head. It always started in the evening and would last about 15-45 mins. I would get intense anxiety attacks with it because no matter how hard I tried to avert my gaze, I just couldn't stop looking upwards. Everyone thought I was just freaking out. I have been on several medications that caused this: abilify, zyprexa, and haldol. You are the first person I've ever heard of that has had this happen as well. It is so scary when it happens and no one understands that I genuinely cannot look down when this happens. Thank you for posting this video.
I’m so glad it was able to help you. I couldn’t find any resources online when it was happening to me, so I thought it would be good to change that! Hopefully you can stop it from happening now that you know what it is.
@adammccoy1 This would be quite an odd choice of a condition to fake or malinger as it is rare and not understood by doctors or friends/family/coworkers. Antipsychotic medications are a cause of the condition, so it is possible the person also has a mental illness, but this is not a reason to suggest that a person is faking it. I would recommend believing the person and encouraging them to seek a diagnosis and treatment so that the condition/symptoms can hopefully stop negatively impacting life functions such as work.
You are an incredible woman, who helps people like us understand and learn. I want you to keep strong never loose hope, and i promise you, i will be the best doctor i can be, for people like you, I owe my degree and my education . Please accept my respects and love. I honor you for such a kind act. You are a hero!!
Aww thank you so much. This means so much to me. The fact that you're on here trying to learn more shows me that you're going to be an awesome doctor that tries to learn more for your patients.
This is the most accurate video to my episodes, I’ve had it for about a year now from medication and it hasn’t gone away. I first thought they were seizures so I went to the ER and they told me that’s what it is. When I closed my eyes I kept saying my eyes were “vibrating”. Thank you for sharing!! Glad I’m not alone
This! I had a Compazine/Reglan dose in the ER almost 2 years ago, have had muscle jerks since then, and have been having OC for a couple of months now.
Sorry you're going through it too, but I'm glad I could help you feel less alone :) Mine was also called a seizure once in the ER, but it was dystonia of arm, leg, and face instead of my eyes that time.
Oh my God! I have the same thing, and it happens for me EVERY SINGLE DAY! I am in tears! Glad I am not alone! Thanks for the video, Whitney! God bless you!
For 17 years I’ve been using antipsychotic medicine, mainly Olanzapine. My two younger siblings also use similar neuroleptic medicine, but only more recently. My daily regimen consists of Olanzapine evening. Included is 2.5mg Procyclidine morning and 2.5mg lunch. + Lorazepam 0.25mg morning and 0.25mg lunch. My siblings and I experienced OGC symptoms, with the intensity, crisis duration and frequency, directly proportional to the dose of antipsychotic medicine. They no longer require the adjunct medicines, but I require the Procyclidine and Lorazepam daily due to OGC/dystonic reaction to Olanzapine. For the past 4 years I no longer experience any crises with Olanzapine together with both Procyclidine and Lorazepam.
Thank you so much for making this video I suffered it too from the old injection hopefully my new drug will keep in production cant go back to that and no one talks about how negative your mind gets awful
Crazy and very scary stuff when you first see this. But this appears exactly like what my son has. (Local Doctors were not of much help.) I will show them the video of my son and your video. Thank you so much and may God bless you.
Mark Nelson I’m glad it helped you! I would definitely provide information on it from a medical source since my video is not done by a doctor. I hope they’re able to help your son. Has Benadryl helped him?
So glad I found this. I've a student who has been having these "fits" in class. He's on meds for ADHD. I'm sending this to his parents. I think he needs to change medication or take a drug holiday.
I had this really badly for about a year back in 2013 from taking risperidone and they put me on procyclidine but no matter how much they increased the dose, my eye rolling 'looking up' kept getting worse. Ended up being taken off the risperidone and aripiprazole combo and it cleared the problem right up. On quetiapine now. I hope you're feeling much better i know how scary this feels and how horribly painful it is. My doctor never explained what oculogyric crisis is and he never explained tardive dystonia or tardive dyskinesia, I have suffered for with restless legs too as its a side effect of my quetiapine. I hope you're much better now and on medication that works best for you ❤️
Omg omg the first time it happened me I get very much anxiety because I thought wtf is this. Its happen to me when I take more than 1 risperidone during the day. Its so scary and I dont want nobody to see me in those conditions bc will think im getting crazy
I had it really badly in 2013, it was caused by risperidone and aripiprazole. Procyclidine pills helped calm it down at first but I found it kept getting more and more severe no matter how much we increased my procyclidine. Ended up coming off of risperidone and aripiprazole and suddenly the awful eye rollings topped. I'm on quetiapine now and the only tardive or bodily side effects I get with this is exhaustion and really restless legs
Girl you are lucky to only have this part of a dystonic reaction! Not to diminish it in any way because I know exactly what you are going threw. Me My eyes go, my mouth opens as far as it possibly can, my head deviates to the right as far as it possibly can. and my toung sticks all the way out of my mouth and fills my already locked wide open jaw! I would give any thing for it to just effect my eyes! The whole head going hurts intensely! I feel for you I do. No one should ever have to go threw this it truly sucks...
When I reacted to Reglan, my left leg, arm, cheek, and throat were twitching & spasming, making it hard to breathe amongst other things. This video was meant to educate about oculogyric crisis, but I’ve definitely experienced other aspects of a dystonic reaction.
It is really terrible, i started feeling this after taking haloperidol, but my eyes are just running very fast and I feel alarm, I am becoming very anxious, my eyelids are shaking, I can’t feel any pleasure with this, all I want is to go sleep, because it goes away after I sleep, but this is a problem, it is hard to sleep with this, because I want to walk from alarm, i was in a hospital two times because of this, doctors don’t know what it is, this year was very hard to me. Now I am taking sertindole and it goes away.
The same thing happens to me, with the added tilting of my head al the way to the back, it feels like hell when you can't control your head and eyes like that.
It would really help for the doctors to be more aware of how horrible this drug is it nearly killed me!!! Do not give this to anyone for any reason ever !
@@jamielauro2623 keep in mind everyone reacts to substance differently. a drug doesn't lose its merit just because you had a bad reaction to it. people have bad reactions to every substance whether it be caffeine, risperidone, Zoloft, alcohol or Benadryl it really doesn't matter everyone's brain chemistry is different. but i understand where you are coming from lmao i was screaming in agony when i was having a dystonic reaction it felt like someone was stabbing my jaw with a screw driver on risperidone.
This happens to me, it happens when I am in lights and if I concentrate at something like reading, drawing/painting, looking at my phone for too long or television or other portable gaming consoles. I stay in the dark in the afternoons so I wouldn’t get it. It is annoying and painful 😓 😖 😣
Abilify did it to me too...interesting. I don't think it's common with Abilify like it is with medications like Reglan. I stopped Abilify when it happened too. I am on Remeron now, which has not caused it thankfully.
Abilify did this to me too, i was 13 and im still only 14 now and off of all my old medicines but even now it terrifies me to think about how it made me feel
@@emily8311 Wow, another with Abilify. It was hard for me to find as many case studies or documentation with Abilify, but it seems that maybe it's more common with Abilify than I thought/the online search showed.
Late to the party but yep abilify here too. I'm so glad I found this video. I'm gonna stop taking it today. Everyone thinks I'm crazy when I try to explain what's happening when I'm having an episode.
This is going to be a book lol... I've already commented on this video but I just remembered this and felt the need to come back on here and say PSA : if you're taking Abilify, I highly recommend you get off of that crap asap. I felt like an absolute crazy person. I tried to explain my eye issues to my husband and mom and they pretty much laughed it off like I was making it up. It made me break down in tears so many times and borderline suicidal because I felt like I was going to suffer for the rest of my life. I teared up talking to my doctor about it because I didn't even know how to explain it to someone that hasn't experienced it and he just told me it was probably lack of sleep or stress. If I hadn't come across this video, I would not have known Abilify was connected and wouldn't have known to stop taking it. I had one or two more episodes within the month after I stopped and it hasn't happened since. When I googled my symptoms, I couldn't even find anything and it made me feel even crazier like I had some unknown issue that suddenly developed. I'm so so so thankful for this video and I just wanted to put it out there that if your eyes are drifting upward over and over and you feel insane, you are NOT alone and you are not crazy. The medications that cause this shouldn't even be allowed to be prescribed if doctors can't warn you of this and don't even know what you're talking about when you tell them what's going on.
Thank you for coming back to share this! It means so much to me that me sharing this can make a difference in some people’s lives. I’m glad that you were able to find the cause of your symptoms and get improvement! I think the main reason we were able to identify the dystonic reaction even though it was ability was because I had the reaction to other meds before and knew what was going on-just to a new med. For lots of people it will be a first, and thus, harder to recognize.
Thankyou so much for this, im having fits aswell just like yours and I hope my doctor will change his mind about me having to take medications. I'm taking paliperidone as an injection
How long have you been having these episodes? Are you still taking the meds? I have general dystonia due to psych meds which I took briefly and did not need. Symptoms started in one body part and spread to the whole body.
My first time I had a dystonic reaction was 6 years ago. I no longer take that medication, but I keep getting it to other medications too. My reaction was full body in reaction to Reglan, but only my eyes with Compazine. Did yours go away when you stopped the medication?
I have the same problems & lately I was wondering why my eyes going up against my will & luckily I learned it from UA-cam videos since my doctors didn’t tell me about it & I also have neck movements against my will & I even had difficulty of breathings for almost 8 months every day & I had chocking problems too & all is from Dystonia sickness sadly which comes after taking psychiatric medications for long years like Haldol & Abilify etc. & it can be deadly in cases of choking times mine was worse since some will only have the eye problems & I even have tongue movements against my will but none of my doctors told me the name of the sickness & treatment is Benadryl medicine which is also allergy medicine.
Amen!! Just found out today about Oculogyric Crisis after my daughter was having what I thought were Seizures. I believe God has healed my daughter. She’s been off all meds since Mar 19
I didn’t need to take Haldol & Abilify medications but doctors prescribed it anyway & I took Haldol for 10 years & Abilify for 7 months without knowing about the side effects unless I won’t accept to take it since I was okay when I was not taking it but they convinced me to take it & now I’m suffering so bad & they’re not telling me that I have Dystonia sickness & I only found out about it today even though from last year I’m suffering.
I had it two days ago. Emergency made me diazepam, phenazepam (popular and powerful benzodiazepin from soviet Russia) and akineton. I know, that cyclodol helps too
I have the same thing happening to me too but it’s a little different. Sometimes my eyes go up slowly over and over again it’s slightly painful but more like pressure in my eyes. It can last for many hours most of the time and it happens almost everyday. As soon as I feel a lot of pressure in my eyes I know it’s gonna happen again. What should I do?
Hey! Hey, Whitney! Tell me please, how do you manage to stop it when it happens? For me works 2-3 pillows of Mendilex and I am O.K. I ve started to get this horrible happenings every single day since 17th of June 2021. July 20 I am going to the clinic, hope for medication change. There are "good" days for me, once in a blue moon... Anyway, I hope you will reply :) God bless you, Whitney, wish you good luck and perfect health!
I take Benadryl and Cogentin. Benadryl is typically the first thing I try since it is over the counter. I hope your trip to the clinic goes well. Sometimes I get Benadryl preventatively when they have to give me a med that is at risk of causing it.
@@whitneycarter3721 I looked it up in my car and it says it could be from risperidone and I’m on that, I’m trying to get off my medication anyways so Ill just kill 2 birds with one stone. It freaked me out when it first happened, it’s been happening for a couple of weeks now. Thanks for reply
Hola mi niña tiene 4 años necesito ayuda yo vivo en mexico y hace dos dia tiene este episodio casi todo el dia ,ella no ha tomado ningun medicamento alguien podria decirme si hay cura?
This happened to me once and the doctors were freaking out because they had no idea what was happening, but one nurse knew what dystonic reactions were and gave me Benadryl, I fell asleep and I woke up and my eyes were okay!! I’m not totally sure if your reaction was the same as mine, or if you’ve already tried that, but just in case you haven’t!!
I’m so glad the nurse was able to recognize it and treat it! Yes, Benadryl is the main treatment for me as well (then stopping the trigger/medication and also Cogentin).
Yàssyca Brenda I don’t know what Akineton is. You should ask your doctor as I am not one and only know my personal experiences. Many psychiatric (and anxiety) meds cause it. I believe Benadryl should help no matter what as it floods the system with dopamine, but again - not a doctor.
Sorry for my english. İ have this too. İ guess if i drink much coffee it can trigger this condition. İm taking seroquel and risperidone these meds are the main cause i guess. My psychiatrist prescribed akineton but still its here.
@@whitneycarter3721 I dont know about other drinks that contain caffeine but it could be yes. I will soon go to a neurologist and see what the cause is.
Wtf i have sorta kinda same thing happening to me for 4 years now. Still figuring out why this is. I have so many questions now....with me it looks kinda different then yours. With me it are fast movements. Up and to the middle. Down and to the middle. Left and or right and then back to the middle. And very sometimes i roll with my eyes 1 round. Is that also oculogyric crisis? You also have moments that it gets worse and sometimes different? I also hear you say that you see blobs...what you mean with this? I see striped and my vision shakes, particulairly borders do shake, like the border on the tv. Borders around doors. Is this the same? Now im curious.
I also see when you close your eyes. Your eyelids are shaking. I have exactly the same thing! Whats that called!? If its my medication im gonna be sooooo angry. Im walking with this for years now and speech problems, muscle problems, memory issues. I asked the doctors for years. Whats wrong with me!? They sended me from door to door. They didnt know anything.....and now i see this. Sooo relateable.
Well first, I'm not a doctor, nor have I seen your eye movements in person or in a video, but to me, it doesn't sound like oculogyric crisis from your description. Some other eye movement disorders that were considered in diagnosis for me were nystagmus and opsoclonus. I actually am diagnosed with nystagmus too now. In nystagmus, your eyes can move in multiple directions based on the one you have. I have down-beat and gaze-evoked nystagmus. I think I'm gonna make a video on nystagmus too at some point. By blobs I mean that everything was very blurry where I could not see any details on objects. Which medication are you suspecting? In the side effects list (including rare side effects), does it have any eye movement disorders listed? While I'm sorry that you're going through something similar, I'm glad my video was helpful and was relatable in that you know you're not alone in this.
@@whitneycarter3721 super thanks for your reply. Yes it has an eye movement disorder side effect and many muscle side effects in the medicine. So i suspect that. But i get so little much mg from it. So im not sure if it is that. Did the nystagmus come later? For no reason?
@@whitneycarter3721 im suspecting fluanxol. Because i also get trouble with language and speaking lately. But im not sure though. First i was on this medication for years without any side effect. Thats why im not sure that this is it. At the 18th i go to a neurologist but i think they wont find anything again. Did the eye movement disorder made you freakin out? Im afraid that at some point in the future im not able to look normal out of my eyes anymore. And scared of getting blind. On the internet theres not much to find about my symptoms. That kinda scares me too. What do you do to deal with the eye movements?
thank you for posting this. i have been dealing with this for months now and didnt know what it was called. what kind of doctor do you see for this? a neurologist? and does benadryl really help? how long does it take to stop it? i suffer from this at work and dont know how to make it stop.
Heath Quiel I’m so glad it could help you! Yes, Benadryl really helps! Depending on what’s causing it, I see my neurologist and my psychiatrist. Stopping the offending agent (medication) is so important (if there is one). It was happening to me at work too. Although Benadryl is not a long term fix, I works temporarily. Since I take it so often during the day, it doesn’t really make me tired anymore.
Whitney Carter Thank you for the reply. I discovered the medication thats causing it and stopped today, i also noticed it can be brought on by anxiety, did you notice this too?
Heath Quiel mine never came on because of anxiety, but it’s important to find triggers because then you can try to stop it! Hope that stopping the medication helped!
@@whitneycarter3721 I stop taking olanzapine and taking quetiapine and clonazepam and it haven't happened for 8 days so far so I believe I'm good. Plus how long did you have oculogyric crisis for like months or years? I had it for like 8 months
It depends on the cause. For me, the main things that helped were stopping the medication that triggered it and using Benadryl or Cogentin symptomatically. It still happens sometimes though. I hope your doctors can figure out how to help yours soon!
Hey hey hey! How's it's goin'? I ve got medication change and it's allright, my crisis happens not so frequently finally! Whitney! How are you? Are u allright? Tell me please. God bless you!
@@3manifold Ahhhm, around a 1 year. But honestly, Crysis ve started shortly after I got out of Psychiatric Hospital =) I ve got periods it was not so terrible, NOT EVERY SINGLE DAY! In the period of mid-end of March I ve got Crysis EVERY SINGLE DAY. It is horrible! =) And what about you?
Thanks for the video, Whitney! I am SOOO upset with my Oculogyric Crisis, it happens EVERY SINGLE DAY for me. I dont know what to do! Btw, I was on similar medications for a LOOONG TIME...Tell me, are there things OVER with you? Is it O.K now? Tell me please. God Bless You!
Hi Michelle, it is a lot better now but I do occasionally get it and I'm not sure why. Always connected to a trigger-just not a medication change anymore. I hope they can come up with a plan to help yours soon because getting it so frequently is miserable.
@@whitneycarter3721 O.K, thanks for your reply! Tell me please, how do you manage to stop it when it happens? For me 2-3 pillows of Mendilex and I am allright. I ve started to get this horrible happenings every single day from 17th of June 2021. I am also on other medications :( God Bless You!
Are you better now? I have general Dystonia as a result of several conditions ( Drs theory)... It's just getting really bad ...I have a UA-cam channel if you want to hang out there 💛
Thanks for sharing this, really helps people understand. I have gotten these as a side effect of medications (which I thankfully don't have to take), a reaction called NMS, Neuroleptic Malignant Syndrome.
Sorry you reacted too, but I'm glad you were able to stop the medication. Hopefully your symptoms improved after that. I have a friend who got NMS. I never had a fever, but extrapyramidal symptoms can all look similar sometimes.
Thank you❣️❣️❣️ Been worried and looking for answers to my 24 yr. old sons eye episodes. Thank you❤️💯🇨🇦🇨🇿 PS. To others searchingfor answers...a previous commenter mentioned AMBILIFY; my son is administered this in monthly shots. Bad stuff👹🤢☠️
Hey I have this. How did you get better? It's almost as if I go blind for a hour. I can't drive because of the stupid eye disorder. My doctors have not helped me.
I’m sorry to hear that your doctors have not helped you. Mine did improve with treatments. I have another eye movement disorder that complicates driving too, but when I’m not in an “episode,” I can see like anyone else. Have you received an official diagnosis and they just can’t figure out how to treat it properly or have they not been able to figure out what’s going on?
My eyes rapidly moves away from my point of were I focus on. This lasts for less than a second its very quick and goes away very quickly. Do I have this disease?
Tengo el mismo problema que la chica del video, I speak spanish, sorry. Muchas gracias por tu video, yo tomo antipsicoticos y estas pastillas me están causando este problema espero que tenga solución no quiero quedar así para siempre 😞.
Me pasa igual, pero yo dejaba por completo los antipsicoticos y me dejaba de pasar, vos que hiciste? Ya no te anda pasando? Yo este año me entere lo que era, antes me habia arruinado la vida desde los 16 años
Is Abilify one of those "antidepressant" medications that's really just a repurposed antipsychotic med, 'cuz the drug companies need a bigger market share?
I'm sorry but my son has this and I'm barely learning about about thiscan you please tell me if it's painful because it seems to be accompanied by pain?
Hi Monica, yes, mine is definitely associated with discomfort. I'm not sure if it is the same for everyone, but I think the muscles in the eye are not used to moving so far and frequently the way they do during this.
I am a physio doing a bit of further reading on differential diagnosis of parkinsons and saw this and was surprised. Its really sad and i definitely hurt with you seeing this happy. Its extremely disabling as you cannot trust your eyes. I hope you are able to stay safe and have stretegies to get through the event without having to stay in bed?
I don’t know if there is any data on it with people susceptible to oculogyric crisis or dystonic reactions, but personally, I got the Moderna vaccine and it did not affect my eyes at all.
its scary panic attack with fobia or fear its happen to me every 3days which equal approximatly 60 times or more this disease or experiant need the persion to be wise and you must changethe MD revery 3 month until you find the MD what you was looking for thanks u brothers
Oh my god everyone thought I was crazy when I started having these episodes of my eyes looking upwards almost to the point of going to the back of my head. It always started in the evening and would last about 15-45 mins. I would get intense anxiety attacks with it because no matter how hard I tried to avert my gaze, I just couldn't stop looking upwards. Everyone thought I was just freaking out. I have been on several medications that caused this: abilify, zyprexa, and haldol. You are the first person I've ever heard of that has had this happen as well. It is so scary when it happens and no one understands that I genuinely cannot look down when this happens. Thank you for posting this video.
I’m so glad it was able to help you. I couldn’t find any resources online when it was happening to me, so I thought it would be good to change that! Hopefully you can stop it from happening now that you know what it is.
How to differentiate it from malingering, no pun intended
@adammccoy1 This would be quite an odd choice of a condition to fake or malinger as it is rare and not understood by doctors or friends/family/coworkers. Antipsychotic medications are a cause of the condition, so it is possible the person also has a mental illness, but this is not a reason to suggest that a person is faking it. I would recommend believing the person and encouraging them to seek a diagnosis and treatment so that the condition/symptoms can hopefully stop negatively impacting life functions such as work.
Xanax helps
I'm learning about this condition in nursing school. I just want to say thank you for sharing.
You are an incredible woman, who helps people like us understand and learn. I want you to keep strong never loose hope, and i promise you, i will be the best doctor i can be, for people like you, I owe my degree and my education . Please accept my respects and love. I honor you for such a kind act. You are a hero!!
Aww thank you so much. This means so much to me. The fact that you're on here trying to learn more shows me that you're going to be an awesome doctor that tries to learn more for your patients.
This is the most accurate video to my episodes, I’ve had it for about a year now from medication and it hasn’t gone away. I first thought they were seizures so I went to the ER and they told me that’s what it is. When I closed my eyes I kept saying my eyes were “vibrating”. Thank you for sharing!! Glad I’m not alone
This! I had a Compazine/Reglan dose in the ER almost 2 years ago, have had muscle jerks since then, and have been having OC for a couple of months now.
@@katielynn1278 they’re really so uncomfortable. I guess Benadryl helps!
@@katielynn1278 Have they been able to find anything to help treat your dystonic reaction & oculogyric crisis?
Sorry you're going through it too, but I'm glad I could help you feel less alone :) Mine was also called a seizure once in the ER, but it was dystonia of arm, leg, and face instead of my eyes that time.
Oh my God! I have the same thing, and it happens for me EVERY SINGLE DAY! I am in tears! Glad I am not alone! Thanks for the video, Whitney! God bless you!
For 17 years I’ve been using antipsychotic medicine, mainly Olanzapine. My two younger siblings also use similar neuroleptic medicine, but only more recently.
My daily regimen consists of Olanzapine evening. Included is 2.5mg Procyclidine morning and 2.5mg lunch. + Lorazepam 0.25mg morning and 0.25mg lunch.
My siblings and I experienced OGC symptoms, with the intensity, crisis duration and frequency, directly proportional to the dose of antipsychotic medicine. They no longer require the adjunct medicines, but I require the Procyclidine and Lorazepam daily due to OGC/dystonic reaction to Olanzapine. For the past 4 years I no longer experience any crises with Olanzapine together with both Procyclidine and Lorazepam.
I suffer from this and it is horrible...I cannot function nor able to do anything while my eyes are like ghis
Thank you so much for making this video I suffered it too from the old injection hopefully my new drug will keep in production cant go back to that and no one talks about how negative your mind gets awful
Crazy and very scary stuff when you first see this. But this appears exactly like what my son has. (Local Doctors were not of much help.) I will show them the video of my son and your video. Thank you so much and may God bless you.
Mark Nelson I’m glad it helped you! I would definitely provide information on it from a medical source since my video is not done by a doctor. I hope they’re able to help your son. Has Benadryl helped him?
He has only had this 3 times We are decreasing meds as his Doc suggested and have the Benadryl as a backup plan.
So glad I found this. I've a student who has been having these "fits" in class. He's on meds for ADHD. I'm sending this to his parents. I think he needs to change medication or take a drug holiday.
Marie Katherine I hope he’s able to get help and that they can stop whatever is going on with him!
The problem today is people think the answer for every kid being hyper is to pump them full of drugs 🤦🏻♂️
I had this really badly for about a year back in 2013 from taking risperidone and they put me on procyclidine but no matter how much they increased the dose, my eye rolling 'looking up' kept getting worse.
Ended up being taken off the risperidone and aripiprazole combo and it cleared the problem right up.
On quetiapine now.
I hope you're feeling much better i know how scary this feels and how horribly painful it is. My doctor never explained what oculogyric crisis is and he never explained tardive dystonia or tardive dyskinesia, I have suffered for with restless legs too as its a side effect of my quetiapine. I hope you're much better now and on medication that works best for you ❤️
Omg omg the first time it happened me I get very much anxiety because I thought wtf is this.
Its happen to me when I take more than 1 risperidone during the day. Its so scary and I dont want nobody to see me in those conditions bc will think im getting crazy
Are u okay now? I take paliperidone and this is causing me to look up aswell@fatbatman6062
I know someone who suffered from this many years. After the person stopped taking a medication (abily...) it took some months and then it was GONE!
Thank you !!! For sharing went to the ER today w my daughter she’s better now but I had never heard of this
I had it really badly in 2013, it was caused by risperidone and aripiprazole. Procyclidine pills helped calm it down at first but I found it kept getting more and more severe no matter how much we increased my procyclidine.
Ended up coming off of risperidone and aripiprazole and suddenly the awful eye rollings topped. I'm on quetiapine now and the only tardive or bodily side effects I get with this is exhaustion and really restless legs
Girl you are lucky to only have this part of a dystonic reaction! Not to diminish it in any way because I know exactly what you are going threw. Me My eyes go, my mouth opens as far as it possibly can, my head deviates to the right as far as it possibly can. and my toung sticks all the way out of my mouth and fills my already locked wide open jaw! I would give any thing for it to just effect my eyes! The whole head going hurts intensely! I feel for you I do. No one should ever have to go threw this it truly sucks...
When I reacted to Reglan, my left leg, arm, cheek, and throat were twitching & spasming, making it hard to breathe amongst other things. This video was meant to educate about oculogyric crisis, but I’ve definitely experienced other aspects of a dystonic reaction.
A mí me agarra eso y en los ojos, tenía miedo que un día me agarre estando sola y me pierda, no podía ver practicamente
Thank you! From a final year medical student in New Zealand
FINALLY FOUND OUT WHAT ITS CALLED.
Thank you for sharing. It's very important for medicine students and others physicians with deficient training.
It is really terrible, i started feeling this after taking haloperidol, but my eyes are just running very fast and I feel alarm, I am becoming very anxious, my eyelids are shaking, I can’t feel any pleasure with this, all I want is to go sleep, because it goes away after I sleep, but this is a problem, it is hard to sleep with this, because I want to walk from alarm, i was in a hospital two times because of this, doctors don’t know what it is, this year was very hard to me. Now I am taking sertindole and it goes away.
The same thing happens to me, with the added tilting of my head al the way to the back, it feels like hell when you can't control your head and eyes like that.
I'm studying nursing and this really helps a lot, thank you so much for sharing your video!
It would really help for the doctors to be more aware of how horrible this drug is it nearly killed me!!! Do not give this to anyone for any reason ever !
@@jamielauro2623 keep in mind everyone reacts to substance differently. a drug doesn't lose its merit just because you had a bad reaction to it. people have bad reactions to every substance whether it be caffeine, risperidone, Zoloft, alcohol or Benadryl it really doesn't matter everyone's brain chemistry is different. but i understand where you are coming from lmao i was screaming in agony when i was having a dystonic reaction it felt like someone was stabbing my jaw with a screw driver on risperidone.
This is great. Thank you for uploading!
This happens to me, it happens when I am in lights and if I concentrate at something like reading, drawing/painting, looking at my phone for too long or television or other portable gaming consoles. I stay in the dark in the afternoons so I wouldn’t get it. It is annoying and painful 😓 😖 😣
Thanks for sharing. This video is very informative. Lots of prayers for you
abilify did this to me, I hate it :( I'm not going to take it anymore
Abilify did it to me too...interesting. I don't think it's common with Abilify like it is with medications like Reglan. I stopped Abilify when it happened too. I am on Remeron now, which has not caused it thankfully.
Abilify did this to me too, i was 13 and im still only 14 now and off of all my old medicines but even now it terrifies me to think about how it made me feel
@@emily8311 Wow, another with Abilify. It was hard for me to find as many case studies or documentation with Abilify, but it seems that maybe it's more common with Abilify than I thought/the online search showed.
Late to the party but yep abilify here too. I'm so glad I found this video. I'm gonna stop taking it today. Everyone thinks I'm crazy when I try to explain what's happening when I'm having an episode.
This is going to be a book lol...
I've already commented on this video but I just remembered this and felt the need to come back on here and say PSA : if you're taking Abilify, I highly recommend you get off of that crap asap. I felt like an absolute crazy person. I tried to explain my eye issues to my husband and mom and they pretty much laughed it off like I was making it up. It made me break down in tears so many times and borderline suicidal because I felt like I was going to suffer for the rest of my life. I teared up talking to my doctor about it because I didn't even know how to explain it to someone that hasn't experienced it and he just told me it was probably lack of sleep or stress. If I hadn't come across this video, I would not have known Abilify was connected and wouldn't have known to stop taking it. I had one or two more episodes within the month after I stopped and it hasn't happened since. When I googled my symptoms, I couldn't even find anything and it made me feel even crazier like I had some unknown issue that suddenly developed. I'm so so so thankful for this video and I just wanted to put it out there that if your eyes are drifting upward over and over and you feel insane, you are NOT alone and you are not crazy. The medications that cause this shouldn't even be allowed to be prescribed if doctors can't warn you of this and don't even know what you're talking about when you tell them what's going on.
Thank you for coming back to share this! It means so much to me that me sharing this can make a difference in some people’s lives. I’m glad that you were able to find the cause of your symptoms and get improvement! I think the main reason we were able to identify the dystonic reaction even though it was ability was because I had the reaction to other meds before and knew what was going on-just to a new med. For lots of people it will be a first, and thus, harder to recognize.
Thankyou so much for this, im having fits aswell just like yours and I hope my doctor will change his mind about me having to take medications. I'm taking paliperidone as an injection
How long have you been having these episodes? Are you still taking the meds? I have general dystonia due to psych meds which I took briefly and did not need. Symptoms started in one body part and spread to the whole body.
My first time I had a dystonic reaction was 6 years ago. I no longer take that medication, but I keep getting it to other medications too. My reaction was full body in reaction to Reglan, but only my eyes with Compazine. Did yours go away when you stopped the medication?
I hope you feel better side effects of anti pshcothic acute dystonia
Hope you get better by now. Hugs
Lex C thank you! I haven’t had Oculogyric crisis in a while.
Thank you so much for sharing, hope you are doing fine :) !
Thank you for sharing
very helpful! i hope you are doing good now. and if you can update with what helped you with this condition and how are you managing it currently
I have the same problems & lately I was wondering why my eyes going up against my will & luckily I learned it from UA-cam videos since my doctors didn’t tell me about it & I also have neck movements against my will & I even had difficulty of breathings for almost 8 months every day & I had chocking problems too & all is from Dystonia sickness sadly which comes after taking psychiatric medications for long years like Haldol & Abilify etc. & it can be deadly in cases of choking times mine was worse since some will only have the eye problems & I even have tongue movements against my will but none of my doctors told me the name of the sickness & treatment is Benadryl medicine which is also allergy medicine.
Thank you for posting this .. i am glad i am not alone ur vid helped me alot
I had it too. I stoped taking my meds and because God is good he healed me. Have you healed from it?
When I stopped the medication that was causing it, it went away for the most part. Still sensitive to light sometimes.
Amen!! Just found out today about Oculogyric Crisis after my daughter was having what I thought were Seizures. I believe God has healed my daughter. She’s been off all meds since Mar 19
thank you. i am neurology resident.
OMG after 7 years i thought i was the only one wow wow wow, doctors told me INDONT KNOW WHAT IS HAPPENING
I didn’t need to take Haldol & Abilify medications but doctors prescribed it anyway & I took Haldol for 10 years & Abilify for 7 months without knowing about the side effects unless I won’t accept to take it since I was okay when I was not taking it but they convinced me to take it & now I’m suffering so bad & they’re not telling me that I have Dystonia sickness & I only found out about it today even though from last year I’m suffering.
Thank you for sharing this.
I get fucked up like this yesterday because of drugs
My son is doing this but he's not on any medication :( he's 5
It happend to me several times. Very annoying. I was not able to log look at people or focus on things. 😵
Had this yesterday from metoclopramide for about an hour or 2, so annoying.
Thank you for this.
- Nurse taking extrapyramidal adverse effect modules.
Jordan Kihl I’m so glad it was helpful. I wish all nurses and doctors had to learn about it!!
Thanks for the uploading this video🙏
Thank you so much , and god bless you
this may help you, when this crisis occur, I read a book. My eyes focuses in the letters and then my eyes go down again.
Haldol did this to me when i was on it. It was embarrassing as hell ended up taking melatonin to help me sleep through it.
I had it two days ago. Emergency made me diazepam, phenazepam (popular and powerful benzodiazepin from soviet Russia) and akineton. I know, that cyclodol helps too
I'm sorry you had it, but I'm glad you were able to get treated!
Oh my sameee☹️🙁
I have the same thing happening to me too but it’s a little different. Sometimes my eyes go up slowly over and over again it’s slightly painful but more like pressure in my eyes. It can last for many hours most of the time and it happens almost everyday. As soon as I feel a lot of pressure in my eyes I know it’s gonna happen again. What should I do?
Have you seen an ophthalmologist about it? Are you able to tolerate Benadryl when it begins as a test if it will stop the movements?
I going thruw the same please pray for me
Hey! Hey, Whitney! Tell me please, how do you manage to stop it when it happens? For me works 2-3 pillows of Mendilex and I am O.K. I ve started to get this horrible happenings every single day since 17th of June 2021. July 20 I am going to the clinic, hope for medication change. There are "good" days for me, once in a blue moon... Anyway, I hope you will reply :) God bless you, Whitney, wish you good luck and perfect health!
I take Benadryl and Cogentin. Benadryl is typically the first thing I try since it is over the counter. I hope your trip to the clinic goes well. Sometimes I get Benadryl preventatively when they have to give me a med that is at risk of causing it.
This just happened to me at the gym, is this normal?
No. I’d check with your doctor if you had any medication changes recently.
@@whitneycarter3721 I looked it up in my car and it says it could be from risperidone and I’m on that, I’m trying to get off my medication anyways so Ill just kill 2 birds with one stone. It freaked me out when it first happened, it’s been happening for a couple of weeks now. Thanks for reply
Hola mi niña tiene 4 años necesito ayuda yo vivo en mexico y hace dos dia tiene este episodio casi todo el dia ,ella no ha tomado ningun medicamento alguien podria decirme si hay cura?
toma algun medicamento diario??
Thank you for sharing. I hope that you are not having these episodes any more. They seem pretty uncomfortable.
Does it hurt your eyes? My brother has it but he's autistic and I can't figure out if it hurts or what?
Yes, it is painful for me. I don’t think everyone is the same, but your eyes aren’t supposed to move like that obviously so the muscles hurt for me.
This happened to me once and the doctors were freaking out because they had no idea what was happening, but one nurse knew what dystonic reactions were and gave me Benadryl, I fell asleep and I woke up and my eyes were okay!! I’m not totally sure if your reaction was the same as mine, or if you’ve already tried that, but just in case you haven’t!!
I’m so glad the nurse was able to recognize it and treat it! Yes, Benadryl is the main treatment for me as well (then stopping the trigger/medication and also Cogentin).
saaaaamee
If these is caused by anxiety and not for medication, akineton or benadryl works on it or not ?
Yàssyca Brenda I don’t know what Akineton is. You should ask your doctor as I am not one and only know my personal experiences. Many psychiatric (and anxiety) meds cause it. I believe Benadryl should help no matter what as it floods the system with dopamine, but again - not a doctor.
I get that the third day after my Clopixol shot every time.
Sorry for my english. İ have this too. İ guess if i drink much coffee it can trigger this condition. İm taking seroquel and risperidone these meds are the main cause i guess. My psychiatrist prescribed akineton but still its here.
Hi! Your english is great. I've taken those meds too, but coffee is interesting. Do other forms of caffeine trigger it as well?
@@whitneycarter3721 I dont know about other drinks that contain caffeine but it could be yes. I will soon go to a neurologist and see what the cause is.
Wtf i have sorta kinda same thing happening to me for 4 years now. Still figuring out why this is. I have so many questions now....with me it looks kinda different then yours. With me it are fast movements. Up and to the middle. Down and to the middle. Left and or right and then back to the middle. And very sometimes i roll with my eyes 1 round. Is that also oculogyric crisis? You also have moments that it gets worse and sometimes different? I also hear you say that you see blobs...what you mean with this? I see striped and my vision shakes, particulairly borders do shake, like the border on the tv. Borders around doors. Is this the same? Now im curious.
I also see when you close your eyes. Your eyelids are shaking. I have exactly the same thing! Whats that called!? If its my medication im gonna be sooooo angry. Im walking with this for years now and speech problems, muscle problems, memory issues. I asked the doctors for years. Whats wrong with me!? They sended me from door to door. They didnt know anything.....and now i see this. Sooo relateable.
Well first, I'm not a doctor, nor have I seen your eye movements in person or in a video, but to me, it doesn't sound like oculogyric crisis from your description. Some other eye movement disorders that were considered in diagnosis for me were nystagmus and opsoclonus. I actually am diagnosed with nystagmus too now. In nystagmus, your eyes can move in multiple directions based on the one you have. I have down-beat and gaze-evoked nystagmus. I think I'm gonna make a video on nystagmus too at some point. By blobs I mean that everything was very blurry where I could not see any details on objects. Which medication are you suspecting? In the side effects list (including rare side effects), does it have any eye movement disorders listed? While I'm sorry that you're going through something similar, I'm glad my video was helpful and was relatable in that you know you're not alone in this.
@@whitneycarter3721 super thanks for your reply. Yes it has an eye movement disorder side effect and many muscle side effects in the medicine. So i suspect that. But i get so little much mg from it. So im not sure if it is that. Did the nystagmus come later? For no reason?
@@whitneycarter3721 im suspecting fluanxol. Because i also get trouble with language and speaking lately. But im not sure though. First i was on this medication for years without any side effect. Thats why im not sure that this is it. At the 18th i go to a neurologist but i think they wont find anything again. Did the eye movement disorder made you freakin out? Im afraid that at some point in the future im not able to look normal out of my eyes anymore. And scared of getting blind. On the internet theres not much to find about my symptoms. That kinda scares me too. What do you do to deal with the eye movements?
@@whitneycarter3721 i know your not a doctor. But you probably know more about this problem then me.
thank you for posting this. i have been dealing with this for months now and didnt know what it was called. what kind of doctor do you see for this? a neurologist? and does benadryl really help? how long does it take to stop it? i suffer from this at work and dont know how to make it stop.
Heath Quiel I’m so glad it could help you! Yes, Benadryl really helps! Depending on what’s causing it, I see my neurologist and my psychiatrist. Stopping the offending agent (medication) is so important (if there is one). It was happening to me at work too. Although Benadryl is not a long term fix, I works temporarily. Since I take it so often during the day, it doesn’t really make me tired anymore.
Whitney Carter Thank you for the reply. I discovered the medication thats causing it and stopped today, i also noticed it can be brought on by anxiety, did you notice this too?
Heath Quiel mine never came on because of anxiety, but it’s important to find triggers because then you can try to stop it! Hope that stopping the medication helped!
Zeynep Lara Öztürk depending on the half life of the medication
This can happen for anxiety? In these case akineton or benadryl works for It ornot ?
Will oculogyric crisis stop after I stop taking the meds?
It did for me and most people I’ve talked to, but I think it doesn’t for some people.
@@whitneycarter3721 it doesnt work for some people because it may be a medical condition? It started after I started taking olanzapine
tol wok no, I think it’s just because it ends up being permanent even after stopping the med unfortunately.
@@whitneycarter3721 I stop taking olanzapine and taking quetiapine and clonazepam and it haven't happened for 8 days so far so I believe I'm good. Plus how long did you have oculogyric crisis for like months or years? I had it for like 8 months
I almost shit myself when I had this
i want to know whats the cure it happened with me several times that
eyes problem
It depends on the cause. For me, the main things that helped were stopping the medication that triggered it and using Benadryl or Cogentin symptomatically. It still happens sometimes though. I hope your doctors can figure out how to help yours soon!
@@whitneycarter3721 thank you
побочный эффект пролонгированных нейролептиков?
yes, it can be caused by antipsychotics
How many mg of abilify are/did you consume everyday?
Hey hey hey! How's it's goin'? I ve got medication change and it's allright, my crisis happens not so frequently finally! Whitney! How are you? Are u allright? Tell me please. God bless you!
Hi
@@3manifold Hello! How are you? Thanks for your reply! Do you ve got an Occlogyric Crisis too?
@@michellewhite777 how long were you on your causation drug before develop oculogyric crisis
@@3manifold Ahhhm, around a 1 year. But honestly, Crysis ve started shortly after I got out of Psychiatric Hospital =) I ve got periods it was not so terrible, NOT EVERY SINGLE DAY! In the period of mid-end of March I ve got Crysis EVERY SINGLE DAY. It is horrible! =) And what about you?
@@michellewhite777 uhmm,...... They said people get acute dystonia early in the treatment (1-4 days)
Como chama isso no Brasil
crise oculogírica?
reação distônica?
Crisi oculogirica tem tratamento
Has this gone away from you permanently?
Jaste _ No. My eyes are still susceptible to it with bright lights or sleep deprivation, but it is significantly improved.
When you say significantly improved do you mean that it’s a lot easier to control? Or it takes a lot for it to happen?
Cause this is happening to me and hearing that it hasn’t left from you is disturbing me.
Jaste _ it happens significantly less. Maybe twice a month. I don’t take any medication to help it unless it happens.
Whitney Carter That’s good. I think about when you have to work and take care of business, it completely gets in the way of that.
Thanks for the video, Whitney! I am SOOO upset with my Oculogyric Crisis, it happens EVERY SINGLE DAY for me. I dont know what to do! Btw, I was on similar medications for a LOOONG TIME...Tell me, are there things OVER with you? Is it O.K now? Tell me please. God Bless You!
Hi Michelle, it is a lot better now but I do occasionally get it and I'm not sure why. Always connected to a trigger-just not a medication change anymore. I hope they can come up with a plan to help yours soon because getting it so frequently is miserable.
@@whitneycarter3721 O.K, thanks for your reply! Tell me please, how do you manage to stop it when it happens? For me 2-3 pillows of Mendilex and I am allright. I ve started to get this horrible happenings every single day from 17th of June 2021. I am also on other medications :( God Bless You!
I got same shit. Sometimes it coming to me. I loose my job cause of it.
Pavlo Sakhar I’m so sorry about your job. It sucks.
Human body is so weak!🤷♂️
How long did it take for it to get better im going through bad anxiety rn
Usually within a week of stopping the medication
Are you better now? I have general Dystonia as a result of several conditions ( Drs theory)...
It's just getting really bad
...I have a UA-cam channel if you want to hang out there 💛
does this have a cure? or it coud take years
I'm having the exact same thing happening to me now
Shacourtney Johns I hope they figure out how to get it better soon! Let me know what works for you.
Isso tem cura
I hate psychiatry all it does it damage. I have this shit too and my psychiatrists just prescribe even more medication with worse side effects
I hope your oculogyric crises will be gone forever. I'm also suffering oculogyric crises. I regret taking antipsychotics.
Take benztropine or diphenhydramine
In the video, I mention that these are the two medications I take
Thanks for sharing this, really helps people understand. I have gotten these as a side effect of medications (which I thankfully don't have to take), a reaction called NMS, Neuroleptic Malignant Syndrome.
Sorry you reacted too, but I'm glad you were able to stop the medication. Hopefully your symptoms improved after that. I have a friend who got NMS. I never had a fever, but extrapyramidal symptoms can all look similar sometimes.
Benadryl, and a weighted sleep eyemask greatly relieve these episodes. The weighted eyemask helps your eyelids stay still.
See a neurologist.
Oceania Glimmerson I haven’t tried a weighted sleep eye mask. Worth a try!
Thank you❣️❣️❣️ Been worried and looking for answers to my 24 yr. old sons eye episodes. Thank you❤️💯🇨🇦🇨🇿
PS. To others searchingfor answers...a previous commenter mentioned AMBILIFY; my son is administered this in monthly shots. Bad stuff👹🤢☠️
Hey I have this. How did you get better? It's almost as if I go blind for a hour. I can't drive because of the stupid eye disorder. My doctors have not helped me.
I’m sorry to hear that your doctors have not helped you. Mine did improve with treatments. I have another eye movement disorder that complicates driving too, but when I’m not in an “episode,” I can see like anyone else. Have you received an official diagnosis and they just can’t figure out how to treat it properly or have they not been able to figure out what’s going on?
My doctor thinks a medication change will improve things.
I had this. Abilify caused it. So awful.
Is it the same Benadryl for allergy that helps with this?
Jaste _ yes (diphenhydramine), it works by helping to balance dopamine and acetylcholine.
My eyes rapidly moves away from my point of were I focus on. This lasts for less than a second its very quick and goes away very quickly. Do I have this disease?
There are other conditions that involve eye movements such as nystagmus and opsoclonus, so you should talk to your doctor for an official diagnosis.
Involuntary UwU
Tengo el mismo problema que la chica del video, I speak spanish, sorry. Muchas gracias por tu video, yo tomo antipsicoticos y estas pastillas me están causando este problema espero que tenga solución no quiero quedar así para siempre 😞.
Me alegra que el video haya sido útil y espero que ya no lo esté experimentando. (perdon si mi español era malo).
Me pasa igual, pero yo dejaba por completo los antipsicoticos y me dejaba de pasar, vos que hiciste? Ya no te anda pasando? Yo este año me entere lo que era, antes me habia arruinado la vida desde los 16 años
thanks for sharing
Is Abilify one of those "antidepressant" medications that's really just a repurposed antipsychotic med, 'cuz the drug companies need a bigger market share?
It is an antipsychotic. I took it for depression.
I'm sorry but my son has this and I'm barely learning about about thiscan you please tell me if it's painful because it seems to be accompanied by pain?
Hi Monica, yes, mine is definitely associated with discomfort. I'm not sure if it is the same for everyone, but I think the muscles in the eye are not used to moving so far and frequently the way they do during this.
Thanks for the video
Your so sweet for sharing this thank you !! Take care
You are awesome
Thanks for the video, had to look up what it Oculogyric was. thank you Whitney !
Jaguar Caribe I couldn’t find anything when searching for my diagnosis, so I thought it needed to happen! I’m glad it was useful!
@@whitneycarter3721 You are an incredible woman Whitney !!
I am a physio doing a bit of further reading on differential diagnosis of parkinsons and saw this and was surprised. Its really sad and i definitely hurt with you seeing this happy. Its extremely disabling as you cannot trust your eyes.
I hope you are able to stay safe and have stretegies to get through the event without having to stay in bed?
Can we take covid vaccine,plz reply me if u can?
I don’t know if there is any data on it with people susceptible to oculogyric crisis or dystonic reactions, but personally, I got the Moderna vaccine and it did not affect my eyes at all.
Thank you for sharing.
its scary panic attack with fobia or fear its happen to me every 3days which equal approximatly 60 times or more this disease or experiant need the persion to be wise and you must changethe MD revery 3 month until you find the MD what you was looking for thanks u brothers
Mine are not caused by a mental illness, but rather, the medications used to treat those things.