Years of Constant Eye Twitching Troubles

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smallsarah

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Hi,I have not posted for a long time.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.Shirley
 
Shirley,I am a fellow teacher and twitcher (for me 16 months). I take Klonopin which gives me back my life and eliminates the severe problems you describe your now having. I wish I could tell you how to deal with it but I went the medication route and so far it is working although it does not eliminate all symptoms it just makes it livable and keeps me sleeping normally. If I were in your situation, I would explore the treatments that those with channelopathies get and speak with those that have them. There is a member here with the user name "rickt" that has what you are describing. He obtained relief from plasma exchange. This is at least worth exploring. I hope others have some suggestions that are helpful.Krackersones
 
Hi Shirley,I wish I could suggest something practical, but how could I - I'm only three months into this and the future is unknown to me at this point. I just wanted to acknowledge your post and say I'm glad you decided to reach out through this board. It should be safe to do so here. I'm really just a person who is listening and would like to say "I understand", but I don't have your experience, I don't really know how it is like to put up with your symptoms day after day. If they interefere with the quality of your life, they must be pretty overwhelming. It sound like you are still able to work.If you don't have anyone to talk to, perhaps you can talk to a counsellor? I'm not suggesting this because I believe that your symptoms are in your head or anything like that! I've been seeing a counsellor and it helped me a great deal, emotionally and mentally. She is very supportive and she helps me focus on the positive, without having the "Polyanna from Lalaland" attitude. She actually helps me to advocate for myself when I deal with doctors.I hope you'll hear from people who have similar experiences to yours. It always helps to know you're not alone with your symptoms and remember that you're not alone anyway, even if we cannot completely relate to your situation. Take care, Kat
 
Thanks for the thoughtful replies and for taking the time to write them. I have heard of plasma exchange being helpful and I would sure be willing to try that if there was even a chance that it would help. I have had some counseling and perhaps it would be useful again in dealing with various stressors and the stress caused by this problem and the resulting lack of sleep. I think the first thing I will do is call my neurologist and try and get in to talk to him sooner than my next scheduled appt. on Dec. 23. He specializes in movement disorders - it is a clinic for movement disorders.I do feel less alone. :) Shirley
 
Hi,I would still appreciate hearing from people with suggestions and/or people who have a similar problem to mine ( lasting a long time with no improvement/diagnosed by neuro as channelopathy. . .) Today has been another bad day. I was up most of the night and my face is a twitching mess and a couple of fingers are moving on their own and I get this twitching deep inside my ear that makes a constant pounding sound and that is only part of the picture. I have to believe that even a with this problem that is benign, a person should not have to feel this way.Shirley
 
Shirley,Have you tried the website ? If not, join the site and search for discussions about isaacs syndrome. You should not have to suffer. I know there is a solution, it just might take some work to find it it.Krackersones
 
Thanks Krackersones, I went to that site and joined and it is a bit hard to navigate, but I did see some posts concerning Isaac's Syndrome and I will keep looking. Thanks for the tip. Shirley
 
Hi Shirley, I'm going on 3 years. I sometimes wonder how long this will last, too. I can't fathom 13 years. I know how hard this must be, because it's very hard on me and nobody seems to care. I can barely get my own wife to understand and sympathize, let alone a doctor. It's largely invisible to the outside world so it's difficult for people to relate. Twitches? Big deal. If they only knew how horrible it feels and mentally debilitating. I've tried a lot of things, klonopin, etc., nothing has worked. I will say that meditation does seem to have a temporary positive impact while I'm doing it. Inevitably, the symptoms always return. About a year ago I decided to stop seeing doctors and just live my life. I wish I could say my symptoms are subsiding, but I can't. I guess the only thing that is subsiding is my anxiety over them. I keep praying someone will find a solution on this website, a miracle. Every week or so I check the postings. It's discouraging. But I haven't given up hope and neither should you. There is an answer out there, we just have to keep digging. Many people believe this condition is anxiety or stress-related, especially doctors without any explanations. I don't believe that. I think there is a physical link to these symptoms, we just can't find it. That's why we must keep searching. I would be happy to share emails with you and our experiences. I feel very alone in dealing with this condition and the people on this board have been my only source of comfort and support. We have to keep talking and sharing our thoughts and stories. They are all we have. God bless and good luck.
 
Hi allI'm 14 months in (early days compared to some who have posted) and am finding it frustrating just how annoying the twitches are. As you say, people tend not to understand because (a) this is a non life threatening problem so why am I worrying? (b) it is difficult for others to appreciate the impact of the symptoms on daily life... for sure, they don't stop me doing anything but they are very distracting and, just when I want to relax and not think about it, I start twitching away. I worry less about having ALS/ MND - although this is still at the back of my mind. I guess these fears will continue to fade with time. So in summary, this post is just to empathise with others!RegardsSimon
 
Thanks for the responses.Pygasus, I would be happy to share emails. I am not sure how to go about that. Is there a method for private messaging on this forum? I understand completely about no one understanding. I am determined to get my neurologist to understand. I was married when all this started and my exhusband was did not empathise, my doctor told me a few years later that I was teaching full time and raising a daughter alone and therefore I was doing fine, I was dismissed by neurologists, treated for anxiety disorder, tried numerous drugs for an anxiety disorder that I did not have, my parents both died 4 years ago and my dad just kept telling me to get myself together - I had a child to raise. I am in a new relationship now and I was afraid to tell this man anything about this, but since it has exploded the last few weeks, I had to tell him. It is a totally isolating problem, because you can't explain it to people, even those close to you, doctors are indifferent - it is not life threatening after all. It takes another person with this problem to understand how awful it feels, how distracting it is while working and yet how I dread coming home to my now empty house and being alone with it.Shirley
 
I can't definitly relate to the spouse thing. My husband just does not understand at all. He just keeps saying "Won't don't you just believe the doctors" or "This won't kill you so why are you worrying so much". He just doesn't understand how annoying it is to twitch day in day out all over with no explanation. Thank god I found this board. I have met many great people on here who I now use as my support system. I have also exchanged phone numbers with a few and have talked on the phone. It really helps to discuss your symptoms with someone who is going through the exact same thing. I don't know what I would done without my friends on this board. Shirley, if you ever need to talk you can primate message me anytime. You will get through this.~Leslie
 

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