Posted by: Lynn Yarbrough ®
07/07/2003, 13:29:58
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Botox attacks and paralyzes the muscles around the eyes that cause the spasms we are all familiar with. This is a process that proceeds slowly, e.g. about 1-2 weeks, after which the eyelids should relax and behave normally. That is, until the body regenerates the tissues that were paralysed and the spasms resume. It's working when your lids are normal, not working when you are spasming.--- Lynn
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Posted by: Gayle Register ®
07/08/2003, 17:03:46
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I can work all day on the computer and put puzzles together all night. As soon as I quit, my lids shut. They do not squeeze shut, they just close. If I am doing anything else (television, talking to someone) if I hold my breath I can open my eyes for a short time. Or I have to hold them open. If the Botox is working at all, it doesn't seem I should have to hold them open. Any opinions? I feel like I am wasting my time and money on the Botox or the doctor. Gayle
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Posted by: Lynn Yarbrough ®
07/09/2003, 12:58:56
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Be patient, Gayle. Maybe this trip is not what you expected, but the next one will be a little different, probably a little better. Talk to your Dr. about what you are experiencing. If he's any good at all he will change your dosage or injection points, and see if that's any better. YES, this kind of treatment seems to take forever and won't satisy you all that often, but in the long run it can return you to a normal life.I find BEB to be just plain annoying. It stays with us until we die, and nothing works permanently or for everyone. So we have to choose among a whole bunch of unpleasant alternatives and settle on one or two that seem to work best. Sorry, but AFAIK that's just the way it is. Right now I'm in the stage where the effects of the Botox are beginning to wear off. In another 3-4 weeks I will really be in the dumps. But by then I will have my next set of injections, perhaps a bit different than last time because currently my left eye gets lazy after my shots. But maybe not; there is not much slack in my dosage amount, only in placement. I've learned to live with it, and I am so grateful for what I have in this therapy and this forum that I wouldn't exchange them for anything. I hope you can get to that point soon. I'm also praying for you. --- Lynn
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Posted by: Shirley-Arkansas-USA ®
07/09/2003, 15:58:55
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Hi Gayle
Unlike Lynn, the BOTOX never makes my eyes normal for any length of time. I get the Botox injections because they stop the real tight painful squeezing that comes with my BEB. I do not blink normally even when the Botox is working. My eyes still want to close and it is difficult to open them at times. Concentrating on something....like the computer....usually allows them to stay open.
I'm not wasting my time by getting the injections as I know what it is like to not get them. It is functional blindness and besides that, it is painful. The botox (since my myectomy) allows me to be more functional. Lynn is one that gets the injections and seems to be basically symptom free for months. I only wish for that. I am happy for him but many of us don't get that kind of result and it may or may not be due to injection placement or technique.
I initially thought that was the kind of result that I could expect. After 4 plus years, I know that is not the case. It takes several days for my injections to start working and then I have a progression of improvement(or side-effects) for about 2 weeks. Things level off for the next four to six weeks and then I start a gradual decline. I get my injections every 8 to 10 weeks.
Everyone is a bit different and I'm not sure what you individually can expect to get from the Botox. It does allow some to be symptom free....for others it stops the pain but doesn't open their eyes and then you have everything in between that. Time and trying different injection sites and different doctors will be the only way to find out.
I wish that I could be more positive about this but it is the way things are at this point and time.Anybody else have a take on this?
What do you expect from your botox injections and what is it that you actually get? Shirley in Arkansas
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Posted by: Mary, upstateNY ®
07/09/2003, 21:39:44
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Gayle - I feel I am one of the lucky ones with BEB. It's a life-changing situation, for sure, but I am able now to pretty much function normally. After many years of different drs., amount of Botox, placement sites, and a limited myectomy four yrs. ago, I now consistently receive 50 units every 8 weeks. After I receive my shots, it takes a couple of days to be "normal" and I really need them after about another 8 weeks, so I have appts. scheduled out exactly as far as he is taking appointments! I feel this way especially since I have been reading the BB and found out how other people do or don't manage. I do occasionally bump into walls, or have to walk slowly so I don't stumble or something, and I do rest my eyes (just close them for a few minutes) often. I have no trouble "looking down", like reading or sewing.I am very sensitive to the sun, but guess what?! Since I took myself off hormone pills that isn't as bad, either - I was breaking out in a rash every summer, and squeezing my eyes in the sunlight before. Of course I do have to wear sunglasses. My eyes, too, just want to shut themnselves - they don't spasm that I can see, although the newrologist tells me that he sees it. Mary
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Posted by: Ann Doyle ®
07/10/2003, 17:53:29
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Maru . It soundslie you have had exactly what I need. I know I needa myectomey. My problem is getting someone tp gp writh me. I live in KY and want it done inUtah bye Dr. Anderson. The air fare plus added expensies would be enormouse. I know there must be someone trust wowrth wyo is kind and would do it for a moderate price who lives in jUtah, Salt Lake City. A NUN? A collage girl who needs a little casch. but if my eyesa are closed My creditcards, money and airplane ticket could very easily be taken. I also have a Dr. who knows exactly where to give my shots. We talki about the last ones and what workd sot they are always changing. My big fault with him is that they last only five weeis whichi think the myectomy would help some but he only gives them every 12 week. I have been getting them every 10 week and he hasn't noticed. I think he would if I made them every 8 weeks. Ann Doyle
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