new to this


Posted by Cliff Gilinsky , Jun 06,2001,16:36   Archive
Hi Folks, I just found out I have this thing. It started when I would walk through a sawmill with bright mercury vapor lights and progressed to florescent lights and TV. The doctor told me that florescents and mercury vapor do not cause this. My own research showed me that these are triggers. Can anyone comment on this? Thanks



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Re: new to this

Re : new to this --- Cliff Gilinsky
Posted by Virginia , Jun 06,2001,17:16 Top of Thread Archive
Welcome to the BB, Cliff. As you will probably find out, as a male, you are in the minority here, but please don't let that scare you away. The other guys come out of hiding every once in a while. Sorry you have BEB, but at least you have a name for your disorder - sometimes that can be the most frustrating part. If you haven't already, you might want to take the link to the main page and read the general info on BEB there.

As to your specific request. Most of us don't have any idea what caused our BEB (some cases can be traced to medications). However, for me and others on this board, fluorescent lights are a problem. It wasn't the first thing I noticed, but it definitely is a trigger for my eyes, as well as other "twitches" that I have (Meige).

What treatments are you getting and are they helping?

Virginia in AL




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Re: new to this

Re : new to this --- Cliff Gilinsky
Posted by Cliff Gilinsky , Jun 06,2001,17:34 Top of Thread Archive
Hello Virginia, I'm not getting any treatments yet. It's just getting into the part where I know what I have and finding out my options. I started out seeing my eye doctor and filed a workman's comp claim based on his recommendations that I needed different glasses. Got them, spasms stopped for awhile and then started up again. Worse at night with artifical lights. Then I could'nt watch TV without spasms. Went to a doctor of Ophthalmology and he told me I have Blepharospasm and I should use artifical tears and see a nerologist if it gets worse. Thank goodness for the computor where I can get some answers. Right now I'm concerned about keeping my job. Hope to get more info shortly and my options. Thank you for replying. Cliff



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Re: Welcome to the bulletin board

Re : Re: new to this --- Cliff Gilinsky
Posted by Shirley-Arkansas-USA , Jun 06,2001,18:01 Top of Thread Archive
Hi Cliff,
Welcome to the bulletin board. It will be helpful, like Virginia said, to read the BEBRF Main Pages which you will find at the top of the page. Also, get in touch with the Benign Essential Blepharospasm Research Foundation (BEBRF) in Texas. You will find their address in the "Welcome to Newcomers" at the top of this page. They can send you additional information and let you know of other people and support groups in your area and doctors close to you that are familiar with treating Blepharospasm. It is very important to find someone very knowledgeable about the disorder in order to get good treatment options. A neurologist that specializes in movement disorders is a good choice but you will have to see who is in your area. Some of us have to go a good ways to find someone good.

My Blepharospasm started with light sensitivity and blinking and then my eyes squeezing closed. I was soon unable to read or watch TV or drive my car. I did have to quit my job within a short time. Many people are able to keep on working. Most people with BEB get botox for the squeezing. Some medications are helpful. Everyone is a little different. Read all that you can about it and ask us what ever you like. There are many doctors out there that have never heard of Blepharospasm. It is a somewhat rare disorder.

If you are using eye drops, use some that are preservative free. Do check into your job options-just in case you do become unable to work. Many of us are unable to work and receive SS disability benefits.

Again welcome and ask us questions.
Maybe our guys will come out and tell you of their experiences.

Shirley in AR.




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Re: new to this

Re : new to this --- Cliff Gilinsky
Posted by Delaine Inman , Jun 06,2001,19:10 Top of Thread Archive
Hi Cliff and welcome to the BB. Sorry you have this disorder, but glad you found us. I had been a nurse for 27 years and had never heard of it. My first symptoms where difficulty with the lights in the meeting rooms and hallways at work. I thought it was my contacts bothering me. Then in Jan. 99, at the age of 48, I began blinking constanting while driving day or night. Both the sunlight and headlights made me cry. Then my left eye started closing while driving and watching TV or the computer and heart monitors at work. I was told I had dry eyes in March and asked for second opinion in a few weeks and was told I had BEB, but there was a treatment of injections and I'd be fine. The appointment to get fine was 4 weeks away. I rapidly got worse over the next 2 weeks. I was horrified when I was given a brochure by the BEBRF (after I asked for something in writing). No known cure, no known cause, Botox is temporary and is helpful for 95% of those who get it. I was one of the 5% so I had to stop working and go on disability in May of 99. I've had a partial myectomy and am on Klonopin 1/4mg 4 times a day and now the Botox does help me some for awile. At first I was scared, then angry that everything I tried didn't seem to help, but I finally reached a point I am coping fairly well. I have good and bad days and just go with the flow. Stress and fatigue is a hugh trigger to make things worse. Everyone is different, but I've learned so much and received so much support from this great group here on the BB. Tell us more about yourself and ask anything. There are no stupid questions.



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Re: new to this

Re : new to this --- Cliff Gilinsky
Posted by Sally - in - Idaho , Jun 06,2001,20:07 Top of Thread Archive
Hi Cliff,

I'm glad you found this site early in your diagnosis; it can really be a helpful place to ask questions. You are getting good replies and suggestions, so I'll just say, "Welcome!"

The photosensitivity is almost worse for me than the spasms, particularly since the spasms are controlled fairly well with Botox injections every eight weeks. Fluorescent lighting is like poison to me and I become rather disoriented when in it or outside in bright light.

Check in often and let us know how things are going for you. The guys must all be out playing golf or something. They've been in hiding lately.

Sally in North Idaho




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Re: new to this

Re : new to this --- Cliff Gilinsky
Posted by Lyn Patterson , Jun 07,2001,01:55 Top of Thread Archive
Hi from Western Australia, Cliff. I first had symptoms 12 years ago and it took a couple of years to get diagnosed. I was always light sensitive but I thought that was just because I am very fair. A while before the symptoms started I had a very sore right eye and an ophthalmologist discovered I had a whole row of ingrowing eyelashes on the lower lid. Whether this was a trigger I don't know. He zapped them out but now an again a few still grow back which is very annoying and certainly wouldn't help the condition.
Lyn



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