FL-41 tinted lense


Posted by andrew karter , Feb 16,2001,23:12   Archive
Dear Blepharospasm Bulletin Board! This is my first attempt at posting a message. I was wondering if any of you have experience with FL-41 tinted lenses. I read about them in the latest newsletter (page 4). I was about to order a new prescription glasses and thought I should check out the possibility of getting the FL-41 if it would help. I have had BEB for about 2 years. Botox has only been of limited effectiveness for me (it works great, but wears off after one month). Thought this lens would be worth a try. Also, the article mentioned blue and rose tint (the latter being good for migranes). Which one is the best for BEB? And where can I order this type of lens. Our optometry dept hadn't any information.

Thanks for any feedback!
Andrew Karter




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Re: FL-41 tinted lense

Re : FL-41 tinted lense --- andrew karter
Posted by andrew karter , Feb 16,2001,23:40 Top of Thread Archive
Sorry guys! I didn't do a search through your bulletin board until AFTER I posted my message (I am new at this!). Now I see that you have been "chatting it up" about FL-41. I read through all of your messages and found the manufacturer info. Glad to see that there is so much communication and support. I think I am going to give it a try (either the 35% or 55% for indoor use?). Appreciate the help!



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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- andrew karter
Posted by June in Toronto (June Floyd,June in Toronto), Feb 17,2001,06:35 Top of Thread Archive
Welcome to the bb Andrew. Glad you did a `search' and found out the information on the tinted glasses. I haven't tried them myself (don't wear glass all the time), but others on the bb really like them. Good luck with them and continue posting. June in Toronto



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Re: FL-41 tinted lenses

Re : Re: FL-41 tinted lense --- andrew karter
Posted by Virginia , Feb 17,2001,08:24 Top of Thread Archive
Welcome to the BB and good work finding the info on the FL-41 lenses. I am one of the believers. I have two pairs - 55% for indoors for me, although others use the 35%. I hope you also took the link to the BEBRF main pages. There is a lot of good information there as well as contact info for the BEBRF.

Virginia in AL




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Re: FL-41 tinted lenses

Re : Re: FL-41 tinted lenses --- Virginia
Posted by andrew karter , Feb 17,2001,17:47 Top of Thread Archive
Thanks Virginia and June! I have gone to the BEBRF main pages and read through most of the literature. Great information. One more quick question, do the tinted glasses look very "rosey" from the outside? Some tint colors are not perceptable from the outside, others look very obvious. Being a guy, I wondered if I am going to look funny in rose-tinted glasses (Although, the blinking probably looks more funny than the tint!).

Andy in California




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Re: FL-41 tinted lenses

Re : Re: FL-41 tinted lenses --- andrew karter
Posted by Mary , Feb 17,2001,19:41 Top of Thread Archive
Hi Andrew, and welcome to the BB. I received my FL-41 tinted glasses a few weeks ago. Evidently, they got lost in the mail room, so I had to call about them. I haven't received a bill for them yet, so I don't know what they cost, altho, from other posts, I'm expecting about $25. I sent in a pair of Varilux prescription glasses, after I had received a new pair. I am very pleased so far. I got the darkest tint (I think they said it's 85%) for driving in the sun and snow, especially. I was very surprised that they are not really dark - it must be the TYPE of tint they use. I was expecting a Polaraid-type of tint, but it isn't that. They just cut the glare from the sun in a different way. When I drive on a really bright day, I slip on my clip-on Polaraids, and everything has a really pretty, slightly purple look! So far, I'm saying I would reccommend them to anyone. It's worth $25, anyway!
Mary in NY



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Re: FL-41 tinted lenses

Re : Re: FL-41 tinted lenses --- andrew karter
Posted by Virginia , Feb 18,2001,10:18 Top of Thread Archive
The glasses do have a noticeable rose color. I had reservations about that, too, as that would not have been my choice. But they work for me and that was more important. I, too, sometimes have to wear additional sunglasses over the tinted ones on very sunny days when I drive. As far as being a guy with rose colored glasses, at least one of the regular posters, Alan Phair, was one of the first I knew of to get the tints and he seems pleased with them. There probably are other men who wear them - I just can't remember who, maybe you will hear from them. I think what it usually comes down to is how much benefit you get from them. That can make any color acceptable.

Virginia in sunny, but cold AL, relieved that the rain has finally stopped.

p.s. The weather report is optional. As you will see, sometimes other comments are made in closing - or none at all. Glad to have you join us.




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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- andrew karter
Posted by Shirley-Arkansas-USA , Feb 18,2001,17:39 Top of Thread Archive
Hi Andrew, Welcome to the bulletin board. You've already been busy talking to people and I'm such a busy body that I had to get in on things, too. I'm 49 and was diagnosed with BEB about 2 years ago. Apraxia is my major problem at present.
Seems like I saw your name in the registration thing quite some time ago, but knew that you had not posted. Or I could be mistaken. Glad you decided to post. There really are quite a few men who post but they seem to have disappeared for a time. They'll be back, though.
I have two pair of the FL-41 tinted glasses. A light pair and the darkest tint. The darkest tint works real well outside and also in stores like Best Buy, Home Depot, etc, that have a lot of real bright over head lighting.
I don't really notice a problem with the rose tint making things look more red. Red cars are prettier with them on. :-) I know that Alan Phair has a pair of them and they look nice on him. They just seem to subdue the lighting a little inside. I liked mine well enough that I got the second pair done.
One of my pair is with the progressive lenses and I did not have the problem that Delaine was talking about. The progressive lenses do just have to be at the right angle or tilt for you to see properly out of them. I've not had trouble with mine. My other pair is with a lined bifocal which is the darkest tint and I use them for sunglasses for outside and department stores.

Good to have you with us.

Shirley in AR. I don't always do weather reports. But then I get myself in more trouble than most.




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Re: FL-41 tinted lense

Re : FL-41 tinted lense --- andrew karter
Posted by Delaine Inman , Feb 17,2001,17:42 Top of Thread Archive
Welcome to the BB. We hope you'll visit often and let us know more about you. We share a lot of good information and humor which is good medicine for the mind and the body. I'm 50 and have had BEB about 2 years. Some people have had great results from the FL-41 lenses. I am the only one I know who didn't because I couldn't get the progressive lenses to position just right so I got my local eyelab to formulate a tint as close as possible in the rose tint...they thought I was a little picky....but we finally came up with something that works for me. Chuck in Utah was great and tried twice but without luck, but like I said everyone else seems extremely happy with the rose which come in different levels of protection. Go for it and good luck. It is not very expensive to do.



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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- Delaine Inman
Posted by andrew karter , Feb 17,2001,17:58 Top of Thread Archive
Thanks Delaine! Wow...this chat room thing is fun. I will visit more often. I see that you are also a relatively young onset BEB like myself. I have also had it for about two years and am only 47. I think that is less common. I agree, the support and humor is wonderful medicine for mind and body. I see from your profile that you are involved in holistic health care. I am an epidemiologist, and actually thinking of doing a bit of epidemiologic research on BEB. Thanks for the tips on FL-41. I also where progressive lenses....didn't understand your point about not getting them to "position just right". What did you mean?

Andy




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Re: EPIDEMIOLOGIC RESEARCH ON BEB

Re : Re: FL-41 tinted lense --- andrew karter
Posted by June in Toronto (June Floyd,June in Toronto), Feb 18,2001,10:01 Top of Thread Archive
That would be wonderful if you could do some research on beb, Andrew, - we need all the help we can get. Good Luck

June in Toronto who went to a dinner/dance last night with her hubby for Valentine's and had closed eyes most of the dancing time - but it didn't matter as he `steered'!




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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- andrew karter
Posted by Delaine Inman , Feb 18,2001,14:04 Top of Thread Archive
I decided in the 7th grade I wanted to be a nurse...nothing had happened to me or family...but when I was in 5th grade and I mentioned airline stewardess my mama who is usually calm lost it. So the Teen magazine said being a nurse might be come in handy as an airline stewardess. So I thought that might be a sneaky way to do both. Alas...the dream stopped as an RN 29 years ago. Never regreted it. I haven't been able to work as a nurse in 2 years. But I haven't given up. I keep up my license....CEU's....American Holistic and Massage therapist and American Nursing membership.
Now the question about lenses...Chuck said they are taken out to tint and they have to be tilted just right to fit your eyes. When I put them on I would get dizzy, nauseated, and couldn't read out of them. They were a pair I had won for awhile with no problem. He tried twice and like I said, I decided to get the next best thing and it has worked. I use to wear really dark glasses indoors and now I wear a medium rose tint. I wear darker ones in the car and a second pair made to fit that clipped onto the darkest pair in the car and short driving errands.



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Re:Research

Re : Re: FL-41 tinted lense --- andrew karter
Posted by Shirley-Arkansas-USA , Feb 18,2001,18:24 Top of Thread Archive
Andy,
It would be great if you could do some research on BEB. We got into a discussion a month or so ago about the possibility of BEB being caused or triggered by a virus or somehow making us susceptible for the disorder to present itself.
At the conference in Arizona coming up, they do plan on letting people participate in some form of genetic research, I believe. We have several people on the bb that have family members with it, also.

Shirley in AR.




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Re: FL-41 tinted lense

Re : FL-41 tinted lense --- andrew karter
Posted by Sally - in - Idaho , Feb 17,2001,19:34 Top of Thread Archive
Hi Andrew,

Welcome to the BB. I hope you will visit often and share more of your frustrations and successes with us, plus any details of where you live, how you manage working/driving/reading, etc. This is a good group. We sometimes horse around and let off steam, but everyone quickly gets serious when need be. There will always be someone who can shed a little light on your questions.

I have not tried the tinted glasses yet, but many have found them to be wonderful. I have seen guys in that tint and it just looks like certain sunglasses. Give it a try.

Sally in North Idaho




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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- Sally - in - Idaho
Posted by andrew karter , Feb 18,2001,00:27 Top of Thread Archive
Hi Sally! Thanks for the warm welcome! I have learned that it can be rather frustrating and isolating having this disease. And it is a great relief to have found others who can understand and identify with the problems. My disability has been especially difficult for me at work. Work meetings can be a major pain (with people wondering: "why is Andy sitting there with his eyes closed"?!). Strangely enough, when I do presentations, I don't have any problems. It's when I just listen that things go haywire. Any way, I will definitely give the FL41 a try.
Thanks again!

Andy from California
(I see the protocol is to end with a weather report...it's raining, which is great for our garden)




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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- andrew karter
Posted by Shirley-Arkansas-USA , Feb 18,2001,17:49 Top of Thread Archive
Andy,
The eyes closing when people are talking to you is very typical. Most of us have the oposite scenario happen when we are talking or giving a presentation or talking to our doctor explaining our symptoms and he doesn't see them as our eyes are open when we are talking. Talking and singing and humming are just some of the little tricks that one can do to keep their eyes open. They do sometimes quit working, though.
I had to quit my job two years ago as the BEB was so bad that I was unable to perform in my job. I am now on SSD.

Shirley in AR. wondering just where all the other men are.

PS-If you notice that your posting has occurred twice all you have to do is open up your post and click on "edit" and then click on where it says "delete". And that one will be deleted. Do it to the one that no one has responded to. Pushy, aren't I?

--modified by Shirley-Arkansas-USA at Sun, Feb 18, 2001, 17:52:15




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THANKS Shirley, Virginia and Delaine!

Re : Re: FL-41 tinted lense --- Shirley-Arkansas-USA
Posted by andrew karter , Feb 19,2001,13:30 Top of Thread Archive
Shirley, Virginia and Delaine! Really appreciate you sharing your
experiences with me. This is great. I will give the glasses
a try (even though I use progressive lenses). I will be involved
in BEB research. We are starting to consider some research here at Kaiser Northern California. It is preliminary at this point, but
will hopefully turn into a full-fledged, NIH funded research.
Looking forward to meeting you all in Arizona.
cheers
Andy



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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- Sally - in - Idaho
Posted by andrew karter , Feb 18,2001,00:31 Top of Thread Archive
Hi Sally! Thanks for the warm welcome! I have learned that it can be rather frustrating and isolating having this disease. And it is a great relief to have found others who can understand and identify with the problems. My disability has been especially difficult for me at work. Work meetings can be a major pain (with people wondering: "why is Andy sitting there with his eyes closed"?!). Strangely enough, when I do presentations, I don't have any problems. It's when I just listen that things go haywire. Any way, I will definitely give the FL41 a try.
Thanks again!

Andy from California
(I see the protocol is to end with a weather report...it's raining, which is great for our garden)




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Re: FL-41 tinted lense

Re : FL-41 tinted lense --- andrew karter
Posted by Dee in OR , Feb 19,2001,14:04 Top of Thread Archive
Hi Andrew,

Welcome to the BEB BB. I have FL-41 tinted glasses (rose) and I really like them except at night. My glasses are 55% tinted. I don't have the address with me here in Florida because I am on vacation but if you can wait till Friday I can e-mail it to you when I get home. Or you can try www.knightonoptical.com You have to send them to Chuck at the University of Utan, Moran Eye Center, Salt Lake City, Utah but that is not the complete address and I don't remember the rest. It only cost me $25.00 to get them tinted and as I said, I really like them excep for night time. They are too dark for nighttime driving.d luck and if you don't get the address before Friday, e-mail me and I will send it to you.

Dee in Florida who can't wait to get home to Oregon!!




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Re: FL-41 tinted lense

Re : Re: FL-41 tinted lense --- Dee in OR
Posted by June in Toronto (June Floyd,June in Toronto), Feb 19,2001,14:20 Top of Thread Archive
Dee - I think (me only) that ANY DARK GLASSES make the nightime dark, darker and thus make the brake lights and traffic lights, brighter. Therefore don't wear dark glasses at night. I can't drive then AT ALL and even as a passenger have to cover up my eyes - holding something in front of me so that I can look out the side (and not seeing the traffic lights) and, hence not get car sick. What a life eh!!!!!

June in Toronto




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Re: Fishing Sunglasses & Nite Driving

Re : Re: FL-41 tinted lense --- June in Toronto
Posted by Mindy , Feb 20,2001,18:26 Top of Thread Archive
I bought a pair of sunglasses that fit over my glasses, fishermen
use it to eliminate the glare of the water, they are Polorized.
They have a thin piece on top and on the sides to keep out the sun.
They are smaller and thinner than my other sunglasses.
They work great, especially for driving.

This morning I was reading my car & travel magazine from
AAA Automobile Club. There is an article about Headlight Glare.
I looked it up on the net and sure enough I was able to get you
the web address. If you are unable to read it all, scroll down until you see "What works and what doesn't"

hugs,
Mindy in NY

Related link: Heading Off Headlight Glare




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Re: Fishing Sunglasses & Nite Driving

Re : Re: Fishing Sunglasses & Nite Driving --- Mindy
Posted by June in Toronto (June Floyd,June in Toronto), Feb 20,2001,20:07 Top of Thread Archive
Thanks Mindy, that was an interesting article - it was wonderful of you to sort it out of the web - I really appreciate it.

I can't do anything about other car's headlights (sport-utility and high-tech) or if they are mis-aligned, or having hazel (lighter-coloured) eyes. I don't know if we have High-intensity headlights on our car - the article suggests with HIV headlights "its like driving in daylight" - that's something to note.

I do have amber (almost yellow)-coloured glasses plus the same colour extension visor that I TRY and use when I am a passenger in the car at night - but I usually have to resort to pegging a piece of cardboard onto the visor and/or holding the cardboard in front of my eyes to avoid the lights ahead. At least then I can see sideways out of the windows and that helps with motion nausea.

I just blame THE WHOLE THING ON BEB - I didn't have this glare problem before beb and now I do, so there!!!!!! I'll have to that SELF CHAT exercise again and tell this beb off LOL.

Thanks again for your help

June in Toronto




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Re: Fishing Sunglasses & Nite Driving

Re : Re: Fishing Sunglasses & Nite Driving --- June in Toronto
Posted by Sally - in - Idaho , Feb 21,2001,21:03 Top of Thread Archive
My glasses have anti-relective coating and that helps a lot with glare.

Sally in North Idaho




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Re: Fishing Sunglasses & Nite Driving

Re : Re: Fishing Sunglasses & Nite Driving --- Mindy
Posted by grace anne , Feb 21,2001,07:19 Top of Thread Archive
Thank you, Mindy, for passing on that article. It was very interesting. I have used the sunglasses you mentioned. They are wonderful. These are also the same glasses I was given after my corneal surgery in 82.

graceanne




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