Re: benadryl
Penny, benedryl does lessen symptoms for some of us. It has anti-cholergic properties and the way I understand it, has an blocking effect on the acetyecholine which is the chemical that connects the message from the nerve to the muscle. In our case it is overactive. Botox blocks the acetyecholine when injected in the muscle thus lessening the spasms.
I am one of those who is helped by benedryl but I have to lessen the
dosages every so often due to heart beat irregularities. Most people
get really sleepy from benedryl but my system is used to it and I don't
get quite as tired although there are times I do. Hope this helps.
Joanne M. San Diego, CA
Re: benadryl
Joanne, thanks for the prompt response. I called Shirley and read your reply and also the messages that I had pulled up on benadryl by going to search. Here is another question, she has heard of or read about a drug called adrenal and is wondering if anyone can help with information on it. If you know of it I'll appreciate any information. This lady is a bit desperate, she just began to have spasms in Sept. and had to stop driving. She was fortunate enough to be diagnosed quickly and she got her first injections in Dec. she returned for second set about 6 weeks later and again about 6 weeks after that. She started with baby dose and is up to more than twice that now. You can see why she is so anxious to find help. She lost her husband in Jan. and is completely alone and unable to drive. thanks in advance.
Re: benadryl/bereft patient
How awful for the woman you are talking about. Is there any way she can get access to a computer and therefore our website? If she possibly could join us she would not feel so utterly bereft as she must do now. There would always be someone there for her here. Please tell her that WE care, and to try to contact us.
Pippa, anxious for this woman I do not even know. I am sure we all can identify with her.
Re: benadryl/bereft patient
thanks Pippa, no she doesn't have computer now but is planning to get one soon. I will definitely steer her your way and I know she will benefit from it. Right now I continue to pray for her, I want her to be as fortunate as I was, after suffering between 5 and 6 years I stopped suffering the day I was diagnosed and treated. It was one year March 21 and I'm just almost perfect eye wise. It breaks my heart to know she hasn't been helped. Will stay in touch. thanks again penny
| Uploaded file |  |
Re: Good to hear that you are doing well
Penny, it's good to hear from you again. I hope that your friend finds the help that she needs. I'm sure that she appreciates your support.
You say that your eyes are almost perfect-tell us what has helped you. Are you using BOTOX and how often and do you take any other medications? Are you working? Did you find the right doctor? Tell all. We want to know. It is so seldom that we hear someone say that things are almost perfect. I'm happy for you.Shirley in Arkansas BEB/Apraxia
Re: Good to hear that you are doing well
thanks Shirley, what I did was finally get diagnosed, after 6 years of being functionally blind and being told it was dry eyes, dr. Bradley Farris in Oklahoma city diagnosed me, started injections that very hour and from then on I'm spasm free. This was March 21 last year and I've had botox injections approximately every 3 months since. I take no other medications, I volunteer with meals on wheels. I"m not without some discomfort, I have stinging in my eyes after treatment, I have had double vision and some blurriness. These things go last a minimal time. For instance after injections, I'm near perfect for a couple of weeks, then I have the above in part, sometime blurriness, sometime double vision, sometime stinging but I can keep my eyes open and I'm so grateful for that that all the other seems trivial. These things last for a few days and then I'm near perfect again until my 3 months are about up, sometime I feel I need treatment, sometime not but get it anyway.I'm not only thankful for my dr. who is a true angel but I'm grateful to you and all that have helped encourage me. The bulletin board was a source of strength for me after the first set of injectiongs. penny
Re: Good to hear that you are doing well
Thanks, Penny for the update. It is good for all to hear when someone does well with this and can go on about their life. Sounds like you have found a wonderful and caring doctor.
Take care and check in with us, ok?Shirley in Arkansas
Re: Good to hear that you are doing well
Hi, Penny,
I can't believe you had to suffer for so many years before being correctly diagnosed. It certainly IS good to hear how well you are doing now, and I am so glad that you found the right doctor who, finally, was able to help you - who 'opened your eyes' in the real sense of the word.
It's absolutely wonderful to hear a success story such as yours. Perhaps there is light at the end of the tunnel for all of us.
We just have to believe in it - I sure do.I don't know what I would do without Botox injections. Sure, spasms are still a problem at times (blurriness being another major one), especially when stress becomes a factor, but I can't imagine what it would be like without them. Gisela in Canada's beautiful B.C. - who really, REALLY hopes you will continue doing well.
Re: Good to hear that you are doing well
thanks Gisela for the kind words, I am so thankful to be able to get on with life, I actually don't think about having blepharospasm, only when it gets close to time for more injections do I have any symptoms, well and a few days after the injections. It was 2 weeks yesterday since my treatment and other than a little blurriness my eyes are great. My dr. said he thought he could take care of the double vision I have been having after each treatment and so far I've not had any this time. Thanks for all your encouragement and I'll keep in touch because I want to encourage my friend that just learned aout her malady. She is planning to get computer so I'll encourage to visit when she does. I know you live in beautiful country, wish I lived there. If I could visit there it would make me happy. My husband was a military man and we've been lots of places but BC is the one place I long to see. Perhaps some day, penny
Re: Good to hear that you are doing well
Well, Penny, I hope you'll be able to visit us soon! B.C. will welcome your with open arms (so to speak, no doubt, and so will I if you happen to come to our area, the Okanagan Valley.Take care,
Gisela
Re: Good to hear that you are doing well
Gisela, my friend has also asked me about a drug (?) called adrenal and since I've not heard of it I told her I would inquire on the BB. Can you give any input on it? thanks
Re: Good to hear that you are doing well
I would love to be able to help but am unable to do so since I have no experience with drugs.
Can you, Shirley, help ?Thanks, Gisela
Re:Drug info-Adrenal?
Penny, I can't find any information on a drug called "adrenal". I looked in my drug books and also did a search for it on the internet and can't come up with anything. Are you sure that it is spelled correctly? If you don't know if it is spelled correctly or not if you could tell me a little more about the drug or what it is supposed to do, I might be able to find something.Shirley
|