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Posted by: Peter from Brisbane ® 11/16/2003, 03:42:15 |
Hello All, This is my first post here. I am a 44 year old male and I have recently been diagnosed with Blepharospasm after only a comparatively short time since the symptoms began - about 9 months. I have just had the first Botox injections and the results have been good when I am indoors but there has been hardly any change outdoors. My eyelids become very heavy in bright sunlight and the symptoms become worse when I drive. I am a field based customer service engineer and need to drive to earn my living. I live in the northern part of Australia and we are "blessed" with very long bright days. I would be interested in hearing if anyone can recommend eyewear that can reduce the sensitivity to sunlight. I have bought some "slip-overs" which are large polarised sunglasses which are designed to go over the top of regular eye glasses. I put these over the top of my sunglasses to increase the glare reduction but this has only improved things marginally. I also wear a hat with a large brim to try to further reduce the glare. Does wearing sunglasses with very dark lenses work for anyone? I would also be interested in hearing from anyone who has had success via alternative medicine practitioners such as Osteopaths. I feel for anyone afflicted with this condition and I look forward to any responses to this message. Peter Modified by Peter from Brisbane at Sun, Nov 16, 2003, 03:46:22 |
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Posted by: Delaine Inman TN State Coordinator ® 11/16/2003, 08:00:21 |
Welcome to the BB. Sorry you are having this problem.
knighton@knightonoptical.com The above place in Utah developed and has a patent on a rose tint called FL41 that can be applied to filter out the percent of light you want. You can email them to get toll free number to talk to them about what your needs are. A recent post says you can have the people who make your glasses call and find out how to do the tint as well. Many of us have the light sensitivity you described. It triggers eye spsams and closure. I wear a light rose tint indoors at home and when the lighting is too bright indoors in public places I put on a very dark pair of prescription sunglasses. I had my optician make me a clip on pair to use to clip on to my sunglasses when the sun is really bright outdoors. I usually have to wear the 2 pairs when I am in a motor vehicle to ride or drive. I am an RN and certified in Holistic Nursing. I have tried everything I read or hear about or can think about since I was diagnosed in 1999. The bad news is that what works for one doesn't always work for everyone and if it is complementary/alternative medicine it is not paid for by my insurance or many others. The good news is I am much better than I was 4 years ago by trial and error and changing doctors until I found what works for me. I still am not able to work. I tried volunteering at a local nursing school who wanted to hire me, but after 2 weeks the lights in the classrooms and the stress of doing something I didn't feel really comfortable doing made me back off because my eyes got worse. Stress does not cause BEB, but it is a HUGE trigger just like many other things including lights artificial or natural. I have found that I have to listen to my body, get plenty of rest, moderate exercise, manage stress, rest my eyes in the middle of the day, focus on being as healthy as possible, stay positive, take my medication and supplements and manage my activity according to how my eyes are doing. That is pretty time consuming. I am on Social Security Disability and Long Term Disability from work. I would love to work, but at this time I just can't and do as well as I'm doing now. I stay busy. I spend probably 2 to 4 hours a day on the BB anwering messages, email, phone calls and trying to help others most have BEB/Meige/Dystonia or other chronic or terminal illness. I have a husband, 2 grown children, a granddaughter and a large extended family and many many friends. I can drive short distances most days. If I'm having a good day and I'm talking or singing I can drive longer periods. I do a support group in Nashville every 3 months (have one today). I helped start a second in the eastern part of the state. I am so blessed. Keep posting. You'll learn a lot of things to try and you will know you are not alone. Hope this helps. I'll give you the specifics of what I do later if you want to know. This post is getting too long. Modified by Delaine Inman TN State Coordinator at Sun, Nov 16, 2003, 08:05:59 |
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Posted by: Peter from Brisbane ® 11/16/2003, 18:59:25 |
Delaine, Thanks very much for this info. Have you tried the FL-41 lenses yourself or know of anybody who has? I would be interested in hearing of how well they work. Regards Peter |
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Posted by: Delaine Inman TN State Coordinator ® 11/17/2003, 07:18:56 |
Besides Knighton Optical, RL41 is available from any Opician if they order the tint from the inventor in Florida. Knighton Optical in Salt Lake City had left the impression it could only be done there but now that is not the case. Jim Wolcott at Wolcott Optical also in Salt Lake City does them. The newsletter gave this number 801-485-4474 for more info. Rose, grays and browns are available. Many many people are wearing FL41 with great sucess in different % of tints for indoor, outdoor, clip ons and wrap arounds. I tried sending mine to twice Utah but did not have success with that and finally took the FL41 tinted glasses to an optician with my prescription and he tinted them and they are great. I wear the bifocals and my lenses were small and light weight but strong prescription and Knighton couldn't get them tilted correctly in the frames. I needed to be sitting there where I could be fitted. I am only the 2nd person I've heard of who had a problem. www.liveeyewear.com make Cocoons that Dr. Anderson showed at conference to wear over glasses or your prescription lenses can be fitted in them as well. Good luck. Modified by Delaine Inman TN State Coordinator at Mon, Nov 17, 2003, 07:24:04 |
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Posted by: Peter from Brisbane ® 11/17/2003, 16:48:17 |
Thanks again Delaine, Would you possibly know the name of the inventors of FL-41 in Florida or have contact details for them? I would prefer to get the tint and have my Optician make the glasses here rather than ordering glasses without trying them on first. Regards Peter
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Posted by: Delaine Inman TN State Coordinator ® 11/18/2003, 07:30:55 |
The phone number or email address in other posts are the only 2 contacts I have that might answer your question. |
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Posted by: Doug P ® 11/23/2003, 06:47:54 |
I have found that if you go an do a search in www.liveeyewear.com they will send you a information in your area who caries the FL41 lenses. Even the wrap arounds. I did it and found a sports store in the Annapolis, MD area that caries them. Because I have to wear sunglasses when ever I have to go outside or are inside a building with floursecent lighting. Now if I'm around incandesent lighting I'm okay.But do as I say and do the search and check them out. |
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Posted by: Carl DePanicis ® 01/06/2004, 21:20:15 |
I am a 53 year old male, and have had BEH for 3 years. I sold my business 3 years ago and worked 37. How difficult was it for you to get the Social security disability for this condition (I have already applied) ? Have the sunglasses you referenced in the above message helped? and finally, what medications have been most helpful, besides Botox ? Thanks, Carl DePanicis |
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Posted by: Nilda in Virginia ® 01/07/2004, 17:44:22 |
I find that my FL41's help me a lot, especially driving. Read the article on page 9 of the January/February newsletter (just arriving at our homes). Under Helpful Hints there is a paragraph written by Jim Wolcott about your own optician ordernig the coating. Currently Wolcott Optical and Knighton Optical have been providing them to patients.
Regardless of who makes them up for you, report back to them if they don't seem to work out for you. Adjustments can some times be made. You need to determine in advance if your lenses are suitable for tinting. Nilda Modified by Nilda in Virginia at Wed, Jan 07, 2004, 17:45:00 |
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Posted by: Peter from Brisbane ® 01/07/2004, 20:18:21 |
Hello Nilda, My optician is making me a pair of FL-41 tinted sunglasses right now. This is the first time he has used FL-41 and had to import it from the USA. I would appreciate seeing the paragraph by Jim Wolcott so I can pass it to the optician before he finishes the glasses. Would it be possible to post this paragraph to the bulletin board? Thanks Peter |
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Posted by: Nilda in Virginia ® 01/07/2004, 22:51:05 |
Hi Peter,
Since your optician already has the tint the part of the article that would pertain to you would be where it says that "some lenses are coated and will not accept tint, have your local professional help you determine whether your lenses are suitable for tinting." He may want to contact Jim Wolcott before he does your lenses at info@wolcottoptical.com or call him at 1-801-485-4474. He's in Salt Lake City, Utah. |
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Posted by: Peter from Brisbane ® 01/08/2004, 00:04:14 |
Hi Nilda, I will get him to contact Jim Wolcott.
Peter |
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Posted by: Lynn Yarbrough ® 11/16/2003, 11:09:04 |
Hello Peter! We're sorry about your condition, but we will try to help you get around it. You have just had your first set of injections, which is the beginning of several before you and your doctor find the best dosage and injection points to treat your specific instance of BEB. The next one will probably be better, and if not then the next -- it's trial and error from here on out, until you get to what works for you. You must feed back data about your condition to you Dr. so he/she can improve your condition. I wear prescription sunglasses, too, after several years of big shades. It works OK for me -- after 13 years of Botox I am in pretty good shape for the shape I'm in -- and I can drive long distances for all but two two-week periods each year. So be patient, keep your sense of humor, learn to be easy on yourself now. It's a different life than you had planned, I am sure, but go with what you have. Cheers, --- Lynn |
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Posted by: June in Toronto ® 11/16/2003, 13:48:10 |
Hi Peter, welcome to the beb bb. You are doing all the right things - doubling up on sunglasses and wearing brimmed hats to try and help with the sensitivity to the sun. I've had beb/meige for 8 years and I take a herb - Bilberry - to help with my light sensitivity. I get it from a Naturopath and took it (3 times per day) for almost 2 years before it helped but I still have light sensitivity to a lesser degree. I am especially troubled with being in a car at night (never able to drive at night anymore) with the darkness and the traffic and car lights. On dull, but cold windy days, I wear safety glasses that help keep the wind out. I had to leave a position at a university because I couldn't cope anymore with getting there or the job itself - I was close to early retirement age though so it wasn't such a big problem for me as it is for you younger folk. I hope you will keep posting and learning - this is a great group of people who really care. Best wishes. June in Toronto |
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Posted by: Moderator-JB ® 11/16/2003, 16:01:49 |
Peter, Welcome to the BB! I've used these type of sunglasses for some years, they seem to be the only way I can see reasonably. The darkest shading helps and the updated styling and polarization is nicer. I wear them over Rx glasses, though I'd worn contacts for many years prior to BEB. Nice to meet you, Judy
Related link: http://solarshield.com/fitovers.html |
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Posted by: Kathy in Atlanta ® 11/21/2003, 08:03:51 |
Judy, can you order these by phone? |
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Posted by: Moderator-JB ® 11/21/2003, 14:39:50 |
I did, just remember to check the width of your glasses frames from the front. Take care, Judy |
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Posted by: Kathy in Atlanta ® 11/24/2003, 15:34:36 |
Actually Judy, someone just took me to a Walgreens and i was able to get them there so i am really hoping they help with this walking thing(lack of being able to see when doing it)!!
Also although the little chart on the link you included indicated that i needed an XL, the L fit just fine. But many thanks for putting that link in. |
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Posted by: Peter from Brisbane ® 11/16/2003, 16:45:59 |
Thank you all for your advice and good wishes.
I will keep you posted as I work through this thing.
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Posted by: Lyn Down Under ® 11/16/2003, 19:44:07 |
Hi Peter I'm on the other side of the country but have the same long sunny days. I wear Fitovers, a dark greeny-grey colour. Not that there's much choice here. I find they work very well with a hat too of course but mainly I stay out of the sun unless necessary. Ordinary sunglasses are just not big enough to block the light from the top and sides. Lyn |
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Posted by: Peter from Brisbane ® 11/17/2003, 01:19:21 |
Hello Lyn, Nice to meet you. I suppose when you think about it, we pretty much have long sunny days all over Australia!!!! I bought some Fitovers at the Qld Cancer Fund's Sun Smart Shop. They specialise in sun protection clothing. I bought the dark grey ones which fit over the top of my regular sunglasses. Unfortunately they just don't seem to be strong enough. Yesterday I actually wore 2 pairs of sunglasses and the fitovers on top. I think my wife was just about to call in the guys with the long white coats!! This made everything darker but I was still clamping my eyes. So perhaps it is not just how dark the lenses are but what colour they are that makes the difference. I had a look at the Knighton Optical website and their FL-41 lenses and these look promising. I have emailed them and asked them if they have a distributor here. I will let you know their response if you are interested. I would be interested in hearing how long you had the symptoms before you were diagnosed with BEB and if you belong to any support organisations here. Take care Peter |
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Posted by: marionc ® 11/17/2003, 02:25:43 |
Hi Peter from New Zealand. I just wanted to say that I have been treated for blepherospasm in 3 countries (I move around a lot) not always with very effective results and the treatment I got in Brisbane over three years from Dr John Harrison was terrific. I would have absolute confidence that the specialists dealing with this condition in Brisbane are world-class. Good luck with the sunglasses. I used fitovers for a long time, but am now managing fine with glasses that change with the sun and clip ons over the top of them, but this is not sufficient protection for everyone. (Also our sun here is not as strong as yours). Congratulations on the game on Sat and good luck for next week - nice to see here that everyone accepts that the All Blacks were simply outplayed on the day. |
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Posted by: Peter from Brisbane ® 11/17/2003, 16:21:58 |
Hi Marion, That certainly was some game on Saturday night. Bring on the Poms!! I am seeing Dr Harrison for Botox injections and I am sure I am in good hands. Thanks for your message. Peter |
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Posted by: Lyn Down Under ® 11/18/2003, 04:51:58 |
Hi Peter I had BEB for about 18 months before it was finally diagnosed. That was about 14 years ago. I was about 44 at the time. I saw the same doctor for about 10 years - not very satisfactorily as he only had clinics when he had some free time so often I was weeks overdue for the injections. After discovering this BB, I made more enquiries and found a wonderful new doctor. I go about every 11 weeks. This is my support group. I think there is something in Melbourne but that is not much good to me. I don't live in the metropolitan area so a local support group would not be much use to me anyway. Perhaps you would like to join our chat room tomorrow morning - 9.00am WST - I think that would be 11.00am your time. Lyn
Modified by Lyn Down Under at Tue, Nov 18, 2003, 04:54:35 |
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Posted by: songbird ® 02/08/2004, 13:30:10 |
Hello, I've reading about "Cocoon" sunglasses that fit over your presciption glasses. Has anybody used these, or know of anyone who has tried them? Thanks for the infor. Songbird in Iowa/ |
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Posted by: Nilda in Virginia ® 11/21/2003, 18:55:32 |
Peter,
Have your optician contact Dr. Moore at Brainpower Inc. in Florida to purchase the FL41 tint. The only number I have for him is an 800 number which won't work for you. I'll try to contact him next week and get more information. Nilda Rendino BEBRF Eastern District Director. |
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Posted by: Peter from Brisbane ® 11/23/2003, 01:33:00 |
Nilda, Thanks for this info. Since I last posted, my Optician has found the Australian distributor for FL-41 and is attempting to source it for me. He also mentioned some sunglasses that were available some here a few years back called "Blue Blockers" which he thinks may be similar to FL-41. He said the lenses were a chocolate - brown colour. In any case, it sounds like he has it under control and there is no need for you to follow up for me. I appreciate your kind offer though. Out of curiousity, do you wear FL-41 lenses yourself? If so, what do you make of them? Regards Peter |
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Posted by: Kathy in Atlanta ® 11/24/2003, 15:38:53 |
I know you are asking nilda but my lower wattage fl41's are invaluable to me both inside and around flourescent light, using this computer and watching tv. It's the darker ones that are not helping where they usually were. |
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Posted by: Nilda in Virginia ® 11/25/2003, 09:42:59 |
Hi Peter,
Yes, I do wear them. I have the darkest tint you can get. I couldn't drive without them. Apparetly some people respond better to some colors than others. The FL41 rose tint annoys some people. This is why Jim Wolcott adds browns or greys to customize it to the individual patient. Good luck! Nilda |
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Posted by: bigstella ® 01/08/2004, 09:37:16 |
Hi! I mentioned this before in a recent post but here is the info again. I am a former optician in Massachusetts- have had BEB from meds I took long-term since 1999. The tint FL-41 is a tint made by a company called BPI. I would be surprised if there was any optician out there that has not dealt w/ BPI before. You can tint them any % you like, 30-40% for indoors, 80% for outdoors. I wore them for a while and did not notice a big difference b/t the FL-41 tint and just grey polarized lenses. I also had an optician make up a custom tint- they will keep re-tinting if u ask them until you are happy, THEN scratch-guard, if they are plastic, after. Years ago, there was a lens called cruxite- it's sort of a peachy-pink that worked well for me. Used to be for cataract patients. Not sure they still make the lens but the tint could be duplicated pretty closely, I'm sure. Good luck and let us know! Margo |
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Posted by: PattiA ® 01/08/2004, 23:51:17 |
What meds (if you don't mind my asking) do you think caused your BEB? I'm curious, as I'm still trying to figure out what meds might have caused mine. I took Reglan while in the hospital, but only for a very few days, and the other things I've been on for a long time don't seem to be connected to BEB in the materials I've read. Thanks. ~Patti in Houston |
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Posted by: bigstella ® 01/09/2004, 20:14:55 |
I saw many doctors for over 2 years before I was diagnosed w/ Tardive Dyskinesia, a movement disorder. One of the symptoms is blepharospasm, altho' TD can occur anywhere on the body. It turned out to be the long-term use of Compazine, an anti-nausea drug similar to Reglan. These drugs (the neuroleptics) should be avoided at all costs. I was on Compazine for over 20 years w/ no monitoring by my neurologist. When I first complained of symptoms (a thumb twitch) in 1999, it was totally discounted. I have heard of people developing symptoms from these drugs after only 24 hour use so it is possible that the Reglan caused your problem. But it is difficult to prove. Stay away from the anti-psychotics too ie Haldol, Thorazine etc. Hope this helps answer your question, Patti. Good luck! Best, Margo |
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Posted by: Nilda in Virginia ® 01/10/2004, 09:41:21 |
Margo's comments as well as Anita Croce's article (Drug Reaction) on page 8 of the Jan/Feb 2004 newsletter just received should be saved for reference by every patient.
Nilda Modified by Nilda in Virginia at Sat, Jan 10, 2004, 09:42:33 |
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Posted by: Anita Croce ® 01/10/2004, 16:48:05 |
Nilda,
I want to personally thank you for taking the time to call my article to our patient's attention. As you know, this is a true story that happened to me and I feel that each and everyone of us should be aware of medications that might cause our focal dystonia to become worse due to medications that we are not aware of hurting us. I don't think anyone wants a worse case of our disorder. As we know, it's difficult enough to deal with, without doing something to make it worse. Thanks. Anita Croce, North Central District Director, BEBRF |
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