Blepharospasm Bulletin Board

FL41 Sunglasses
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Posted by: Donnar ®
06/21/2011, 09:19:53
I have a friend that will be vacationing in New York City this summer and has offered to pick me up a pair of FL41 sunglasses. I was wondering if there is anyone in the group that lives in that area that would have an idea of where they would sell these sunglasses. I know of one store in Toronto that sells these sunglasses .... but I thought they may be a better price in New York. Of course I could be wrong about that. Thanks for your help.

Donna R.




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Re: FL41 Sunglasses
Re: FL41 Sunglasses -- Donnar Top of thread Archive
Posted by: pdb ®
06/22/2011, 15:54:25
I'm not aware of any source of ready to wear FL41 sunglasses. All I've ever heard about is folks getting existing glasses tinted with FL41.

Peter




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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- pdb Top of thread Archive
Posted by: Donnar ®
06/22/2011, 17:20:42
Thanks for letting me know about the FL41 sunglasses. I did not realize it was a tint that was applied to existing sunglasses.

Donna R.




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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- Donnar Top of thread Archive
Posted by: SophieX8 ®
06/22/2011, 19:42:11
Where does one get this tint? I've checked with my local vision stores and no one has heard of this tint? I live in Minnesota



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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- SophieX8 Top of thread Archive
Posted by: kaba ®
06/22/2011, 20:11:00
Hi Sophie, I got mine at the Moran Eye Clinic. You can google it on the internet for address and phone number. Call them, they are very helpful. The man I talked to was Philip (I think).
Good luck!
Klara in Central Texas where we finally had some rain!!!



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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- kaba Top of thread Archive
Posted by: judith k ®
06/22/2011, 20:48:19
Patrick Shaw is the manager at Moran—at least he was, as of 8 months ago. Phone # is (801) 587-3765.

I got 3 pair tinted in October: 1 pr non-prescription fitover sunglasses, two pair already-made prescription glasses, all in different intensities. (The sunglasses were the darkest.) $35 per pair for the tint.
You can mail them and they will mail them back.

They use the rose tint (not orange-y), and I like that tint.
Patrick had said the rose tint was from Phantom Labs.
The more orange-y tint is from BPI Labs.

(Kaba, wasn't that rain NICE!!?)

Judith K



Modified by judith k at Wed, Jun 22, 2011, 20:50:18

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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- judith k Top of thread Archive
Posted by: kaba ®
06/23/2011, 07:17:00
Yes, Patrick was the name. I knew it started with "P".

Judith - the rain was beautiful, and the drop in temperature didn't hurt either. Only 89 degrees!!! Downright cool. :)

Klara glad to unpack the last box yesterday



Modified by kaba at Thu, Jun 23, 2011, 07:21:13

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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- judith k Top of thread Archive
Posted by: kaba ®
06/23/2011, 07:19:34
Yes, Patrick was the name. I knew it started with "P".

Judith - the rain was beautiful, and the drop in temperature didn't hurt either. Only 89 degrees!!! Downright cool. :)

Klara glad to unpack the last box yesterday

Whoops! it told me the server did not receive it and then it received it twice!



Modified by kaba at Thu, Jun 23, 2011, 07:23:10

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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- kaba Top of thread Archive
Posted by: kenavis ®
06/23/2011, 20:30:39
klara the rain was so needed lighting was flshing the tv news weather show live footages i sleep really good the Fl41 sunglasses can be %25 optic stores they are coated rose pink strach proof add ten $ depands on the frans same day pich now i stop seting on my glsses brakleing them droping not drive wlIL BE OK MY EYES ARE closeing going to get my retiremet finnallised in about month fishing time an finely finish my new song getting my email working an get my new nore book ;lab top now i can go back to work ha have a bless kenavis



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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- kenavis Top of thread Archive
Posted by: judith k ®
06/23/2011, 20:36:17
Oh, Kenavis's post reminded me:

If you send old glasses of your own, the FL41 tint cannot be put over existing coating, such as non-glare coating.

Judith K




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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- judith k Top of thread Archive
Posted by: sonia owen ®
06/24/2011, 01:17:19

Hi All,

Hope you are all keeping well.
Iam am just getting over my third ot of Botox injections. Going ok.
It would be so much easier if someone even thought about making FL42 sunglasses over here in the UK.
While having my botox injections done I asked my doctor,if she had heard anything about giving the injections in the scalp muscle to people who suffer with terrible headaches. Thinking most likely only dome in USA. Her answer quite surpised me. They do it over here, she has not been asked to do it as yet. They have about 32 injections, over the scalp area. There seem to be so many differant kinds of illness, that botox can be used for these days.
Sorry for going off the subject of tinted sunglasses, thats me for you. Many things running through my tiny brain all day long.

Take care.
Any of you who live in Canada. Take care of our Royal couple who are visiting you all shortly!!!
Love Sonia UK xxxx




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Re: FL41 Sunglasses TO SONIA
Re: Re: FL41 Sunglasses -- sonia owen Top of thread Archive
Posted by: myfanwy ®
06/24/2011, 04:47:30
HI
I have had several pairs of FL41 glasses. You can get them from most High Street opticians, mine came Boots. Just go and ask them, if they look puzzled don't give in. A lot of them deal with a lab. called Norvilles which will do any tint you want.
Good luck.
p.s. I live in U.K.



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Re: FL41 Sunglasses TO Myfanwy
Re: Re: FL41 Sunglasses TO SONIA -- myfanwy Top of thread Archive
Posted by: sonia owen ®
06/24/2011, 05:18:54

Thanks Myfanwy for your reply I will certainly have a look for the sunglaases here where I live. I don't think our local Boots do any glasses.

I had to go to Bristol, to find the nearest place who do the range off Norville glasses. Can I find the details about the special lens that I had made to help with my Blepharospasm. I know they cost me over £4oo to have made with the frames.

I hope you are getting support and something to help your eyelids. It's can be hard going sometimes over here,in the UK.
Where about's are you in the country Myfanwy?
Have a nice weekend, should be nice by all accounts. About time too.
Love Sonia xxx




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ROYALS IN CANADA - OFF TOPIC
Re: Re: FL41 Sunglasses -- sonia owen Top of thread Archive
Posted by: June in Toronto ®
06/24/2011, 08:41:06
Canadians sure will take care of our Royals Sonia - we love 'em. I'm sorry they are not coming to Toronto but the other cities will surely give them a grand welcome.

I'm just old enough to remember the Queen's Coronation - all the houses, ours included, were decorated and we had a huge street party - good memories. Our Queen has been a good one.

June in Toronto where it's going to rain again today.




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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- sonia owen Top of thread Archive
Posted by: Liz in Uk ®
06/24/2011, 12:49:01
Hi Sonia

I use an independent optician rather than one of the 'chains' - and they got my FL41's done for me via Norville. I printed off info off the internet for them.

A warning though - I've had 2 pairs of 'FL41's' done over the past few years - the first pair came back with the orangey tint, which I accepted, but didn't really like the colour. When I needed a new pair of prescription lenses I again requested FL41 - this pair came back with a brownish tint -much more pleasing to the eye. Norville did both pairs. At the time I was still working, under fluorescent lighting, which was why I requested the tints in the first place.I didn't find any difference between the tints in use - but didn't feel as conspicuous in the brown tint.

When I again needed new glasses this year, I asked the dispensing optician to clarify with Norville which tint was the 'real' FL41 - they said it was the orange. The brown tint was an ordinary 40% brown tint, so I had this applied again.

I know some people swear by FL41, but I honestly didn't find them any better or worse than the ordinary brownish tint.

So - my advice would be to make sure what colour tint your glasses will come back with - the optician should be able to get you a sample lens to show you. Once the tint is on it can't be removed!

Hope the botox is working its magic for you!

Liz in Uk - where it's raining yet again.....




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Re: FL41 Sunglasses
Re: Re: FL41 Sunglasses -- Liz in Uk Top of thread Archive
Posted by: myfanwy ®
06/24/2011, 13:46:37
HI
I will confess that I too am now using glasses with an ordinary brown tint, I have found them just as good as the FL41 ones.
My daughter was getting married and the orangey tone of the FL41s didn't look good with my outfit.....sheer vanity I'm afraid.
I was told by the rep. from Norvilles that a tint can be removed if it's not suitable.



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Re: FL41 Sunglasses/tint color
Re: Re: FL41 Sunglasses -- Liz in Uk Top of thread Archive
Posted by: pdb ®
06/24/2011, 18:30:02
Two things to comment on.

First, in tests some people did not get any different benefit from FL41s compared with other tints. But some people did, so again it's one of those "works for some, maybe not you" things about BEB.

Second, there are a couple of brands of tint around, one of which seems to come out more orange than rose. The one folks in the US seem to prefer is the rose tint. Tint color can also be impacted by the material of the actual lense, I understand.

Cheers

Peter




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Comparative Study, & labs providing tints ...Re: FL41 Sunglasses/tint color
Re: Re: FL41 Sunglasses/tint color -- pdb Top of thread Archive
Posted by: judith k ®
06/25/2011, 11:14:29
Hi, anyone who is interested!—

Look online, do a word-search for things like "FL41 BPI labs" and "FL41 Phantom labs".

You'll see that BPI is described as "rusty-rose" (for me, these are the orange-y ones that, for some reason, my eyes find irritating).
The tint that is more like true rose is the tint made by Phantom Labs—which Moran and some others use. (But if you get VERY dark intensity put on—like 80%—that's too dark, and the glasses become more like brown. At least one pair of my plain fitovers did.)

Yes, it's been said that plain plastic takes the tint a little better than polycarbonate lenses.
I like having ALL my rosy FL41s (polycarbonate and plastic)—but the ones I especially like, surprisingly (because I hadn't had Rx plastic glasses in years), are plain plastic reading glasses I had made in India and then had tinted here!
I am going to experiment and get full prescription lenses made in plastic next time.

Just plain tinted sunglasses are, of course, going to help~
And not everyone is equally photophobic, and some have less of a blink-frequency rate than others. (And then there's always the "we are all different" factor!)

But research does give explanation for why FL41 can be effective: FL41 reduces the blink rate. The blocking of the more irritating parts of the light spectrum also reduces blinking and spasms and photophobia.

I have FL41s and plain sunglasses. I do prefer the rose-tinted FL41, but plain glasses are also helpful. I need a bunch of pairs because I keep several in my purse (Rx and non-RX FL41s, and a plain pair), in the car, in my office, in the house, and so on.

Below is an excerpt from a comparative study about FL41 vs plain tints (I think this must be the study that Drs. Digre and Katz participated in and spoke about in SLC). But first, here's a link to a more extensive discussion of the study:

Link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2701948/

Excerpt:
"Results
Most participants observed improvement while wearing both FL-41 and gray tinted lenses. FL-41 tinted lenses provided superior improvement in the areas of reading, fluorescent light sensitivity, overall light sensitivity, blepharospasm frequency, and blepharospasm severity. FL-41 lenses reduced mean blink rate compared to both rose and gray tinted lenses, and reduced eyelid contraction force compared to rose tinted lenses.
Conclusions
FL-41 lenses provided both subjective and objective benefit to subjects with BEB. Physicians should consider recommending this noninvasive and inexpensive lens tint to patients with BEB.


Benign essential blepharospasm (BEB) is a movement disorder characterized by involuntary spasmodic contractions of the orbicularis oculi. More than 50,000 people, most over age 50 and female, are estimated to have BEB in the United States, with 1,500-2,000 new diagnoses annually.(1) This physically and socially debilitating condition interferes significantly with visual performance, quality of life, and activities of daily living (ADL) such as driving, reading and shopping. In severe cases patients can be rendered functionally blind.(2-6)
Most BEB patients report photophobia, an aversive response and abnormal intolerance to light. The pain and discomfort of photophobia cause patients to avoid both ambient and bright light.(7-9) Previous research has indicated that BEB-associated light sensitivity may be a form of sympathetically maintained pain, supporting the hypothesis that BEB is a neurologic disease.(8)
Because of the limited understanding of the pathophysiology of both BEB and photophobia, treatment options have focused primarily on symptom control. One such option is the wearing of tinted lenses. BEB patients have reported a preference for FL-41, a rose-colored tint that blocks visible light at the green-to-blue end of the spectrum, over a variety of other tints.(10) We conducted two studies of FL-41 tinted lenses to assess the effects of photophobia in patients with BEB. First, we performed a randomized crossover study to compare the perceived improvement in light sensitivity and ADL provided by FL-41 lenses in subjects with BEB. We then used surface electromyography (EMG) to evaluate the effects of FL-41 on blink frequency, duration, and force in subjects with BEB and in controls."

Judith K
PS (Christy's Opticians, in the building attached to the Baylor Neurology Clinic in Houston, had a couple of ready-made, non-Rx FL41s (rose), which I bought a couple of years ago. (And, unfortunately, lost.) I liked those a lot.
Later, they tinted a pair of fitovers for me while-you-wait (during my Botox appointment), but those were orange (for some reason, this time they used BPI), and I didn't like them.
I don't know if they are providing either service any more. But if you happen to go to the clinic, they're right across the inside, connecting bridge. Helpful and nice people.)



Modified by judith k at Sat, Jun 25, 2011, 11:20:40

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Re: Comparative Study, & labs providing tints ...Re: FL41 Sunglasses/tint color
Re: Comparative Study, & labs providing tints ...Re: FL41 Sunglasses/tint color -- judith k Top of thread Archive
Posted by: kenavis ®
07/05/2011, 19:18:37
I just got my new glases to day it has prink an rose tent one aday service ivu lost them an got broke but $85.00 can not beat the prices any where $25. OPTICAL i payed $85.00 had rose pink an the rest bad spelling also thank kenavis



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Re: Comparative Study, & labs providing tints ...Re: FL41 Sunglasses/tint color
Re: Comparative Study, & labs providing tints ...Re: FL41 Sunglasses/tint color -- judith k Top of thread Archive
Posted by: kenavis ®
07/05/2011, 19:18:49
I just got my new glases to day it has prink an rose tent one aday service ivu lost them an got broke but $85.00 can not beat the prices any where $25. OPTICAL i payed $85.00 had rose pink an the rest bad spelling also thank kenavis



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Re: FL41 Sunglasses/tint color
Re: Re: FL41 Sunglasses/tint color -- pdb Top of thread Archive
Posted by: bjd ®
07/06/2011, 00:08:56
I got my fl41 made at Moran in SLC. After my first Botox shots I went thru SLC the next day, dropped off a pair of generic glasses and ordered a tint of 75 as a trial for outside. went to Vernal the next day and stopped by before closing and picked them up. I Aam happy with them, but need frames for outside that shield better. I am going to get some readers tinted at about 25 for inside where flourscents kill me, and heavier shielded frames at about 80 for driving. My problem is , I am going to spend some time in my shop building frames with crutches, and trial some frames without nose pads as I have found that the nose pads of many of my glasses seem to me to initiate spasms. This may seem strange to some of you, but I alternate with and without glasses because I am convinced that the frames, nose pads or something initiate spasms. I'm interested if anyone has this same effect. If you have your own glasses Moran at the University of Utah is a great place for fl41 lenses and reasonable. they strike me as very competent and sharp. I was diagnosed by Dr. James Coombs of Twin Falls, Id, have had good injections and help from him as well as seeing Dr. Richard L Anderson and some life saving injections in my neck and back. Thank God for people like these who can and will with kindness and concern put some quality back into our lives in this day and age of profit and litigation. I am glad to publicly thank them and number them among my friends. Whatever life gives me tomorrow, I thank them for their good help. Brad , PS, I had a lousy day but good evening.



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Eyeglasses causing spasms
Re: Re: FL41 Sunglasses/tint color -- bjd Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
07/06/2011, 08:51:19
Hi Brad,

Early on I found/or felt that my glasses in some way made my spasms worse. I think that it is entirely possible...at least it was for me. I felt that it was the frame itself and weight...I had been wearing contacts.

I invested in a pair of rimless, lightweight glasses that eliminated the problem.

I even felt that being able to see the metal frame caused me problems....so got rid of that.

Shirley in New Mexico




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Re: FL41 Sunglasses/tint color
Re: Re: FL41 Sunglasses/tint color -- bjd Top of thread Archive
Posted by: lightwave ®
07/06/2011, 10:11:32
Brad,

I feel my glasses initiate spasms also. When I was developing blepharospasm, I had a new pair of glasses with the spring-loaded wings. They were very tight against my temples and nothing I could do loosened them. I was busy with my life and never got back in to get a new pair until about a year later. They were just miserable. I have only found one comfortable pair of frames since that time and they are no longer manufactured.

I don't do well with the skinny frames that barely have room for my bifocals and have tried having separate glasses for reading, computer, distance, and sunglasses but I just can't keep up with that many and constantly changing glasses and keeping them all clean is a problem too. I have noticed the last couple of times I have gotten glasses that the spring-loaded wings are coming back. No matter how wide a frame I get, they are always too tight and just miserable an no amount of adjusting helps.

As far as the nose pads, they are always too large and obstruct my view. I always have those changed out at the beginning for little, clear ones.

The weight of the glasses is very important too. I just can't wear heavy glasses. My lenses would look like the bottom of Coke bottles if I didn't get the polycarbonate lenses.

The length of the wings is also important in my comfort. The wings on most glasses are usually too short. When I get longer wings, my glasses don't feel like they are pressing so hard on the nose pads.

I would wear contact lenses if I could but they tend to stick to my eyes (dry eyes) and have to be peeled off. I know the tech person at my opthalmologist's offic dreads seeing me but if my glasses aren't comfortable, I definitely have more spasms. I have explained to her my problem and she seems to be very understanding.

Good luck in fabricating frames and crutches that can give you some relief. I wish I had the skills to do such a thing.

Glynda in Houston, TX




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Glasses
Re: Re: FL41 Sunglasses/tint color -- lightwave Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
07/06/2011, 10:43:11
Glynda, since you mentioned bifocals.....that also reminded me that the bifocal lines seemed to cause problems for me also with being a trigger for increased spasms....so I went to a progressive (no line) bifocal which seemed to be better for me.

Shirley in New Mexico




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Re: Glasses
Re: Glasses -- Shirley Barr in New Mexico Top of thread Archive
Posted by: lightwave ®
07/06/2011, 12:37:11
Shirley,

The bifocal lines bother me too. I tried the progressive bifocals for about six months but they have a disorienting effect on me. I think the head tremor I have with cervical dystonia causes disorientation too and the progressive lenses just add to that.

I had my eyes checked by a neuro-ophthalmologist who shined a tiny eye chart on my retina. This bypassed the cataracts. She said I had 20/20 vision without the cataracts. When the cataracts get bad enough, I will have them removed and, hopefully, won't have to wear glasses (except for reading glasses). It will be interesting to see the difference (if any) not having to wear glasses will have on my blepharospasm.

Glad to hear you are back home.

Glynda in Houston, TX




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