Question about Meige


Posted by Carol Brown , Nov 19,2001,17:48   Archive
I was just curious to know if anyone else has the same problem with meige as I do. It seems like there are times when I go to talk and it takes me a few minutes before I can get anything out. This seems to happen when I am quiet for a length of time. Other times, when I'm talking, the spasms start going in my face. I talked to my doc about this and he doesn't seem to know why this occurs. When he first started injecting me around the facial muscles, he was hitting my smile muscles. I ended up with a droopy face and constant frown. It was so awful, I just wanted to hide somewhere. Since then, I have told him not to hit my smile muscles. I do have a nice smile (it's the only thing I have going for me) so now everytime I go in for injections, he has me smile so he can tell exactly where these muscles are.

Carol in Naselle, WA (are still having some rain today)




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Re: Question about Meige

Re : Question about Meige --- Carol Brown
Posted by Lynn Yarbrough , Nov 20,2001,14:02 Top of Thread Archive
It sounds as though speaking is very stressful for you, although I have no idea why that might be. I just know that stress makes BEB/Meige worse, and of course not being able to function normally produces more stress, and around we go...

Did you have a tendency to stutter before the Meige showed up? Perhaps they are alike in some ways we don't yet understand.

It sounds like you have a good Dr. who is responsive to your need to at least LOOK happy. I wish mine could inject my frown muscles!

--- Lynn




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Speech stop ...

Re : Question about Meige --- Carol Brown
Posted by Moderator-JB , Nov 20,2001,14:08 Top of Thread Archive
Hi Carol,

My uneducated opinion is that it is not the Botox but the Oromandibular spasms that are causing the break in the flow of speech.

If I read something aloud, about 2 to 3 paragraphs and my enunciation degenerates, words become somewhat garbled, or I simply have to wait a few seconds before the word makes it way out. If I stop for a moment I can usually restart the word flow. It seems that my tongue simply gets in the way and I can't manipulate it as desired. Damn frustrating!!!

Judy




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Re: Speech stop ...

Re : Speech stop ... --- Moderator-JB
Posted by Rita Molnar , Nov 25,2001,00:06 Top of Thread Archive
I do stop in to read your notes from time to time, but I don't join you guys as often as I should. (I'm a caregiver for my 94 year old dad, and much of my time is used up on chasing him around all day)...So I hope I'm not repeating anything or otherwise wasting anyone's time.
I read the notes about this subject with a lot of interest, because I have meige and I experience something similar with speech. I feel as though my jaw and lips are sort of frozen, or tight, and I can't move my mouth to speak correctly. My words become garbled, and I have difficulty expressing myself. Also, chewing food is sometimes a problem for me.
These "mouth" symptoms were among the first things I experienced, way back when this all began. It was later on that the blepharospasm showed itself.
What I am really curious about, however, is the mention of stuttering, or breaks in the flow of speech. I had that problem since about the age of 6, and was finally able to do something about it when I was in my 20's to 30's. I devised a method of forcing myself to exhale slightly as I began to speak, and that's how I was able to get my first words out. I always wondered whether there was a correlation between stuttering and meige/blepharospasm. My doctor doesn't seem to have any opinion on that. Has anyone else had any early childhood stuttering experiences? Incidently, I did finally overcome the stuttering problem so well by the breathing method, and by word substitution, that I was eventually able to do public speaking quite effectively. I'm thankful for what the Botox does for me every 3 months, but I keep looking for a way to correct the meige/blepho problem by myself.. I guess there probably isn't any, huh?



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Re: Question about Meige

Re : Question about Meige --- Carol Brown
Posted by Dee in OR , Nov 20,2001,15:40 Top of Thread Archive
I have trouble talking but it is because I have trouble breathing. Sometimes when I go to start talking, nothing comes out at first and then it comes out but kind of breathy. Don't know if that helps but that's how it is for me. I think it goes with the oromandibular dystonia.

Dee in OR




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Re: Question about Meige

Re : Question about Meige --- Carol Brown
Posted by Carol Brown , Nov 20,2001,16:02 Top of Thread Archive
Thanks guys for the input. I think you are all probably right in what you say. I do think that stress does play a role. I know when I am speaking to someone and trying to make eye contact with them, it does become very stressful, then it makes the situation worse. The business about having trouble getting the first word out may be a breathing problem. I will discuss this with my doc. No, I never had a stuttering problem, so am sure this is all part of the meige syndrome.

Carol in Naselle where we are having another rain storm today. Noah, where is your ark??????




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Re: Question about Meige

Re : Re: Question about Meige --- Carol Brown
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 21,2001,09:32 Top of Thread Archive
Carol, I am not sure my speaking problem is meige or just self conscious because I have such a hard time explaining things. I have no trouble writing or explaining things when I write but when I talk it is like I can't get all the words out and it is like my brain doesn't want to co-operate with my mouth. When I have my under eye spasms I feel like my neck tightens up and the lower part of my face, mouth & nose is pulling up. I look like I am in pain (I am in pain most of the time from trying to open my eyes) I know this has been discussed in another post but I would like for a doctor to take me seriously when I tell them I am in pain. Thay all look at me like I am a neurotic (sp?)I have posted before that I will get my Botox this Monday the 26th. For the past two weeks my eyes have been in an almost total shutdown. I am back to the fight/battle/struggle to open my eyes and that causes my head to hurt. For the past two days I have had such a bad headache that I have had to take medication and go to bed. I called the doctor (family)and left a message about my headache and he never returned my call. That made me very unhappy. If you doctor doesn't want to help or care. I probably should have gone in and gotten a shot or something. At least he would have made some money out of the deal. I am getting frustrated with doctors. Sorry, I am just venting my anger.

Carol - you asked the question "Where is Noah's Ark?' He is at my house. I have a collection of Noah's ark all shapes and forms, clothes , vests etc.

Joyce in NC who is tired and cranky, and still have my headache. I am usually a very nice person and try to have a good attitude but I get down when my eyes shut down on me.




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Re: HOPE YOU FEEL BETTER SOON JOYCE

Re : Re: Question about Meige --- joyce whitt/NC
Posted by June in Toronto (June Floyd,June in Toronto), Nov 21,2001,15:44 Top of Thread Archive
So sorry you feel so bad, Joyce - do hope the injections on Nov. 26th will help you - I'll be routing for you. Hang in there.

June in Toronto (beb/meige)




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Re: HOPE YOU FEEL BETTER SOON JOYCE

Re : Re: HOPE YOU FEEL BETTER SOON JOYCE --- June in Toronto
Posted by Joyce Whitt/NC (Joyce Whitt,Joyce Whitt/NC), Nov 21,2001,17:50 Top of Thread Archive
Thank you June, you are such a caring person. I have noticed from your other post that you take time to encourage others. I try to be a postitive person, but this has been a bad week for me. I also think I am getting the holiday blues. Half of my family will not be here at Christmas and I guess that bothers me. Christmas for me is my family. I have always said, Christmas doesn't start until all my family gets here, but I am praying that they will change their mind and come home for Christmas.

Joyce in NC




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Re: Question about Meige/ joyce

Re : Re: Question about Meige --- joyce whitt/NC
Posted by kathy , Nov 23,2001,16:33 Top of Thread Archive
after all you have been thru joyce, you deserve to be MORE than cranky as much as you want. you are usually very sweet and i hope you feel better soon.



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Re: Question about Meige/ joyce

Re : Re: Question about Meige/ joyce --- kathy
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 25,2001,13:09 Top of Thread Archive
Kathy, thank you for your kind word. I made myself get up this morning and go to church. I am glad I went. We has a Missionary from Hondorus and he was any thing but dull. He has a wonderful singing voice and if he wanted to he could have become a professional Christian singer but he had rather serve as a missionary in Hondorus among some of the poorest people. My Sunday School class prayed for me and I believe they want to think of me as a "Saint" but I am far from it. But my faith is all I have going for me right now.

When I go to the doctor tomorrow I want some answers as to why my eyes make my head hurt. I feel like my face is a battle ground. There is the constant squeezing, my eyelids are continually pulling down and at the same time my forehead is trying to open them. I feel a continual pulling down and at the same time my eyelids are trying to pull open and there is the constant strain . Is there a nerve in there that can be cut? I am thinking drastic but this is to show you that I am in such pain, I can't stand it much longer. Even when I try to relax and just keep my eyes closed there is the constant battle going on. AM I THE ONLY ONE THAT THIS HAPPEN TO? SURLEY NOT. wOULD OTHERS SPEAK UP AND LET ME KNOW THAT i AM NOT ALONE IN THIS PAIN.

I quess I really don't have much faith in doctors because I think that each one I have gone to will hold the answer to my problems. My eyes are worse after this surgery and I can't help but state it. I am being honest and right at this point in my life I would not recommend this to anyone.

Joyce in NC - I will let you all know about what happens tomorrow. Thanks for listening - and thanks for being here when I need it.




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Re: Question about Meige/ joyce

Re : Re: Question about Meige/ joyce --- joyce whitt/NC
Posted by Rita Molnar , Nov 25,2001,20:24 Top of Thread Archive
"I feel like my face is a battleground". Wow, Joyce, I never heard it described any better than that.
At the end of every day, I am so exhausted from fighting this thing, and I hurt so much, all I want to do is sleep. It's almost impossible for people without this affliction to understand what's going on with us, isn't it? All I seem to hear is "you look fine to me". I don't have any answers, either, and I keep on looking, hoping that there is something inside of myself that can fix this thing that is wrong with me. I guess if we can hold onto our faith, we'll be rewarded with the strength we need to handle our problem until some cure comes along. In the meantime, remember that you're NOT alone...and thanks, Joyce, really, for reminding me that I'm not.



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Re: Question about Meige/ joyce

Re : Re: Question about Meige/ joyce --- Rita Molnar
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 26,2001,13:37 Top of Thread Archive
Thank you Rita for your reply. I am sorry that you too are fighting this battle but yet I am relieved that I am not alone. My doctor is a good doctor. He trained with Dr. Anderson of Salt Lake City and he assisted him in over 200 surgeries and inhis private practice he has done over that amount. He gave me more injections today even down to my chin because my chin is pulling down while my mouth is pulling up. I asked him about the headaches and he said a lot of his patients had the headache with their spasms and I also told him about my light sensititivy. I have to put on my sun glasses and a sun visor before I can even turn on the lights in the morning and then I have to go back to bed to rest them before I can get started on my day.

I had had a limited myectomy with another doctor in May of '99 but he did not take out enough muscle so that lasted 6 weeks. I went to him for approx 2 years with the Botox working one time for 6 weeks, on the other injections I did good to get one day or a half day of relief. He tells me that he can do nothing more for me so I go to another doctor at Duke a big teaching university in NC and he basically told me he could not help me either. So that is how I ended up with this doctor. He come highly recommended by the Foundation and I guess I will stick with him for a while. He did a brow lift with my surgery that he performed Aug. 1 and the back part of my eyebrow has already pulled down so on Dec. 18th he will do a procedure in his office to tack up that back part of the brow and hopefully that will help.

Joanne, thank you for your reply also. By the way. I already feel better becauses my eyes are open - no spasms and my lower face is "behaving". I hope this last longer than the last time. I do appreciate your help and just your willingness to listen and give me some encouragement.

Joyce in NC who is going to drive to the grocery storen ALL BY MY SELF. It's only 2 blocks away so surley I can make it that far.




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Re: Question about Meige

Re : Re: Question about Meige/ joyce --- joyce whitt/NC
Posted by Moderator-JB , Nov 28,2001,11:24 Top of Thread Archive
Joyce:

No, you're certainly not alone with the pain.

Just a thought, you may want to have the doc inject more into the muscles between your brows where the frown lines appear.

Are the TMJ areas on either side of your face being injected?

Hang in there,

Judy




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Re: Question about Meige

Re : Re: Question about Meige --- Moderator-JB
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 28,2001,12:29 Top of Thread Archive
Thanks Judy, I am not sure where the TMJ area is located but he does put about 3 across the top of the check and one a little further down and this last time he put one on each side of the mouth but more in the chin area because my chin was pulling down. He usuallly puts one or two between the eyebrows and before I had surgery he put 3 across the foreheads but I don't think he did this last time. Of course he puts some around the eyes.

He is going to put a stitch in the eyebrow in the arch area because my spasms have been so forceful that it has pulled the stitches out where he did have them tacked up. That will be done Dec. 18th.

Joyce in NC - we will set a record temperature wise today. 75 degrees. The last time that happened here was in the 70's. I would love to see some cool weather and we really need the rain.




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Re: Question about Meige

Re : Re: Question about Meige --- joyce whitt/NC
Posted by June in Toronto (June Floyd,June in Toronto), Nov 28,2001,22:20 Top of Thread Archive
My heart goes out to you, Joyce, with everything you are suffering from - please hang in there, there must be better days ahead. God Bless.

June in Toronto (beb/meige)




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TMJ ...

Re : Re: Question about Meige --- joyce whitt/NC
Posted by Moderator-JB , Nov 29,2001,11:21 Top of Thread Archive
Joyce:

If you open and close your mouth you will feel where the hinge for the jaw is on either side of your face just in front of your ear. A shot there for me (of course we are all different) stops the feeling that a little nasty elf is standing on my lower jaw bone and pulling out on each jaw. It also stops the feeling of a moving toothache all along my jaws.

Good luck,

Judy




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Re: TMJ ...

Re : TMJ ... --- Moderator-JB
Posted by Virginia , Nov 29,2001,14:41 Top of Thread Archive
Judy,
Is your jaw tender where the bone curves from your ear down toward your chin?

Virginia in AL, expecting tornados




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Re: TMJ ...

Re : Re: TMJ ... --- Virginia
Posted by Moderator-JB , Nov 30,2001,01:10 Top of Thread Archive
Virginia:

It aches like an abscessed tooth would. There is a spot just under the the cheek bone that can be pressed with my hand and it will alleviate some of the discomfort.

Judy




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Re: Question about Meige/ joyce/Rita

Re : Re: Question about Meige/ joyce --- Rita Molnar
Posted by kathy , Nov 29,2001,03:06 Top of Thread Archive
thanks for sharing your experiences with us rita. i think a lot of us are exhausted with this thing and after a particular trying day there are really no words to describe how one feels, except for how you are now. it seems we can only rest, regroup and get enough energy to start all over again.



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Re: Meige/ joyce

Re : Re: Question about Meige/ joyce --- joyce whitt/NC
Posted by Joann Humphrey , Nov 25,2001,20:55 Top of Thread Archive
Joyce I sure hope the Dr. can help you. I suppose you've tried hot packs or cold packs & anything else you could think of to get relief.
What kind of surgery did you have & who did it. I'm scheduled in mid Jan. & sometimes wonder if I'll get as much help as I wantor if I'll end up with different problems than I now have. Good luck tomorrow.
Joann in Ark.



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Re: Question about Meige/ joyce

Re : Re: Question about Meige/ joyce --- joyce whitt/NC
Posted by Tim Johnson-PA-USA , Nov 26,2001,20:56 Top of Thread Archive
Joyce, I wonder how you made out at the doctor today. You certainly have my sympathy regarding the PAIN you are experiencing. Not a day goes by that I do not either wake up with a headache that gets worse as the day goes by, or if not bad in the morning, by afternoon/evening my face feels indeed like a battlefield. I use the hot compresses regularly, drops, gels, etc. Most pain medications will not touch the pain. My family doctor has been trying different pain meds. We found one strong one that helps if I take it faithfully, but it is very expensive and my insurance company will not cover it. The pain seems to be centered behind my eyes, usually the right eye, and into the temple and around the ear to start with. Then it just spreads over the whole face, forehead and neck. The only thing I can do is close my eyes, but the pain keeps from rest or sleep when bad enough. If I don't try to use my eyes as much and don't work, the pain is usually some better, but not always. Hope you can get some relief. I agree that we "can't stand it much longer." Some days (more all the time) I get very frustrated at what the BEB is doing to me. My last injections of two weeks ago have had some affect, but not all good, as the problems in the throat and breathing are worse. What surgery did you have, and when and by what doctor. Sorry it hasn't been successful.
Tim Johnson in PA where we need rain badly.



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Re: Headaches

Re : Re: Question about Meige/ joyce --- Tim Johnson-PA-USA
Posted by Virginia , Nov 26,2001,22:05 Top of Thread Archive
You may have tried this already, but when I used to get headaches that nothing would ease I found that Tylenol Sinus helped. I don't seem to get the headaches much since my myectomy, though. Also, the botox injections in my forehead (between my eyes) helped. Actually they helped the headaches more than the eye spasms. I, too, wish someone would come up with something to help with the breathing and lower face/throat spasms.
Virginia in AL, where we finally got some rain after two months with practically none.



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Re: Headaches

Re : Re: Headaches --- Virginia
Posted by kathy , Nov 29,2001,03:16 Top of Thread Archive
i found the tylenol sinus to be helpful also at times. that was before the celebrex. we finally got some much needed rain which allowed me to participate in thanksgiving and are expecting heavy rains today. these storms in the south are no joke, however! with the tornadoes and all.



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Re: Question about Meige/ joyce

Re : Re: Question about Meige/ joyce --- Tim Johnson-PA-USA
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 27,2001,07:22 Top of Thread Archive
Thanks Tim for your reply. I am sorry you are experiencing this pain also. Do you ever get the feeling the doctors think that we are not in as much pain as we tell them? I Know they do the best they can and I feel like I have a good doctor.

He injected more places on my checks and even down my chin, so far so good. The spasms were relieved almost immediately and my eyes were wide open. I came home feeling so good that I drove ALL BY MYSELF to the grocery store 2 blocks away. First time in months I could drive. Different story this morning. I woke up with headaches and eyes closing as soon as I turn the lights on. I can lay in my bed in the morning in the simi darkness and just look around the room, no trouble seeing, it is just when I turn on the lights that it closes my eyes down.

My family care doctor has prescribed Vicodin for me and it barely phases the headaches now. I also take Esigic plus, it has caffeine in it, it doesn't help. I also have taken Midrin and it doesn't help. Like you my pain is centered behind the eyes and then radiates put to the forehead, temples and all over my head. By the way several years before I was diagnosed with BEB I had Migraine headaches and had never had any before (except years ago when on birth control pills but that was 40 years ago. I think that there is a corralation between the migraines and my BEB. Please e-mail me (click on my name above and let me know the medicine the doctor prescribed that has helped you. I have also tried Imitrex for my migraines but the pill doesn't work only the injections.

Joyce in NC - Life goes on and only by the grace of God can I make it.




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Re: Question about Meige/ joyce

Re : Re: Question about Meige/ joyce --- Tim Johnson-PA-USA
Posted by Joanne Matuzas , Nov 27,2001,08:25 Top of Thread Archive
Joyce and Tim, am sorry to hear about all the pain you are experiencing.
I can consider myself fortunate for the time being as I have some aching every so often but thus far that's it. Tim, I wondered what pain med you were taking that was so expensive. I recall you mentioning you were
getting injections only in your eye muscles. I have noticed and it's been mentioned on the bb before that it seems the meige and breathing difficulties are intensified after the eye muscle injections--for me it lasts about a month or so and then I seem to have just a bit of relief
in the other areas and the third month I have more symptoms both in the eyes and lower face. Both Virginia and I have had small amounts of botox injected in the outer neck muscles with not much relief. My next round of injections on Dec. 7, the neuro plans to inject more in those outer neck muscles to try to provide some relief for the grimacing and breathing irregularities. I am fortunate in that benedryl takes the edge off for me some of the time but as you all know, this disorder can be persistent and unrelenting. Hope you find some relief.
Joanne M. San Diego, CA



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Re: Question about Meige

Re : Re: Question about Meige --- Carol Brown
Posted by Joann Humphrey , Nov 25,2001,20:49 Top of Thread Archive
We're all on medicine I would guess, & I feel that's part of the speaking problem. I know I have trouble saying what I want sometimes.

I don't have meige however, so your problems are probably doubled up.

Joann in Ark with BEB




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Re: Question about Meige

Re : Question about Meige --- Carol Brown
Posted by Joanne Matuzas , Nov 20,2001,18:06 Top of Thread Archive
Carol, there have been some informative answers to your concerns regarding the meige. This oromandibular dystonia causes all kinds of
havoc, of which I believe the breathing difficulties are included.I
I experience the breathing difficulties together with grimacing and
some tightening of the neck muscles. I am very concerned about losing
my smile so have had no injections in the lower face area. He will try
some injections across the front of my neck in hopes of alleviating some
of the overactivity there. What I also noticed the last time I had injections was that my eyes, face, neck would spasm and my face tended to look contorted since my eyes were frozen from the botox and upper part of my face and forehead. It was a strange experience but after a month's time, it all relaxed. Thanks everyone for sharing about this.
Joanne M. San Diego, CA



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