Re: eyes open |
I'm also pretty new to this botox thing. I've no had injections 3 times in 6 weeks and what I've found is that my eyes act differently each time and I have different side effects each time but not the miracle cure the doctor had led me to believe was expected. I am wondering if you can find a doctor who injects different sets of muscles. I am trying to find a new doc. in California, (or anywhere for that matter) who has some empathy and can talk about options. I don't know where you live but there is a Dr. Keltner at the UC Davis med center who is supposed to be quite good.
Re: eyes open
Hi Becca and Owen,
I know that it can really be frustrating. Everybody is different. I do believe that there are people out there that have good luck with the botox injections and go on about their lives in a relatively normal fashion, but most of them are not on this bulletin board.
My eyes have not been "normal" since this began for me 2 1/2 years ago. My standards for a "good eye day" have also changed.
Hopefully you will see improvement with proper treatment but I don't think that you should or can expect your eyes to be normal. I'm not trying to be mean or cruel but realistic. Things can improve, though and you should fight for that improvement. Talk with your doctors and if they won't treat you as an individual or if you think that you are not getting anywhere, do try someone else. All doctors inject differently and have and use different techniques. It will still take patience as it does take several tries to get things right. Really, though, if you are getting nowhere, call or email the foundation and ask them for names of other doctors in or reasonably close to your area. Ask for names of people in your area with BEB and call them and see who they are having luck with. It may take medication and botox.
Believe me, I still get very frustrated with this and others have been dealing with it a lot longer than I have. I think that you have to be able to talk with your doctor and they have to be caring and compassionate and want to help you. They need to be able to offer you and tell you what all your treatment options are so that you can make informed decisions. It is not an easy road and we on this board are traveling it every day. Arm yourself with knowledge and ask questions.
Re: eyes open
Hi Becca & Owen, I have had bleph. since 94. Botox worked or me the first time I received my injections. I was diagnosed early. I of course started with meige some time after that, it was all kind of gradual. The only problem I would have was when my eyes didn't shut completely after a few days, I would have dry eyes. It was very scary to me at first, because I wasn't sure what was happening to me. I was able to live a fairly normal life, & drive,(some) read and sometimes watch TV. I have tried really hard to concentrate on the things that I can do & not dwell on those that I can't. Sometimes I still do some things that I probably shouldn't be doing, like mowing my grass. Somethings I am determined to do as long as I can get my with it. I try to keep a positive attitude, but there are days that it's almost impossible, especially when you run into things, or trip over something on the floor that I didn't see, like he dog. When a lot of those things run together, that's when the pity party starts. My injections aren't working as well for me now, so I need to look at other options.
I've tried only 2 different medications & neither one worked for me.
If you can go to the conference, that was a great help to me. Just knowing there are so many others with the same disorder made me feel better. My husband was more understanding after that also.
Re: eyes open
It can be very frustrating trying to find that optimal level which is right for you but hang in there. My botox works ok but could be better. It took me 3 doctors to find one that injects the way I need to be injected and is sympathetic and listens. I receive 100 units with a total of 18-20 injection sights every 8 weeks. It is the ONLY way that I function around the house and with the kids. My current doctor gives a series of injections around the brow, temple, upper cheek and upper bridge of the nose as well as in the corners of the lids. This has helped with the headaches alot. Sometimes I have a day here and there that my eyes open like normal but "normal" has changed for me. Even when my lids don't squeeze they are still "droopy" and looking at pictures of myself has become a "NO-NO"! Good luck in finding the right doctor for you. I found my doc thru the foundation so you may try them.
Kelly in Dallas