Blepharospasm Bulletin Board

new member, lots of questions
  Archive
Posted by: kathytai
02/07/2004, 10:30:04


Hi everybody, I've been lurking a bit and checking the archives, finally decided to jump in.
I developed beb last year, went to my optometrist in November about it. She diagnosed it and referred me to the neuro-opthamologist at Casey in Portland, Oregon. By the time I got there, I had used almost two weeks of sick leave as I couldn't drive, couldn't read but large print and that not well, and was stumbling around. Basically what I've heard here. I am a Public Health Nurse by profession, but had never heard of beb.
I got my first Botox treatment Dec. 17th, and was able again to drive along with singing and all the other sensory tricks, but not well enough to do my job. I found this site about then and started learning about all the alternative therapies. I started the essential fatty acids (EFAs)and Moisture Eye about three weeks after the Botox, the sleeping mask combined with gel tears two weeks later. Have been experimenting with different EFAs since. Anyway, my spasms have decreased dramatically and I can barely feel them. Haven't even tried the vitamins yet, except for E. I am going to my first support group meeting next month.
My first question: what surveys have been done for EFA's? I haven't been able to find any.
Thanks for being here. I've enjoyed reading your posts tremendously.
Kathy



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Replies to this message


Re: new member, lots of questions
Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Lynn Yarbrough
02/07/2004, 12:38:23


Hi, Kathy, welcome to the BEB BB.

Indeed, your experience sounds like a sampling of what everyone goes through with this condition. We're sorry you are afflicted but glad to meet you on-line. We hope you are comfortable as a contributor.

I have no info on EFA, but perhaps someone else will fill you in.

Cheers,

--- Lynn




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Re: new member, lots of questions
Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: June in Toronto
02/07/2004, 16:07:17


I just wanted to welcome you to the bulletin board, Kathy, but sorry to hear yet another person has this disease. You seem to be doing reasonably well and we hope you will post often and share with us again. Best wishes

June in Toronto, Canada, that is.




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Re: new member, lots of questions
Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Debbie
02/07/2004, 18:11:37


Hi, Kathy.

I take flaxseed oil capsules (9 capsules a day, 3 at each meal, 1,000 mg each) and though the flaxseed took a few months to kick in, I do find that it makes a difference. Not an incredible or tremendous difference, but my eyes are moister and less twitchy. I also take vitamin E capsules when I take the flaxseed. I read some articles about flaxseed in the past (some say that fish oil works even better, but personally, I don't like the fishy aftertaste and smell), but can't recall where I read about it.

Which EFA's are you taking?

Best of luck,
Debbie




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Re: new member, lots of questions
Re: Re: new member, lots of questions -- Debbie Top of thread Archive
Posted by: kathytai
02/07/2004, 18:41:30


I started with 1300 mg of Borage oil,2 capsules of Moisture Eyes by Carlson, 3 caps of Black Currant oil and 1 Centrum silver per day. It worked really well, but I'm trying to see what is best. Last week I changed to 4ooo mg of salmon oil, 16oo units of Vit. E, and stopped the Borage and Black Currant oils. This doesn't feel quite as good, so next week I'm trying Flaxseed oil instead of the salmon oil. Don't know if it makes a difference. I figure to have this the rest of my life, so might as well keep trying different stuff.
Our support group leader here said BEBRF is always doing surveys. Has anyone ever read of results of a survey of the EFAs? If no one has,I'd be interested in doing one.
Another question, does anyone use a measurement scale to measure their amount of spasming? I saw a scale proposed in an article written several years ago. It had 0 for no spasms, up to 5 for totally unable to open the eyelids. I've started using this scale to measure my spasms on the calendar and wonder if anyone else does.
Thanks so much for the warm welcome.
Kathy



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Re: new member, lots of questions/keeping track
Re: Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: pdb
02/07/2004, 19:00:20


I've been keeping track for the effectiveness of botox against three measures: eyelid droop (ptosis), measured independently, and a combined measure for blinking intensity and degree of spasm (i.e. forced closure, difficulty opening the eyes etc). Hadn't come across anyone elses measures so mad up my own and graph them, as well as track comments like impact of the lighting environment I am in, etc. For me it's necessary as we're struggling with amounts and loctions of botox injections to avoid ptosis. Haven't tried the alternative medicines yet, but will move to that shortly.

Peter




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Re: Lighting - Ouch!
Re: Re: new member, lots of questions/keeping track -- pdb Top of thread Archive
Posted by: June in Toronto
02/08/2004, 10:00:22


Hi Peter, I just experienced a really rough time with lighting. Attended a musical (trad jazz) memorial of a trumpet player (he's been dead one year this weekend). There were a couple of guest musicians from New Orleans and Florida and it was to be a great evening - hubby plays keyboard. People were flashing cameras all over the place I ended up completely blind and we had to leave after one set. The meige syndrome has been terrible since then as well. Drat (would like to use stronger terminology) this disease - it gets in the way of my partying.

June in Toronto (Canada) who used to go regularly to 100 Oxford Street in London, U.K. to listen to jazz in the 50's.




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Re: Lighting - Ouch!
Re: Re: Lighting - Ouch! -- June in Toronto Top of thread Archive
Posted by: Ann Doyle
02/08/2004, 11:45:37


Drat! is my favorite curse word. My favorite word is Wheee!. My least favorite word is SHAME. When God meets me at the pearly gates I hope he says;" Glad to see you made it." Does anyone elswe watch Inside the Actor's Studio? These are some of the questions asked. Ann Doyle



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Re: Lighting - Ouch!
Re: Re: Lighting - Ouch! -- June in Toronto Top of thread Archive
Posted by: Diane in Virginia
02/08/2004, 12:26:51


Hi, June..
Too bad that you had to leave that wonderful jazz concert after one set because of all the flash going off!
Next time, maybe you can bring along sunglasses & just keep your eyes closed while you're wearing them. And you'll look "cool," too! As you know, wearing shades indoors is (or was) a jazz thing!
Diane



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Re: Lighting - Ouch!
Re: Re: Lighting - Ouch! -- Diane in Virginia Top of thread Archive
Posted by: June in Toronto
02/09/2004, 07:38:25


Hi Diane, in a dark venue, such as this was, I never find that sunglasses help - in fact they make it worse. They make the darkness darker and, therefore, the flashing lights, lighter. Mind you I think a visor would have helped some. Hubby had another gig the next night (glad I didn't go) as they played on request "Praise The Lord I Saw The Light" whereby all the lights were turned off and people went around with candles - I would have spent the whole song in the washroom then I'm sure. That's life with beb - gotta cope. Best wishes

June in Toronto (Canada)




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Re: new member, lots of questions
Re: Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Diane in Virginia
02/08/2004, 12:32:15


Hi, Kathy..
You're taking 1600 units of vitamin E...
I read somewhere that megadosing of that particular vitamin is not necessarily a good thing, & that more is not always better.
I'll try to track down that research & get back to you.
Diane



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Re: new member, lots of questions
Re: Re: new member, lots of questions -- Diane in Virginia Top of thread Archive
Posted by: Raymond Fudge
02/09/2004, 11:49:09


I studied nutrition in college, but ended working in a different field. A and E are in the fat soluble family, where the B vitamines and C are water soluble. Vitamine A can become toxic, and children have died from overdoses that accumulate in the liver. I do not know of deaths from E but imagine it may become toxic in larger doses over time. I also take E and may become that first death from toxicity. The B's and C are eliminated in the urine when the body has to much, so ususally taking more than RDA is wasted. I also waste C as I want to make sure I get enough, even though I know that more is not always better.



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Re: new member, lots of questions
Re: Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Debbie
02/13/2004, 15:21:11


Kathy,
I hope the flaxseed oil works for you. You've certainly tried everything! I'm curious about "Moisture Eyes"--what does it contain? Can you buy it at any pharmacy, or does it need to be ordered on the Net?

Keep in mind that it took a long time before the oil started to work for me.
Good luck,
Debbie




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Re: new member, lots of questions
Re: Re: new member, lots of questions -- Debbie Top of thread Archive
Posted by: kathytai
02/13/2004, 21:51:06


"Moistur Eyes" is by Carlson. It is a combination of Salmon oil and Borage oil. Some other people have mentioned a "Hydro Eye" which is probably similar. I got mine at Wild Oats, a local store featuring organic foods with a large selection of herbals. I haven't looked on line, but imagine Carlson has a website.
This stuff started working for me by the second day. It took three weeks to get full benefit. My spasms are now minimal. Have no idea why this stuff helps some and not others. Just pinpoints the fact that we need studies regarding alternative supplements.
Kathy



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Flaxseed Oil
Re: Re: new member, lots of questions -- Debbie Top of thread Archive
Posted by: June in Toronto
02/08/2004, 09:54:13


I'm trying this route Debbie as well - am up to 9,000 mg a day now (that's a lot of capsules isn't it?). I'll try any good ideas to combat dry eyes. Cheers

June in Toronto, Canada




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Re: Flaxseed Oil/June
Re: Flaxseed Oil -- June in Toronto Top of thread Archive
Posted by: Debbie
02/13/2004, 15:24:11


Dear June,
I just wrote to Kathy and want to say more or less the same thing to you. I really see a difference with the flaxseed oil, but it does take a long time before it kicks in (say, a couple of months?) so don't give up until you've tried it for awhile.

For your sake, I do hope you have successful results! It's not a miracle cure but it does seem to make my eyes moister. They also say it's good for the cardiovascular system, so I figure it can't hurt. I haven't had any negative side effects from it.
Keep me posted,
Debbie




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Re: Flaxseed Oil/June
Re: Re: Flaxseed Oil/June -- Debbie Top of thread Archive
Posted by: June in Toronto
02/14/2004, 08:44:54


Thanks Debbie - I didn't expect it to work for a few months. Its like a diet eh - putting on weight can take years, so a diet shouldn't take just a few weeks? I think things might be looser because of it - if you get my drift!!!! - but thats ok. Best wishes

June in Toronto (Canada)




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Re: new member, lots of questions
Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Lyn Down Under
02/08/2004, 01:41:14


Hi Kathy

You have come to the right place. We are always interested to hear about other stategies for existing with BEB.

Have you thought that your spasms have decreased dramatically because of the Botox and not particularly because of alternative therapies? I get about 8 good weeks before it starts to wear off and have much reduced spasming during that time.

Lyn




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Re: new member, lots of questions
Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Linda In E. Tennessee
02/08/2004, 12:36:07


Welcome to the board. I, too, lurked for months before joining and learned a lot. I don't contribute often because of my eyes, but my read most of the comments and they have been helpfu. I hope you find comfort in this board as I have



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Re: new member, lots of questions
Re: Re: new member, lots of questions -- Linda In E. Tennessee Top of thread Archive
Posted by: kathytai
02/08/2004, 17:35:24


Sorry about misplacing the last post, still learning how to work the board.



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Re: new member, lots of questions
Re: new member, lots of questions -- kathytai Top of thread Archive
Posted by: Peter from Brisbane
02/09/2004, 18:03:10


Hello Kathy,

Welcome to the BB. I am a relative newcomer too but the people here are very nice and will make you feel right at home.

I am 44 years old - which in the scheme of things is a little young to have BEB. I have 3 daughters aged 1, 7 and 9 to raise so my main objective is to be able to keep working as long as possible. I get Botox injections every 10 weeks and this pretty much keeps the blinking and spasms under control when I am indoors. I replaced the fluorescent tubes in my office with the "high Kelvin" variety and this helps too because they don't flicker.

My real problem is the glare. When I go outside in the daytime (overcast is just as bad as bright sunshine), my eyes get real heavy and just try to close. This is not spasming or blinking, it is just like my eyes are really tired and want to shut. I raised this before on the BB and a few people have this exact symptom too. I bought some FL-41 sunglasses a month ago but these don't seem to help but I have been advised to persevere with these as sometimes they take a few months to get used to. People have also experimented with mixing other colors such as blue or grey with the FL-41 and have had some success.

I am pretty big on singing and humming when I am driving. The weird thing is that when I sit in the passenger seat, I don't get the heavy eyelid thing nearly so much, but as soon as I get behind the wheel they get real heavy straight away.

A week ago I started to take fish oil capsules 8000mg per day and vitamin B2 at 200mg per day. I can't say that I have noticed any improvement yet, but this also needs time to work. I have just ordered some Piracetam online but this will take a couple of weeks to arrive in Australia.

I have also started to have acupuncture . My acupunturist told me straight up that acupuncture cannot cure BEB but she will use it to try and reduce my stress levels which are a contributing factor to the severity of the BEB symptoms. I have had 1 treatment so far but, to be honest, didn't notice any change. She is also suggesting Osteopathy as a treatment but I am not so sure about that. I have also seen a website where a Bowen Therapist in the UK is claiming to have cured BEB but when I looked a little deeper into Bowen Therapy, it seems you can call yourself a Bowen Therapist after completing a couple of 2 day courses, so I think I will steer clear of that one.

I figure that taking vitamins, supplements and having alternative therapies can only help. I don't see any underlying danger in going down this path.

Anyway Kathy I hope this info is of some help to you and once again - welcome.

Peter



Modified by Peter from Brisbane at Mon, Feb 09, 2004, 22:50:20

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Re: new member, lots of questions - response to Peter:
Re: Re: new member, lots of questions -- Peter from Brisbane Top of thread Archive
Posted by: mkamper
02/13/2004, 14:14:57


Peter,
Have you checked out the possibility of your eyelid heaviness being caused by apraxia of the eyelid, in addition to the blepharospasms?
Myrna


Modified by mkamper at Fri, Feb 13, 2004, 14:15:36

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Reply to Myrna
Re: Re: new member, lots of questions - response to Peter: -- mkamper Top of thread Archive
Posted by: Peter from Brisbane
02/13/2004, 21:30:12


Hello Myrna,

This is all pretty new to me so I am learning more as I go along.

My understanding is that apraxia happens following an eye spasm - that is, when your eyes have a spasm, when the spasm stops, your eyes stay shut for a period of time. I understand that there is no treatment for this.

I have the spasming and blinking associated with Belpharospasm but my eyes do not stay shut after the spasming or blinking. The Botox injections do a good job of keeping this part under control.

The other problem I described before could be considered as extreme photophobia- in a nutshell, they just want to be shut when I am in the glare. Usually there is no blinking or spasming going on when this occurs. I believe that this is not apraxia but maybe I have got it wrong.

I would welcome any opinions on this.

Thanks

Peter



Modified by Peter from Brisbane at Fri, Feb 13, 2004, 21:32:20

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Re: more on eyelid closing and apraxia
Re: Reply to Myrna -- Peter from Brisbane Top of thread Archive
Posted by: pdb
02/14/2004, 05:26:37


G'day Pete
Your comment on apraxia and your eye closing interested me. I find that in addition to apraxia the way you describe it (inability to open for a period after a spasm), I also have a tendency for the eyes to want to close, regardless of any spasming. Mostly this is late in the day, when I'm tired, etc. It's no particular problem opening them again, but they just want to get back closed. It's as though keeping them closed protects them from spasms. Any similarity to your situation?

Another Oz Pete, but in London



Modified by pdb at Sat, Feb 14, 2004, 05:27:04

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Re: more on eyelid closing and apraxia
Re: Re: more on eyelid closing and apraxia -- pdb Top of thread Archive
Posted by: myrna j
02/14/2004, 12:14:44


Peter and pdb,
My eyes were doing similar things and it turned out to be apraxia of the eyelid opening. I had an upper myectomy done 1 month ago and am very happy with the results. It's given me great relief.
I'll describe my eyes' behavior to see if it might have similarities to yours....
As with you, the Botox seemed to handle the spasms fairly well. However, my eyes would often close without an apparent spasm. The most problematic times for me were when riding in a car, sitting in meetings, getting ready in the morning, or, as Botox wore off, more random times. When they did so, I was unable to initiate opening my eyes for 3-10 seconds. They felt paralyzed. I often used my fingers to hold my eyes open. At its worst, I had to tape my eyes open to use my computer at work. I also taped my eyelids open when driving, although for me it was actually the spasms that were more problematic when driving than the apraxia was.
You may have noticed the blepharospasm home page has an article about apraxia of the eyelid opening. Check that out if you haven't seen that yet. You may find it helpful. That is what tipped me off to the apraxia possibility, and I'm so glad it did.
Keep on keepin' on!
Myrna




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Re: more on eyelid closing and apraxia - Reply to Pete in London and Myrna
Re: Re: more on eyelid closing and apraxia -- pdb Top of thread Archive
Posted by: Peter from Brisbane
02/15/2004, 17:30:11


Hello P and M,

I read both your comments, and I really don't know much about apraxia, only what I have read on the internet. I am thinking perhaps that we all have the same affliction- BEB with apraxia?? It probably presents itself differently in each of us. With me it is the glare that brings it on - as soon as I get out in the glare - be it first thing in the morning or late in the day, the eyelids get heavy. At nighttime - even if I am very tired, I do not have this problem although sometimes the lids get heavy when I try to watch TV.

The Botox injections do not have seem to help this problem at all. Myrna - do you know if there is any treatment for apraxia other than myectomy? I would be extremely nervous about having this done and I don't know if there is anyone with experience of the procedure in this country. I am also curious about how the operation is done - I assume that they would have to target only the eyelid closing muscles.

I read somewhere about the Doxil trial and this sounds promising but who knows if this procedure will become "mainstream". Once again if it were to become commonplace in the USA, Australia would take some time to adopt the procedure.

I look forward to any comments on this.

Cheers

Peter




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Re: more on eyelid closing and apraxia - Reply to Peter
Re: Re: more on eyelid closing and apraxia - Reply to Pete in London and Myrna -- Peter from Brisbane Top of thread Archive
Posted by: myrna j
02/15/2004, 21:49:03


Peter,
I'm not aware of another treatment for the apraxia, but I may be wrong. You're right about needing a doctor with experience doing the surgery. The doctor who did mine was an oculoplastic surgeon. Might there be someone with experience in one of the major cities?
The surgery involves removing muscle from the upper eyelid. I think it's the doctor's experience that helps him judge how much to remove, and where. If he takes too much muscle, the eye doesn't close properly. From my perspective, it was a very easy procedure to go through. It lasted about an hour. Incisions were made along the upper lid fold lines. I was quite bruised for a week, but had almost no pain. The relief was apparent on my way home from the hospital - I could keep my eyes open in the bright light. Yea!
I do not have any experience with the Doxil trial you mentioned.
Best wishes!
Myrna



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RE: Kelvin lights, to Peter
Re: Re: new member, lots of questions -- Peter from Brisbane Top of thread Archive
Posted by: Raymond Fudge
02/13/2004, 14:46:46


I have attempted to find more about the Kelvin lights you mentioned. All I have found are lights for plant stands and heat lights. As I work in an office with the florecent tubes, I am interested in knowing more about those you mentioned. As I lurk on the board daily Monday - Friday, and others may want to know more, just leave a statement there, although I left my email if you prefer to contact me that way. Make sure the subject line has Kelvin, BEB or some easy to ID topic as I delete anything without subject line or unknown subject discription. Thanks in advance.



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Re: RE: Kelvin lights, Reply to Raymond and Kathy
Re: RE: Kelvin lights, to Peter -- Raymond Fudge Top of thread Archive
Posted by: Peter from Brisbane
02/14/2004, 04:18:50


Raymond and Kathy,

I mentioned that the high Kelvin fluorescent tubes made my eyes behave a little better when I installed them in my office. I was advised to make sure that all the light fittings around my desk, not just directly above my desk were tubed with the high Kelvin tubes. Depending on the layout of your office, you may have to replace more because they really are a different color to most conventional flourescent tubes. The high K tubes are known as "daylight" which means they are very white whereas typical fluorescent tubes are either "cool" white (bluish tinge) or "warm" white (pinkish tinge). When your office is fitted out with the same type of tubes throughout, you don't notice the color tinge -they just look white but when you have the different types side-by-side it is very noticable. So some thought needs to go into where the high K tubes are installed

You may think it is a bit weird that a BEB sufferer has had some benefit from tubes that are actually brighter than regular ones but the benefit is that they do not flicker and flickering seems to be a trigger for some people.

The link below is to the brochure for Osram tubes and the high K (6000K) tubes are known as "Lumilux 860". I am sure that other manufacturers would produce high K tubes as well. I sourced mine from an electrician's supply store and I am sure that a lighting store would have them also. Your local hardware store may not keep them. They are slightly more expensive than regular tubes.

I hope this helps you - but remember what people on the bulletin board keep saying - "we are all different". What works for me maynot work for you.

Let me know if you need any more info.

Peter


Related link: http://www.osram.fr/pro/documentation/pics/pdf0303/lumilux_e.pdf
Modified by Peter from Brisbane at Sat, Feb 14, 2004, 04:25:33

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Re: new member, lots of questions
Re: Re: new member, lots of questions -- Peter from Brisbane Top of thread Archive
Posted by: kathytai
02/13/2004, 22:03:12


I am also interested in Kelvin lights. Plan to ask my supervisor about them. The other nurses in our office are so great-they have all brought in little lamps so we can keep the flourescents off. In June tho, we are moving to a large office and we won't be able to do that.
Never thought I'd feel lucky to live in the rainy Northwest, but glare this time of year is not a problem. Share any ideas you have as I'm hoping to make a trip to Texas next Sept. and will be having that problem as well.
Peter, try Vit. E with the Fish oil. I read in a couple of places that EFAs need Vit. E to work.
Thanks for the tip.
Kathy



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Re: new member, lots of questions
Re: Re: new member, lots of questions -- Peter from Brisbane Top of thread Archive
Posted by: Anamarie
02/15/2004, 19:36:25


Peter,

I found your comments interesting about the glare. I have had a limited myectomy and am actually doing very well, however I have been having trouble with all glasses including the FL-41 lenses.

About three months ago I decided to order a pair of rimless glasses. After checking my eyes and writing the prescription, the optometrist said that the rimless glasses come with a non-glare coating to make them as close to invisable as possible for anyone who might be looking at you.

The non-glare coating is wonderful for me. It really softens the appearance of everything and makes it possible for me to wear glasses all day. I even drive the boat for my husband who is an avid water skier with no trouble from the glare of the sun on the water. I do not wear sun glasses and I know that sun glasses do not eliminate glare.

When I compare my old prescription glasses and the FL-41 glasses with my new rimless, non-glare glasses there is a very obvious difference.

Just a suggestion. Good luck.

Anamarie




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Reply to Anamarie
Re: Re: new member, lots of questions -- Anamarie Top of thread Archive
Posted by: Peter from Brisbane
02/15/2004, 20:24:18


Thanks Anamarie,

I remember reading your earlier post about this.

You said that you do not wear sunglasses. However I have always needed to wear sunglasses outside because the light has always bothered me - even before BEB. Do you know if the anti-glare coating can be applied to sunglasses. The FL-41s I got about a month ago don't seem to be helping much and they do some weird things with certain colors. Based on your comments, I am now thinking that perhaps I should ditch the FL-41s and get some regular dark sunglasses with anti-glare coating applied. I don't wear prescription eyeglasses.

Do you think that would work? I appreciate your help.

Peter




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Re: Reply to Anamarie
Re: Reply to Anamarie -- Peter from Brisbane Top of thread Archive
Posted by: Anamarie
02/17/2004, 20:11:24


Peter,

The FL-41 lenses with a non-glare coating might help you quite a bit. The coating itself is not expensive and can be applied to the FL-41 glasses you now have.

I do not know if the non-glare or anti-glare coating comes in verying degrees. My lenses have a very matte appearance when compared to conventional lenses of any sort.

Good luck,

Anamarie




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Another question to Anamarie - Non glare coating
Re: Re: Reply to Anamarie -- Anamarie Top of thread Archive
Posted by: Peter from Brisbane
02/18/2004, 17:11:59


Hi Anamarie,

I spoke to my optician about this and he has not heard of the non-glare coating that you mentioned. Perhaps it is not available in this country. (FL-41 was not available in this country until I nagged my optician so much that he imported some) He uses a product called "multicoat" but he maintains that multicoat is to allow more light through a lens. So this doesn't sound like the same thing.

Can I ask you to do me a favour? Would you be able to ask your optician for the product name and perhaps the name of the manufacturer of the non-glare coating and I will pass this on to my optician? Can you also ask him if the non-glare can be applied to FL-41 lenses?

Thanks again

Peter



Modified by Peter from Brisbane at Thu, Feb 19, 2004, 01:04:19

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