Re: range of Botox units
Hello, and welcome to the bulletin board.
Generally speaking, I think most of us get somewhere between 40 - 100 units total for our blepharospasm. Everyone is a little different and some people may get by without quite that much and a few get a little over 100 units. I was getting 100 units-starting out with 50 units for my first injections. I have had an upper myectomy and the last time only got 35 units total. I only received them in my lower lids, though.Most doctors want to wait at least 8 weeks and many more won't give the injections more often than once every 3 months. Some will though. You will just have to check with your doctor. If you are newly diagnosed and just starting to receive botox, you need to know that it sometimes takes several sets of injections before the proper dosage and sites are found. It is a slow process and can be extremely frustrating. Feel free to ask whatever you like or tell us a little more about yourself and your symptoms. I'm 49 and have had BEB for about 2 1/2 years. The botox didn't work well for my apraxia problem so I recently opted to have an upper myectomy done.
You might want to check out the BEBRF Main Pages at the top of this page and read over the medical information there on Blepharospasm if you have not done so already. Shirley in AR.
Re: range of Botox units
Thanks for the response. My wife is 42 and has been diagnosed in the last six months. Three treatments at 25, 25, and 50 have not given any relief. Was just trying to get a feel for how much more room she has before we consider surgery. Was also a little concerned that based on the material on this site a 5 week wait might be a little short. No where do they say what the risk is if the shots are given too frequently? Thanks.
Re: range of Botox units
There are, I think, two risks you run with taking Botox too frequently. The first is that you may become overmedicated, and since Botox is one of the more dangerous toxins around, most Drs are very leery of that approach.The second is closely related: if the last dose of toxin is still in your system, the Dr. can't judge how much you will need to get up to an effective dose. It's much like a situation I ran into a few years back in trying to design a system to mix gasses for Scuba tanks: since allowing the tanks to become really empty is bad (water vapor can get in and cause the interior to rust, depleting the oxygen), it's next to impossible to figure what is currently in the tank, which you need to know to refill them. My suggestion is to be patient and let the treatment run its course as you work out the optimum dosage level and injection sites. That usually takes more time that you would think, but it's worth it. Work closely with your Dr. and communicate freely; keeping a log of how your eyes feel each day is valuable. Do not overlook the value of stress management as a tool in dealing with the BEB. --- Lynn
Re: range of Botox units
Even though I have had an upper myectomy, I don't recommend jumping into surgery at this early stage for your wife. It is not a cure. Give your doctor a little more time and if she continues to not get relief, change doctors and try someone else. Different doctors give the injections differently and that might make a big difference. 25 units is a very low dose.
Lynn has offered you good advice, also. I know that it is hard to be patient. It would probably be helpful to both of you if you would read as many of the back posts as possible. Your wife will find that she can relate to many things and won't feel so alone with this. It will also give you as her husband a better understanding of the disorder and how it effects all of us. There are page numbers at the top and the bottom of the page and you can go back a long ways and look through old posts. Some of the fluff and humor that we sometimes get into won't be there so it will be easier to just find factual and helpful information.
Thank you for helping your wife with this. I'm sure that it means a lot to her. Many spouses are not so supportive. Know that this also effects you and your lives together and certain things will have to change. Someone is always hear to answer questions and offer support.Shirley in AR.
Re: range of Botox units
I receive 100 units every 8 weeks. My first set of injections were unsuccessful and a new doctor had me wait 4 weeks before he would reinject me. I am 32 and have had beb for 6 years - botox for 5. Location of injections is very important as well. I have been seeing my current doc for 4 years and he does a series of around 18-20 sites which helps alot. Most doctors will not inject any closer than 3 months. My doctor switched me around a year ago to 8 weeks because I was struggling so much and my kids are now 3 and 6 so he is willing to do whatever I need to make it thru each day to care for them.Kelly in Dallas - feeling better after botox last week!
Re: range of Botox units
hey kelly, Nice to meet you!
Who is you doctor in Dallas?
Mine is Mark Mazow.
Re: range of Botox units
I see 2 doctors. A neurologist injects my jaw for meige (Dr. Wooten-Watts)and an opthalmologist injects my eyes for beb (Dr. Merritt). Both are at Presby Dallas.
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