Blepharospasm Bulletin Board

Do you tell people about your condition?
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Posted by: Kathleen
02/27/2004, 08:55:06


I work at a job where I frequently have to meet with small groups of people who don't know me. I also teach part time at a local university and have a new group of students every couple months. I never know if I should just explain to people about my blepharospasms (not always well controlled with the botox, yet) or wait until somebody asks me. What do you do?



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Re: Do you tell people about your condition?
Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: Lynn Yarbrough
02/27/2004, 10:51:51


Since the Botox works so well for me, I rarely have a problem with explaining it to people. On one occasion at least, my spasms were a real problem, so I developed a short spiel that I thought told the truth while assuring my listeners that I was not off my rocker. It's something like this:

"You may have noticed that I blink and squeeze my eyelids a lot. I have a spastic blink reflex, due to a neurological condition called BEB. I am getting treatment for it, and it will get better in a few days."

If this explanation spawns more questions, I usually continue with something like,

"BEB is the nickname for Benign Essential Blepharospasms, which is a term I'm quite sure you never heard of before. It's not painful, but it is annoying, as I'm sure you can imagine. There is an organization of sufferers of this condition, called BEBRF, and I'm the Riverside County representative for this Research Foundation."

At about this point their eyes glaze over or they begin to snore and I go on to something else ...

Sometimes they inquire about the treatment, and I usually answer "You don't really want to know." And if they press me, I describe the procedure of injecting Botox into the eyelids, which used to gross people out more than it does now, since Botox has become chic.

--- Lynn




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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Lynn Yarbrough Top of thread Archive
Posted by: Kathleen
02/27/2004, 16:30:51


Thanks, Lynn. I love your sense of humor. A lot of my friends tease me that they are envious of my ability to get botox and have it paid for by insurance - I tell them I'd be happy to give them the condition that requires the injections if only I could.



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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Lynn Yarbrough Top of thread Archive
Posted by: Claire from Canada
02/28/2004, 07:50:56


Hi!
I regularly tell people at work especially. I'm the human resources manager in a call centre. I interview in groups and I often have to make presentations to small and large groups. With a new group of hires, for example, I briefly explain my eye and face (Meige!) situation when I introduce myself to them. It avoids questions (are you ok, is the light too bright, are you tired, etc). Especially since I have Meige too, and it leads to trouble speaking and breathing, I must say something or people get so concerned wondering what's wrong with me that they are not listening to my presentations! Just yesterday, one of our managers told me that I always look at her sternly when she talks to me; poor her! She was concerned for nothing, I just told her that I can't control what my eyes are doing!

I also consider that telling people raises awareness about bebrf.

Have a nice week-end!

Claire from Canada




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Re: Do you tell people about your condition?
Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: Mary, upstate NY
02/27/2004, 19:25:45


Every chance I get! But I do "keep it short"...."I have a neurological condition that causes my eyes to spasm." If I think they're interested, I usually say more. I keep asking for brochures from the foundation, and hand them out to those who seem really interested. (Including many drs., residents, nurses, students, etc.) I am not involved in a daily job where I have to face the public, so it's not a frequent problem for me, but most of the people that I know, know about my condition. As you said, some are envious that I can get Botox, and I would gladly change places with them! Mary



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Re: Do you tell people about your condition?
Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: Debbie
02/27/2004, 19:38:01


Hello Kathleen. Welcome to our board!

The answer to your question is that I haven't told anybody at work about my condition, because it is never, ever evident there. Only my family and close friends know I have BEB!

It's hard to explain, but when I'm focused on my teaching job, my eyes don't give me a hard time. On the other hand, when I go home, I find I have to lie down and rest and close them in order to recuperate.

All I can suggest is getting as much sleep as possible (this really helps) and resting on and off during the day, whenever possible, with your eyes closed. This helps me a lot.

I also find that an occasional massage seems to help relax my muscles and gives me relief in the eye area, albeit temporarily, but still, it sure does feel good!

Best of luck to you,
Debbie




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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Debbie Top of thread Archive
Posted by: Shelley
02/27/2004, 20:33:48


My symptoms aren't all that obvious most of the time. What people DO notice is that I have lost so much weight, look really tired and sleepy all the time, pale, and go to the doctor a LOT!!! So that leads to an explanation of the dystonia. I do keep it short - I just get tired of talking about it.
Shelley



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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition? -- Shelley Top of thread Archive
Posted by: Debbie
02/28/2004, 09:01:56


Dear Shelley,

I was shocked when I read your post! Do you attribute your weight loss to BEB? Apparently you have trouble sleeping too--also BEB-related?

I am so sorry. And I can certainly understand your getting tired of talking about it.

By the way, on a more frivolous note, I did go out and buy some Bobbi Brown waterproof mascara last week.....seems great for blepharospastic eyelids/lashes! Remember our "shallow ladies" conversation??!! :-)

Your BEB BB buddy,
Debbie




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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Debbie Top of thread Archive
Posted by: Shelley
02/28/2004, 11:33:22


Dear Debbie - OOOOHHH, I got some money, 'cause I just got paid!! Bobbie Brown is sounding good!!

I lost weight because I can't chew. I can't sleep because of stress and giving up meds that help the dystonia a bit but are not worth the daily grogginess and clumsiness they cause. I am currently trying to find a balance of meds for sleep and depression, but as we know, it takes SO LONG!!! I keep trying things, they don't work, so we try to figure out what to substitute. I'm just happy that I have great doctors that are willing to work with me, whatever it takes. And good insurance. I really feel so much better without the meds. Being off them allows me to work much more easily. Now, if I could just talk!!!

Shelley




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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Shelley Top of thread Archive
Posted by: Ann Doyle
02/28/2004, 14:55:50


I am 73 but have always gone to collage even after my degree for fun. I'm a professional student.
I had one teacher that blinked all the time , this was before I had BEB/Meige, I didn't think anything about it except maybe the light bothered her.
For sleep I sometimes use Advil PM. If that doesn't work, I use 1/2 or sometimes a whole ambien. One of the side effects of Ambien is that it might make you drowsy. DAH! Ann Doyle



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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Ann Doyle Top of thread Archive
Posted by: Shelley
02/28/2004, 19:35:34


Ann - I do take Ambien every night. Last night, I finally slept over 7 hours. But I am not as alert in the morning. That's okay, though, I just need sleep!

I used to be a perpetual student before it got so expensive!!!
Shelley




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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Shelley Top of thread Archive
Posted by: Ann Doyle
02/29/2004, 10:51:36


Once you hit 55 in Ky it is free with a Donavan scholorship. Just have to buy the books and pay a parking fee. Ann D



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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Ann Doyle Top of thread Archive
Posted by: Norma from Maine
02/28/2004, 19:37:26


HI everyone! I'm new to this Board.Have enjoyed reading al your questions and replys. If I am working with someone new and my eyes are acting up, I let them know that I have BEB and that I take BOtox injections for them. I try to keep the explanations short, but sometimes I can get carried away if they're listening intently. I feel less embarrassed about the disease if I can talk about it.h



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WELCOME NORMA FROM MAINE
Re: Re: Do you tell people about your condition?/Shelley -- Norma from Maine Top of thread Archive
Posted by: June in Toronto
02/29/2004, 06:07:29


Welcome to the beb bb Norma - hope you will continue to post and be part of our special group. Best wishes

June in Toronto, Canada




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Re: WELCOME NORMA FROM MAINE
Re: WELCOME NORMA FROM MAINE -- June in Toronto Top of thread Archive
Posted by: Ann Doyle
02/29/2004, 10:53:08


If they are listening intentally, they are interested. You can tell when they aren't and quit. Ann



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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Shelley Top of thread Archive
Posted by: dottie
02/29/2004, 15:36:31


Shelley, I drink Valerian root tea to calm me and to help me sleep, but I know all of us are different. You buy Valerian root capsules in a health food store, and put 2 capsules in a cup and pour hot water over top, and a teaspoon of honey. It calms me and I can sleep. I hope this might help.
Dottie


Modified by dottie at Sun, Feb 29, 2004, 15:37:02

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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- dottie Top of thread Archive
Posted by: Shelley
02/29/2004, 17:12:32


Thanks, Dottie. I go to Lassen's a lot, always looking for something healthy to drink!! I will check out the Valerian tea.
Shelley



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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- Shelley Top of thread Archive
Posted by: catherine pender
02/29/2004, 17:46:40


Shelley

You can also get vallarian spray. Its easy to carry in your purse and it is also good for anxiety. Comes in a drop too

Catherine




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Re: Do you tell people about your condition?/Shelley
Re: Re: Do you tell people about your condition?/Shelley -- catherine pender Top of thread Archive
Posted by: Evelyn
03/01/2004, 16:33:24


As many know, I don't have BEB...just many other problems. I take Valerian Root tabs for back and muscle pain occasionally. I try not to use it often, because it slows me down the day after I take it.
Evelyn



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Re: Valarian in Canada eh?
Re: Re: Do you tell people about your condition?/Shelley -- catherine pender Top of thread Archive
Posted by: June in Toronto
03/02/2004, 04:16:14


I didn't think they sold valarian in Canada, Catharine -I'll have to check out my local health food store about that. Thanks

June in Toronto -you know where that is:-)




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Re: Do you tell people about your condition?
Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: PDB
02/28/2004, 21:48:30


I have to wear a wied brimmed hat and dark glasses indoors to control as best I can the reaction to light, which varies from room to room and with lighting conditions, so I tell people I have a condition that is light sensitive. I wear a typical Aussie bushman's wide brimmed hat, and that and the dark glasses have my business colleagues thinkign I'm either over doing my Aussie heritage, or (because I work in the music industry), I'm just trying to be cool like the artists - which is the best angle to avoid unnecessary conversations. I am working towards fitting in the "not many people know about BEB" speach, but being a cool Aussie is simpler.

Pete in London




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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- PDB Top of thread Archive
Posted by: Karen
02/28/2004, 22:00:16


I'm having a hard time with it. I know it's still "new" to me, but I'm use to being very independent as far as doing what I wanted when I wanted to. I hate the thought of not being able to drive responsibly. I'm fighting it, big time.

I don't want to be stared at or talked about behind my back or sympathized; therefore, I am avoiding social situations like the plague. Including family affairs. I'm too miserable to enjoy it anyway, so what's the point?

Sorry. I'm really down about this whole thing. All the things I really love to do are almost tabu.



Modified by Karen at Sat, Feb 28, 2004, 22:01:32

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Re: Avoiding Social Situations/Karen
Re: Re: Do you tell people about your condition? -- Karen Top of thread Archive
Posted by: June in Toronto
02/29/2004, 06:17:03


I think many of us don't socialise as we used to Karen. I know its getting harder and harder for me to accompany my husband either when he plays in a jazz band (keyboard) or we attend others which is a big part of our life. I grew up loving traditional jazz in London, U.K. in the 50's when it was so very `in' and I love the music. I find now that so many people at these venues are using flash cameras to take photos and it `kills me' - I just dread it. Dark glasses in those cases don't help and I'm just plain miserable and pay for it with headaches and closed eyes. However, I do try and see family and friends as much as possible - surely they can try and understand about this disease of mine? In general they do understand and are very careful with lights, making sure I'm sitting with my back to an open window in a restaurant, blowing out the candles on the table, and not having flashing lights on a Christmas tree for example. We mustn't isolate ourselves too much - please try - I can tell you are depressed about this all. Chin up and hang in there - Best wishes as always.

June in Toronto, Canada whose hubby had 2 band gigs yesterday and I stayed home and spoiled myself instead of facing the lights!




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Re: Spoil yourself instead
Re: Re: Avoiding Social Situations/Karen -- June in Toronto Top of thread Archive
Posted by: PDB
02/29/2004, 06:42:02


June talked about staying home and "spoiling myself instead". Given I found myself saying "forget the cholesterol, I can only handle one problem at a time", and getting stuck into the crispy bacon on a recent trip, I wonder how many of us have taken on pleasant or fun compensations to distract from the main event, and I wonder what they are?

PDB




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Re: Spoil yourself instead/Karen
Re: Re: Spoil yourself instead -- PDB Top of thread Archive
Posted by: Barbara
02/29/2004, 09:49:38


Oh how I cn relate to your situaton about social isolation. I have very bad meige and it really acts up when I'm talking to people or out in public. This has been going on for over 10 years now. Botox hasn't really stopped the movements only made my face more contorted looking. I have periods when it's not as bad as other times but it still charges back. I have worked very hard at trying to overcome this condition but I still notice the stares. It is hard for woman I think to have visible facial distortions whether its the eyes or the mouth. I used to be such a social person that this adjustment has been the most difficult for me. I found myself dressing sloppy and not caring how I looked. But I've changed that and get a great hair style and color and now make an effort to dress well. It's amazing how much better that makes you feel. Stay on the board. The people I have read here always provide me the courage to continue and overcome. Try to go to conferences. I have only gone to one and didn't know anyone there but still I felt such a loving and compassionate atmosphere of acceptance. Was afraid to go for years but even when I didn't know anyone you still meet some incredible inspiring people.



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Re: Spoil yourself instead
Re: Re: Spoil yourself instead -- PDB Top of thread Archive
Posted by: Ann Doyle
02/29/2004, 11:15:03


There are weeks when I can barely see and can't go out of the house. I went to bed and ate and gained a lot of weight. Then I thought of all the lonely shut ins mostly widows who stay home. I am 73 and do volunteer work and have met a lot of older people.
I started sending emails that I printed out that are funny or spiritual or uplifting or unusual. They don't have email but my email friends send them to me and I print them out and scan them. I print their name and addresses on labels from a file, I have stickers of my return address. I don't have to see much to do it and it takes a lot of time and makes me feel good.
Sometimes when my eyes are working, I can cut down 5 pages to two. I can get six pages in an envelope for 37 cents. Between the postage and the ink it dan be expensive, I just consider it a charity.
If anyone has any good ones, please feel free to send them to me. I left my email address. Ann Doyle



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Re: Avoiding Social Situations/Karen
Re: Re: Avoiding Social Situations/Karen -- June in Toronto Top of thread Archive
Posted by: Ann Doyle
02/29/2004, 11:03:06


I used to go to the Blue Note in Chicago, Ill in the 50's and drink Moscow Mules--Big Kick. Don't drink anymore. I like all kinds of music except, I didn't like the 5 tone scale oriental but then we lived in Japan for awile and I learned to like some of it too.
I was a math and Music major. No talent in music, just liked it. I am thiking of taking French horn lessons but don't know if I can. My lips are so thin. Keep putting it off. Just an excuse. Ann



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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Karen Top of thread Archive
Posted by: Ann Doyle
02/29/2004, 10:57:32


Not driving is the hardest thing for me. I can drive for about 5-6 weeks after Botox and then I can't expept or rare occasions I will have a good day. My husban, who is retired will take me anyplace, anytime but it is not the same as deciding to go from this store to that one and changing your mind and you don't know how long it will take but we manage. Ann



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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Karen Top of thread Archive
Posted by: Claire from Canada
03/04/2004, 20:26:08


Karen,

I felt just like you, especially at first. I thought I just could not have as much fun as I used to, which I still don't. But, after a while, since I am reasonably young (39), and I have a 5 yr old daughter and terrific husband (he is the army fellow in the family photos), I had to resign myself to following along and taking part in at least some activities. My family still needs me, so I put a smile on (that's not easy physically and mentally too sometimes), but I do it. There are people out there with all kinds of stuff 'wrong' with them and they are not hiding; some are hiding and I feel so sad for them, but I decided not to be one of them. I don't want this to get to me.

Do not despair and keep writing to us. Only we can truly understand each other, I think.

Claire from Canada




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Re: Do you tell people about your condition?
Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: Kathleen
03/01/2004, 08:26:35


Thanks. I always kind of feel like I'm making too big a deal of it if I talk about it, but have had complete strangers come up to me and ask if I'm ok. I'm still working on getting to the stage of adjustment to this disorder where I'm not self conscious all the time. I can relate to those of you who talk about social isolation and depression. I think, though, that was worse before I was diagnosed. Now at least I can put a name to what is happening to my eyes, which makes it easier to explain if someone does ask. I had my 2nd botox on Wednesday and was feeling really sorry for myself, so before I went back to work, I engaged in a little retail therapy. I bought a bright red toaster and set it on my counter when I got home. It is one of the more impractical things I've ever bought, but it made me feel better for some reason!



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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: Ann Doyle
03/01/2004, 11:19:10


When I am walking down the hall in a peculiar fashion at work and someone asks if I am OK, I am glad someone cares. I just tell them yes, I'll be all right. Ann Doyle



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Re: Do you tell people about your condition?
Re: Re: Do you tell people about your condition? -- Kathleen Top of thread Archive
Posted by: dottie
03/02/2004, 11:44:44


I have never told anybody about my condition, only my family, but if someone keeps looking at me I tell them that I suffer from blepharospasm, which they have never heard of. I went to my doctor and the office staff couldn't pronounce it, so it becomes very frustrating. With blepharospasm you need to make time for you. Take a hot bath in the evening, or do something that pampers you. The hot bath is my favorite, 2 T. ginger in a hot bath relaxes you and lets me sleep very well.
Dottie


Modified by dottie at Tue, Mar 02, 2004, 11:45:27

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