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Posted by: dsal ® 02/13/2003, 19:10:35 Author Profile Mail author |
Hello! I have just registered for this bulletin board. Here is my story, and I hope someone can help! I am in my 40's. Ever since I was a young girl, under times of duress, my eyelid(s) would occasionally twitch. This would only occur rarely, so I never worried about it. During this past year, however, the twitching has become worse and more frequent. It is mainly my right eyelid, and occasionally the left. But it will noticeably twitch several times a day--a couple times each hour, no matter what: stress, no stress, etc. It's driving me nuts. It is not a constant twitch, and it usually only lasts a few seconds, but it does bother me. I've mentioned this to my regular dr., who doesn't seem to think it's any big deal. She mentioned to restrict my caffeine intake, which I already do. (I do not drink caffeinated coffee, and rarely any caffeinated tea, but I do drink decaf coffee, decaf tea, and I do like chocolate.) So, she suggested that I completely cut out chocoate. (Hello! Why not just throw me off a bridge! ha ha) So, here come my questions! Do all of you completely give up caffeine to help your twitching? Do you recommend I see a specialist? Do specialists care about the somewhat minor twitching I have (as opposed to those who have severe, restrictive twitching)? What type of a specialist should I see? When did you decide to seek treatment? Thank you!
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: Christine ®
02/13/2003, 21:13:46
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Welcome, your story sounds so like how my Blepharospasm started. I also had the odd twitching of my left eyelid, once or twice a year. As it was usually in Spring or Autumn I just blamed sinus as when I mentioned it to my Dr anmd optician, they had no answers.Then my eyes kept getting sore and eventually I was told I had Dry Eye. A few months later my eyes "blew up", this was Easter 2001, and pain was terrible. I went to an Eye Specialist and I had some kind of inflammation and went on to Steroid drops etc. The flickering/quivering got worse and became constant in one eye. I thought I was developing some kind of nervous tic, but as I couldn't watch television, I knew something wasn't right. In the July my Dr told me I had Blepharospasm. My right eye quivers too, but not as bad, yet. My actual eye [left]spasms as well.My eyes still get sore and tend to sting and burn.So I am nearly 2 years on from when this started fulltime and my eyes have changed in that time. I can watch tv a bit better, but I can only drive for about 5 minutes. It is a very frustrating thing to have. How can people understand that I can only drive for 5 minutes when I don't understand it myself. My only suggestion at this stage is to check if you have Dry Eye or not. A quick test is to see if you can cry. If there are no tears, then you will have Dry Eye and start using drops straight away.Your Eye Specialist has tests for this. Good Luck!
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: Lyn Patterson ®
02/14/2003, 05:19:24
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Hi dsalI think you see an ophthalmologist and ask him about BEB. It is notoriously difficult to diagnose - took me a couple of years - though I think it is becoming better known in the medical profession. Mine started when I was in my 40's and I have been having Botox injections for over 13 years now. I went to see a specialist because I could not literally keep my eyes open particularly when driving - which was becoming a bit hazardous. No need for you to wait that long.
As for caffeine I don't drink tea or coffee but sometimes indulge in cola drinks and could not live without my daily chocolate ration !
Good luck.
Lyn
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: June in Toronto ®
02/14/2003, 07:05:30
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Welcome to the BEB bb Dsal. I just wanted to comment that there was one poster a year or so ago (?) who went off caffeine completely...and the eye twitches went away, so it really is worth a try, chocolate as well!If that doesn't work you should see a movement disorder specialist who is familiar with BEB. My diagnosis took about 2 years and I eventually read about it in a woman's magazine when I was in the U.K. and diagnosed it myself first! A lot of doctor's have never heard of it, so its very important to get a doctor who has. Good luck to you and let us know how you are doing - we care.
June in Toronto (BEB/Meige 8 years)
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: denise mckew ®
02/14/2003, 08:34:18
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Hi,I haven't given up caffeine completly, but I have decreased my intake from 4-5 cups of coffee a day to 2-3 a day. I can't say that it makes a huge difference.
I would try some eye drops to see if dry eye is part of the problem. If you wear contacts, I would switch back to glasses for a while to see if that helps. I find with my contacts I have more of a problem with glare. (Especially under flouresent lighting).
Try to find opthamologist, or a neuro-opthamologist that is familiar with BEB. And if you are getting concerned about it, go now. Not doing anything, and still twitching, is probably causing you stress. Being told "it's nothing" by a specialist is certainly more re-assuring than being told that by your reg. Dr.
Hope this helps -
Take care
Denise
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: Kelly Saffell ®
02/14/2003, 10:24:20
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My symptoms began when I was 26 with heavy lids. They would just drift closed. After 6 months, they were squeezing shut and not opening again for anywhere from seconds to minutes at a time. That is when I sought treatment. I had an appt with a neuro but it was still over a month away. One night I was home from work and had just put the baby to bed and my eyes were squeezing so hard that I told my husband that even my 9 month old daughter wasn't enough to make me want to continue to live. He called the neuro (he is a nurse) and got me in the next day. I have been receiving botox every 8-10 weeks for 7 years. It helps me function by driving 2-5 miles, caring for my kids and reading some but I have been on disability for 3 years from my job as a CPA. I have noticed that caffeine makes my spasms worse so I tend to stay away from it and only indulge once in a while. The foundation can give you a list of doctors in your area experienced with beb. A neuro or opthl will be your best bet.
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Re: New member Re: Re: New member -- Kelly Saffell Top of Thread Archive
Posted by: Ann Doyle ®
02/14/2003, 12:12:17
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I would suggest a Neurologist at a Movement Disorder Clinic. Usually they work with nothing but Dystonia patients and are very knowledgable. Many Opthamolagist and Neurologist know nothing or little about Bleph or Meige. I was given tranquilizers for the first two years--since they couldn't diagnose it, it must be all in my head. I diagnosed myself and found a DR. out of state.
Not only does caffeine make it worse for me but so does aspartame which is in most diet foods, especially diet drinks. The only diet cola I can find without it is Diet Rite but there are other non cola diet drinks without it. Try a couple of weeks without either caffeine or aspartame if you can. Ann Doyle
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: Jackie Dewey ®
02/14/2003, 12:49:53
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Ditto on the advice to seek a specialist soon. I have BEB and see a movement disorder neurologist. I receive Botox injections every 3 months. I have been diagnosed since October of 2001.My experience started out by having difficulty holding my eyes open while driving in Jan. 2000. I was driving a van for Head Start at the time. I thought that I was just overly tired and would drive with one eye open. I changed positions at work so that I wasn't causing dangerous situations for the kids.
My eyes continued to be heavy but I blamed it on the fact that I was anemic due to female problems. Following a hysterectomy in May the problem with the eyes increased. I just thought that it was post sugery symptoms. Each time I would see my doctor whether it was with my kids or myself, he would tell that I looked tired and should get some rest. He mentioned blepharospasms and sent me to a neurologist. The neuro didn't think it was blepharospasms because I wasn't experiencing pain. He admitted that he hadn't treated anyone with blepharospasms for about 6 years. He started out by giving me meds that are used for parkinson's disease. He also ordered several tests. One was an MRI. It didn't reveal anything and the meds didn't make a difference. So he prescribed valium. It was a very small dose but all I could do was sleep for several days. I called my regular doctor, since it was easier to get in touch with him than the neuro, and he suggested that I stop the valium.
The next time I saw the neuro he wanted me to video myself. He said he had a colleague that he wanted to see my symtoms. I did that right away and sent the tape to him. I didn't hear anything from him for 2 months so I scheduled another appointment with him because the symptoms were getting worse. When I asked if he had seen the tape he asked "What tape?". I had to remind him about the tape and he said it was probably in a stack on his desk. It was another 3 months before I heard anything. His colleague diagnosed the blephoraspasms immediately.
That is the specialist that gives me my injections. It took awhile before I was able to get an appointment with her but the first day I saw her she gave me the first injections. That was October 31, 2001.
So much time passed because I spent too much time waiting on the doctor to contact me. I have learned that it is not always the best thing to be so patient. We as patients have to become our own advocates for the best effective care. Many times we are just one in many to the 'professionals' and we have to help them realize the urgency of our situations.
Looking for the best specialist is also important but one of the problems with Northeastern Colorado is that we are a rural community and there just aren't a lot of possibilities out here. We end up traveling long distances to receive treatment.
Best of luck to you in your search for answers. This BB is a good place to receive suggestions and support.
Jackie
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: Virginia ®
02/14/2003, 15:33:43
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My experience with my GP was much like yours and my caffeine intake was also much like yours. My doctor said his eyelid twitched sometimes, too. He moved into an administrative position at a local hospital, so I don't see him any longer, but sometimes I wonder if his twitch ever turned into anything worse. To his credit he did recommend that if it got worse, I should go to the eye clinic at a medical school not far away and have them look at it. I did see a neuro-op there and he easily diagnosed it. Neuro-ops should be able to identify the problem as should movement disorder specialists. A diagnosis is a good start, but treatment is another matter. It may take several tries with several doctors before you find the one that works best for you. The BEBRF can provide you with names of doctors in your area who are familiar with BEB.I did not completely cut out caffeine, but if you can stand it, you could give it a try. I find that a little caffeine usually helps my eyes. We don't all respond to things the same way.
As far as when to seek treatment - my doctor's rule of thumb (which made sense to me) was when it started interfering with your normal activities.
Good luck and stay in touch,
Virginia in AL
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Re: New member Re: New member -- dsal Top of Thread Archive
Posted by: linda Overton ®
02/14/2003, 20:42:54
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Dear Dsal,
My story is similar to yours. My eyes twitched occasionally for a s long as I can remember-if I was excited,stressed etc.It wasn't a problem till about 4 years ago. My sister said to me do you realize how much you blink even when we're just sitting here by ourselves talking. I noticed it much more myself.
My eyes seemed dry. I tried every available drop.No significant help.I started looking on the internet for eye related problems and found blepharospasm-fitted me exactly.After contacting the foundation in Beaumont,Tx.I had names of Drs. who treat BEB. I've had 9 series of injections over the last 3 years and two surgeries. I still struggle-somedays a lot somedays hardly any.Light seems to be my worst enemy.I wear sunglasses and a visor most of the time.
I have been careful to not letit interfere with my life more thanjust has to be.I started back to jazzersize 7 months ago-shorly after I started on disability and could go in the morning(I'm progressively worse as the day goes on).I heard two young girls in front of me say"Iwonderif that lady is blind or if she just thinks she's cool" I almost left before that class started. I know a lot of the ladies there now.I've never gone into a lot of detail with them but they like me anyway.
I drink 1 cup of coffee a day-I don't tell a difference by not drinking it but I sure miss the "ritual"of my morning cup if I don't.
Welcome,
Linda in Memphis
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Re: New member Re: Re: New member -- linda Overton Top of Thread Archive
Posted by: dsal ®
02/16/2003, 17:43:58
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Thanks all of you for your input! I'll check with the foundation for dr.'s in my area who are familiar with this, and set up an app't. I'll let you know how it goes!To Jackie: So sorry to hear about the run-around you received! Can you believe that that dr. just let your tape sit there, after all the work you went through to tape it, and the agony of waiting? Some people....!
To Linda: Sorry to hear about the rude comments made by the Jazzercise girls. I just read an article in a magazine about good "come-backs" that we think of too late.....things that would have been perfect to say at the time, if we only thought quickly enough. (The article mentioned that the French language actually has a phrase for this, which roughly translates as something like answers-on-the-steps.....the words that come to you when you're way out and it's too late.) Anyways, not that I would really have said this, but it would've been kind of funny to say, "Yeah, I'm legally blind, yet I can still see that you have a big butt." Ha ha
To everyone: I've noticed that several of you have mentioned problems with driving, and with lights. I've actually had problems with both, but I'm thinking it might be different from what you are mentioning. With driving: I seem to get *very* tired when I drive, or ride in cars. More than the average person--and even if I'm well-rested. This happens more *in the day-time* as opposed to night. My eyes just feel really sleepy, but I blame it on feeling almost hypnotized by the passing scenery on the freeway. Is your problem-with-driving like this, or is it that you are just having trouble keeping your eyes open (as opposed to feeling sleepy)?
As far as lighting goes, I've always felt kind of weird, and had "tired eyes" under fluorescent lighting. I'll have to fight to stay awake then, too. I was even like this when in High School. I mentioned that to my optometrist years ago, and he just thought that maybe I was a little sensitive to the type of color rays emitted by those lights, and kind of blew it off. Any thought on all of this?
Thanks,
dsal
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Re: New member/LIGHTS Re: Re: New member -- dsal Top of Thread Archive
Posted by: June in Toronto ®
02/16/2003, 19:42:50
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I'd like to quote two excellent back posts about lights which make sense:March 20/01 by Christel-California "Why Photobia is a problem for us":
"Horst said: Fluorescent lighting is produced by electrical stimulation of powdered particles, which coat the inside of the typical fluorescent light tube. Ultraviolet energy is produced within such lights, but cannot penetrate the barrier that the glass of these tubes provides. The fact that one can be warmed by sunshine streaming through a glass window but will not get tanned or sun burned testifies to that. However, this electrical stimulation of the powder particles inside the fluorescent tube is turned on and off repeatedly and occurs at 60 TIMES A SECOND in all electrical systems used in America. Although most people do not consciously register such rapid on and off switching, it is not to say that the brain does not perceive it and subconsciously react to such stimulation. It is likely then that people with blepharospasm, a neurological disorder, would be moresensitive and respond negatively to such pulsing of light."
Nov. 01/2000,GailJ, "Light sensitivity:AnExplanation"
"From my recent search of Health Science databases, I can report on research done to epxlain the relationship between light sensitivity and BEB. The study was reported inthe following paper:
McCann JD,Gauthier M, Morschbacher R, Goldberg RA, Anderson RL, Fine PG and Digre KB (1999) A Novel Mechanism for BEB,"Ophthalmic Plastic and Reconstructive Surgery, Vol 15, no. 6, pp. 384-389.
The purpose of the study was to test "the hypothesis that the photophobia of BEB is caused by sympathetically maintained pain". Intervention was taken in the study to block the superior sympathetic ganglion with local anaesthetic. Thirteen of 19 patients have "objective evidence of decreased light-induced eyelid spasm", and 13 also reported subjective improvement in BEB symptoms. Of the 19 patients, 18 had ocular surface disease.
The study concluded that THERE WAS EVIDNECE TO SUPPORT THE HYPOTHESIS THAT IN MANY BEB PATIENTS THERE IS A SYMPATHETICLLY MAINTAINED PAIN SYNDROME ASSOCIATED WITH EXTERNAL OCULAR DISEASE, AND THAT LIGHT SENSITIVTY OF BEB IS CAUSED BY SYMPATHETICALLY MAINTAINED PAIN.
I need to caution that the research design of the study appeared not as rigorous as it could have been. However, it was appropriate enough to have published in apparently double-blind peer reviewed reputable journal."
I hope this sheds some light (!) on the lighting problem.
June in Toronto
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Re: New member/P.S. ON LIGHTS Re: Re: New member -- dsal Top of Thread Archive
Posted by: June in Toronto ®
02/16/2003, 19:57:26
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"..a possible explanation of BEB'ers and photophobia. The iris of the eye is a "light valve" that regulates how much ambient light gets to the retina in the back of the eye. It opens and closes - camera lenses also work this way - to protct the retina from over exposure. It appears to take about a second to make the transition from open in darkness or shade, to closed in bright sunlight.
Normal blink duration for people is about 1/20 second. During normal blinking, the iris does not have time to adjust to the reduction in light, so it stays somewhat closed during the duration of a blink. After the blink, you don't notice any change in intensity.
Blink duration in a spasm is several seconds,at least 20 times that in a normal blink, so the iris opens during the spasm. Then when the eyelid opens, the iris has to close again against the light. During that short interval the retina gets bathed in bright light, which is bad for you, and your system reacts to it.
Not that this helps your photophobia, but perhaps knowing this can help those of us whoare really bothered by it to make some adjustments in how we deal with bright light."
June in Toronto who thanks Lynn for his thoughts on this subject.
--modified by June in Toronto at Sun, Feb 16, 2003, 19:58:01
Modified by at Sun, Feb 16, 2003, 19:58:01
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Re: New member/movement disorder Re: Re: New member -- dsal Top of Thread Archive
Posted by: Kathy in Oregon ®
02/17/2003, 07:53:37
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I also get very tired when even a passenger in a car and i think this perhaps why beb could also be a movemnt disorder. I still feel like i have to navigate or something will happen . I also seem to feel somewhat dizzy if I'm not in charge or in control of the vehicle.
I'd also like to know that french "comeback " word as this happens all the time to me. It's hard for me to be rude to someone's face but I can think of plenty of things afterwards!
flourescent light are a major problem for many of us at times and also give many people without beb headaches, hence our fl41's filtered lenses.
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Re: New member/movement disorder Re: Re: New member/movement disorder -- Kathy in Oregon Top of Thread Archive
Posted by: dsal ®
02/19/2003, 18:58:48
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Hi, Kathy! I did a web-search to find out the French phrase: it's "l'esprit de l'escalier." It means "spirit of the staircase," which refers to the fact that you think of the "witty repartee," when you're on the staircase, on the way out the door (i.e. too late). Unfortunately, I do this all too often!dsal
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