Enduring 13 Yrs of Eye Twitching

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smallsarah

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I posted on the Symptom page a couple of weeks ago:I have been twitching now for 13 years. It is bodywide, but I find I can tolerate the toes and fingers that move on their own and the constant twitching all over my body, but I am most bothered by constant eye twitching - all four lids, up and down, side to side, up into my temples and down my cheeks. I have, over the years been, prescribed antidepressants, clonazepam (klonopin)and a host of anxiety related meds. I found a neurologist that would say that my problem was BFS and he put me on Tegretol and it helped, but my white count kept dropping so it had to be stopped. I told him that I read on the internet about people with BFS that twitch some here and there, but had not read about symptoms that were as continuous as mine and he believes that I have a channelopathy (sp?) which really doesn't change anything. He has been injecting Botox around my eyes and for a while it helped and gave me back a life. It is no longer helping. So now here I am at 52, fortunate to have only age related problems (some arthritis, a bad knee, etc., IBS). I tend to tell even my doctor that I know this will not kill me and I am lucky that it is not something serious . . ., but my twitching is so extreme that I cannot sleep, reading is only annoying (and I am a teacher) and I am no longer apologizing for complaining about it because it is not a serious illness which could kill me - it is destroying the quality of my life and has gotten progressively worse over the last 13 years. I know it is supposed to get better, most people seem to get better, but I have only gotten worse. I feel like I am about to snap and I can't tell anyone - who would understand?I would love to hear that I am not alone, that there are others with years of this with worsening the only change.I would love to hear any suggestions about how to just get on with living and learn to accept this constant movement and exhaustion and feeling like an oddity trapped in my own body.I would love to hear suggestions that might help.Thank you for listening.I had not posted in a while.I am wakened now every night if I get to sleep, after about 3 hours of sleep by this unrelenting twitching.This morning that was 2am. I live alone. I have to work in 6 or so hours. I teach. I cannot continue to function like this.If anyone has ANY suggestions, please let me hear them.Shirley
 
Have you tried taking vitamins, such as b12?I found b12 to actually help my symptoms quite a bit.It's known that almost any neurological issue causes a shortage of b12 in the body. It's worth a shot.=!
 
Thanks for responding.I tried B 12. Over the years I have also tried just about every vitamin and supplement one can imagine.Thanks for the suggestion though. Right now I am so completely exhausted that I am sure that I am deficient in many areas.Shirley
 
As an update.I have had 10 hours sleep in the past 3 nights and I have no support from my GP or Neurologist at this point and I do not know what I will do about this issue. Growing exhaustion is taking its toll. Thanks to the over 50 people who read what I wrote and especially to Thomaspickles who responded with a suggestion. It must be pretty hard when you may have had issues with twitching for weeks or months to hear of someone whose quality of life is being so affected by worsening problems after 13 years. It flies in the face of usual experience where it gets better in a while. Well, sometimes it does not. As I stated in a previous post, my neuro thinks it is a channelopathy problem, so, hopefully for most reading, my miserable experience is far from typical.Shirley
 
I tried reducing my salt intake (I have always been a big fan of salt). That seems to have helped. I still twitch but it is better. You could try that, took a few weeks to make a difference.
 
I got a private message and I thank you very much.I have tried repeatedly to send back a message and seem unable to do so.Sorry.Shirley
 
Shirley, have you asked your neuro about plasma exchange? If your problem is caused by antibodies interfering with your potassium channels, then plasma exchange should help. I had some eye twitching again yesterday but it did stop. I also get the cheek and lip twitches but not continuous. If these did become continuous, I would try something like plasma exchange since to me at least at that point the risks would be worth the potential benefits.
 
Have you tried to do more exercise? If you do more exercise, you will get natural tired and then sleep easyer. Im not saying its a golden solution but when you do exercise, you may not even feel the twitching that bad. And afterwards: you WILL be tired and then .... sleep
 
Shirley,You may need to try a combination of anti-seizure meds. You need to find a doctor who specializes in this. Have you been tested for Issacs? I was actually reading some posts on a Issacs message board and those people there are doing wonderful despite the disease. You just have to find the correct combination of medication or like Krackersones said, plasma exchange. Hope this helps. I did send you a PM but not sure if you got it. For some reason it never works for us.~Leslie
 
Thanks Leslie.I seem to get your PM's, but I have no luck sending a response.I have looked at Isaac's syndrome and I have several thinks that indicate that that may be a possibility.I have a very high RA factor and my ANA is positive and the inflammation markers (ESR and CRP are always very elevated).It is something that I plan to discuss with my doctor, but I cannot see him until the 23rd of December.Thanks again,Shirley
 
Hi Shirley,Sorry to hear about your problems - it is easy to have empathy when you live with a similar problem. The lack of sleep has got to be a big factor; in my personal experience, lack of sleep not only made me get numerous creepy additional symptoms but also made me depressed. I took gabapentin for a few months to get a sleep pattern back but stopped when it began making me forgetful after increasing dosage (you build a resistance to it). Have you tried it? The lack of sleep in itself puts your body in stress and wears you down. I have also had this stuff for a while - 5 years - but for me it is a roller-coaster ride and hasn't increased consistently. It's had a definite effect on my quality of life but I am stubborn and have gone around the roadblocks finding other paths by trying to exercise less dynamically but more consistently - and have also gotten good at meditation which helps me. I have cut out food & drink that I've noticed irritate symptoms. I also tried all sorts of vitamins, etc., most to no avail. I find it best to make sure to have some antioxidants every day (for me it's alpha lipoic acid and whatever's in my multi). Have you been checked for a metabolic problem? My neuro thinks I'm borderline with a metabolic myopathy. I'm taking acetyl-l-carnitine, 1500mg/day and it helps, no cure, just keeps me from extreme cramps/spasms and most of the pain that comes with them. You can get it at any health food store or vitamin shop and it has no side effects that I know of taken at a normal dosage (1000-2000mg) - takes a few days to kick in. Sigh, you need to be persistent with these docs as they tend to lose interest when you don't have any of the big disorders that kill you outright. I find it helpful to list the most difficult symptoms and just come right out and ask them to please help you looking them straight in the eye. Ask them what else could this be given these symptoms, try to get them on your side without putting them on the spot - works frequently as they feel a bit more invested. Good luck - if you need any specific ideas or want a better explanation of anything I've mentioned PM me. If you are having trouble sending PMs make sure your pop-up blocker is off and if that isn't it send a note to the webmaster or post him a message here and ask for help. We have a lot of computer techs here so maybe they could also give a hand.
 
Thanks for the note AllGoodHere.It helps to feel a little less alone.I took Tegretol and it helped a bit, but dropped my white count too low, so I had to go off it. You are sure right about the lack of sleep wearing you down. I have not been checked for a metabolic problem. I live in a small town and my GP kept insisting I had an anxiety disorder and kept trying to treat that for the longest time. I found the Centre for Movement Disorders and my present neurologist on my own. He is in Toronto and a bit of a drive. I do intend to ask him for help. He has an RN that I have talked to on the phone and he has told her to let me know that just because a problem is termed "benign" does not mean that he does not realize how much it is interfering with my life and he is concerned about the effects of the lack of sleep, etc.I have a new computer and it is a MAC and I am getting used to it, so now I will try to find out how to turn off the pop-up blocker when I try to send a PM. Thanks for the tip and thanks again for letting me know I am not alone.Shirley
 
Mostly I like the Mac, but I always had a PC and my school uses PC's and I miss a few of the features definitely.I have had no problems with viruses though. :D) Shirley
 
Fie on you Mr Clown nose and your anti mac comments. Actually I go both ways - mac or pc and it depends on what you are needing the machine to do. Macs are superior for graphics but since most other stuff was built around the PC platform it may often be the best bet. At my workplace we have both camps with good reasons all around....Shirley - I will try to pm with my mac and see what happens just as a test. Maybe it is just the way your internet security is set up.Later - it didn't work on my mac either - did you try using Firefox as a browser instead of Safari? Maybe I'll ask the webmaster....
 
Hi, my eyes were twitching for 2 months straight and I thought I was going to go out of my mind. At the time it started, I was using the computer heavily. I stopped for a while. I was also going through a period of insomnia [started before the twitching] and I was very stressed. I'm sure that didn't help. Stress can make these things worse. It's a double-edged sword. The symptoms are there, and we stress over them, and they probably get exacerbated.Have you thought of taking something for sleep? I'm not a proponent of sleeping pills, but if I start going through insomnia, I take them for a short time because my nervous system starts firing when I'm continuously sleep-deprived.Today I woke up and my left eye was twitching a little ...I thought "here I go again" [it hasn't twitched since July]. But it calmed down. I realize I'm a little more fragile than I used to be ... I can't do too much like I used to without something happening [symptom-wise]. I was also thinking about B-12 injections. Have you looked into them, discussed with your doc? The supplements are not as effective, from what I hear. Have you had your B-12 level checked? I did and mine was low, but not abnormal. I do take the supplements but have been thinking about the injections.I hope you feel better soon. I feel for you and understand what you are going through. LIfe is really hard when all of this is going on. Please have hope; things "can" get better. And don't give up on finding the solutions.Best,Kate
 
Shirley,I am very sorry to hear that you are so beaten down by this. I have been there on numerous occasions over the past nearly 5 years.Some observations:1. Your twitching isn't going away anytime soon so don't fight them. By fighting them you give them power. Accept them - you know they are not fatal. It's nothing - just twitching - random firings of muscles completely benign, completely painless, completely immaterial to you. Your life cannot be your twitching muscles.2. You must redirect your energy to something else. Friends, family, sharing here on aboutbfs, etc.3. I would see a really good psychiatrist to help with the sleeping and issues of depression that are associated with BFS. You sound like you're spiraling down a little. I had that happen, my wife took me to a great psychiatrist, and my life was saved. Could help.Mark
 

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