info re blepharospasm


Posted by Patricia Soulia , Feb 11,2001,19:12   Archive
Would be interested to hear from others with this problem. How long have you been receiving injections? How many injections do you receive per visit to your doctor? Are these injections given in a sitting position or lying down. To date I have receive 4 treatments - 6 injections the first time, 12 the second, 18 the third and 18 the fourth. To date Ihave received a little under 40 units. Results are not what I expected. Am I being impatient and things will get better? I am extremely sensitive to light and at times Television bothers me. I must say, my eyes do not close and stay closed for any period of time however this condition is very frustrating to me. I was also told I could possibly have a mild case of meige syndrome. Would appreciate a response from someone with this same problem. Thank you.



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Re: info re blepharospasm

Re : info re blepharospasm --- Patricia Soulia
Posted by June in Toronto (June Floyd,June in Toronto), Feb 12,2001,07:43 Top of Thread Archive
Hi Patricia, welcome to the bulletin board. I have been getting botox for 6 years now - I have beb/meige, I get about 12 injections and 90 units of botox. Boxtox works reasonably well for me and I go 4-6 months between treatments - I do have a lot of side effects for about 3-4 weeks after the injections (pain, burning, etc.) The meige is only really bothersome when the botox wears off. I use preservative-free drops/creams constantly, day and night, 365 days of the year, can now watch tv and see a movie (could do eithr for 2 years), as long as its not a James Bond-type with flashing lights. I can't read a book, only short articles and don't look at this computer as I type - only when the movement stops - I cannot use the chat room on this board. I drive short distances but did have to give up my job because of this disease - its not much fun, but life can be good with some changes, a positive outlook and hope for the future. Best wishes. June in Toronto



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Re: info re blepharospasm

Re : info re blepharospasm --- Patricia Soulia
Posted by Judi in NC , Feb 13,2001,14:08 Top of Thread Archive
I have had Botox only twice. The first time I sat for the Botox in the neck (for spasmodic torticollis) and lay down for the ones in the eyelids. I had good effect within 24 hours and was able to go for a little over 6 months before I had to go again in order to be able to keep driving and working. I had my second set two weeks ago and once again started having good effect the next day. I sat up for both the neck and eyelids this time. I have no idea how many injections I am given nor the total amount of Botox. I am very lucky that I can take enough Botox and medication to continue with a fairly normal life. There is a lot of adapting to do. You find what you can do and let go of what you can't.



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Re: info re blepharospasm

Re : Re: info re blepharospasm --- Judi in NC
Posted by June in Toronto (June Floyd,June in Toronto), Feb 13,2001,14:50 Top of Thread Archive
Judi - you might find it interesting to know how many units of botox you get for the neck - and then for the eyelids and also the number of sights injected. Its worth being well-informed for future reference. June in Toronto



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