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Posted by: Kathleen ® 03/12/2004, 13:43:51 |
How did you manage to find an optometrist who could help with things like tints, etc? My original optometrist was clueless and has not wanted to see me since finding out that what he told me was "not a medical problem" (in other words it was all in my head) really was medical. I've gone to him for nearly 25 years for glasses and contact lenses, but the last 2 times I've made an appointment to see him, when I got there my appointment was shifted to one of his partners. I called around to different optometrists in our area and explained that I had beb and asked if they were prepared to deal with the light sensitivity issues, etc. I went to see the one who seemed to be most receptive to dealing with a patient who might not be a quick in and out $50.00 eye exam. Well, I must not be asking the right questions, because that is exactly what I got. He had no clue that even though beb is not an eye disorder per se, the reaction to light entering the eyes, etc, can make life miserable. He couldn't offer any suggestions as to tints that might help me deal with flourescent lighting in my office, bright sunlight when I want to work in my garden, etc. When I mentioned the FL-41 lenses some of you have talked about here, he had no idea what I was talking about. Any suggestions on other questions I could ask to help me find someone who can give me glasses that at least don't make the beb worse? |
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Posted by: Nilda in Virginia ® 03/12/2004, 16:00:58 |
The FL41 tint is sold by Brain Power Inc. (BPI) (1-800-327-2250). The local optician who makes up your glasses can order it from them and can work with you. The darkness of the tint depends on whether you want to use the glasses for indoors or outdoors. Make sure he is willing to retint them if you find they're not dark enough for your purposes. The other option is to contact Wolcott Optical (801-485-4474) or call Knighton Optical (801-585-7800). For more information click on the link. They're both in Salt Lake City and have tinted most of our glasses.
Related link: Light Sensitiviy & FL41 Modified by Nilda in Virginia at Fri, Mar 12, 2004, 16:02:24 |
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Posted by: Karen ® 03/14/2004, 10:37:18 |
Another question---For those of you who wear the lenses with the FL-41 tint. Do you wear these glasses all day long, indoors and out? Do they take the place of your sunglasses when outside? I had RK done 12 years ago to correct my nearsightedness and I really don't need glasses for daily use except for reading. So, I was wondering when you wear them, whether you need them for vision correctness besides the anti-glare capability, or if you use them specifically for the anti-glare. And, the way I understand it, I would need to get them at an eyeglass place, right? I have one pair of sunglasses from a few years ago that I had the Optometrist put the no-line bifocals in so that I could use them for reading small print if I was outside or shopping, etc. But they are tinted a darker brown/rose tint and I don't suppose I would be able to get them retinted with the FL-41, could I? Sorry if I sound confusing. I don't quite know how to word it. LOL. Modified by Karen at Mon, Mar 15, 2004, 09:30:52 |
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Posted by: Raymond Fudge ® 03/12/2004, 16:32:11 |
Optometrists mostly have no clue about BEB. What you want is an Opthomoligist, preferably a Neuro-Opthomoligist. |
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Posted by: June in Toronto ® 03/12/2004, 17:21:06 |
Just a suggestion: if you find an eye doctor (whether it be an optician optometrist/ or ophthalmologist via the telephone (perhaps you'd have to speak to a secretary for an ophthalmologist) that sounds like he/she knows their business re tinting glasses/light sensitivity, send them a pamphlet on BEB that BEBRF can forward to you. Put a note on the brochure suggesting you will call them in a week to discuss the disease you have and what they can do for you. It might help - or at least you will be making people aware of BEB. YOu are also "letting your fingers do the walking". Good luck June in Toronto, Canada
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Posted by: Nancy from PA ® 03/13/2004, 09:58:45 |
I have been going to the same optometrist for many years for glasses, contacts and back to glasses. He was the first person that I went to when my eyes started squinting and blinking back in 1998. He did not know what was wrong with my eyes, but sent me to a local ophthalmologist who also did not know what was wrong. Long story- short, I finally found a neuro-ophthalmologist who diagnosed me with BEB.
My optometrist remains interested in my condition and has allowed me to put BEB brochures in his office waiting room. I had an appointment 2 weeks ago to get new glasses, so I arrived with all the information on the FL-41's. I asked him if he could have them tinted or I would send them to Utah on my own and have them tinted. He was very interested and assured me that he could have them tinted with the FL-41 tint, and took all the information that I had brought with me. I picked up my new glasses this past Wednesday and I really like them and know that they are going to be a help. He told me that when he sent my glasses to the optical company that he uses, they, in turn notified Knighton Optical Company in Utah and they sent the formula for the FL-41 tint. My new glasses are 55% FL-41 tint. He also told me that all tinted glasses DO wear off somewhat with time. Nancy - NE PA Area Rep - BEBRF - where it is dark, dreary and only 25 degrees - where is Spring?
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Posted by: Debbie ® 03/13/2004, 22:35:03 |
Kathleen,
I saw an optometrist who referred me to the opthalmologist who now puts in my punctal plugs and injects me with Botox. I definitely think you need to speak with an opthalmologist or neuro-opthalmologist. That being said, I must tell you, quite frankly, that I have found better advice regarding BEB on this bulletin board than I have from the multitide of doctors I've seen! For example, no doctor (neither optometrist, nor opthalmologist NOR primary care physician) recommended fitover sunglasses. I read about them here, on the BEB BB, purchased a pair last week, and they are wonderful! They fit over my regular glasses, and the tops and sides block out the sunlight.They have polarized lenses. They are amazing, and cost me all of $20 at the drugstore....believe me, they are worth every penny. Now, if only my physicians had told me that a year ago, think of all the painful sensitivity to light I wouldn't have had to endure. I also just ordered a pair of non-glare eyeglasses. I am wary of the FL41's if only because various people on the website had problems with them or did not find them helpful. Others really like them. Anyway, I decided to go "non-glare" for now, hoping they will help somewhat. I'll let you know. It does make sense....the anti-reflective coating (which they now refer to as "non-glare", but they are one and the same) should help the BEB, or so I hope! I'll let you know! Keep us posted on your MD visits, glasses, etc.!
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Posted by: PDB ® 03/14/2004, 15:44:13 |
From before we had the BEB problem we were using Kevin at Gruen optika in the 1200s around 83rd and Lex in Manhattan. I have and unusual prescription and he was very helpful getting it right. When he heard about the blepharospam problems and the need for FL-41, he went to the BEB bulletin boards and tracked down the coating and has done coatings for me a couple of times. Couldn't ask for better help. He continued to help when I moved to London, doing things remotely with couriers etc. Couldn't ask for better. Peter Modified by PDB at Mon, Mar 15, 2004, 07:01:34 |
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Posted by: Kathleen ® 03/15/2004, 09:04:52 |
Thanks, everyone. I will keep trying to find an optometrist who is interested in learning something about beb. I chose the one I ended up with partly because he is affiliated with the opthalomologist that I saw when I first started having problems with my eyes. In retrospect, that may have been part of the problem, because the opthalomologist misdiagnosed me twice and seemed very embarrased upon learning what my actual diagnosis turned out to be (and maybe a little worried about liability because he referred me to another specialist for 2 surgeries that were most likely not necessary.) I did have a Crizal coating put on my new glasses. It is anti-reflective but no tint and it does seem to help, especially when looking at the computer screen. |
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Posted by: Debbie ® 03/15/2004, 16:49:48 |
Dear Kathleen,
I just read your post about the opthalmologist misdiagnosing you. Unbelievable! That's terrible! At the risk of repeating myself, I've found far more accurate information on the BEBRF website and bulletin board than I have from any MD! Good luck to you, and keep us posted Debbie |
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Posted by: Kathleen ® 03/16/2004, 08:42:00 |
I think my case is a perfect example of how uninformed the medical community is about blepharospasm. I was initially misdiagnosed with a fungal sinus infection by my family doc. When it didn't get better, he referred me to the ophthalomologist, who in turn referred me to a specialty opthalamologist at a university medical center. The second opthalamo concurred with the first one that I needed a dacryocystorhinostomy. I agreed, because I was desparate to have my eyes get better. Well, that didn't work, so in the follow-up, both of the opthalamos decided that I had muscle damage from this supposed fungal sinus infection and so, another surgery. Again, even more desparate now, I agreed. When that one also didn't work, I went back to my family doc, who had no other ideas. I went to a nurse practitioner, who sent me to an OB-Gyn because they thought maybe it was related to hormonal changes of menopause. HRT did nothing, so I was sent to an endocrinologist. They thought it might be a reaction to my Synthroid, so changed to new meds, which messed up my hypothyroidism. My next referral was to an allergist, as they thought I might have developed severe allergies. Again, no improvement in the eyes. For 6 months after that, I just decided I'd live with it. Then, it got so bad, In November 2003 I went back to my family doctor and said "DO SOMETHING", even if it's to send me to a psychiatrist. He referred me to a rheumatologist, mainly because we have a strong family history of autoimmune disorders and because I always felt this guy was the best diagnostician in the country. He spent about 15 minutes with me and told me I needed to see a neurologist. He was the first one to even think about blepharospasm, but I am so glad I went to him. He sent me to see the neurologist the same day and within a few days, I finally had a diagnosis. I was a nurse for 25 years, before I left that field for human resource management, and I had never heard of it. I had done interent searches with my symptoms and that never came up. If it had, I would have been able to diagnose myself, because my symptoms are exactly what is described on the BEBRF website. Once I could put the blepharospasm name to it, I was able to find lots of info, thank goodness. Now, while the botox has not yet produced the miracle I hope for, it is definitely better than it was. It was relief just to finally know what was going on. Modified by Kathleen at Tue, Mar 16, 2004, 08:48:20 |
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Posted by: June in Toronto ® 03/16/2004, 10:14:53 |
Most of us went through a hard time and years to get a diagnosis, Kathleen - but you truly had an awful time. I do hope, in time with different injection sites and number of units, you get more relief from Botox. I diagnosed BEB on my own - I'm not in the medical field, but after having consulted my doctor, a neurologist and an ophthalmologist without any luck, I read about dystonias, in A Woman's Own Magazine whilst vacationing in the U.K. The description of BEB sure sounded like what I was experiencing and the London clinic gave me paper work on the subject. On my return to Canada I went to another doctor and he diagnosed it within 10 minutes - confirming what I thought. Most of us have travelled the hard road but we all should get the awareness out there as best we can to help others. Best wishes. June in Toronto, Canada |
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