Blepharospasm Bulletin Board

IS BOTOX WORKING?
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Posted by: JEAN/NY
11/28/2003, 15:08:19


Hi everyone. I just had my fourth Botox injection and still do not feel total relief. It is still difficult to drive and watch TV and I continue to have eye closure often. Is this the best that I can expect or do most of you have no symptoms after your treatment? I am wondering if it is really working for me yet. Thanks for listening. Jean in NY



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Re: IS BOTOX WORKING?
Re: IS BOTOX WORKING? -- JEAN/NY Top of thread Archive
Posted by: Ann Doyle
11/29/2003, 12:28:44


Talk to your DR. next time and tell him. Maybe he could give you a much higher dose. I got 220 MU's my last visit, which was befor my myectomy. My very first visit, he only gave me 25 MU's , Drs usually start witha small dosage and build up. Ask your DR. how much you are getting. How much you got each of the 4 times. He should have a record of it and a "map" of your face .Which may not be a map at all but how much he injected in each muscle . If he doesn't have a lot of answers, you may want to find another DR. Ann Doyle



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Re: IS BOTOX WORKING?
Re: IS BOTOX WORKING? -- JEAN/NY Top of thread Archive
Posted by: June in Toronto
11/29/2003, 16:04:39


Hi Jean, do as Ann said and check with your doctor - if you need more botox (I get 90 units total) then that may help and, has the doctor changed the injection sites to see if that helps as well? Some people don't get as much relief from botox - perhaps medication along with it is necessary. In some cases the eye closures may not be helped much at all with botox and/or medication. Patience is needed with all this and I know thats so difficult when you are having these problems. I hope things improve for you.

June in Toronto




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Re: IS BOTOX WORKING?/Jean
Re: IS BOTOX WORKING? -- JEAN/NY Top of thread Archive
Posted by: Kathy in Atlanta
12/03/2003, 08:25:16


I have had my botox lowered slightly and since my eyes are not doing the usual thing that they used to after this change, it is still hard for me even to figure it out. One thing though, after more prolonged side effects it seems to be lasting longer.



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Re: IS BOTOX WORKING?
Re: IS BOTOX WORKING? -- JEAN/NY Top of thread Archive
Posted by: Shirley Barr in New Mexico
12/04/2003, 19:27:13


Hi Jean.
Unfortunately, Botox does not always give Total Relief. I think for some, that it does come close to "total relief" for a period of time and this time frame can vary from person to person and may also vary each time that you get injections. Botox is far from a perfect treatment option but it is the best that we have.
For me, Botox stops or lessens the intense squeezing and spasms around my eyes but really doesn't ever totally stop the mild squeezing or prolonged closure (especially if I am tired or stressed). I still have difficulty getting my eyes to open at times even when they are not tightly squeezing. Botox, for me, merely makes me more functional but never totally relieves my symptoms. I've also had an upper limited myectomy approximately two years ago. The surgery did help but is not a cure...it just helped to make me more functional along with the Botox and medication. I still do not drive but probably could on occasion for short distances...but nothing that I could trust. Sometimes I can watch TV and sometimes I can't. Same thing with reading. I know that the Botox works and is doing all that it can for me...it just isn't going to make things like they were before BEB. The first couple of years of BEB, I kept waiting to get the injections "just right" and to be symptom free. I think that after 4 plus years, I've given up on waiting for that to happen and have resigned myself to things as they are. I and my family know pretty much what I can and can't do and that varies from day to day or from hour to hour.
Now that I've depressed you, I will say that many people do get excellent results from their botox and lead pretty much normal lives in between their injections and are able to drive and continue to work. Sometimes it takes awhile to get there and others have good results right away. Sometimes a change in doctors is in order as all doctors inject a little differently and that may be all that it takes. In my time with BEB, I've had 6 different specialists do my Botox injections and I have gotten different results with each one.

Talk with your physician about your results (or lack of) and see what changes can be made. When he or she feels that they can do no more for you then look elsewhere. Don't give up.

Shirley in Arkansas




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