Re: eyes burning/New To Bulletin Board |
Hi Charles and welcome to the beb bb. Sorry you have this disease but you've come to the right place as we have been there, done that.
I've had beb/meige for about 7 years now and for the first 2 years I couldn't be in the same room as a computer or a tv - let alone watch them. That has changed now and I can watch tv as long as the lights in the room are on and pointing up to the ceiling (as in a torchierre lamp), although I still don't watch a moving computer screen, just click and wait for it to stop moving before I look. I can only read short articles at a time - no more books I'm afraid - its a strange disease!
I am able to drive short distances when the botox is working for me, only short non-stressful distances though. I'm one of the lucky ones that botox does work - I get 6-8 weeks or awful side effects after the injections, but then the botox lasts about 4 months or so. I'm not `normal' though even then - even as a passenger in a car at night I have to cover up my eyes as the brake and traffic lights really hurt and my eyes go into spasm, so I don't go far at night. Others on the bb can't drive at all.
There's lots for you to learn about this disease - contact the BEBRF and get information if you haven't already, and tell us more about yourself - what you are diagnosed with, what kind of doctor you go to, how many units of botox do you get and how many sights are injected, etc.etc? You have come to the right place for caring and insight into this disease. All for now - I'm sure others will post - hang in there.
June in Toronto (beb/meige)
--modified by June in Toronto at Thu, Jan 03, 2002, 17:07:43
Re: eyes burning
Welcome to the BEB BB. As June said, you've come to the right place. Almost everyone here has or is experienceing the same thing you describe in your post. Have you been diagnosed with blepharospasm? How clong have you been getting botox and how many units do you get? You might want to check out the BEBRF web site as June also suggested. Good luck...
Dee in OR
Good advice from June and Dee. Welcome to the BEB BB. It's a good place to come for answers, queries, humor and to let off steam. We're all in somewhat of the same boat.
My symptoms are much the same as yours. Watching TV is very difficult and I only drive short, well-known distances ... sometimes not even able to do that. For a little over a year, I could not read at all except for big headlines. That was extremely depressing to me as I am a former librarian and books are my life. After several Botox sessions, I regained the ability to read normal print on a limited basis. For some reason, it is once again becoming difficult for me to do that.
Sometimes, riding in a car as a passenger is quite uncomfortable and I usually let my eyes stay closed. I tend to get off balance easily.
How long have you been having Botox? I get around 100 units every eight weeks and it is beneficial, but certainly no cure. I've been having them for about 2 1/2 years.
Please tell us as much about yourself as you care to share. Come back soon and often.
Sally in North Idaho where it's drizzly and foggy today. BEB/Meige
Re: eyes burning
Welcome to the BB. Keep a check on it regularly and you will get lots of help. It has been a source of much good information for me.
Yes, I have all the problems you mentioned. I am 56 years old, and was diagnosed with BEB over eight years ago. For the first three years the botox really helped, and I got along quite normally. Then my condition worsened, and the botox wasn't doing the job. I began to have other problems also. I have not driven for almost three years, except on an occasional trip to town one mile away. Riding in a car is also very hard, as is walking. And of course, I am only able to "listen" to TV; reading is most difficult most every day, all day. I am self-employed, and my work is also greatly affected, even though I work from home. Conversations and crowds are also triggers for spasms, and all the other meige and breathing problems. I take Klonopin, and it like the botox, is somewhat of a help, but unfortunately I am regressing more all the time with this disabling disorder.
You are not alone. I wish we could tell you there was this or that treatment you could get and all will be OK, but it just isn't that way. We have to take each day and each hour as it comes, never knowing what it will bring. Please post again and ask any questions anytime, because the good folks on this board have first hand knowledge and experience that can help you.
Tim in PA, wishing you the best.
Re: eyes burning
Hi Charles and welcome to the BB. I am a fairly new joiner myself, but think it is great. I feel that I can really be understood now as I talk to people who have the same problem as I. You are not alone. I experience the same things as you, sometimes better, sometimes worse. Bright lights raise havoc on my eyes. I did get photo-grey lenses for my glasses and it helps tremendously. I also only drive short distances when I do drive and also read a little bit at a time. I also have meige syndrome along with this other which has been under control since my last botox injections 3 months ago.
I hope you have a good doctor who will work with you and is understanding. I know I do. It took my doc a while before he could find the right dose of botox for me. It was very discouraging there for a while, but I feel I'm on the right track now.
Again welcome to the BB. Hope we here from you often and good luck.
Carol Brown - Naselle, WA
Re: eyes burning
hi charles, you should write or e-mail the foundation and request that the newsletter be sent to you. the current one has alternative treatment of botox a and b , that they are working on. also some of us are having our doctors change the sites of our injections , if they haven't been as effective. you also might need additonal medication , such as a muscle relaxant , to help you with this disorder. you should also be using preservative free eye drops on a daily basis to help alleviate this eye burning sensation and keep your eyes from becoming overly dry.
--modified by kathy at Sat, Jan 05, 2002, 06:41:23
Re:for Charles: Newsletter is $15 per year
Just wanted to make sure Charles knows there is a subscription cost so that he doesn't have a delay in receiving his newsletter. It's weel worth the $15.
Sally in North Idaho ... wondering if Kathy had snow and ice and made a snowman in Atlanta????
Re: Re:for Charles: Newsletter is $15 per year/sally
yes! we had lots of snow, supposedly the largest amount in 10 years, however i don't think it was as bad as the blizzard we had in the mid 90's where we had really loud thunder during the snow which is really a rare occurence. the snow has melted alot and we have freezing rain, now. the storm moved towards the carolinas and caused a huge amount of traffic accidents. people who don't know how to drive on it have absolutely no idea of how it feels when you lose traction. i lived and drove in snow country for years with 2 little kids, i can't believe i survived the fear that would accompany me as i encountered endless accidents along the roads there,as i took my kids to their activities.
what about idaho?
no, sally, we didn't get a chance to play in the snow as phil was rather shellshocked after driving 10 hours in those dangerous conditions to get home and my first priority was to get to the grocery store after being cooped up here alone for almost 2 weeks. His idea of fun, however , was to pelt me from behind with snowballs when i was helpeless and my hands were full.
the kids here in atlanta i'm sure had a ball, as we have passed many melting snowman and some of them got to sled for the first time.