oculogyric crisis anyone?
 

Going through my old medical records, and came across this term, which had been used as a possible cause of my first hospitalization. It was never formally diagnosed, and a month later, I had seizures, which were formally diagnosed; the docs never looked back. But yet *I* still wonder what those spells were, because they were He!!. I googled oculogyric crisis and seizures, wondering if they could be a kind of seizure, which is what I figure, but I didn't come up with much. Soooooo, has anyone experienced this? It started when I was in bed and my head/eyes were frozen looking at the ceiling; then my (primarily right) eyes were literally ripped upward towards the back of my head. It was so excruciating that I had to scream each and every time it happened (it happened for about 16 hours on and off). The eye was pulled so far up and back that I couldn't see, and it would pull and pull and pull and pull.......and then release me. Movement, particularly I think when I was on my right side, and motion (being driven to the hospital; when the ER people pushed me to my room.....) set my head spinning, then my eye would rip upward all over again.

Sound familiar? At the time, they were thinking I had MS; no meds touched the "spells" for, truly, 16 hours. All that helped was not moving a muscle. He!! when I had to go to the bathroom because there was no avoiding it.

Goodness Footprints that sounds awful. I have never heard of anything like that. I bet Ellie could help you because she is our resident seizure expert...man did she help me!

nausea, headaches, etc from oculogyric crisis? anyone?
 

Hi Footprints (or anyone else for that matter), I hope you are still out there. I had oculogyric crisis in Sept. of 06. after a D&C for a miscarriage I had. I was given anesthesia and after awakening from the short surgery- my jaw was locked and my teeth clenched. The recovery room discounted my symptoms and released me. Then when I got in the car, my eyes started rolling back and kept going upwards like you described. (VERY VERY painful.) Also my neck and head kept going back. Finally after about 8 hours of suffering- I was brought back into the emergency room. I was terrified and begging my doctor to knock me out. Then I asked him if to figure out what was wrong with me (through my clenched teeth) and what had happened and if he couldnt make me normal again to not make me "come back" (at the time I thought it was brain damage or a stroke of some kind). I was literally resigned on dying b/c I thought they seriously screwed me up. I had NEVER EVER felt like that or ever wanted to die in my life.

Anyway, the reason I am even on here is to search for someone else who had this. The reason being is because ever since that day (6 months ago) I have had headaches, dizziness, hot flush-like feelings in my face and bad nausea. I have been to a gazillion doctors and all my bloodwork came back normal. Now Ive been diagnosed with anxiety/depression. I have NEVER had any issues with anxiety or physical symptoms before this. Obviously- I have developed some sort of depression in the last few months (mostly feeling sorry for myself type of depression because I am physically sick every single day and its affected my life.) I was wondering if ANYONE could tell me if theyve ever heard of a reaction like this with such long term effects. I am at my wits end and have exhausted all types of doctors and specialists. They can tell me what is wrong. I reluctantly went on Lexapro (an antidepressant) about 6 weeks ago and it hasnt done a thing to alleviate my symptoms. This just confirms my belief that it is not anxiety/depression. Anyone???? Please help Thanks so much, Maria.

Oculogyric crisis
 

Hi to both of you that have had issues with this problem. I'm sincerely hoping the information I am about to give can be helpful to you all. My fiancée was in a coma for 2 weeks in December of 2011 believed to be caused by a carbon monoxide leak. Which after doing some research can be a cause of different types of Dystonia. She was diagnosed with ARDS(Acute Respiratory Distress Syndrome) Upon coming out of the coma she was suffering from ICU Psycosis. The proper way to treat that is to allow time for the synapses within the brain to start refiring & connect back to reality. She was treated with anti-psycotics(Haldol & Reglin). We believe this could have been the cause of her onset of Dystonia(particularly Oculargyric Crisis). She was given a recovery time of 12-24 months. When she has an episode it seems to be brought on by a possible number of things including fatigue, stress, among other things. Common treatments Ive researched are Benadryl & some Benzos. Although Ive also read that the Benzos can bring on an episode. One medication in particular that i've seen no information on or rwccomendations for it being used as a treatment is Hydrocodone. I would not have believed it if I had not seen firsthand the honestly amazing effects it had in not only stopping the episode once it was occuring, but I have seen it keep the effects from even occuring. Based on the research I've done on Dystonia & Hydrocodone I believe the reason it helps is due to Hydrocodone being a blood thinner. I am by no means a trained physician or anything of the sort. What causes the onset from what I've read is swelling in that particular part of the brain. Other blood thinners may be a possible help or treatment, but there is so little currently known about this disorder. If you all are still having problems or have gathered any new information or would just like to talk to someone that has been through the same pain that you have please contact us. If anyone reading this could give me any advice I would greatly appreciate it.

i have had oculogyric crisis now since 2001. i was diagnosed in 2002. i had taken compazine for so long that it caused this. when it began my episodes lasted up to 10 hours. i hated it, it was scary and hurt. it made my anxiety i had so much worse. no medication has helped me regulate the epiosodes either. has anyone else developed it from taking compazine or reglan?

I am so glad to have found this page. i have always felt all alone on this.

My fiancée developed it from being given the mixture of reglin & haldol. I am very confident that if you were able to acquire or be prescribed hydrocodone that it would keep an episode from occuring or stop it flat out within 10 minutes. I've witnessed it firsthand too many times to not believe it. There is too little known about it.

oculogyric
 

until now i thought i was alone with oculogyric. i have had a few neurologist walk out of the room leaving no answers. does anyone no of any neurologist in the sacramento area? i was taking meds that were costing just under $1000.00 per month which was too expensive. i found that marijuana helps alot by relaxing the muscles in my eyes. i get an instant reaction but, my sight does not come back clear at first. i have had a c.a.t., mri, ekg, eeg,also a special blindfold test that triggered the oculogyric. it hurts quite a bit and i just need to know what to do next. i have been fired and refused work over this. i have one more job left and i use my skills to teach others since i do not have a license. light, emotions and nerveousness starts it. i just want to be normal again. since this problem occurred i no long socialize due to the embarrassment. please help scotty

Nice to meet you!!
 

Thank you darlene, you're such a neurosaint. Oops forgot my stamp, thank you jesus! Scotty

should i throw in the towel oculogyric
 

i am at the end of the rope with this problem. oculogyric has lost me my license, my job , but i still have my family. i decided to apply for social security disability. every nuerologist i have been to are totally stumped. i think if i go onto social security they will help me find something to keep me going. my hands and legs are trembling this is too much pain. i tried teach my profession, giving tech support or just research. what should a person with this problem do? is there a clinical study i could join? i had mri, eeg ekg verdigo test and massive amounts of meds. now i am broke, unemployed and still in pain.