Re: Questions about Meige
Dianne, you don't sound confusing. This disorder can be that way, though. My initial symptoms of meige were difficulty or irregular breathing and some grimacing which basically manifests itself like a false smile. Later I developed spasms in the neck/throat area. There are others on this BB who have the breathing difficulties as well. Some of us get some relief from meige with botox and meds but it is quite variable. I am sorry you are in the ranks of those with us who have meige but you are in good company. Stay tuned and I am sure you will get more input from this BB.
Joanne M. San Diego, CA
Re: Questions about Meige
Hi Joanne,
Thanks for the info. Everybody on this BB have been very helpful.
Talk with you later.
Dianne B,NC
Re: Questions about Meige
HI Dianne. My first symptoms of Meige occurred after my first BOTOX injections. This isn't always related but I do feel that some of the symptoms that I experienced during this time were "side-effects" from the BOTOX. A couple of weeks after I would get my injections, I would start having this nose scrunching thing happen. It would continue pulling and scrunching until the BOTOX would start to wear off and then I wouldn't have any more nose problems or drawing up of my upper lip until I would get my next set of injections.
As BOTOX is working, it puts the nerves in those areas out of commission but it also allows for new nerves to sprout and to cause spasms in other areas. As the BOTOX wears off and the old nerves start working again, the new nerve sprouts reabsorb (for lack of a better word) and no longer cause the problems that they were causing. Below is a link to a site from the "BEBRF Main Page" where there is an article referring to this.
http://www.blepharospasm.org/bonner01.pdfMy nose and upper lip problems seemed to be directly related to the injection sites. Sometimes this really can't be helped. Injections placed on either side of your nose about midway down will stop the nose and upper lip spasms but may also wipe out your smile and make it difficult to eat as the upper lip will be very weak. The last time that I got injections I had the doctor put 1.5 units on either side of my nose. I also had him direct the injections upward. This seems to have helped and has not totally taken out my upper lip although I still got some weakness there. If the injections in this nose area are placed up higher, they can cause tearing problems or cause the inner corning of the upper lid to turn outward (not something that you want to happen). In telling what I feel happens with me with the nose scrunching and mouth pulling, this may not be what is happening to you. It is something to be aware of, though. I also have some breathing problems which I feel are related. Mine are such that I find myself breathing out and then not breathing in. There are times that I have to consciously take a deep breath. It is like my brain has forgotten to tell "me" to breathe in. It just remembers to breathe out and then I just hold my breath. It is an unconscious(no pun intended) action. I also seem to make noises that are related to the breathing difficulties and don't have any control over them. Hope this helps a little. Sorry that it was so long. Shirley in Arkansas with BEB/Apraxia
Re: Questions about Meige
Hi Shirley,
Thanks for the info . Could you tell me how/where to find the article you spoke of? I can't seem to find it.
Thanks again.
Dianne B. from NC
Re: Questions about Meige
Dianne, if you click on the link that I posted, it should take you to the article (if you have Acrobat Reader installed). The article is in a PDF file. There should be instructions that pop up and tell you how to install Acrobat Reader so that you can read the article.
You can also find the article by going to the top of this bulletin board page where it says "BEBRF Main Page". Click on it and when you get to the Main Pages-at the top will be "What's New?". Click on this and scroll all the way down the the bottom and it will say "Feb. 18, 2001 Research Abstract-Inhibition of axon sprouting after Botulinum Toxin". Click on this and another window will pop up explaining about Acrobat Reader and then the article will be listed again. Click on the article again and you will then need to install Acrobat Reader if you have not already done so. I think that this is the only way that you will be able to read the article. I tried to copy it to paste into my post but I couldn't copy it. Someone else may have an easier way to get the article and maybe they will post.
Sorry that you had trouble getting to it. It isn't a big deal to install the acrobat reader-I could even do it. :-) It's free and you just follow their instructions. Give it a try and let me know how it works out.Shirley in Arkansas
Re: Questions about Meige/Holding breath
I also have this problem but it seems to happen when I am under a great deal of stress, then my entire body seems to tense. If you can get yourself to consciously breath out , somewhat like June's yoga breathing or just laying down and waiting for your body to regulate itself and calm down seems to help me in this problem.
Re: Breathing problems
Thanks Kathy. The breathing problems seem to occur whether I am stressed or not. I mostly notice it when I am in a sitting postition and am relaxed. I'll just notice that I'm breathing out for a prolonged amount of time and then just taking little short breaths in. I'll also freguently make a noise when I do eventually breathe in. I can get it to straighten out with conscious effort but it oftentimes resumes when I relax again. My thinking is that it is more of a brain problem than a lung problem.
It does seem to help if I consciously breathe out and then take a slow deep breath in. I was concentrating more on my breathing in as this seemed to be where the problem was but attacking it from the other direction does seem to make the inspiration phase easier.Wiring-gotta wonder and marvel at how it usually all works so smoothly and without having to think about it. But throw a little kink into the system and Whoa! Shirley in Arkansas
Re: Questions about Meige
While I have not officially been diagnosed with Meige, I have no doubt that it’s surfacing. I have the grimacing, mouth opening, nose scrunching (My BOTOX is wore off and I’m still scrunching) and breathing problems as well. I remember long before I even knew what BEB was, having to take deep breaths after periods of unconscious pauses. This actually was a trick for a while to get my eyes to open, but no longer. I will let you know what the Doc says this week about these new symptoms. Ken Where is the dag-burn spell cheker! --modified by Ken C. at Mon, Apr 01, 2002, 16:46:16
Re: Questions about Meige
Ken, don't you just love those periods of not breathing and then "realizing" that you are basically just holding your breath? Rather unsettling. I keep thinking "Duh, I shouldn't have to tell myself to breathe".
I'd love to hear what your doctor has to say about your new symptoms.The spell-check went by the wayside. The website used to get it for free and then they decided that we'd have to be charged for it so it was dropped from our website. I miss it, too. At least now I have an excuse for my typos. We're all in the same boat, though. Don't worry about any errors. I only point out the ones that Virginia makes. Shirley in Arkansas
Re: Questions about Meige
>>Ken, don't you just love those periods of not breathing and then "realizing" that you are basically just holding your breath?....I'd love to hear what your doctor has to say about your new symptoms.<< Well, I’m not holding my breath about what he might say, (hehe) two others have basically dismissed it as anxiety from the BEB or some type of throat problem. He also said he hadn’t heard of anybody going on disability from it. Go figure.
Re:Breathing and anxiety
Anxiety and stress might make it worse but I don't in any way believe that is the root cause. It is "natural" to breathe-it is not something that you are ordinarily aware of doing. I don't notice this "not breathing" until it gets to the point where it is quite obvious to me and that my breathing pattern is not normal and I have to concentrate to get things going smoothly again and then it is still a labored effort. Granted, your respirations can be effected by your anxiety level but I really don't believe that this is primarily related to anxiety.
I'd go along with anxiety causing rapid respirations or hyperventilating or a rapid heart rate but not this particular breathing problem that a lot of us seem to have. I think that it a fairly common phenomenon that hasn't gotten much attention in regard to dystonia. Like BEB is linked to the brain, I feel that this breathing problem is, too.My first BEB doctor also told me that no one got SSD for Blepharospasm. I did and many others have. I think there are a lot of people out there that do well with BOTOX and go on about their lives in a fairly normal way (most of the time). I have talked to some. But for many others of us, it is a day to day struggle to get by in a semi-functional way. I'm glad that you aren't holding your breath on this one. Acknowledgement may be a long time coming. Shirley in Arkansas
--modified by Shirley-Arkansas-USA at Tue, Apr 02, 2002, 10:12:49 --modified by Shirley-Arkansas-USA at Wed, Apr 03, 2002, 10:10:15
Re: Breathing and Dystonia
Another "puzzle" solved. For years I too have had this breathing difficulty when I would realize that I had stopped breathing, and had to consciously inhale and exhale a few times to get it to work again on its own. This would not be a daily occurrence, but often enough to remember and know it to be a nuisance. I always thought that everybody must have this same problem, and never attributed it to BEB/ meige or dystonia. My other breathing problems are more frequent, and usually start when my eyes are very bad and the Meige symptoms kick in. My throat closes and I feel as though I am choking, with constant clearing of throat; this is often accompanied by breathing out short, rapid breaths with noises that sound like snorting. When this is going on, I notice that it is hard to take in a slow deep breath, and my voice is sometimes hoarse or raspy sounding. This can come on most any time, and last for up to hours. Extra meds, isolation and rest are the best way to stop it, as it rarely goes away on its own. These two breathing problems do not seem to be connected, and are not brought on by any anxiety. There have been several things that I always attributed to being normal to everyone, that I have found out on this board and elsewhere are the result of BEB/Meige. This breathing problem is another one.
Tim in PA
Re: Questions about Meige
Ken, I totally agree with Shirley. I've been anxiety-ridden much of my life and have never experienced breathing problems or have forgotten to breathe, as I catch myself doing now constantly. My BEB started about 7 years ago, followed by meige about a year later and the breathing problems came later yet, but have become quite bad. I notice it most when my lower face spasms. I don't have the nose scrunching so many refer to, my mouth, jaws and neck spasms and that is when I have difficulty breathing. I do not have any problems with eating, but find it extremely difficult to speak under these conditions.Christel in Ca. whose adult grand-daughter in Washington was diagnosed with MS 3 years ago and who found out yesterday that it was a mis-diagnosis. That was the best b-day gift.
Re: Questions about Meige/Christel
That is wonderful, Christel. I hope her situation gets better as well as your worry!
Re: Questions about Meige/kathy
thanks, Kathy, it was a tremendous relief.
Re: Questions about Meige/kathy
Christel What wonderful news about your grandaugther.
You got the very best of birthday presents.
Take Care
Colleen in IL
Re: Questions about Meige/Colleen
Thanks Colleen, I sure did, didn't I?Christel in Ca.
UPDATE Re: Questions about Meige
Shirley, I just got back from my doctor, who I had gone to in the beginning when the symptoms had just started, (18months) and he now agrees that BEB is basically the last thing on the table and that it’s most likely the diagnosis. While he said some of my symptoms are somewhat atypical, I exhibited many that were right on. As far as the breathing issues, he said to take it up further with Dr. Merrit. With whom I have an appointment with in May. We sort of agreed that I may be reacting or compensating for the eyes closing with the mouth opening and other facial stuff. He does not think I have Meige. I went back to Dr. Hogan to make sure that we covered all the bases before I moved on. He was compassionate, which is more than most, and knowledgeable in the field. He knows Dr. Merit and recommended him, so I’m feeling good about that. Another month without BTX, it’s killing me, I didn’t know how much it was helping until now. Sorry to ramble with fragmented sentences but it’s better than nothing, right? Ken --modified by Ken C. at Thu, Apr 04, 2002, 14:20:44
Re: Drs./Symptoms/BOTOX
Thanks for the update, Ken. I think that many of us have somewhat "atypical" symptoms. It would be great if we all "fit" just right and all had identical symptoms but we don't. Would sure make the doctor's job of diagnosing things a lot easier. I do sometimes sympathize with them. They are expected to know so much and basically they only have what we tell them(when they listen)and what they see(when they look) and some diagnostic tests (which there aren't any for BEB) to go by. It is a tough job. Some patients aren't always the best in knowing how to describe their symptoms and explain what is going on with them. As a nurse that spent a good number of years working in doctor's offices and trying to get histories and symptom information from patients, I know that this can be a very difficult job. Some people even "hide" information and want to see if the doctor can figure it out, anyway. Or overlook telling the doctor something that might have been very important. Oops, got on my soapbox again. Sorry. I understand about the BOTOX. I know that it helps some things, especially the intense squeezing but it doesn't get my eyes open so sometimes I wonder why I even bother with it but after about 9 or 10 weeks and the BOTOX is starting to wear off, I remember why I go back to get it for the relief that it does provide me. Fragmented sentences are fine. I do it all the time. I've ok'd it with the English majors on the board. :-) Shirley in Arkansas on a beautiful, cool and sunshiny day.
Re: Drs./Symptoms/BOTOX
Ooops, my last post I meant to say the Doctor does NOT think I have Meige. I edited it but wanted to reply here also. Thanks, Ken
Re: UPDATE Re: Questions about Meige
My doctors looked for "pursing of the lips" as a typical symptom in trying to determine a meige diagnosis. I had it, though at the time I wasn't aware of it, now it's quite obvious. Do all of you with meige purse your lips?Christel in Ca. - no rain, no wildflowers in our area.
Re: UPDATE Re: Questions about Meige
Hi Christel...I don't purse my lips...I usually draw the left corner of my mouth downward, so much that I've created a "wrinkle line" there. However, mentioning pursing one's lips, you've just added to one of my "Molnar theories" that genetics are very involved in BEB/Meige. I had an uncle who uncontrollably pursed his lips all the time, and when my problem was diagnosed, I wondered if I had the same problem that he did. ???? He's been dead for a number of years, so I can't ask him about it...but I do wonder. I also wonder whether anyone involved in research checks this board out. There is so much to be learned here about us, and maybe the solution to our problems can be solved through combinations of the symptoms described here. Anybody out there????? Help us....please..... Rita in NJ....bumping into walls...but still smiling !!!!
--modified by Rita Molnar at Thu, Apr 04, 2002, 12:25:34
Re: UPDATE Re: Questions about Meige
Christel, I may have just a bit of lip pursing. The muscles around
my mouth and lower face are overactive and the grimacing which is like
a forced smile is more pronounced--meige full blown I guess. Up until
now I haven't considered it, but am thinking of speaking with the neurologist next visit about small amounts of toxin in lower face. The grimacing is really starting to cause natural wrinkles to deepen and some new ones are developing. The difficulty breathing is really
disconcerting as well. That symptom makes it difficult for me to speak
in a natural way. As Shirley has mentioned, we are all different and
that is what makes this so challenging...:<) More info about others
experiences is invaluable in making decisions about our own treatment.
Joanne M. San Diego, CA
Re: UPDATE Re: Questions about Meige
It really is an artful science getting the BOTOX dosages and sites just right.
The last time that I got BOTOX, I asked for a tiny dose on either side of my nose. My nose had been pulling so much and spasming so much in that area that the muscles on either side of my nose were enlarging and my glasses were no longer fitting properly. Those muscles were really working overtime. I was very surprised that they were actually enlarging but it was quite visable. I was hesitant to get injections there again as they had always wiped out my upper lip when I did. He said that he would just give me the lowest dose of 2.5 units. I told him that I had tried that before and that amount had wiped out my upper lip. I asked for half that amount and he said that he could do it but didn't see much point in giving a dose that small. Well, the spasms in that area have stopped-I can still scrunch my nose if I try, though. The constant pulling in that area is gone and I only notice a minimal effect in my upper lip. The area has also smoothed out and doesn't look like a small mass of overdeveloped muscles. A tiny dose is sometimes all it takes to curb the overactivity and still leave one functional if given in the right place. I also took it upon myself to massage the area upward so that the BOTOX wouldn't work its way down. The doc asked me what I was doing. I told him but I don't think that he agreed with my thoughts on this.
Anyway, Joanne, just a suggestion for injections in your lower face when you speak to your neuro about this. If you feel that you need them in a certain place but you or your neuro are concerned about drooping and leaving areas non-functional, you might just ask for a very, very tiny dose to see if it will help.Shirley in Arkansas
Re: UPDATE Re: Questions about Meige
Thanks, Shirley. I was actually starting to think in that direction.
We'll see how it turns out. I go end of April and I am starting to
spasm more now. Joanne M. San Diego, CA
Re: UPDATE Re: Questions about Meige(Shirley)
Hi ShirleyThat is interesting what you said about massaging the injection site upward. That does make sense, to me anyway. Did you just do that on your own, or did someone tell you that might work? I just got my injections Wed. I think they hurt more this time then ever before. I didn't move or even show pain but I think she used a bigger needle this time, or something. She has me scrunch my nose up to see where to put the Botox. Does yours do that? I've never had mine effect my lip, but I am afraid that sometime that might happen since I've heard you all talking about it. I had just one site that turned a little purple. That usually dosen't happen. I just hope that they work better this time than last. Billie in Kansas
Re: UPDATE Re: Questions about Meige(Shirley)
Hi Billie. I believe that it was Lyn P. that had talked about a doctor massaging her injection sites. (not positive) I've had doctors tell me that it wouldn't make any difference and some have said that it would. I just thought that I would give it a try for this particular site since I didn't want my upper lip droopy. I really can't say if that made a difference or not. I didn't think that it would hurt anything, though.Sorry that your injections were more painful this time. You might ask your doctor if she did anything different this time. I hope that they work well this time for you, too. I wasn't asked to scrunch my nose to see where to put the BOTOX but I was asked to squeeze my eyes as tightly as I could. That usually causes my nose to scrunch and pull, anyway. I had more bruising (little spots) and the sites bled more than usual this time but I've been taking Aleve twice a day for a knee problem. I feel that was the cause. Shirley in Arkansas where the dandelions are blooming. :-)
Re: Questions about Meige
Count me in with the "heavy breathers." This just developed at the end of last year - I was not diagnosed, but the doctor seemd relieved when I told him about this symptom - he was then sure that all the symptoms I brought to him were anxiety and the trouble breathing was due to panic attacks. His misdiagnosis was nearly enough to cause a panic attack!!
I was pleased to hear that the yoga breathing exercises might help. I guess I will take the yoga video out of its wrapper - I think i got it about five years ago. Everything in its due time!
Are there any other things that people have found helpful? I don't think the neurologist connects the brething thing to meige, but I will ask him next week.
Re: Questions about Meige
Dianne, My meige did not start until after I had my first limited myectomy. I started having spasms under my eyes and then the next thing that appeared was my nose and top lip. The nose wrinkles up and pulls my top lip up. I hid it my puting my hand over my mouth and and pull down with that hand. Vanity, I suppose but the meige bothers me more than the BEB. I also started having noises in my throat - this takes place during my struggle/fight to open my eyes. I do not consciously make the noise it does it on it's own. Also I have some breathing problems but they have not been diagnosed as part of the meige. I am like someone else who posted that the doctor thought I was having an anxiety attack or panic atack. I do not think I had either - but the doctor always is right- right? Joyce in NC - today is going to be a beautiful day.
Re: Questions about Meige
I first noticed symptoms of meige about 6 months after my diagnosis of BEB. It started with a kind of grimacing - pulling down on the corners of my mouth and tightening of my jaws and neck. It wasn't long before I noticed the problems with my breathing. I may spasm around my nose, but somehow it doesn't seem to bother me. The grimacing, breathing problems (short, shallow breaths, "sniffing", having to remind myself to breathe), jaw and neck tightness, however, do cause discomfort as well as difficulty chewing and swallowing. I do get botox in my neck and jaw which will relieve those symptoms as long as the botox lasts. I had a limited upper myectomy in Nov. 2000. These symptoms preceded that, but are more bothersome now.Virginia in AL
Re: Questions about Meige
Hi, Dianne....
I think I might be different than most folks in that I recognized the symptoms of meige before those of BEB. When I was in my mid-40's, my secretary asked me if I might have had a stroke. When I asked her why she thought that, she told me that the left side of my jaw from the corner of my mouth, appeared to be drooping. I remember thinking that the reason was probably because of a "pulling" sensation in my nose, that seemed to cause the corner of my mouth to form into a frown. I attributed it to steady concentration, and to stress. I blamed the frown lines on my forehead to the very same thing...Perhaps it was really the beginning of the BEB, and I just didn't realize it. Shortly after that, I began noticing that when I was eating, I couldn't seem to move my mouth properly to chew. I also had, for many years, very severe pains behind my ears at times when I would chew, or eat certain kinds of foods. I suffered these symptoms for many years and thought that I simply had some bad habits that I couldn't control or change. It was only a couple of years ago that I was diagnosed with BEB and Meige and began getting Botox injections. Now, when I am realizing the full effects of Botox (I get Botox only for BEB), I find that the Meige symptoms seem to wane along with the BEB symptoms. And, when the Botox begins to wear off, the Meige becomes very troublesome. Now that the Botox is doing so well to help the BEB, the Meige has become the more troublesome of the two. Aside from looking strange from my facial spasms, my face (nose, teeth, mouth and jaw)becomes totally exhausted by the end of the day, from the spasms and trying to stop them. I notice also that I tend to accidently bite down on the inside of my mouth. Regarding the breathing....I never thought to connect this with Meige, but I do have irregular breathing; I exhale and seemingly forget to inhale...strange to hear others mention that...I thought it might be due to having taught myself as a youngster to hold my breath in fear when my father came in the door each night, so that I could hear if he was going to go sleep, or if he was going to have a fight with my mom (dad was a violent alcoholic & I had a scary childhood). I'm going to ask my doctor about the breathing when I go for my shots in 2 weeks. Well...we certainly are an interesting group, aren't we?
Hope my story is helpful....Hang in there, Dianne...
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