Newly Diagnosed with Meige and BEB


Posted by Margo Morris , Jun 26,2001,07:33   Archive
When I went to get my Botox injections for Cervical Dystonia about 2 weeks ago, the doctor said I didn't need the Botox because my neck looked so good. But he did say I have Meige Syndrome and gave me 20 or 22 injections all over my face. I was almost positive I have Meige but it's good to get a diagnosis and start the treatments. He gave me 85 units but I don't think it was enough. I still have a lot of spasms - mostly around my mouth and jaw. I have been trying to slowly reduce the amount of Klonopin I take but yesterday I decided I needed to take .5 MG in the morning and .25 MG in the afternoon for now. I may need more later. I'm concerned that my neck might start turning and spasming before mid-September. The doctor said we would have to treat it with more Klonopin if that happens cause he can't give me any more Botox till then. I am feeling better now but the Botox sure didn't help after 3 - 4 days like he said it would. I started using Refresh Plus in my eyes and that has helped my dry, itchy eyes.
Thanks to all of you for your encouraging words and information that you give through this BB. I'll try to participate more but with 3 kids still at home and working part-time now (I used to work full time), it's kind of hard. And my husband is always on the internet - so it's hard to get on.
Margo in sunny California (we're lucky it cools down in the evenings).



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Re: Newly Diagnosed with Meige and BEB

Re : Newly Diagnosed with Meige and BEB --- Margo Morris
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Jun 26,2001,15:02 Top of Thread Archive
Hi Marge, welcome to the BB. You sound awfully young and I am sorry that you have to face all these problems as you raise your faimily.
I am old (young at heart) and my family is grown and have their own families. I have Blepharospasm and Meige so I can sympathize with you. Plese post again and tell us more about yourself and how you developed this "wonderful" disease that we all cope with in one way or another. You are WELCOME here anytimne.

Joyce in NC - hot and sunny with thunderstorms predicted for later today. The trouble is, some people get the rain and some do not.




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Re: Newly Diagnosed with Meige and BEB

Re : Newly Diagnosed with Meige and BEB --- Margo Morris
Posted by Kelly Saffell , Jun 26,2001,17:36 Top of Thread Archive
I'm sorry about your diagnosis but glad you have found the bulletin board. I have beb/meige and was diagnosed in early 1996. I receive botox in my eye and jaw muscles regularly. I spasm in my throat and chewing makes things worse. How old are your kids? Mine are 6 and 3 (both girls) so I understand about the time constraints. I quit working completely about 1 1/2 years ago (CPA) because it just got to be too much for me to handle. Let us know more about yourself and keep us posted on your progress.

Kelly in Dallas (already hot!)




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Re: Newly Diagnosed with Meige and BEB

Re : Re: Newly Diagnosed with Meige and BEB --- Kelly Saffell
Posted by Margo Morris , Jun 27,2001,09:19 Top of Thread Archive
Dear Joyce and Kelly,
Just a little about myself - I'm not as young as I sound - 47. My oldest son is 22 and married. My other 3 boys are 21, 16 and 14. I started having problems with my eyes and face in Oct. 99 and had a lot of tests done and the doctor said I had anxiety and then panic disorder. I ended up in the emergency room in Nov. 2000 and a neurologist said I had a movement disorder which turned out to be spasmodic torticollis (cervical dystonia) and he sent me to a movement disorders clinic where I was given Botox A almost immediately. I've had 2 sets of shots in my neck and this last time in my face for Meige. Kelly, I also have a lot of spasms in the front of my throat now and my mouth wants to open all the time. I make strange faces trying to keep my mouth shut. I also have tightening of my teeth and jaw. It was interesting reading the info about Klonopin. I think I'll keep taking .5 MG in the morning and .25 in the afternoon for now. That seems to be working for me.
Thanks again, Margo



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Re: Newly Diagnosed with Meige and BEB

Re : Newly Diagnosed with Meige and BEB --- Margo Morris
Posted by MaryNY (Mary,MaryNY), Jun 26,2001,20:53 Top of Thread Archive
Margo- I have read so many posts here about people trying to cut down on the klonopin (clonazapam, generic) and my question is WHY? So it's addictive. So what? Some people have to take medicines for the rest of their life, and especially if it makes life (and BEB) more tolerable, I will continue to do so. I take .5 mg three times a day, and have for probably eight years. I know that I started taking it for anxiety, before I was diagnosed with BEB, and I know one of the causes of my BEB is anxiety, so why not eliminate it? The anxiety, that is. I'm very much against any kind of drug abuse, and have never taken more than prescribed. I think sometimes about cutting back, but I won't...because I think it is really helping me, along with Botox every eight weeks. Luckily, it still seems to be helping me, with no counter-reaction and no sense of becoming immune to it. Don't worry-Be happy! Mary



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Re: clonazepam

Re : Re: Newly Diagnosed with Meige and BEB --- MaryNY
Posted by Virginia , Jun 26,2001,22:02 Top of Thread Archive
Mary,
I'm one of those trying to cut back on the clonazepam. Yes, it helps - both the anxiety and the Meige. But it makes me sluggish late in the day and I would like to see if cutting back will help. Medication affects us all differently, so you may not have that problem. I was taking .5 mg twice a day and I have cut back one of those doses to .25 mg for now. It seems to be working out. I'm going to stay here for a while before cutting back the other dose. If it doesn't work out, I'll go back to where I was - I'm going to take it because it is helping me unless I find something that will work better.

Virginia in AL




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Re: Newly Diagnosed with Meige and BEB

Re : Re: Newly Diagnosed with Meige and BEB --- MaryNY
Posted by Joann Humphrey , Jun 26,2001,23:14 Top of Thread Archive
My Dr. recommends clonasapam twice a day. He said I could experiment with it. He has one patient who takes 2 pills 5 times a day. So if I feel I need 3 a day I do it, It does may me awfully relaxed however, when I'd like to be working or doing something productive. Reading about others on the BB has been a wonderful help, realizing I'm not alone with my problem.



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Re: cutting back on meds

Re : Re: Newly Diagnosed with Meige and BEB --- MaryNY
Posted by Mindy , Jun 27,2001,22:03 Top of Thread Archive

I may have mentioned recently that I have been able to cut back on my meds. and my eyes and face are still doing well.
I hope I didn't give anyone the wrong idea. I have been on Lorazapam(Ativan) for 8yrs. I don't think anyone should suffer with spasms
for the sake of being afraid of getting addicted. Your body will let you know if it is utilizing it correctly. I would know it's ok to cut back when I would sleep all day no matter where I was.
I used to drive my doctor crazy, always asking when can I stop
the meds? Until I finally came to the understanding it's the same if I had diabetes and needed medication everyday. No matter how many times he would tell me, it wasn't what I wanted to hear. Once I came to the BB and learned that I am not the only one with this, and I'm not the only one that needs medication, I was able to relax in knowing what is more important. I was not getting addicted, I was getting better.
It's OK
Mindy in NY




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Re: cutting back on meds

Re : Re: cutting back on meds --- Mindy
Posted by Joanne Matuzas , Jun 28,2001,10:37 Top of Thread Archive
I've been unable to post this message. Mindy, you have probably told us before, but what daily dosage of Ativan do you take? Glad you are
doing well. Thx. Joanne M. San Diego, CA



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