Questions about Meige Syndrome


Posted by Margo Morris , May 31,2001,11:47   Archive
I have enjoyed reading info from all of you on this BB about Blepharospasm and Meige Syndrome. Shirley asked if anyone new had any questions. I have sooooo many. I was diagnosed with Spasmodic Torticollis in Dec. 2000 and have had two sets of Botox A injections in my neck. (I had problems with my face twitching for about a year before that.) I'm due for more injections in June and I may need injections in my face. The movement disorder doctor who did the injections said I may have Meige Syndrome and he might do injections in my face in June. I live in Lancaster, California and go to the Movement Disorder Clinic at LAC/USC County Hospital. My mouth opens on a regular basis and my cheeks and face twitch and crunch. I have trouble with dry, itchy eyes and I think they close sometimes but I'm not sure. I'd like to know if anyone thinks I should have Botox A injections in my face or maybe wait a while. I was prescribed Clonazepam (Klonopin) by my neuro last Dec. before getting the Botox A injections. I stopped taking it because the Botox worked so well. But now I have a lot of anxiety and my facial spasms really bother me so I started taking it again (1/2 of a 1 mg tablet) twice a day. I've read a lot about Klonopin and it kind of scares me to use it. Any thoughts about the dangers or positive aspects of using Klonopin? I'm very new at all this, but I want to learn more. I'm looking forward to learning more from all of you and chatting with you on this bulletin board. Thanks for any input you have.



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Meige

Re : Questions about Meige Syndrome --- Margo Morris
Posted by Moderator-JB , May 31,2001,12:14 Top of Thread Archive
Margo:

Welcome!

Asking questions is the first step to knowledge and empowering yourself.

Dystonia is a sneaky little devil. It often creeps into other parts of our bodies and wrecks havoc. Do you have or can you borrow a video camera. When your spasms are doing their thing have someone take some footage of your face (or you can set it up to take of yourself which sometimes works better). You may need to try a few times to get what you want. Take the video into your doctor and he can see exactly what is going on.

Klonopin is an often used Rx. Many of us take it or something similar (myself included). What worries you about it?

Judy
blkmn36@earthlink.net




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Re: Meige

Re : Meige --- Moderator-JB
Posted by Margo Morris , May 31,2001,13:56 Top of Thread Archive
Judy,
Thanks for the suggestion about taking video pictures of myself. I think I'll try that. When I took 1 MG of Klonopin 3 times a day I ran into walls and slept all the time. Also, I read from someone on the BB that she took it for six years and then starting having major problems - I can't remember what they were though. If I take a small dose only, maybe that will be enough to help. Thanks for answering me.



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Re: Meige

Re : Re: Meige --- Margo Morris
Posted by Moderator-JB , Jun 01,2001,01:09 Top of Thread Archive
Margo:

Meant to write to you personally today but got tied up with our rescue pups. (We rescue Rottweilers)

Perhaps we can relate. I also have ST (Torticollis) along with the Blepharospasm and Meige.

Give me a jingle -

Judy
blkmn36@earthlink.net
Washington State




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Re: Meige

Re : Re: Meige --- Moderator-JB
Posted by Margo Morris , Jun 01,2001,07:35 Top of Thread Archive
Hi Judy,
I have to work today and am going out of town tomorrow til Tues. I'll write back to you then. It's good to hear someone else has ST. Not that I'm glad you have it - but you know what I mean. Gotta go - talk to you later.



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Re: Meige

Re : Re: Meige --- Margo Morris
Posted by kathy , Jun 01,2001,08:28 Top of Thread Archive
i took klonopin for awhile and stopped taking it after about 2 years, i think ,because it eventually stopped working. i don't remember any such side effects as you are mentioning, at least not so severe. Perhaps you need to lower your dosage gradually by half a pill at a time until it's better for you. check with your doctor , of course.



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Re: Questions about Meige Syndrome

Re : Questions about Meige Syndrome --- Margo Morris
Posted by Shirley-Arkansas-USA , May 31,2001,13:03 Top of Thread Archive
Hi Margo,
Welcome to our bulletin board. I'm glad you decided to join us and ask some questions. Not only will it help you but it will also help others. I have to be kept busy or I start stirring up trouble (I call it fun).
I take Klonopin. It is probably one of the most prescribed drugs that is used for helping with the spasms of BEB or Meige or other dystonias. I took .5mg twice a day for about a year. I recently increased it for a couple of weeks to 1 mg twice a day to help with spasms in my lower lids until I could get botox again. I had to wait for some swelling to go down around my eyes from my recent surgery. The swelling would have caused the botox to seep into unwanted areas. The botox has kicked in now and I'm back to my .5mg once or twice a day of the Klonopin. I had no difficulty adjusting the dosage. It is a low dose anyway and I just did it over a few days time.
I do think that the Klonopin causes me some minimal short term memory problems but it could also just be me. At the dosage that I take, it is not a problem for me.
Klonopin has a very low incidence of abuse. Most people that take it are taking it for a specific medical reason. Most people can be helped with a low dosage of it with minimal side effects. Some people have had more difficulty when they were on higher doses of it. It can cause major memory and confusion problems at high doses. It is also not a drug that should be stopped suddenly.
It does help with my spasms of my eyes and face.
If your botox is working and you don't need it then decrease it slowly and stop taking it. Ask your doctor about this, though. You might need to continue it if it helps with your anxiety.

Judy's suggestion was good to have someone tape you when your face is going through its contortions. This will help the doctor out tremendously. You and your doctor should be the one's to decide about getting the injections in your face. He can tell you the pros and cons.

You might try using Lacrilube or Moisture Eyes PM eye ointment at night for your dry eyes and some preservative free eye drops during the day. You might be having some allergy problems if your eyes are itchy. You could ask your doctor about that and what to do if that is a problem.

If you have not done so, go to the BEBRF Main Pages at the top of this page and click on it and read anything there that is of interest to you.

Again, welcome to the bb and ask whatever you like.

Shirley in AR.




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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- Shirley-Arkansas-USA
Posted by Margo Morris , May 31,2001,14:11 Top of Thread Archive
Shirley,
Thanks for your help and answers. I read about your recent surgery. It sounds like you went through quite an ordeal. Hope all is well now. I will video tape myself when my face is doing its thing to show the doctor. I feel better about taking the Klonopin now. Thanks for the info about the eye drops - if they get worse I'll try that.
Do you know if anxiety and stress are quite common with Meige Syndrome or Dystonia in general. I have trouble breathing sometimes when I have a lot of anxiety - and I seem to hyperventilate. I used to have panic or anxiety attacks quite often before I was diagnosed with Spasmodic Torticollis. Now I realize I have to lay down and rest when I am too tired.
Do you have any recommendations for medication to help with the anxiety or does the Klonopin do the trick?
Wishing you the best from sunny California.





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Re:Anxiety and Stress

Re : Re: Questions about Meige Syndrome --- Margo Morris
Posted by Shirley-Arkansas-USA , May 31,2001,15:11 Top of Thread Archive
Margo, Anxiety and stress seem to go hand in hand with any and all of the dystonias. One often wonders if the stress makes the dystonia worse or if the dystonia is making the stress worse. I think that it probably works both ways.
Klonopin is used to reduce the anxiety level and to relax the muscles.
Mindy would tell you that you have to listen to your body and do what it needs. I think that you are doing the right thing when you recognize what is going on and you step back and take a needed break. I think that I can speak for a lot or most of us when I say that we have learned to rest through the day. Take little short naps and do things that you enjoy.
If the Klonopin doesn't help enough, you need to talk to your doctor about the dosage or trying something else. Some people get relief from their breathing difficulties with the over-the-counter drug, Benadryl depending on what is causing it. It can make you very sleepy though if you are not used to it. And you would need to check with your doctor about trying it if you choose to. Always check with your doctor about things that anyone suggests taking or trying. We're not doctors and don't know about other possible medical conditions that people might have or what other drugs you might be taking.
We do tell about things, here on the bb, that we try and may have helped us or not but use your own good common sense about things. What works for one may not work for another. And always be safe and ok it with your doc.

Shirley in AR.




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Re: Questions about Meige Syndrome

Re : Questions about Meige Syndrome --- Margo Morris
Posted by Sally - in - Idaho , May 31,2001,15:32 Top of Thread Archive
Hi Margo ...

Welcome to the BEB Bulletin Board. You are getting some good answers from these people. I just want to add my little bit about the "itchy eyes:" I have allergies and have had good luck keeping the itchiness and infections down by using cotton balls and Johnson's baby shampoo with warm water to scrub the eyelids twice a day. There are packaged eye scrubs also, but I actually prefer the shampoo and it's cheaper.

Ask your questions and offer suggestions at any time. There is always someone around to answer you or guide you to a possible solution.

Sally in North Idaho




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Re: Questions about Meige Syndrome

Re : Questions about Meige Syndrome --- Margo Morris
Posted by Joanne Matuzas , May 31,2001,15:41 Top of Thread Archive
Hi Margo and welcome to the BB. I live in San Diego, CA. and have
blepharospasm, meige, and diaphragmatic dystonia. I have been looking
for a movement disorder clinic in Calif. The one you go to at LAC/
USC county hospital--does it stand for Los Angeles County,/University
Southern Calif. Please confirm name and address and phone # together
with the name of your movement specialist. Is he a neurologist?
Thanks for your response. Joanne M. San Diego, CA



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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- Joanne Matuzas
Posted by Margo Morris , May 31,2001,18:21 Top of Thread Archive
Hi Joanne,
Yes, LAC/USC stands for Los Angeles County/University of Southern California. When I first went there to the Emergency Room I saw Dr. Scott Selco who is in the Dept. of Neurology. His address is 1200 N. State Street, Room 5P81, L.A., CA 90033. Phone # is (323) 226-7381. You have to leave a message. He isn't there all the time. He referred me to the Movement Disorder Clinic there and I saw Dr. Alan Wu. He works with Dr. Mark Lew. I believe they are both neurologists. They are only there once a month and the address is the same except they are in room 5641 of the General Hospital. The phone # is (323) 226-7381.

Drs. Lew and Wu have their own private practice called USC Neurosurgeons, Inc., 1510 San Pablo Street, Suite 268, Los Angeles, CA 90033. Their phone # is (323) 442-5728. You might want to contact them at this address and phone number.




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Re: Questions about Meige Syndrome

Re : Questions about Meige Syndrome --- Margo Morris
Posted by Kelly Saffell , May 31,2001,19:23 Top of Thread Archive
Hi Margo and welcome to the bb. You have come to the right place for answers. I have beb and meige. I receive botox in my eyes and jaw. My jaw clenches shut at night and I wake up miserable with headaches and alot of neck pain from the tight muscles. I also take klonopin. I take .5mg every evening to help put me into a deeper sleep so that I don't clench as hard. I occassionally take 1/4 tablet during the day if I am having an exceptionally bad afternoon but even that can make me drowsy and my kids are 6 and 3 so napping is out of the question. It does help me but in the beginning I was very clumsy-I spilled and dropped everything. After a few months those side effects went away. Hope this helps.

Kelly in Dallas




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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- Kelly Saffell
Posted by Shelley Chambers , May 31,2001,21:48 Top of Thread Archive
Dear Margo: I have BEB and meige. I live in Bakersfield and commute to Oxnard, CA for Botox, and I also take Parsitan and Prozac. I see an accupunturist as well. I see a neurologist, Dr. James Sutton, at the California Medical Center for Movement Disorders (actually a Parkinson's Clinic). He is also the director of the California Neuroscience Institute which does research on movement disorders, Parkinson's, etc. I was on Valium and Artane for awhile, but since I teach 1st grade, they had to go! Too sleepy, also running into things! Like 6 year olds!

On Saturday, there is a symposium on movement disorders at St. John's in Oxnard (it houses the above groups). I can send more information if you think you would like to come. We have also started a support group (I am a co-chair) and we will try to get organized that day. I don't know how "on" I will be - school isn't over until the Friday before! I am new at this - but let me know if I can help.
Shelley




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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- Shelley Chambers
Posted by Margo Morris , Jun 01,2001,07:26 Top of Thread Archive
Dear Shelly,
It's nice to know you are so close - here in California. I am also going to the Symposium in Oxnard on Sat., June 9 also. I just joined a support group called Dystonia Medical Research Foundation and the group meets in the San Fernando Valley. I noticed there is one in Santa Barbara, South Coast or San Fernando Valley. Don't know which one is closest to you but if you want more info let me know. The leader of my support group goes to Dr. James Sutton also. She will be one of the speakers at the Symposium in Oxnard - Faye Goldstein. I am also interested in the support group you are starting up. Hopefully I'll see you Sat. and we can meet. Thanks.



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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- Margo Morris
Posted by Shelley Chambers , Jun 02,2001,20:06 Top of Thread Archive
Margo - I've already forgotten where you live! I met Faye at our initial meeting a few weeks ago. I go to Oxnard just because I prefer to drive to the beach instead of the SMOG!! I will definitely see you next Sat. I am going over on Friday, actually, and spending 2 nights. I just want some time on my own and my husband is taking my son camping. Are you coming just on Saturday?
Shelley



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Re: Questions about Meige Syndrome

Re : Questions about Meige Syndrome --- Margo Morris
Posted by Delaine Inman , May 31,2001,23:15 Top of Thread Archive
Margo I've had BEB for over 2 years and had tried a long list of medications, Botox, surgery, herbs, brews and still was having a lot of difficulty. I started on Klonopin at 1/4 mg 2 times a day and was to increase it to 1/2mg 2 times a day gradually. Well 1/2mg made me feel fuzzy, off balance and weird. The 1/4mg helped tremendously but wore off in 4 to 5 hours. Now I just take 1/4mg 4 times spread out during the day and it really has helped more than anything else. My last Botox which was given by a different neurologist at 65units but fewer injections seemed to help more than the other 5 sets of Botox I'd had. But the Klonopin has made the most noticeable difference in the way I function. As long as I stick to the lower dose I don't have side effects.

Delaine in Tennessee, USA




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Re: Questions about Meige Syndrome

Re : Questions about Meige Syndrome --- Margo Morris
Posted by June in Toronto (June Floyd,June in Toronto), Jun 01,2001,07:34 Top of Thread Archive
Hi Margo, welcome to the bb but sorry to hear you suffer so much. I have beb/meige and I get botox injections (90 units) every 4-5 months - it works well but causes side effects for more than a month before it all settles down. I don't get injections in my face (yet) as I find when the botox finally works, the meige eases up. Anxiety is bad for any disease and, like you, I seem to have a lot of it right now. We need to be good to ourselves during extra-difficult times if possible I guess.
Take care and again, welcome to the bb.

June in Toronto where tomorrow is the Dystonia - Toronto Support Group Walk-a-Thon. I'm in charge of food - set up 8 am sharp!




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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- June in Toronto
Posted by kathy , Jun 01,2001,08:34 Top of Thread Archive
june. i have the worst time after my injections with my eyes settling down also. i am now past the 6 week period of last time and riding it out with the help of the Celebrex til my appointment next week. After about 3 weeks of the hell you described , my eyes during this final period are pretty good, even tho it's very rainy. of course as soon as i say this.....



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Re: Questions about Meige Syndrome

Re : Re: Questions about Meige Syndrome --- June in Toronto
Posted by kathy , Jun 01,2001,09:40 Top of Thread Archive
June, whenever i start to feel anxious or nervous i take a B complex vitamin and it works overnight to relieve this pretty much. i mean the difference is really noticeable. anyone with our maladies cannot help but feel anxious.



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Re: B Vitamins

Re : Re: Questions about Meige Syndrome --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Jun 01,2001,17:13 Top of Thread Archive
Kathy, I take B12, B6 and complex B for stress (along with other vitamins) - have for years - didn't help me this time around as far as I can tell. But I keep taking them anyway. One of the things I've missed is my exercise (floor and aquafit) classes - I just haven't been able to go to them for months on a regular basis. I know they help my serotonin (I think that it) in the brain, which helps with anxiety. I'm getting back to my routine asap -Ireally would like to enjoy some of the summer.

Take care. June in Toronto




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Re: B Vitamins

Re : Re: B Vitamins --- June in Toronto
Posted by kathy , Jun 02,2001,07:27 Top of Thread Archive
i'll bet the change in your exercise routine is the culprit then. i have to force myself to do exercise as well as make sure my eyes are functioning, but it really makes me feel better and does of course relieve stress as well.



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