Blepharospasm or not?


Posted by jordan zweigoron , Mar 22,2001,09:53   Archive
I've had strange symptoms for almost 1 year now. Wondering if it might be Blepharospasm. I have twitching in both eyes (although not outwardly noticable by others), and extreme pressure sensation around my left eye. In addition I have difficulty swallowing and find that I'm clenching my teeth in an almost involuntary way.

Having been to every doctor imaginable, I'm at my wits end. For those who have blepharospasm, does this sound like I've found a diagnosis? I have asked a couple doctors if it could be BEB; they said no, because they were unable to actually see the eye contractions. Not sure if this is the best way to exclude BEB from a diagnosis or not. Any thoughts?




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Re: Blepharospasm or not?

Re : Blepharospasm or not? --- jordan zweigoron
Posted by Kelly Saffell , Mar 22,2001,10:34 Top of Thread Archive
Although I don't have eyelid twitching, I do have pressure behing my left eye. I have been on antibiotics for a sinus infection before thinking that was the cause of my pressure. I also clench my jaw involuntarily and have a slight spasm in my throat which bothers me when I drink, especially when I drink out of a water fountain. I see a couple of doctors for these symptoms. I receive Botox in my jaw (20 units each) every 3 months from a neurologist which helps relieve the clenching. I also have TMJ and sleep with an appliance at night. I know TMJ can cause headaches/pressure around the eye area as well. I also have the traditional beb symptoms of eyelid squeezing/blinking and difficulty holding my eyes open. Hope this helps.



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Re: Blepharospasm or not?

Re : Blepharospasm or not? --- jordan zweigoron
Posted by Shirley-Arkansas-USA , Mar 22,2001,11:04 Top of Thread Archive
Hi Jordan,
Welcome to the Blepharospasm bulletin board. I don't feel that anyone is going to be able to give you a definite answer on this one. Can you see the twitching, yourself, if you look in the mirror? Or does it just stop when you go to the doctors office? This is a common occurrence, especially in the early stages of Blepharospasm. Are you saying that it is just a sensation of twitching that you feel or can you actually see it?
The swallowing problem could be a form of dystonia or any other number of things. Same with the teeth clinching.
I imagine that you have already seen your family doctor, possibly an ENT specialist regarding your swallowing difficulties and maybe a neurologist? Blood tests been done to rule out thyroid problems and just a general blood profile should be done.
You may or may not be able to get a correct or firm diagnosis unless your symptoms worsen which none of us would wish on you.
I and a lot of others had Blepharospasm begin at a time of great stress. I'm not saying that the stress caused it but that it might have been a trigger or precipitating factor. Mine started slowly with having difficulty wearing my contacts and eyes just feeling irritated and like I was having an allergic reaction. Light sensitivity increased and I began having more and more difficulty keeping my eyes open. Over a period of two to three months they worsened very quickly to the point where I could no longer drive or perform my work duties. They weren't just closing, anymore, they were squeezing tightly closed and giving me horrible headaches. I could not keep my eyes open to read or watch TV. I would be walking and they would squeeze closed and I would walk into a wall or fall down, having tripped over something.
I did notice in the early stages a twitching in my lower lids which I could see but it was not really noticeable to others unless they really looked and then they could see the fine muscle tremors in my lower lids. This has since gone away. I have recently begun to have jaw clinching and my neck pulling to the right several times in succession. I was diagnosed approximately two years ago.
I'm sure that others will respond to your post. Read as much of the BEBRF Main Pages as you can. They are located at the top of this page. Just click on it and it will take you there.
You may or may not be in the early stages of Blepharospasm. Some people have very mild cases and these would, indeed, be hard to diagnose.
If you have not already done so, you might consider seeing a good neurologist who specializes in movement disorders. Doctors who do not see a lot of Blepharospasm patients will probably not even be able to recognize it, if it is right in front of their face.
Wish that I could be of more help. Ask whatever you would like and we will try to answer.

Shirley in AR.




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Re: Blepharospasm or not?

Re : Blepharospasm or not? --- jordan zweigoron
Posted by Carol Thoma , Mar 22,2001,11:30 Top of Thread Archive
Jordan,

Unfortunately, we can't diagnose you, but we can compare symptoms. My blepharospasm started out with extreme light sensitivity, red eyes (I was actually diagnosed with pink eye and given steroid eye drops), and a sensation of extreme pressure in both eyes. Going outside into natural light was almost unbearable, and walking across campus from my office to the classrooms where I was teaching was a terrible ordeal. Even with sunglasses and a sun visor I had to stop beside a wall every few feet and wait till my eyes opened up again (or open them by hand). I developed torticollis (involuntary head turning) at almost the same time, and I did notice jaw clenching then, too. My guess (and that's all it is) is that you're in the early stages and may have to wait till it gets worse before you find a neuro who will be willing to say that yes, this is blepharospasm. Just hang in there and keep trying. Good luck! And by the way, even if it's not diagnosed as BEB, you're still welcome to talk with us on this board any time.

Carol




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Re: Blepharospasm or not?

Re : Blepharospasm or not? --- jordan zweigoron
Posted by Lynn Yarbrough , Mar 22,2001,12:34 Top of Thread Archive
From your description I would guess that you don't have BEB but, more likely, a related disorder called Meige syndrome, which causes spasms over a much broader area of the face, neck, etc. You ought to find a movement disorder specialist, otherwise a neurologist, last an opthalmologist, for a better diagnosis.

In any event (and I mean this for all members of this forum) it will be to your advantage to find someone to make a videotape of what you look like when you are at your worst in terms of spasms. This will make the diagnosis easier because the Dr. will see what you look like when you are feeling really bad, and you will be able to describe your feelings when certain scenes appear on the tape, as you watch it together. Since you can never see yourself blink in a mirror, you will be able to see for the first time what parts of your face are involved in your spasms. To make sure that you get the full spastic effect in making the video, you can do the "standard" BEB test, which the Dr. is likely to do anyhow: have someone GENTLY hold your upper eyelashes to your cheek with their fingertips while you attempt to open your eyes: this will usually trigger big spasms.

Good luck in getting your diagnosis - it's essential to get a good one, because that determines your path of treatment. Venture over to the companion forum which covers a broader set of movement disorders than just BEB.

--- Lynn




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Re: Blepharospasm or not?

Re : Blepharospasm or not? --- jordan zweigoron
Posted by Sally - in - Idaho , Mar 22,2001,20:04 Top of Thread Archive
Jordan ... Welcome to the BB. Your symptoms sound like a definite possibility of blepharospasm/Meige. My early symptoms were tics that no one else noticed, then extremem photosensitivity. By the time I finally was referred to a neurologist who is a movement disorder specialist, he was able to take one look at me and tell me what I had. Which I had been telling and telling the doctors that I had, because my mother had it! I also have some jaw clenching. During the day I try to make myself check for it regularly and unclench my jaws. However, I frequently wake up at night with them clenched so tightly together that I have a headache. I've also weakened some teeth and they broke.

All the advice you've been given above is very pertinent. You need to find out what it is you are dealing with in order to obtain helpful treatment. The only test the neurologist gave me (actually it had already been ordered by my primary care physician) was a blood test to rule our myasthenia gravis (sp). Everything else was just watching me walk, close my eyes and try to open them, follow a pencil ... simple things like that.

I wish you success in finding a name for what you have. Please stay with us here on the BB. There will always be someone who can make suggestions or just talk you through bad (and good) times. This is a good place to hang out!

Please tell us more about yourself as you feel comfortable doing.

Sally in North Idaho




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Re: Blepharospasm or not?

Re : Re: Blepharospasm or not? --- Sally - in - Idaho
Posted by Jordan Zweigoron (jordan zweigoron,Jordan Zweigoron), Mar 23,2001,00:15 Top of Thread Archive
Thanks for everyone's response to my question. Great bunch of people here. I'll keep you posted on what I learn.

Sally, responding to your question - I'm 36, male, married with 2 beautiful girls ages 1 & 4.

Like one of the responses I read, my problem came at a very stressful time; and although the stress has now been minimized, the problem remains. Just goes to show that a job is not worth getting all worked up over. Learned the hard way I guess.

Thx again for everyone's suggestions, and I'll keep up with the group.




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Re: Blepharospasm or not?

Re : Re: Blepharospasm or not? --- Jordan Zweigoron
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 23,2001,11:27 Top of Thread Archive
Hello Jordon. Glad to see you with us. I was diagnosed in December, 1999 by a neurologist. I got a big surprise during the examination when he asked me to walk heel to toe, and stand on one leg. I could not do it. I don't know if others experience this with BEB or not. I would be interested to know. What I did know, was that I was getting more accident prone. Missing steps, not being able to judge or react appropriately in rough terrain, tripping over the least little thing, running into things. I was doing this before medications were prescribed, so I assume it was part of the whole BEB/Meige package.



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Re: Blepharospasm or not?

Re : Re: Blepharospasm or not? --- Joanne Johnson
Posted by June in Toronto (June Floyd,June in Toronto), Mar 23,2001,12:38 Top of Thread Archive
Hi Joanne, the neuro had me tested with balance as well - when I stood on one leg and arms out to the sides, I was keeling over and didn't know it! I'm so much more accident prone as well than before beb/botox - falling down, also I can't judge depth or the terrain in general.

Take Care

June in Toronto




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Re: Blepharospasm or not?

Re : Re: Blepharospasm or not? --- Joanne Johnson
Posted by grace anne , Mar 23,2001,21:52 Top of Thread Archive
I had to do that walking thing also and I stumbled a little once. The report the doctor wrote up was "Normal". I defintely was/am accident prone at times. It seems to go in spurts. Maybe after I have some trip up, I really am cautious, almost afraid for a while. I'm real good at missing steps, curbs especially, problems in rough terrain, and also tripping over nothing to mention a few. Just tonight we were at Hallmark. I had ordered a wedding card in braille for a blind friend who is getting married. The girl pulled out two of them and laid them on the counter. I told her I only wanted one. When I went to pick up the card and it's envelope, I kept trying to pick up a blue envelope on the counter. Both my husband and the girl tried to tell me that was a picture on the counter and not an actual card. (: ): Did I feel dumb for a few seconds. My vision has gotten worse since this BEB also.

graceanne in port orchard




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Re: Blepharospasm or not?

Re : Re: Blepharospasm or not? --- Jordan Zweigoron
Posted by Kelly Saffell , Mar 23,2001,11:51 Top of Thread Archive
I am 32 with two beautiful girls as well-3 and almost 6! My "trigger" was childbirth. I developed BEB when my oldest,Morgan, was born and worsened quite a bit after my youngest, Cory. A neurologist specializing in movement disorders is probably your best bet. My jaw clenching was causing my muscles in my neck to get so tight and caused me to have alot of severe headaches. I'm also allergic to all pain relievers except tylenol since Cory was born so my options were limited. The Botox and TMJ appliance help tremendously!



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Re: Kelly/Beautiful Names

Re : Re: Blepharospasm or not? --- Kelly Saffell
Posted by June in Toronto (June Floyd,June in Toronto), Mar 23,2001,12:42 Top of Thread Archive
Morgan and Cory are such beautiful names - you must be so...proud of them, but....I can imagine how difficult it is to do all that is necessary for such a young family. Then again, when they smile at you, hold your hand, or any of those wonderful things children do, I bet (for the moment) you can almost forget your own problems right?

June in Toronto




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Re: Kelly/Beautiful Names

Re : Re: Kelly/Beautiful Names --- June in Toronto
Posted by Kelly Saffell , Mar 23,2001,17:30 Top of Thread Archive
Thanks for the compliment and yes, they can make me forget! When Morgan finished preK last spring I saw a picture she had drawn in her portfolio. It was a picture of me with no eyes and her teacher wrote "Mom's eyes are sick and the doctor took them out." Since we had never discussed my condition with her I was both shocked and upset. I knew right then that I had made the right decision to leave my job as a CPA a few months earlier. Working and caring for the girls was soooo hard and she could tell! They definitely keep me hopping!!!



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