Blepharospasm with Meige


Posted by Gloria Baxter , Feb 04,2002,20:39   Archive
Hi, There:
Is there anyone out there who can share what is working for them? My husband, Ted, contracted Blepharospams w/Meige approximately 3 years ago. He has been blessed, in that BOTOX injections in the muscles around the eyes have enabled him to see again, to be able to drive. What a blessing! However, our neurologist has not been able to put together any combination of medication to alleviate, or lessen, the spasms around Ted's mouth, under the chin, and in the throat areas. For obvious reasons, he will not inject the BOTOX around the mouth or in the throat area. The spasms sometime interfere with Ted's swallowing. Can you help? Any advice will be appreciated!



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Re: Blepharospasm with Meige

Re : Blepharospasm with Meige --- Gloria Baxter
Posted by kathy , Feb 05,2002,06:32 Top of Thread Archive
maybe to chew slowly and always have a glass of water with your meal, so things don't get stuck in the throat.



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Re: Blepharospasm with Meige/gloria

Re : Blepharospasm with Meige --- Gloria Baxter
Posted by kathy , Feb 05,2002,09:11 Top of Thread Archive
as further thoughts on the throat spasms, gloria, does he have these pretty frequently? some of us ,or at least i do, get throat spasms as the botox starts to take effect, as part of the side effects. this is so far for me , i hope , only a temporary side effect that lessens once the botox as fully taken effect. would someone else please respond here.



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Re: Blepharospasm with Meige

Re : Blepharospasm with Meige --- Gloria Baxter
Posted by Kelly Saffell , Feb 05,2002,10:40 Top of Thread Archive
My problems with the meige seem to vary. I always clench my jaw so I receive botox injections into the massitor muscles regularly and sleep with a night guard that I had made thru a TMJ specialist. I also take small doses of klonopin. During the summer the spasm in my throat worsened, but it was only temporary. When drinking, try to tuck the chin in a little bit to swallow. When I try to lean forward to drink out of a water fountain or my glass I choke more easily. During the summer when my spasms were worse I was having trouble swallowing food. I lost 3 lbs (which is alot when you only weigh 98 to start). I began taking 1/4 klonopin every 4 hours (making sure I took it 30 min before a meal). I also noticed that my nose would twitch and then my throat would spasm. I told my doctor about this and he told me there is a nerve connecting the two. He now injects on each side of the upper bridge of my nose and this has helped to control the throat spasms. I used to dry heave the spasms would be so strong and that hasn't happened since he began injecting beside my nose. I hope some of this helps.

Kelly in Dallas




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Re: Blepharospasm with Meige

Re : Re: Blepharospasm with Meige --- Kelly Saffell
Posted by Virginia , Feb 05,2002,10:50 Top of Thread Archive
I started using a straw to drink through most of the time and it really helps. Not sure why, but it works for me. Now that I think about it, I would be tucking my chin in some to use the straw - maybe there's a connection there. I also lost weight when I had the most trouble chewing and swallowing. I weigh more than you, but it was still noticeable. I now use a night guard and it seems to help - also to keep from cracking teeth and fillings.

Virginia in AL - did I just hear that y'all are getting snow there?

--modified by Virginia at Tue, Feb 05, 2002, 10:54:41




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Re: Blepharospasm with Meige

Re : Re: Blepharospasm with Meige --- Virginia
Posted by Ann Doyle , Feb 05,2002,12:48 Top of Thread Archive
The first time I noticed trouble around my mouth and told my Dr., I just thought he'd give me shots there and everything would be fine. He explained about the swallowing bit. He did give me shot on each side of my nose, half way down. I had been making awful faces with my mouth--snarling, etc. It stopped all the exra movement aroung my mouth but there was a trade off. My upper lip was paralyzed as long as the botox worked--about 8 weeks. I couldn't bite anything like a sandwich or put on lipstick without difficulty but I could eat anything with a spoon. Decided it wasn't worth it. Ann Doyle
Felt like I just got back from the dentist.



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Re: Blepharospasm with Meige-snow

Re : Re: Blepharospasm with Meige --- Virginia
Posted by Kelly Saffell , Feb 05,2002,13:24 Top of Thread Archive
Yes, we are getting snow. It has been coming down heavy since 8 this morning. I just picked Cory up from prescool (3 1/2) and she is dying to get outside to play so...here I go. The cold wet coming down blinds me horribly but it's worth it to see her joy. We don't get too much of it here in Texas!

Kelly in Dallas




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Re: Blepharospasm with Meige

Re : Blepharospasm with Meige --- Gloria Baxter
Posted by Virginia , Feb 05,2002,10:43 Top of Thread Archive
Gloria, I can sympathize with your husband. I have had BEB/Meige about the same length of time and botox does help. The last three times that I was given botox around my eyes, I also got them in my jawline and neck. Without the botox I have trouble chewing and swallowing. I wouldn't get injections around my mouth, either, but have had no problems with injections in my neck and chin. I've had them given in two different patterns - vertically in several rows down the center of my neck and horizontally in several rows from ear to ear across my neck. The Dr. lets me tell him how I want it done. I end up getting a ton of shots this way, but it's pretty quick and any discomfort is short-lived. Yesterday I got a total of 100 units of botox with 60 around my eyes, 20 in my jawline and 20 in my neck. My Dr. usually freaks about giving so much, but did it anyway. He jokes that when I leave his office I am a genuine "redneck."

I guess he has tried Klonopin (generic, clonazepam). That works for many of us to lessen the spasms.

Tell him we understand and for him not to give up. And that he is fortunate to have a sympathetic wife - that kind of support means a lot. Keep us posted about his condition.

Virginia in AL




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Re: Blepharospasm with Meige

Re : Re: Blepharospasm with Meige --- Virginia
Posted by kathy , Feb 06,2002,04:40 Top of Thread Archive
my gosh virginia, that Is a lot of shots. whatever is going on with me is neck spasms along with the eye spasms and tension in my shoulders. Also my eyes close sometimes when i chew; i noticed this last time. it only happens early in the day. i guess i shouldn't worry about it.



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Re: Blepharospasm with Meige

Re : Re: Blepharospasm with Meige --- kathy
Posted by Kelly Saffell , Feb 06,2002,07:39 Top of Thread Archive
My eyes close whenever I chew too, only mine gets worse as the day goes on. Go figure!
Kelly



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Re: Eyes Close When Eating

Re : Re: Blepharospasm with Meige --- kathy
Posted by Shirley-Arkansas-USA , Feb 06,2002,10:01 Top of Thread Archive
Probably for the first year of BEB, eating was one of those sensory tricks that I could do to make my eyes open. Slowly it stopped working and is now one of those things that will automatically shut my eyes down. It's kind of weird how things change. It doesn't always happen but does about 3/4 of the time.

Shirley in Arkansas who got 3 inches of snow. I love it! I've already shoveled a little area outside so that my Yorkie doesn't get lost. :-)




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Eyes closing when chewing

Re : Re: Blepharospasm with Meige --- kathy
Posted by Virginia , Feb 06,2002,15:39 Top of Thread Archive
My eyes close much of the time when I chew, too. If you don't mind being hungry, BEB is a good way to lose weight. Chewing is difficult, uncomfortable, and makes my mouth do weird things. Definitely a disincentive to eating.

Virginia in AL, where we only got sleet and cold rain.




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Re: Eyes closing when chewing

Re : Eyes closing when chewing --- Virginia
Posted by Kelly Saffell , Feb 06,2002,16:54 Top of Thread Archive
When I was at my worst this summer with the spasms making it hard to chew and swallow I was drinking several ensure a day instead. After a couple of months it got better. My eyes still close when I chew most of the time but if I don't fight it then it decreases the problems with my mouth and chewing.

Kelly in Dallas - just finished making 2 snowmen with the girls. We got about 3 inches with no ice!




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Re: Eyes closing when chewing

Re : Re: Eyes closing when chewing --- Kelly Saffell
Posted by kathy , Feb 07,2002,03:33 Top of Thread Archive
well, it's good to know i'm not alone here, i guess. it juat happened for the first time last injection period. i think shirley may be right about it being a sensory trick. it sort of scared me. i usually chew gum when i walk to also keep them open; i can actually do both at the same time! often chewing the gum is easier.



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Re: Eyes closing when chewing

Re : Re: Eyes closing when chewing --- kathy
Posted by Shirley-Arkansas-USA , Feb 07,2002,09:17 Top of Thread Archive
BEB brings a whole new meaning to the phrase "able to walk and chew gum at the same time". I had to laugh about that one. :-)

Shirley




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Re: Eyes closing when chewing

Re : Re: Eyes closing when chewing --- Shirley-Arkansas-USA
Posted by Christel-California , Feb 07,2002,10:21 Top of Thread Archive
It also struck me as funny. :-)
Christel

--modified by Christel-California at Thu, Feb 07, 2002, 10:56:44




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Re: Blepharospasm with Meige

Re : Re: Blepharospasm with Meige --- kathy
Posted by M Chiasson , Feb 07,2002,15:13 Top of Thread Archive
I developed Blepharospasm in the spring of 1996. I did not get a correct diagnosis until July 31st after
my 8th doctor. I was told that Botox was the answer. It turned out that 4 different injections from three
different doctors of Botox did not do anything for my BEB. My neurologist then moved the treatments
to medications and none of them helped me with my BEB. In the meantime, Oramandibular Dystonia
(face, jaws,throat, vocal cords, and neck)started to appear and we found that Clonazepam (also
known as Rivotril or Klonopin) helped the Ora but not the eyes. The end result for my BEB was a
successful Myectomy operation in 1998 and I started to drive again in March of 2001. As for my Ora,it
seemed to get worse about 6 months after the operation (Doctor thought it might have gotten worse
even without the operation) and so another Neurologist recommended Kemadrin (Procyclinde). A
combination of those three have given me a new lease on life, however, I still cannot work because of
the side effects from the Kemadrin which include slight confusion and short term memory loss. For
someone else, that might not work but it is at least worth discussingwithyour neurologist.

Marcellin Chiasson, Port Hawkesbury, Nova Scotia,
902-625-1811




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Re: Blepharospasm with Meige

Re : Blepharospasm with Meige --- Gloria Baxter
Posted by M Chiasson , Feb 05,2002,18:34 Top of Thread Archive
Dear Gloria:

I developed Blepharospasm in the spring of 1996. I did not get a correct diagnosis until July 31st after my 8th doctor. I was told that Botox was the answer. It turned out that 4 different injections from three different doctors of Botox did not do anything for my BEB. My neurologist then moved the treatments to medications and none of them helped me with my BEB. In the meantime, Oramandibular Dystonia (face, jaws,throat, vocal cords, and neck)started to appear and we found that Clonazepam (also known as Rivotril or Klonopin) helped the Ora but not the eyes. The end result for my BEB was a successful Myectomy operation in 1998 and I started to drive again in March of 2001. As for my Ora,it seemed to get worse about 6 months after the operation (Doctor thought it might have gotten worse even without the operation) and so another Neurologist recommended Kemadrin (Procyclinde). A combination of those three have given me a new lease on life, however, I still cannot work because of the side effects from the Kemadrin which include slight confusion and short term memory loss. For someone else, that might not work but it is at least worth discussingwithyour neurologist.

Marcellin Chiasson, Port Hawkesbury, Nova Scotia,
902-625-1811




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