Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 10,2001,11:02   Archive
I was diagnosed with BEB and Meige Syndrome December 13,1999 by a neurologist. He immediately prescribed klonopine. Over the next 6 months, I deteriorated in terms of my general health. I had significant short term memory loss, slurred speech and an ability to find the word I wanted, as well as difficulties associated with coordination and balance. After discontinuing the klonopine, my memory is improving. My thoughts are better organized, and my speech is clear. I no longer trip and fall over the least little thing. It has been very noticeable by
those who have ongoing contact with me. My sister told me last week that she has her sister back. People who talk to me on the telephone have remarked how much better I sound. My daughter says her mother is now present. In my opinion, these things made dealing with the BEB secondary and caused me to be depressed and wanting to isolate, because I was embarrassed and thought that people might think I was under the influence. I feel like I have a new lease on life.

Recommend Current pageAuthor Profile
Replies to this message

Re: Klonopine/Lumps in your neck/shoulders???

Re : Klonopine --- Joanne Johnson
Posted by Delaine Inman , Mar 10,2001,21:06 Top of Thread Archive
Joanne how much were you taking? I started on 1/4 mg(0.25mg) 2 times a day and was suppose to increase to 1/2 mg 2 times a day. I didn't even try the 1/2mg for weeks and then at bedtime. I still woke up feeling my way to the kitchen and my eyes wouldn't open until I took the 1/4 mg. Last week I tried a 1/2 mg in morning and didn't like the feeling. What has been working fairly well is 1/4 mg when I get up, another at lunch and another at dinner to keep my eyes open until bedtime. Sometimes it works better than others. I don't take any at bedtime. I'm going to get Botox at the end of March. And try to work on something for the FMS which is worse without 10 to 20mg of Elavil.One of the symptoms of FMS is the lumps, knots, stringy tight muscles in neck and shoulders. Does anyone else have that? A lady from California called thanking me for the article in the newsletter and says she has had BEB for 8 years, but has been almost symptom free for 2 years without Botox or medications with deep massage to keep the muscles in her neck and shoulders free of lumps and tightness. I told her I got massage about every 3 weeks. She said she had to go once a week until the lumps were gone, then every month to keep them out. I have had massage on a weekly basis for a short period but the lumps were never completely gone. She said I had to go as often as necessary until the lumps were completely gone. Mine have been there for about 9 years. Maybe I'll give it a try. I love massage, but I'd have to get just the neck and shoulders done if I went often because it is not covered by insurance. I love massage and it does help my FMS and state of mind, but it has not been the cure for FMS. Joanne I am so glad you are feeling more like yourself.

Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Klonopine/Lumps in your neck/shoulders???

Re : Re: Klonopine/Lumps in your neck/shoulders??? --- Delaine Inman
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 11,2001,12:27 Top of Thread Archive
Delaine, I took .50 mg tablets in the morning, afternoon, and 2 at bedtime. It was supposed to help me sleep, but didn't. This looks like I was prescribed twice what you were taking, and then some. No wonder I was so out of it. I have to say, it also didn't seem to do much for the BEB either. Since being off of it, I don't see any change in my BEB.

Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile