motion and photosensitivity


Posted by coleen dennis , Apr 26,2001,20:00   Archive
It has been two weeks since my botox injections and my eyes are a little more open but still have the problems with the lights and sun. I find that I am not too bad when I am still but in a car or even walking around under the fluorescent lights at work or in the mall I can't walk straight and my eyes want to close. My right eye is worse than the left. I seem to be much better under regular lighting. Does this have anything to do with motion problems? I also have Fibromyalgia when has problems with motion. Maybe it is a combination of the two. What fun!

Coleen in Central PA who is looking forward to going somewhere with my hubby on Saturday to just relax. Not sure where yet.




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Re: motion and photosensitivity

Re : motion and photosensitivity --- coleen dennis
Posted by kathy , Apr 27,2001,13:42 Top of Thread Archive
maybe it does. I tried to take a walk the other day in the early morning sun with both a hat and my darkest Fl41's and almost walked directly into a parked truck. right now altho my injections are working better , my eyes are so ultra-light sensitive that i can't walk without hesitating everytime my eyes close, inside or out.



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Re: motion and photosensitivity

Re : motion and photosensitivity --- coleen dennis
Posted by Sally - in - Idaho , Apr 27,2001,16:58 Top of Thread Archive
Coleen ... Botox does NOT help with the sun and light, and most likely never will, except possibly to make the eyes even more sensitive. I can empathize with your wobbliness walking around in stores with fluorescent lights, or in open spaces in sunlight, or actually any place where you cannot trail your hand along on something to get your bearings. I feel kind of a loss of balance when I don't have something to hang onto or touch. People ask why I don't walk the block and a half to church ... well, I'd have to start out on Saturday night in order to be there on Sunday at 11:00. And I'd probably fall down a few times along the way!

You're experiencing just a few more symptoms that you'll learn to deal with in this quirky disorder.

Enjoy your R & R.

Sally in North Idaho where it is getting too hot for me!




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Re: motion and photosensitivity

Re : motion and photosensitivity --- coleen dennis
Posted by grace anne , Apr 27,2001,18:58 Top of Thread Archive
Coleen, I know exactly what you are going through cause I have the same exact problem with extreme light sensitivity. That's one of the reasons I don't get the injections any longer. It's a pain (sometimes literally) to have the eyes close down because of light sensitivity, so why should I get the injections that help it stay open more to "welcome in" more light to make it worse. That's my (and my husband's) personal opinion(s). Lately I've gotten to thinking of this disorder as an octopus. The "head" is the BEB and all the feelers are things light the other dystonias, light sensitivity, loss of balance, etc. I think it only follows that when you can't see good, it's easier to lose your balance. I recently got a partly white, partly red walking cane and it helps a lot with keeping the balance. Good luck.

graceanne in port orchard




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Re: motion and photosensitivity

Re : Re: motion and photosensitivity --- grace anne
Posted by Alice Baum , Apr 29,2001,11:53 Top of Thread Archive
I've just come in to read and your letter and it could have been written by me.
I just told my husband the same thing, that is, I'm not going to get the shots anymore either. Now instead of the blinking that was happening to shut out the sensitivity to light the bigger problem has become the light. It hurts my eyes and affects my balance as never before. All I can say between this problem and total bowel incontinance is this. When you think you've got it bad there's always someone with worse problems so I thank God for all the positive things in my life.

Alice




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Re: motion and photosensitivity

Re : motion and photosensitivity --- coleen dennis
Posted by Delaine Inman , Apr 28,2001,08:48 Top of Thread Archive
Being inside any moving vehicle(except a plane) brings out the worst in my BEB with spasms and increases light sensitiviy. I feel tortured the minute the movement starts. When I'm having a good day, I can drive with great effort and determination a few miles at a time. Walking in any business makes me worse. I too have Fibromyalgia and my balance and judgment of distance keeps me bruised from running into things, it's worse since BEB. So I can relate.



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Re: motion and photosensitivity

Re : motion and photosensitivity --- coleen dennis
Posted by Kelly Saffell , Apr 28,2001,13:44 Top of Thread Archive
I have been receiving botox for 5 years and have problems with increased light sensitivity and motion. I got a new pair of sunglasses and my neighbor wanted to try them on while we were at her pool. My eyes were in such spasm they freaked and gave them right back. Motion is very troublesome as well. Driving is always hard but even worse when they are doing construction and I have to drive close to a retaining wall or barrels. My kids are still young and just the motion of them splashing in the bath would make my eyes close. Even when my husband drives-which is as much as possible now-the motion is still an issue but at least my life doesn't depend on my eyes staying open! I have also noticed that cold, rain and wind makes my beb worse. I went down the street to target over christmas and it was cold, windy and drizzly outside and I got stuck in the parking lot with my eyes completely shut and could not open them back up. I finally took off my jacket, put it over my head to block out the wind and rain and was able to make it to my car. I wear polarized Oakley sunglasses that wrap completely around my eyes which helps but nothing is ever enough.



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