Posted by: Moderator-JB ®
02/17/2003, 12:38:12
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Rita,Though Klonopin may have affected you in this way, we are each different. I experience what looks somewhat like a Grand Mal at times but it's just the big 'D' doing it's thing. Klonopin calms it quite successfully for me. We are all individuals and each medication may or may not help us. You say that everyone in your group have experienced problems with Klonopin? How many people are we talking about? Nice to hear from you, Judy
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Posted by: Rita Silver ®
02/17/2003, 17:38:42
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I am a rep for seven years. I usually have about 30 in my support group. almost all have blepharospasm,and with meige and a couple with hemi- facial spasms. at least 12 if not more have been given klonopin and could not function on it. At present only one member is on it. I am glad that I am doing so much better but and I have no way to account for what was happening to me. I can't believe that I just got better after all my movement problems. The medicine is mostly used for seizures and there is a warning that it can also cause seizures. I know that all drugs have disclaimers to protect themselves. Perhaps that disclaimer was meant for me and some of the others I know. Most of my group take
zoloft or atavan to stay strss free. I have never taken either of these drugs. I had no wish to scare anyone only for those on klonopin to notice if they developed meige after being on this drug. I was put on this drug by the Doctor I used for Botox at Bascom Palmer in Miami. That was almost 71/2 years ago when I only had blepharospasm,no meige or movement disorder.
--modified by Rita Silver at Mon, Feb 17, 2003, 17:46:00
Modified by at Mon, Feb 17, 2003, 17:46:00
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Posted by: Alan Phair ®
02/17/2003, 18:13:21
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Rita, for me the Klonopin is a life saver. I had the Meige before I started taking it and I certainly can tell when the medicine wears off as the Meige is awful. The Klonopin settles it down after about an hour or so...Alan Where it is snowing as usual with predictions of up to 30 inches now. This is crazy.
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Posted by: MaryNY ®
02/17/2003, 13:58:32
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Rita - That's a little scary. I've been taking .5 mg. of Klonopin (clonazapam-generic)3X day for about 8 yrs., but I have never had the experience that you describe. I feel, instead, that it is a great help, mostly because it decreases "stress". Mary
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Posted by: Delaine Inman ®
02/17/2003, 18:51:40
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How much Klonopin were you on? I'm like Alan and Judy; it has been a life changing medication for me. I can only tolerate 1/4mg at one time or I feel some side effects, but I can tell when it wears off......big time...my eyes slam shut. Many people with seizures take large doses of Klonopin for years and it prevents their seizures. I agree the what works for one is poison or doesn't work well for others. I took Elavil for years for Fibromyalgia and I began to have tremors and then developed BEB. Others who have BEB take Elavil and it helps their BEB. We can't make generalizations about anything concerning BEB/Meige or any form of dystonia when it comes to medications. Many medications have the potential to help or to have adverse reactions. I have heard many neurologists say that Klonopin can be very helpful when Botox is not helping at all or not enough. Sorry you had such a horrible experience with it.
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Posted by: Sherrie Feltz ®
02/19/2003, 15:07:16
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Glad to hear that you're getting along better. I have never been on Klonapin. I was on Zoloft and then Effexor, now I am on 30mg. of Paxil once a day to help keep the stress level down. I also have Alprazolam .25mg. to use for those extra rough times. The past few days tho nothing seems to help. I seem to be shaking from the inside out. The Botox which never helped open my eyes,only calming the spasms is wearing off in preparation for the myectomy. I don't know of any support groups in my area. It sure would be helpful. Thoughts and prayers to you for continued GOOD days.
Sherrie in Polk City,FL where it's 73 degrees today....sorry....
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Posted by: Delaine Inman ®
02/19/2003, 18:31:36
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Can I come to your house until Spring???? I can't tell the Klonopin helps anything except keeping my eyes open. Emotionally I'm the same with or without it. I started the 1 mg of Artane Monday and so far so good. No side effects and my eyes are doing pretty good.
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Posted by: Rita Silver ®
02/19/2003, 21:12:09
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Hi Sherri, It was close to 80 degrees in Delray, Fl today. I am not familiar with some of the drugs you tried. Most in my support group are on Zoloft or Atavan. All the years I was on klonopin I often questioned
the doctors as I never thought it did much good and never realized until
I had such a scary seizure that all the worsening of my dystonia and strange movements were caused by medication. Since I am so much better with only the original blepharospasm that I started with The only thing that I did was get off medication. I am still waiting (as it is only 8 months since I am better) to see if it is really true. Less than two years ago I was taken at night to Northwestern Hospital by ambulance in Chicago as I got what I thought was a dystonia spasm. I could neither move my legs or arms. I got better in about 8 hours. 4years ago also I colapsed in
Florida walking to a restaurant. I was taken to Boca Community Hospital where they thought I had a TIA. I was there for 4 days with all kinds
MRI , brain scans and as usual they never found what caused my becoming immobile. You may find the Myectomy very helpful as I did and it helped
thr Botox to work where it didn't before. Also, how far is Polk City from where I am. Maybe once you feel better , you may be help start a group in your vicinity. Keep in touch and lots of good luck. Rita Silver
--modified by Rita Silver at Wed, Feb 19, 2003, 21:12:55
Modified by at Wed, Feb 19, 2003, 21:12:55
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Posted by: Sherrie Feltz ®
02/21/2003, 21:43:10
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My house is always open, especially to those looking for warmth, a bit of commotion and friendship.
Rita, Polk City is about 30 miles north-east of Lakeland. I've been down your way...we go down to the Keys every Aug. I guess it's about 2 hours from my place to yours. You mentioned a possible TIA, about 4 or so years ago I made a trip to the hospital for 4 days. They thought I had a TIA also. I too had no mobility in my legs and my left arm and hand spasmed and went numb. I've been trying to put everything together,to figure out (like everyone else) when,what or how all of this started. I read something the other day about TMJ being misdiagnosed. I was diagnosed with TMJ and had surgery for it about 11 years ago. I'm having the symptoms again (clenching of the teeth,pain in the jaw).....has it returned or is it a form of this darned dystonia thing?? Sorry for rambling on. Hopefully when I'm driving again Rita, I can come visit your group and you could help me get something started in my area. I was told that Dr. Patrinely is working with some people in Jacksonville to start a group there...that's 3 1/2 hrs from me.
Thank you all for your support.
Sherrie in Polk City,FL 83 degrees today
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