Newly diagnosed Blepherospasm wants to chat


Posted by Jack Cindy , May 31,2001,19:10   Archive
I'm a 58 yr. old male newly diagnosed Blephero who just got my first botox shots 7 days ago. Progress very slow - still can't safely drive - eyes clear up in the PM when I get home from work. Any tips and/or suggestions regarding what I can expect over the next several weeks?



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Re: Newly diagnosed Blepherospasm wants to chat

Re : Newly diagnosed Blepherospasm wants to chat --- Jack Cindy
Posted by Shirley-Arkansas-USA , May 31,2001,19:43 Top of Thread Archive
Hi Jack and welcome to the bulletin board. Sorry that you have been diagnosed with Blepharospasm but you have come to a good place for information. If you haven't contacted the BEBRF in Texas yet, you should take the time to do that. Their address is in the "Welcome to Newcomers" at the top of the bulletin board page. When you can, also check out the "BEBRF Main Pages" that is listed at the top of the page. There is lots of medical information there that you will find useful.

It sometimes takes several rounds of botox injections before the doctor gets the sites and dosage right. I was very impatient when I was where you are now and was really hoping that the botox would "make me all better" once again. It is a slow process and can be very frustrating.
The botox usually takes effect fully within 10 to 14 days. So you may still see some improvement. Try to keep some sort of a daily diary. That will help on your next visit to your doctor. Keep track of your symptoms. Some people are well controlled on Botox and maintain their jobs and drive while others are not quite so lucky. I think most of the unlucky ones are here on this bb for support and to offer support. Everybody's symptoms are a little different. Some of us take oral medications as well as getting the botox. Others are getting by with only oral medication.
Depending on the severity of your symptoms you may or may not be able to drive safely. I'm one that can't.
Your eyes may be doing better in the evenings if you are getting away from a stressful job situation. Stress definitely makes this worse. Medications can help with that. It might be something that you would want to talk to your doctor about.

Be sure and use eye ointment in your eyes at night to keep them from getting dry and preservative free eye drops through the day as needed.
Hopefully, you will get a little more relief from the botox within the next few days. Just be aware that it may take a few times to get it right. It is very important that you have a doctor that is very knowledgeable about Blepharospasm.

It would also be helpful if you went back and read as many of the back posts as you can. Sometimes we just have a little fun on the bb so you just need to weed quickly through those. The Main Pages, though, at the top of the page is a good source of medical information to start with.

Again welcome and ask whatever you like or tell us a little more about yourself and your symptoms and when this all started for you.

Shirley in AR.




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Re: Newly diagnosed Blepherospasm wants to chat

Re : Newly diagnosed Blepherospasm wants to chat --- Jack Cindy
Posted by Sally - in - Idaho , May 31,2001,23:51 Top of Thread Archive
Welcome, Jack. Sorry you have a need to be here, but it's a good place to come and vent your frustrations, ask questions, share information, or for the occasional laugh lines.

Shirley has given you very good answers, as she always does. We would be lost without her knowledge and the ability to get it across with clarity and compassion.

It can take several times before the doctor gets the Botox at the correct level for your situation. I noticed some improvement the first time in that the spasms were quite a bit less severe. However, it took over a year of gradually increasing the dosage before I reached a level of relief that was what I had hoped for. And then ... my last session did not go all that well. I get the injections every eight weeks and am up to the full 100 units each time. I can read again after a couple of years without being able to read much more than a headline. Even though I can't manage the two or three books a week that I could whiz through before, I am grateful to be able to read actual pages at a time. Driving ... I do on a limited, near-home basis because I don't have a regular person I can call on all that often. I save my requests for really important times when I think it will seem important enough to someone else to take me.

Please come back often. Tell us what you'd like to share about yourself and ask any questions you like. Someone is always around to try and answer or steer you in the right direction to get help.

Sally in North Idaho




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Re: Newly diagnosed Blepherospasm wants to chat

Re : Newly diagnosed Blepherospasm wants to chat --- Jack Cindy
Posted by June in Toronto (June Floyd,June in Toronto), Jun 01,2001,07:41 Top of Thread Archive
Welcome to the bb Jack - I hope some of our male colleagues will answer you as well. Sorry to hear you have beb but I believe others have filled you in as to what you can expect from the botox injections - it really does vary from person to person. I have had beb/meige for 6 years, receive 90 units of botox every 4-5 months. It works well for me except for severe side effects during the first month or so before it all settles down. Its not a fun disease (complaint/problem?) and stress definitely aggrevates it, as it does any problem - so try and be good to yourself as much as possible. Keep us in touch with your progress.

Best wishes June from Toronto




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Re: Newly diagnosed Blepherospasm wants to chat

Re : Re: Newly diagnosed Blepherospasm wants to chat --- June in Toronto
Posted by kathy , Jun 01,2001,08:22 Top of Thread Archive
welcome, jack. maybe you can get more of the guys to add to this bulletin board. they often have very good ideas but seem to be less communicative than we chatty gals.



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Re: Newly diagnosed Blepherospasm wants to chat

Re : Re: Newly diagnosed Blepherospasm wants to chat --- June in Toronto
Posted by kathy , Jun 01,2001,08:22 Top of Thread Archive
welcome, jack. maybe you can get more of the guys to add to this bulletin board. they often have very good ideas but seem to be less communicative than we chatty gals.



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