Re: light sensitivity
Owen, My BEB started with light sensitivity and then I had spasms that turned into eye closer for hours at a time. Your BEB may just be progressing and would be worse without the Botox. BEB and Botox effects each one of us so differently. In fact, I find that I can't get a handle on what to expect from by own BEB. As soon as I think--So this is how it's going to react to this(new meds or Botox or life experience) it changes. I used to be at my best in the AM and get progressively worse all day. Now it is just the opposite. And of course it could be the Botox. I've only had the series 2 times but so far they have been more help than hindrance. Ann Doyle
Re: light sensitivity
Hi and Welcome. Yes you are correct when you say symptoms differ. Some say the Botox makes their light sensitivity worse or they never had it until they received Botox. It was right there along with my first symtoms and was and still is one of my triggers for spasms. Until I had my parital myectomy I had to wear sunglasses indoors all the time, now I wear rose tinted glasses. If I go outside I wear dark sunglasses and if I ride or drive I have to clip on a second pair and still find I need a hat on, the visor down and dark tinted windows in the car. I had always been a squinter when in the sun, but BEB muliplied the sensitivity by a hugh amount. You might be interested in the posts about the FL41 rose tinted glasses that seem to be so helpful for most. Glad you found us, but so sorry you have this and that it took so long to get a correct diagnosis. Are you still working? Driving? Found a support group? Tell us more about yourself and keep us posted.Delaine in Columbia, TN (near Nashville)51 years old, had BEB since Jan. 1999 and diagnosed in May 99. Haven't worked as an RN since then.
Re: light sensitivity
I'm sorry that you have BEB but glad you were able to find the BB. I had BEB for 6 years before learning of the BB and the knowledge and support you can receive here is tremendous. My BEB began with heavy eyelids and progressed after 6 months to squeezing to the point that I couldn't get them open without deep breathing and relaxation. My light sensitivity is pretty bad especially with natural light. I wear sunglasses even at dusk or during a rain storm. I keep my blinds closed all the time and have found that wearing a ball cap is helpful when taking the kids to the pool. I wear polarized Oakly wrap around sunglasses and have for 5 years. I developed early BEB right after I had my first baby when I was 26 and was diagnosed 9 months later. I have been receiving botox for just over 5 years and am now 32. My girls are 6 and 3. I worked as a CPA for as long as I could fight it but gave it up 1 1/2 years ago. Caring for my children is all I can do but at least I can do that!Kelly in Dallas
Re: light sensitivity
Hi Owen: Sorry you have this miserable 'thing'. I too am light sensitive but find that a good pair of sunglasses are all I really need. My eyes flutter more than the extreme squeezing some have mentioned. So, there are differing degrees of this Blepharospasm. I get Botox about every 3/4 months and it does help. But, in my case, I also get a droopy left eye (ptosis). It goes away after a few weeks. I don't take any medications.
Re: light sensitivity
Hi Owen,
Welcome to the bulletin board. I'm glad that you posted. There really aren't that many people out there on the street or in the office or in our social groups that can relate and you can ask these questions. So we're it. We can all relate to your depression and frustration with this.
The light sensitivity started for me before I ever got any injections. BEB progressed rather rapidly over several months to the point of almost total shutdown before I had a diagnosis and was able to get botox. Some people do say that botox makes them more light sensitive but this has never been the case for me. I actually have more trouble with light sensitivity when the botox is wearing off.
I take Benadryl to help with my symptoms and it seems to help me with the light sensitivity. I've never heard anyone else say this, but I can tell a difference in that aspect of the disorder when I take or stop the Benadryl. I don't know why it helps me but it does.I also wear the FL-41 tinted glasses that we have talked about recently. Lightest tint for inside and the darkest for outside or when going into stores with bright lights. I like to wear wrap-around solar shield sunglasses over my regular glasses for outside, also. These can be bought at places like Wal-Mart for about $15.00. It seems to help to have the sides darkened and the solar shields do a good job of this. Some people wear caps or visors. The worsening could be related to the botox or your symptoms may just be progressing a little. You will probably just have to wait and see. With the botox, you probably are not blinking as much or as well as you should and your eyes may be drier causing an increase in your light sensitivity. Use preservative-free drops during the day and an ointment like Lacrilube or Moisture Eyes PM at night. Some of us have tried taking Bilberry and it does seem to help some with dryness and possibly light sensitivity, also. Again welcome to the bb and ask whatever you like. Everyone is a little different with their symptoms and what may help one may not help another. But we're usually full of suggestions. Shirley in AR.
Re: light sensitivity
Hi Owen,I'm glad that you posted. You've gotten good answers above, so I'll just say "Welcome!" Feel free to ask or say whatever you'd like, there is usually someone around in short order to respond. This is a good site to "let your hair down" with people who understand. Increasing sensitivity to light was my first symptom and progressed to where it was nearly intolerable. Also, dry eyes. I've been diagnosed for about 2 1/2 years and have been getting Botox every eight weeks since October 1999. It helps quite a lot with the spasms, but does nothing for the photosensitivity. We'll hope to hear more of you soon. Sally in North Idaho, where it is 90s and HOT.
Thanks!!
I'm not quite sure this reply gets to everyone but I'll assume so. Thanks for all of the responses - It means a lot. I'll try and answer everything asked here:Like Kelly, I have two daughters. Claudia 6 and Audrey 3.
I thought until I tried to pick up Claudia today that I was still driving. I made it a couple miles and couldn't go further. Stupidly I left my cell phone at home... I am working, sort of. I'm fortunate to own an insurance brokerage with a couple partners and a bunch of supportive employees. Botox has eliminated my spasms except for times when I am in bright light. Bright light is extremely painfull now - Even with dark glasses. I'm hoping the FL41's I ordered will get here soon. Benadryl knocked me out. I had a good nap though... I am seeing my opthamologist tomorrow but I don't think he knows much about this condition. Again, Thanks to everyone. If I can ever be of help please let me know. My email address is owent@owen-dunn.com
Re: light sensitivity
Yes Owen, you'll be happy to get responses on the BB. We're all different but everyone has been very supportive. I first was bothered with excessive blinking. It took over 2 yrs. for me to be diagnosed with bleph. I get the botox injections every 3 months, but seem to need them more often. I think it's helping me less & less each time. It was 2 yrs. ago when I was first diagnosed. My eyes are very light sensitive, but I hadn't related it to botox. I'm looking forward to the Scottsdale conference for more info.
Re: light sensitivity
Owen welcome to the bulletin board where you can always find someone to answer your questions. I have had bleph. since l994. I have been sensitive to light since I was in my 20's. I can remember my eye doctor mentioning it one of the first times I had my eyes tested. I used to just squint a lot in bright light, now when I step out into the sunlight my eyes calmp shut and it might be awhile before I can get them open. Usually I don't wear sunglasses except when I'm driving or riding in the car.
Billie
Re: light sensitivity
Extreme light sensitivity was one of my earliest symptoms. I used to wear 4 layers of sunglasses and still was painfully light sensitive. Actually, that was one of the ways I realized thas Sjogren's was NOT my correct diagnosis, b/c when I asked them (on their email list) about how they handled that, I got no responses! Botox helped. I now have FL41 tint on my indoor lenses, and for outdoors, I wear "glacier glasses" - they have leather side shields and covered nose bridge to keep out air, and they are tinted gray 95%. Can be purchased at outdoors adventure store, but I got mine from Opticus in Boulder, CO - made with prescription.
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