I'm amazed that their is somebody out there that cares about this and doesn't even know me. I've been to akron gerneral ER twice about this in the last two months. First time they said I was just having a panic attack. Second time I had this twenty something doctor who actually said myoclonic jerks were very common and normal. He said they'd need to see something in a sleep study to verify and decide what to do next. Right after the surgery I seen my family doctor who told me i'd have to wait 6 weeks for another sleep study and recommended I get back on Lexapro and felt i was just anxious about nothing.I returned to work 2 weeks post surgery with these things happening at night and after two weeks I collapsed on the floor with a hyperventilating anxiety attack. I was rushed to beahwood hospital, I told the ER doc what was going on with my sleep since the surgery and he said"We've gotta get this ENT on the phone..He has to see you now!" Well...the ENT told him everything was good, no complications and very sucessfull and that I seen a psychiatrist. The ER doc's tune chaned from emergency to "I've got you arranged to see your psychiatrist...He's gonna give you someting for anxiety".Well He gave me xanax..I took it and almost suffecated in my sleep. My brother said I should get back on serequel because that is what always helped me sleep before and my father said "I get like this every time I go off those pills and I should be put into an institution so somebody can take care of me. I have been scratching and kicking for help ever since this started...I'm amazed at how slow things are happening. If i wasn't young (35) and in good cardiovascular shape i'm sure i'd be dead by now. I called cleveland clinic back and it looks like they never refilled the appt I had and I got it back...I'm going up this wednesday to see a neuro that specializes in movement and phychiatry..Hopefully I'll get some definitive answers...Got the sleep study tonight...I'm hoping that tonight I slam my jaw, Jerk my head, swallow my tongue and almost die just so somebody will finally see what i've been going thru. My neck is hurting pretty bad now..all the way into my scapula because the last two nights i done the jaw slamming and head jerks for 4 minutes strait before finally waking up. This morning when I woke up I started wiggling the toes on my left foot like I was playing a guitar and they were also moving in a wavy motion. All this is making me sick to my stomach...I wake up every morning with heart burn and stomach acid in the back of my throat...I think i'm getting an stomach ulcer now. Well...I'll keep you posted on what the neuro says and how things turn out at the sleep study ect...I remember telling my psychiatrist about some jerks i was getting during the day and he said it was nothing to do with the medication...He also said now that he's never heard of grimmicing, Lip puckering and blew off my reacation coming out of anestesia as"Everybody reacts differently...no big deal". After having all this experience i can now understand why my mom isn't here anymore. My mom died in 1994...Before there was the internet and online forums and stuff. God only knows what she was told or led to beleive about all the things that were happening to her. Well.....I"ve gotta stop now...starting to vent again....I'll keep this forum posted...good or bad
Hope you reschedule an appointment with Cleveland Clinic. It is very bad that you cannot breathe, the docs are simply incorrect to call that "mental illness." There is a device you can sleep with in your mouth to prevent it from crashing shut, but then you wouldn't be able to get your oxygen, plus your tongue would still fall into your throat. I think this is actually an emergency for you. Go to the ER and tell them your tongue is collapsing into your throat, tell them the whole story, maybe they'll admit you and do some tests right then and there, plus they could watch you in the ICU when you sleep and SEE that you have a major problem. By the way, YOU can schedule a followup appointment with the surgery docs, something is NOT right, whether it's from their op or from your apparent dystonia from drugs. Try not to think about what happened to your mom. Instead, do for yourself what you wish could have been done for your mom. You must get someone to listen to you, and perhaps the ER can tide you over until you can get to the Cleveland Clinic. And you do need to contact your psych doc again and tell him what's happening with your sleep and your muscles seizing up, that you are concerned it's a reaction or side effect of the Seroquel or the anesthetics, ask him if he has an antedote for it, that you are not feeling normal AT ALL. Keep us posted. And seriously consider going on over to the ER today, if you can.
Thanks for all the input. I had an appointment with a neurologist at the cleveland clinic that specialized in movement and phychiatry. My family doctor refered me to a general neurologist though. Well...at first i thought i'd better go with what my family doc wanted me to do and not just fly off on my own and do what i thought so I cancelled the appt at the cleveland clinic. what a mistake..the neurologist i seen didn't even know what I was describing and he wanted me to cancel my sleep study and get me into his lab which would take another month. He also wanted to sell me a jaw advancement surgery. the last couple nights things have gotten worse for me. usually i would slam my jaw shut and jerk my head like one time then wake up. Now i'm going through 5 minute episodes where i'm constantly slamming my jaw shut and jerking my head sideways. When I wake up my neck clicks when i turn my head. the whole right side of my neck is in pain and this morning i had pain shooting down the left side of my back and the center of my neck and upper spine is sore now as well as i have bitten the inside of my lip. I can faintly inhale and close my throat off when i'm awake and I went to another ENT and got a second oppinion. He put the scope up my nose and I started breathing in and he said my tongue base was collapsing. When I'm in rem sleep you can actually hear me snorting my tongue through the cpap machine. Everybody says that since I have the auto-titrating cpap machine that it should be working for me. Seems like when my tongue collapses the cpap machine cranks up the pressure which only makes it collapse worse. I hope that is all that is causing the jerking. I hope its just my bodys way of waking me up. I'm getting so aggrivated and angry with everyting....Ever since the get go nobody has taken me seriously because I see a psychiatrist. they think i'm just having anxiety for nothing. The ENT that done my surgery said the surgery was very sucessfull and sees no signs of complications and told me to see my phyc doctor for any problems i was having. He has totally wrote me off with no follow up appointments or anything. My own family thinks i'm crazy and need to get on some kind of pills to get things straitened out. that's the problem with mental problems is that no matter what ever happens to you nobody will acknowledge or believe anything is wrong besides "mental illness". Same thing happened to my mom...She took a lot of meds for 20 years...finally in the end she was given a month long acting shot from one doctor that reacted with a med that another doctor had her on and it caused her kidneys to shut down. She spent the last two weeks of her life dying in the house and everybody just said " She's nuts..that's what she does when she don't take her pills" Well, My brother found her at the end of her bed in a praying position dead from kidney failure. Well....I guess i'm getting off the subject now and just venting...Thanks for the input...I have been taking 1600 IU of vitamin E a day becasue i read that on td.com
Bernard,
I think your upcoming sleep study and visit with the neurologist (be sure to give him same info you've given us on your history) will lead to some new treatments for you that will hopefully give you some relief. Also, I think you need to get a new breathing machine just in case, and I think the surgeons who did your ops for sleep apnea should to do a follow-up checkup on you. Now, I do know a little about dyskinesia, I had some wierdness happen to me one time from a drug I only took for a while, and I know how awful your life is for you right now. Throw on top of that no sleep for ages, you're about to go around the bend. I'll give you a little info, but do what the neuro says no matter what I say here.
Tardive dyskinesia is a lot like dystonia, you feel it especially in the throat and lower face, and, as you said, taking Seroquel for a long time can cause the muscles to tighten up, even long after it has been discontinued. On top of that, some anesthetics and adjuncts can cause dystonia, and these include Versed, Propofol, and Droperido. Could be when you had your surgeries, one of those was used, and dystonia symptoms just fell right into your predisposition to have dyskinesia symptoms from Seroquel. I don't know anything about the Celexa you take.
Fair treatment for dyskinesia and dystonia can include things like Valium or some of the other benzodiazepines, with Librium and Klonopin having muscle-relaxing qualities. Sometimes some big shots of Valium a few times will stop it. There are plenty of other medicines that work less well, like a drug Tetrabenazine that is used to treat people with Tourette's, but the problem with it and all the other neuromuscular drugs is the side effects may outweigh the usefulness, like depression or worsening of symptoms. What I think, tho, and have read in some literature, is that opiate derivatives seem to help, just like when they gave you morphine in the hospital, your legs quit shaking. You could run it by your doctor the idea of giving you some IV Valium and Morphine for a few days, in the hospital so they can watch your breathing, and see what happens, but I cannot imagine they'll do it.
Also, supposedly the Vitamins B6 and E especially, and additionally sometimes C and Niacin, help dyskenisia. And then there's acupuncture, which for some folks it minimizes pain and muscle tension. Also for dystonia, there are shots of botulinum toxin that prevent a neurotransmitter from activating the muscles, but only right where the toxin is injected. If things are really bad, they actually have surgeries that they can try on body areas affected by dystonia, but these procedures are fairly new, I think.
So, to tide you over until you get to the neuro, I personally think you're not sleeping well because the muscle tightening process is closing up your airway (rather than the air machine or surgery). When you think about it that way, you might want to try propping your head and neck with pillows, so that your head is back a little, like they do on TV when they resusciate a person, they tilt the head back and jaw up, to open the throat, and you can do it even if you sleep on your side, just get that head up and positioned back a little. During the day, and anytime you start to freak out, do some really deep breathing, it lowers the heartrate and thus anxiety, plus it relaxes you. And go ahead and get you some Vitamin B6 and E supplements going, but just take them twice a week...you can get too much B6.
And be reassured, that sleep test is going to blow away your neuro, make sure they forward the results to him, and also your neuro will recognize what your particular disorder is straight away from your description of symptoms, your history of medications, and your uber-reaction to possibly the operations' anesthetics. Keep us posted on how things go, try very hard to relax yourself, and look forward the neuro appointment, becuz he will be able to eventually provide you some relief.
GG