Light problem


Posted by MARY LEDBETTER , Nov 14,2001,10:59   Archive
I went thru a period of seeing doctors and finally went to see DR. S. Hamilton in Seattle and was told I had blepharospasm. My biggest problem was light and could't keep my eyes open. I got my first botox the next month. I did well for 2months, then my eyes began to close even with wrap around glasses. Got second shots and 3 weeks later my eyes closed for a day, went back to Dr. and got more botox. He said I also had apraxia. Know there are other treatments for this. Two days later my eyelids closed for 3 days. I couldn't go to work. I have been off for 5 weeks and will be untill the end of November.
I can easily except blepharospasm at my age of 68 years. But am flustrated at present and want to talk to other with blefro and learn more.



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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by June in Toronto (June Floyd,June in Toronto), Nov 14,2001,11:25 Top of Thread Archive
Hi Mary - I believe you are new to this bulletin board - so welcome. If you haven't already, you might want to contact the bebrf office (link attached) and get literature on the subject of beb and join the Foundation to obtain their wonderful newsletters, which prove to be very helpful. Others on this bb have apraxia and I'm sure they will post a reply to you. I'm sorry you have this disease but you've come to the right place to get caring help and some laughs. Best wishes to you and keep posting.

June in Toronto who is coming to the beautiful city of Seattle in December for the first time - I'm looking forward to it.

Related link: http://www.blepharospasm.org/index.html#13

--modified by June in Toronto at Wed, Nov 14, 2001, 11:26:15




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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by Delaine Inman , Nov 14,2001,13:42 Top of Thread Archive
Welcome to the BB. June gave you good advice to get started and read some posts over the last few days and you will get some of our stories. Glad you found us. Keep posting. I take Botox, Klonopin, and had a limited myectomy, but I have no consistent patterns without symptoms that would allow me to work. It is frustrating to deal with, but I take it a day at a time. The FL41 sunglasses might help. I wear 2 pairs of sunglasses in a vehicle and a cap as well when I'm outside. I do better looking down. I use blue or pink lighting in my house or the frosted blubs in fans and chanderliers.



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Re: Light problem

Re : Re: Light problem --- Delaine Inman
Posted by MARY LEDBETTER , Nov 14,2001,14:18 Top of Thread Archive
Thanks for an answer. I plan seeing about the FL41 glasses as the DR. has time to evaluate the problem. I love to read,do crafts and garden. Having learn to cope with other problems this one is easy . Living alone it is a challenge to organize my home and clothes. I do worry about getting to DR. if weather is bad. Having a dog helps for company a lot.




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Re: Light problem/delaine

Re : Re: Light problem --- Delaine Inman
Posted by kathy , Nov 15,2001,08:04 Top of Thread Archive
delaine, where do you get these blue light bulbs? i have seen i think the soft pink ones. ALSO, are you noticing that the celebrex is causing you to be more light sensitive??



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Re: Light problem/delaine

Re : Re: Light problem/delaine --- kathy
Posted by Delaine Inman , Nov 15,2001,18:23 Top of Thread Archive
I've been finding them in the grocery store and Lowes. I can't tell that the celebre has affected my BEB either way. It has helped the soreness of muscles with fibromyalgia after working in yard really hard.



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Re: Light problem/delaine

Re : Re: Light problem/delaine --- Delaine Inman
Posted by kathy , Nov 16,2001,04:57 Top of Thread Archive
okay, thanks for replying . i am now working on changing some of the lighting here, trying to replace the bulbs that hurt my eyes so much!



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Re: Light problem/delaine

Re : Re: Light problem/delaine --- kathy
Posted by Delaine Inman , Nov 16,2001,09:58 Top of Thread Archive
3-way bulbs and dimmer switches are also great with pink, blue, and frosted blubs. Also the lamps where the shades are upside down and direct light up toward the ceiling (forgot the name...help me Shirley or somebody, I'm having a senior moment or Synapse Lapse and can't get it off the tip of my tongue or finger tips).



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Re: Light problem/delaine

Re : Re: Light problem/delaine --- Delaine Inman
Posted by Christel-California , Nov 16,2001,10:29 Top of Thread Archive
Delaine, do you mean "Halogen"?



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Re: Light problem/delaine

Re : Re: Light problem/delaine --- Christel-California
Posted by Delaine Inman , Nov 16,2001,15:26 Top of Thread Archive
No



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Re: Light problem/delaine/torchiere?

Re : Re: Light problem/delaine --- Delaine Inman
Posted by Sally - in - Idaho , Nov 16,2001,18:59 Top of Thread Archive
Delaine, I think you mean "torchiere" ????

Sally in North Idaho




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Re: Light problem/delaine

Re : Re: Light problem/delaine --- Delaine Inman
Posted by June in Toronto (June Floyd,June in Toronto), Nov 16,2001,12:39 Top of Thread Archive
Torchier (torchiere) is the name for the light standard that directs lights up towards the ceiling - I put that on my list of things to help beb in a post many, many moons ago!

June in Toronto




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Re: Light problem/delaine

Re : Re: Light problem/delaine --- June in Toronto
Posted by Delaine Inman , Nov 16,2001,15:28 Top of Thread Archive
Yeah, that's the word. Even Walmart carries them. Thanks.



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Re: Light problem/delaine

Re : Re: Light problem/delaine --- Delaine Inman
Posted by kathy , Nov 16,2001,15:14 Top of Thread Archive
thanks. i have some places that really need to be switched to different bulbs. i tried those new GE real life bulbs and they are not helping.



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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by Shirley-Arkansas-USA , Nov 14,2001,16:53 Top of Thread Archive
Hi Mary. Glad to see you got on. Welcome to the Bulletin Board. Blepharospasm is extremely frustrating. One of the quirky things about it is that some days may be a lot worse than other days. Sometimes I can figure out why but other times I don't have a clue as to the cause. Apraxia is one of the most difficult aspects of BEB to treat. Botox will help the squeezing but it does nothing for the Apraxia. In fact, botox can make it worse as it can weaken muscles that are used to open the eyes.

I am a registered nurse and had to quit my job when I developed this. I had never heard of Blepharospasm and neither had any of my friends in the medical profession. It was difficult for me to give up my job as I enjoyed it and found it rewarding. I am now on SS disability.
In the beginning, I had good days and bad days. My eyes just wanted to stay closed. The botox would relieve the squeezing but I still couldn't get my eyes open. After almost 2 years of little relief, I had an upper myectomy done. This has helped with the apraxia problem. I still have Blepharospasm and need to take medication and botox but things are definitely better. Just recently things were worse for me because I had to stop a medication that had been helping me but I'm trying a new medication that seems to be helping some.

Ask whatever questions you like and someone will be here to answer you before too long. I haven't been posting as much recently as my home life has been more hectic than usual but I did want to say hi and welcome you.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Wed, Nov 14, 2001, 16:54:41




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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by Joann Humphrey , Nov 14,2001,22:10 Top of Thread Archive
Welcome to the BB. This is a wonderful support group. You've already rec'd great info. Be sure to contact the BRBRF in Beaumont TX, if you hven't done that They have an excellent newsletter.
Joann in Ark.



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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by kathy , Nov 15,2001,08:01 Top of Thread Archive
welcome, mary. i am having an awful light sensitivity problem at the present time. i have had this disorder for quite awhile also. the photosensitivity is partially caused by the brightness when all the leaves fall from the trees. the fl41's help alot! both in artificial and outside light but there are certain times of day when even they don't help me with this problem.



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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by Sally - in - Idaho , Nov 15,2001,21:34 Top of Thread Archive
Dear Mary,

Just want to welcome you to the BB and encourage you to drop in often, with any comments or questions you wish.

I am very sensitive to any kind of light ... sunlight and fluorescent in particular. It is painful and one of my most severe symptoms. I am 66 and live near Spokane, WA.

Lately, I've been dealing with more pressing health problems and not posting here as often, but I do scan the BB every day or so.

Good luck in finding relief for your symptoms.

Sally in North Idaho BEB/Meige




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Re: Light problem

Re : Light problem --- MARY LEDBETTER
Posted by Christel-California , Nov 16,2001,10:37 Top of Thread Archive
Hi Mary, I'd like to add my welcome to that of the others. Can barely look out of my eyes these last few days, so will let it go at that.
Good luck and come back often

Christel in Ca.




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