Photosensitivety


Posted by Alice Baum , Apr 14,2001,19:27   Archive
I was diagnosed with BP three months ago and have since received Botox injections.
Four shots, two in upper and two in lower lids. The first set was started with a low dosage of 25 was Jan 26th. The second dosage 50 given April 6th. It has definitely taken effect to stop the incessant blinking.
My big problem is extreme photosensitivity. I cannot go into the supermarkets or stores with fluorescent lighting. Being out in the sun kills my eyes. I'm wearing two pair of dark glasses outside and one pair inside. What is going on? Is this a part of BP and if it is what could possibly cause what once were healthy eyes to become so sensitive to light? HELP?
Does any body else have this problem? The only medication I take is for thyroid (Synthroid)



Recommend Current pageAuthor Profile
Replies to this message


Re: Photosensitivety

Re : Photosensitivety --- Alice Baum
Posted by Virginia , Apr 14,2001,21:35 Top of Thread Archive
Many of us on the BB experience photophobia. In general we cope like you do, by wearing sunglasses and/or hats and visors. Fluorescent lighting, in particular, seems to be a problem. It is interesting that you did not notice this before you had injections. I think I've been light sensitive all my life. It is probable that it is the BEB that is causing the problem, although the botox may make it worse. I checked a web site (just out of curiosity) which said that photophobia can be caused by central nervous system disorders (of which BEB is one). It also said that botulism can cause photophobia. I don't think any of us are getting botulism from the botox, but I thought that was interesting.

Some of us wear sunglasses with a special coating called FL-41 made by Knighton Optical in Utah. The coating can be applied in three shades. I use the 85% coating for outside and the 55% for indoors. See the site below for more information.

Virginia in AL Related link: http://www.knightonoptical.com/page7.html




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Photosensitivety

Re : Photosensitivety --- Alice Baum
Posted by Delaine Inman , Apr 14,2001,22:27 Top of Thread Archive
Welcome. So glad you stopped by to ask questions and hope you will become a regular. This is a wonderful place to get information and support. Virginia gave you good info. I too have always been sensitive to light, but when my BEB started it was one of my first and worst symptoms and still is a problem. I wear the rose tinted glasses indoors and the darkest sunglasses and a second pair clipped to them when I'm in the car. Outside I can get by with one pair of sunglasses and a hat or cap. Lighting in stores and public places are really uncomfortable and trigger my spasms.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Photosensitivety

Re : Photosensitivety --- Alice Baum
Posted by grace anne , Apr 15,2001,00:05 Top of Thread Archive
So glad you posted here where the best are always around to help in any way they can.
I have had severe light sensitivity for eons and since this BEB, it seems to have gotten worse. I have to wear two pairs of glasses especially if I go out. Sometimes my eyes hurt so much that I have to use them both indoors. The tinted glasses that was suggested are wonderful and almost a must. Visors, ball caps are a great help. I found wearing an eye patch at times really help especially with fluorescent lighting. Although both eyes are affected, my right eye is the worse most the time. Another thing that has helped a great deal is a special film covering for the windows at home. They really cut down on the UV and as a bonus, it keeps the house warmer in the winter and cooler in the summer. My husband also has put in dimmer switches and a couple of 3 way bulbs. That has helped a lot also.

graceanne in port orchard




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Photosensitivity

Re : Photosensitivety --- Alice Baum
Posted by June in Toronto (June Floyd,June in Toronto), Apr 15,2001,07:44 Top of Thread Archive
Hi Alice, when I look back I realise I was sensitive to light even in my teens - in the U.K. the sun didn't shine very much and I still had to wear sun glasses! I believe the botox makes the eyes even more sensitive to light. Last night, my husband and I were out at a restaurant - a special occasion - I hadn't been out in a couple of months I was really looking forward to it. We blew out the candle on our table, but even the one on another table disturbed me so much. My husband had to lean forward and I had to lean back, just to block out the flickering from the candle! I think a lot of us beb'ers are sensitive to all kinds of light, especially fluorescent. I do take bilberry tincture (a herb) and it helps light sensitivity somewhat - it was found to during WW2 for the pilots in the U.K.

Keep posting and take care

June in Toronto

--modified by June in Toronto at Mon, Apr 16, 2001, 16:03:11




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Thanks!

Re : Re: Photosensitivety --- June in Toronto
Posted by Alice Baum , Apr 15,2001,12:05 Top of Thread Archive
Thank you all for your caring responses. I'll look into that link posted above for the glasses.

WOW! Just when you think you're going through something unique and you're all alone you find others going through the same and worse.

Bless you all, Alice




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Photosensitivety

Re : Photosensitivety --- Alice Baum
Posted by Dee in OR , Apr 16,2001,11:04 Top of Thread Archive
Hi Alice and welcome to our BB. I'm not that sensitive to light but I did get the FL-41 tint on my prescription glasses and I really like it. I just sent my glasses to Chuck at the University of Utah and he did the rest for a very low fee. Good luck and please keep posting. You are not alone and it is only through this BB that we can reach out to each other and give our support. Oh, I take synthroid too.

Dee in Oregon

--modified by Dee in OR at Mon, Apr 16, 2001, 11:05:50




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Photosensitivety

Re : Photosensitivety --- Alice Baum
Posted by Judi in NC , Apr 17,2001,11:57 Top of Thread Archive
When I first have the Botox injections my eyes are fine with no photosensitivity for about the first month, but then as the Botox slowly wears off my eyes become very sensitive to light. If I come out of a building into the sunlight my eyelids slam shut unless I think to purt my sunglasses on before walking out. Dept store fluorescent lights are also a killer.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile