Eyes and Television


Posted by Christine Grainger , Sep 28,2001,05:32   Archive
I haven't found anyone to talk to about Blepharospasm and Dry Eye, no one has ever heard of it. Is there anyone out there who has trouble watching tv? Is there any way to overcome this? Driving and working on my computer are hard too. I only have the spasm in one eye, I find it all very tiring and would welcome any suggestions as to how to cope with this problem.
ps I've never used Bulletin Boards before, so hope I'm doing this right.



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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Delaine Inman , Sep 28,2001,08:25 Top of Thread Archive
Welcome to the BB, so sorry you have BEB and dry eyes. As far as the TV thing goes it is just one of the weird but common symptoms that go along with this disorder. Not everyone has it, but many do and to varying degrees. Mine came fairly soon with my first symptoms of difficulty driving. There are some tricks that work for some although many of us have found the brain sometimes learns to go around the tricks and they become less effective with time. I have to sit looking directly ahead to watch TV and I sit in a recliner with it all the way back so I can look out the bottom slits of my eyes. For awhile crocheting helped me, for some needlepoint, knitting or doing anything with the hands distracts the brain. I've also learned that some programs and movies are easier to watch than others. I don't do well with fast action and lots of bright lights or flashing lights on TV. If I go to the movie theater I go to one of the newer stadium seating types and sit on the top row and lean my head back. I also choose the movies that are not fast moving action or outdoor-bright sunshine. I put on my sunglasses after I am seated and wear them while watching. Eating or chewing gum helps some with TV or movies. Singing or humming help open the eyes sometimes. As far as the dry eyes go ....lots of drops, there are many good brands, but the thicker ones that have an oily texture. A lot of people have to use ointments at night. I recommend eye covers when you rest or sleep. If you take Botox you don't blink as often to lubricate the eyes and your eyes often don't close completely when you sleep or relax. Hope that helps. If you have one of the foundation brochures it mentions triggers such as driving, TV, sunlight, riding, walking, artificial lighting, fatigue, and stress also trigger spams. If you haven't notified the BEBRF, do so and get a packet and get on the mailing list. Also look for a support group in your area or individuals near you that the foundation can get you in touch with for support. Do you take Botox? Does it help? For how long? Do you have a good doctor. You said only one eye spasms....what about the other? Does it close, too. Many of us have one eye that is worse than the other. Do you have symptoms one side of your face? Has Hemifacial spasms been ruled out? Good luck.



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Re: Eyes and Television

Re : Re: Eyes and Television --- Delaine Inman
Posted by Christine Grainger , Sep 28,2001,16:39 Top of Thread Archive
Thank you all for your replies.I have been doing needlework, crocheting etc while I "watch", mainly listen, to TV. I haven't been to the movies for months, I can't bear the thought of looking at a big screen with all that movement. I do have trouble with both eyes, one is just worse than the other. I feel I have the dry eye under control, but not the spasms.Hemifacial spasm has never been mentioned, I'll have a read up about it.I don't know if my doctor is good or not, I feel I'm shunted around with no solutions. I have been tested for Sjogrens but it was negative, everything is dry, nose, mouth, skin,lips, hair etc. I live in New Zealand, apparently only one Doctor in our city, at the hospital, does Botox injections.I don't find any relief with sunglasses.
Thank you all again, it is a relief to know I'm not the only one in the world dealing with this.



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Re: Eyes and Television

Re : Re: Eyes and Television --- Christine Grainger
Posted by MaryNY , Sep 28,2001,19:39 Top of Thread Archive
Christine -Welcome to the BB, where you will find the most information and help concerning BEB! I think there is at lest one more person who posts from New Zealand. If you click onto "author profile", you can probably find it. Good luck to you - you are not alone! Mary



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Re: New Zealand-Anybody else out there?

Re : Re: Eyes and Television --- MaryNY
Posted by Shirley-Arkansas-USA , Sep 28,2001,19:47 Top of Thread Archive
There is a man from Cambridge, New Zealand that is registered. I think that there are others, too.
Come out, come out, where ever you are New Zealanders.



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Re: Eyes and Television

Re : Re: Eyes and Television --- Delaine Inman
Posted by Joann Humphrey , Sep 28,2001,22:26 Top of Thread Archive
Welcome to the BB, you have come to the right place for support, etc.
I find that sitting close to the TV helps & then I generally use my hands to keep the eyes open, but I mostly just listen. It's also been a couple of years since I've watched a movie, either at home or at the theater. Just too difficult. Things or work that just takes 20 or 30 min. seem best, then I take a break & later get back to it.
Joann in Ark. after 5 days in Shreveport. Had trouble getting on the BB on a strange computer. You folks were busy chatting I noticed.



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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Christel-California , Sep 28,2001,10:03 Top of Thread Archive
Hi Christine, Delaine pretty much filled you in, so I'd just like to say welcome to the Bulletin Board. You will certainly find a lot of people here you can talk to about Blepharospasm and Dry Eye and anything else related to this disorder, so you've come to the right place.
Like Delaine, I can only watch TV out of the slits of my eyes, I don't have a recliner, so have to scoot back on the couch or lie down to watch. I don't suffer from dry eye that badly and use eye drops only occasionally. I can't drive at all anymore and the sensory tricks I read about on this board don't seem to work for me. When my eyes slam shut and won't open at all, deep breathing usually helps.
You'll be getting lots of advice and tips as the day goes on, so welcome again and come back often.

Christel in Ca.




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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Shirley-Arkansas-USA , Sep 28,2001,11:41 Top of Thread Archive
Hi Christine and welcome to the bulletin board. I'm 49 and have had Blepharospasm for about 2 1/2 years. I get botox every 2-3 months.

One of the first symptoms I had was the inability to keep my eyes open to watch TV. I also had difficulty reading and driving and still do. I'm a little different than what Delaine and Christel described in how they are able to watch TV. It is best for me to sit fairly close to the TV and lower my head and look up to see the TV. I discovered this one day when I was sitting in a hospital room with my dad and looked up to glance at the TV and realized that I could actually watch a ceiling mounted TV. If I recline and try to look out of the slits of my eyes, then my eyes just close. Everyone is a little different as you will see and different things work for different people.

I can't read a newspaper or a book but am able to read on the computer if I blow the font size up real large. I do have to take frequent breaks from this though, as my eyes get tired.

I had surgery on my upper lids 5 months ago (an upper limited myectomy) and things have been better for me since then although, I definitely still do have problems. I'm just more functional now.

Like Delaine said, dry eyes usually goes right along with this and lots of preservative free eye drops are a must for through the day and a good eye ointment at night along with a sleep mask (preferably something that will keep your eyes closed) is helpful.

If you are very light sensitive, dark wrap-around sunglasses are helpful or any type sunglasses that block out the light coming in from the side,also. Some of us find a rose tint on our glasses called an FL-41 tint is helpful. The only place that I know of to get that is from Knighton Optical in Salt Lake City, Utah, though, in the States. It comes in three different shades.

I, also, wonder if Hemifacial Spasm has been ruled out in your case since you say that only one eye is effected. Some or most of us have one eye that is worse than the other but BEB does effect both eyes. If you are in the very early stages of this, though, you may only be noticing one eye having difficulty.. Hemifacial spasm almost always effects just one side of your face or eye. You might go up to the top of this bulletin board page and click on Main Pages and there will be information there that you can read over as you are able to.

Hope some of this helps

Shirley in AR. who had never been on a bulletin board or a computer before Blepharospasm. This is my support system beyond my family.




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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Kelly Saffell , Sep 28,2001,14:08 Top of Thread Archive
The other posts pretty well sum it up but I wanted to say welcome to the board. I'm sorry you have beb. I'm 32 years old, have had beb/meige for 6 years and have 2 daughters 6 and 3 1/2. I receive botox every 2 months. Driving is still a bear and I stay very close to home. Sometimes I can watch tv, sometimes not. When my eyes are really bad I lay on the couch on my side and hold my lids open. Not many shows are worth the effort however. When going to a movie I do exactly what Delaine does-sit at the very back and stay away from action! Sometimes I miss about half the movie and just listen when fighting my eyes gets too hard. When I chew at all my spasms intensify substantially so eating/gum makes me worse. I only have dry eyes when I wake up and use drops when I get out of bed. You will find that everyone is different and what works for one does not work for the other. I have spasms in both eyes but the left side of my face is worse that the right. Tell us more about yourself when you are comfortable.

Kelly in Dallas




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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Lyn Patterson , Sep 28,2001,21:51 Top of Thread Archive
Hi Christine

Welcome to the BB - I live at Lake Clifton which is about 140ks south of Perth, Western Australia.

You have come to the right place to learn all there is to know about BEB - this is the cutting edge, right, Shirley ?

I have had BEB for 12 years and had to deal with a doctor who only held clinics when he felt like it, regardless of his patients need for Botox. I didn't know there was anyone else in WA that I could go to. Thanks to the BB, Jenny from NZ who has parents in Perth told me she had been treated here by another doctor. This led me to research the situation more thoroughly - it is VERY difficult as most people - even some doctors - have never heard of BEB. I now have at least 2 options for treatment - all due to what I have learnt on this BB.

My spasms are in both eyes and mainly affect driving - the worst scenario - but also TV and reading. Funnily enough, the computer seems to be beneficial - I find I don't blink as much when using it. With the Botox, though, everything is fine for about 6-8 weeks then it starts wearing off.

When Jenny catches up with the BB I am sure she will contact you.

Keep posting as this is the best place you could possibly be.

Lyn on Grand Final day for the footy - alas, my team is not playing




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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Ann Doyle , Sep 29,2001,08:25 Top of Thread Archive
I found out that I cannot watch TV laying down. I have to sit up. The programs I chose are those that take more ears than eyes--News shows, stories, not comedy (a lot of it is visual).
I keep eye drops in my purse and in a drawer in the TV room. Ann Doyle



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Re: Eyes and Television

Re : Re: Eyes and Television --- Ann Doyle
Posted by Virginia , Sep 29,2001,10:31 Top of Thread Archive
Isn't it wonderful the way we are all so individualized in the way we cope with this condition. :-) At the conference, Dr. Daroff commented that he tells patients to "treat it like a friend", something with which you have a unique relationship. He has a strange sense of humor. But back to the point, I do better lying down. When my neck is supported, I rarely have any trouble keeping my eyes open and can watch all the TV I want - which is very little. This also works for reading, which is what I'd rather be doing.

Virginia in AL, with drops, gels and ointment all over the house.




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Re: Eyes and Television

Re : Re: Eyes and Television --- Virginia
Posted by Christel-California , Sep 29,2001,11:18 Top of Thread Archive
With friends like IT, who needs enemies?

Christel in Ca. who prefers friends who don't make her life miserable.




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Re: Eyes and Television

Re : Re: Eyes and Television --- Christel-California
Posted by Sally - in - Idaho , Sep 29,2001,15:50 Top of Thread Archive
Wonderful comeback, Christel! I'm with you on that.

Sally in North Idaho whose eyes are WIDE open right now and whose nose and skin all around are on fire because I thought I'd spice up my soup with one of those chili peppers that look like a big beautiful strawberry, took a teeny taste and thought it wasn't hot, then WHOOF! I grabbed a Kleenex to catch the drips from my head, had not washed my hands yet, and now am wondering when the burning will stop in and around my nose! Live and learn.




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Re: Eyes and Television

Re : Re: Eyes and Television --- Christel-California
Posted by Virginia , Sep 29,2001,17:13 Top of Thread Archive
I tend to think of it as one of those relatives that you don't really like, but are stuck with.



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Re: Eyes and Television

Re : Re: Eyes and Television --- Virginia
Posted by Christel-California , Sep 29,2001,20:04 Top of Thread Archive
Yeah, I have one of those too, but am not stuck with her as there is a big ocean between us, just have to endure for short periods when she comes visit.
I wonder where our Florence Nightingale of the Cyber World is today.
She can't still be doing her son's laundry. Hope she is o.k.

Christel in CA. worrying about Shirley




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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by Joann Humphrey , Oct 02,2001,11:07 Top of Thread Archive
Welcome to the BB. You did fine. This is a wonderful support group & everyone is very caring. I have Blepharospasm & get botox injctions every 3 months (which help some) & take clonazepam, which also help with the spasms. I do very little driving, I "listen" to TV, do very little reading. When I read I have to hold my eyes open. I'm 65 & do a little knitting & some volunteer work in the hosp. gift shop. Computer isn't easy either (again I have to hold at least one eye open)
Good luck to you.
Joann in Western Ark.



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Re: Eyes and Television

Re : Eyes and Television --- Christine Grainger
Posted by kathy , Oct 03,2001,11:55 Top of Thread Archive
i don't really watch that much t.v. either, but try to keep up on the news, however depressing it might be. i mainly watch it at night with phil; it is a low energy time for me. sometimes i keep the t.v. on for my parakeet, who definitely likes it, but of course he is a young bird and i have to monitor his shows.
i almost always have to wear my Fl41's for this.



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