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| Confused - Meige/BEB/Nose scrunching/Botox |  | ||
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Posted by: kathy in Australia ® 05/23/2004, 23:46:48 |
Hi All, I am a little confused about the nose scrunching symptom. Hopefully someone can shed some light. The only spasms I had prior to diagnosis of BEB was in the eyes. Since Botox, I have had persistent nose scrunching, a few upper lip spasms and my jaw spasmed over the weekend (sort of shuddered). I had assumed that the additional spasms were as a result of the Botox due to the timing of onset. Yet other posts have indicated that the lower face spasms are as a result of Meige. Is it possible that I have suddenly developed Meige or could it still be a reaction to the Botox? Regards Kathy
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Posted by: Barbara ® 05/24/2004, 07:01:09 |
Kathy how long have you had BEB? Each of us are so different that some get results from nose twitching and botox and others get worse. Its a vicious cycle of hide and seek. You symptons sound like the beginnng of meige and I don't think that botox injections in a certain area can cause meige. Maybe we can get some feedback from the experts. Good luck Barbara |
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Posted by: June in Toronto ® 05/24/2004, 07:43:38 |
Hi Kathy, My Meige condition was diagnosed months after I was diagnosed with BEB. Unfortunately Dystonia can travel and often Meige accompanies BEB. I don't have Meige very badly, unlike some others, and do not get botox injections for it. I still determine that when my eye spasm are worse (when the botox is almost gone) the Meige gets worse as well. When the eyes are behaving better so does the Meige for me. When did you get your botox injetions - is it possible it isn't working for you yet and hence the Meige is worse right now? I'm no expert - just like having to deal with all this. Take care. June in Toronto, Canada |
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Posted by: Diane in Virginia ® 05/24/2004, 07:47:46 |
Hi, Kathy..
No need to be alot more nervous about your condition, really! You may be just developing a mild case of Meige - it's quite common. No, the nose scrunching is not a side effect of Botox. There was something about the "bunny twitch" in a back issue of the BEBRF newsletter - I'll try to locate it & get back to you. I was diagnosed with mild Meige because of symptoms of lower facial involvement - mild lip tremor, pursed lips, mild chin tremor. The nose twitching developed later. More next time... Diane |
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Posted by: Anita Croce ® 05/24/2004, 10:10:59 |
Kathy,
I have blepharospasm (both eyes)and I have Meige's Syndrome, along with the "Bunny nose movement". My doctor is able to control the movement in the nose and face (which is the Meige's Syndrome) with the Botox injections. Correct placement of the injections in the nose and face can help a great deal. Try to observe yourself daily to notice how often you need your injections. Some can go longer without injections then other people. Good luck! Anita Croce, North Central District Director, BEBRF |
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Posted by: teach1 ® 05/24/2004, 12:42:10 |
Hi Kathy,
I have had blepharospasm for 2 years, but I also have facial grimacing or spasms, sort of hard to describe. When I blink, usually one eye at a time, my head tilts to that side (cervical dystonia), and then my cheek sort of squeezes and my nose also scrunches up. Not a pretty picture!! I was told what I had was not Meige, yet I've never really met anyone with that condition so don't know how to compare myself with that.I have gone thro periods where my nose scrunches up for no reason and with no other spasms, I don't worry about it much, it's the least of what I do! It is tough tho, this condition, as a woman, I am a little vain, (I think we all are a little), and at 49, like to think that I'm not really old yet. So having my face do these bizarre things is embarrassing, and I'm just getting used to the stares on the street, etc. Hang in there though. My nose scrunching hasn't been around for a long time, so it does 'come and go'. Good Luck Teach1 |
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Posted by: kathy in Australia ® 06/01/2004, 22:50:43 |
Thanks for your reply - I too am a little vain - being "only" 38 and with young children I am quite sensitive to comments from people - I am getting better - especially now that I have been diagnosed and can give people a name to my condition.
One good side effect is that I have lost 14 kilos (about 2 stone) and my face looks as smooth as I did in my late 20's!! The weight loss is unrelated to the condition but at least makes me feel more attractive. My doctor also said I didn't have Meige - he said I have hemi-facila spasms and has since given me Botox for it - this has resulted in me not being able to smile at all - my top lip is totally immovable and I am starting to bite it on occasions when eating. Not a pleasant experience and I think I would prefer the spasms in my lip to this. At least the nose scrunches have gone away. You win some, you lose some! Interesting about your head tilting to one side - I have read that in other posts as well - my eyes blink together but my head tilts backwards - this causes neck pain as I am sure that it must do for you too. Perhaps this is a variation on the same problem? One good thing to come out of this is that my knowledge has increased greatly - not just on this condition but others that I have researched as well, it has given me a real appreciation, and sympathy for people with any kind of disability. I guess in the past I hadn't really thought about disabilities having had no-one in the family suffering (or anyone I know). I have had thoughts recently that if I have to give up work I would like to work on a volunteer program assisting others with disabilities. Perhaps this is God;s overall plan to make me a better person!!!!!! Take care, Kathy |
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Posted by: Sally in South Carolina ® 05/24/2004, 13:10:43 |
I was diagnosed with BEB last November & I noticed my right side of my face also drawing up 7 I have to twist my mouth to open my eyes when they are really bad. I was told by my dr. that once you have BEB, alot of people develop the meige syndrome along with it. As one of the others said, the worse your eyes are, the meige acts up more. It pulls the muscles in my neck so bad I have to go to the chiropractor to get adjusted. He said my neck problems are coming from my eyes since to open them I am straining so many muscles. I read that if you get BEB, you may also develop meige within 1 to 1-1/2 years after the BEB starated. My dr. will not give shots in my face. He said it would droop & look as if I had a stroke. He also said it is very dangerous to operate on the cheek since there is a major artery running thru it. Besides, it is the least of our worrie. Because when the eyes are good, the face acts better too. I do recall after my first sets of botox shots that my nose was scrunching, the dr. said it had to do with the shots, but not the jaw, face, cheek spasms, they are meige. I get the jaw shuddering also. Hang in there, maybe it will get better for all of us. |
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Posted by: Shirley Barr in New Mexico ® 05/24/2004, 15:54:18 |
Hi Kathy
Ok, here's my take on it...I never had the nose scrunching/rabbit nose until I received botox injections. In my opinion, you don't need to get nervous about this...it is just a side-effect of the botox. The botox stops the nerve from signaling the muscle to spasm...which is what you want it to do but you can get what's called "nerve sprouting" in other areas of the face (in your case and mine it is the nose). The nerves want to do their job no matter what and when you knock some of them out of commission with botox, they will start to branch out in other areas. They are determined to make something spasm in our cases. When your botox starts to wear off, the New nerve sprouts die back and the old ones take over again. So the nose scruncing will stop when your botox starts to wear off...but your eye spasm will return. Ain't life grand! Since I can't stand the nose scrunching either, I do get injections on either side of my nose. These are tricky and must be given up fairly high (a little higher than half way up...I wish that I could draw you a picture) and it helps to have the needle pointed upward when the botox is injected. A small dose will do it...I get 2.5 units on either side of the nose. If I get a bigger dose than that or if they are given too low, my upper lip is wiped out and it gets droopy. I've learned this by trial and error and one very good doctor who let me know what needed to be done to prevent or stop the nose scrunching. Sometimes a little goes a long way for improvement.
Shirley in New Mexico free of nose scrunchies |
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Posted by: Shirley Barr in New Mexico ® 05/24/2004, 16:10:13 |
Alrighty...yes that's my nose and the black dots are not normally there.
The black dots show approximately where I get my injections to stop my nose scrunchies. 2.5 units on each side of the nose. Shirley in New Mexico who no longer has black dots on her face.
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Posted by: Anita Croce ® 05/24/2004, 17:42:48 |
Shirley,
Nice to see you posting. I'm so lucky, ha, ha, - I get one more injection for the "Bunny Nose". Mine are placed closer,actually in the sides of the nose and then one in the upper part of the nose, between the eye area. My doctor uses a method of injections where the needle is slightly slanted while doing any of the injections whether it's in the nose, cheeks, chin, eyes or where needed. Anita in Ohio |
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Posted by: Shirley Barr in New Mexico ® 05/24/2004, 17:54:42 |
Hi Anita
I actually get the injection that you are talking about between the midline of the eyes and also one right above that between the brows. Those tend to help the pulling that I get at the bridge of the nose. Getting them in the sides of the nose is a nice (or not) alternative site for the nose scrunchies. Most injections for BEB are going to go in slanted, I was trying to explain that the direction that that slant goes will possibly keep the botox from going where it shouldn't. At least that is what Dr. Perlmutter in St.Louis told me. He was really big on "direction" of the needle. Good to see you posting too! Shirley in New Mexico who should be getting ready to go on a short trip to Arkansas to pick up her son for a visit with us in New Mexico. |
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Posted by: kathy in Australia ® 05/28/2004, 01:03:17 |
Shirley, thanks for the photo - it helped when talking to my doc. He ended up doing 2 sites - just above and below where you have yours done. Here's hoping for relief!! |
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Posted by: June in Toronto ® 05/24/2004, 17:11:20 |
So I know I always was different Shirley : - ) My nose scrunches when the botox is wearing off - different stroks for different folks I guess. Nice to see you posting more again - we sure missed ya! June in Toronto, Canada |
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Posted by: Shirley Barr in New Mexico ® 05/24/2004, 17:44:19 |
Hi June,
I've missed you folks too. Some nose scrunching is Meige but mine always seemed to be a direct side-effect from the Botox injections. Like we always say...everyone is a little different with this. Thanks for helping to clear up the difference between Meige symptoms and side-effects of Botox. Shirley in New Mexico Modified by Shirley Barr in New Mexico at Mon, May 24, 2004, 19:10:16 |
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Posted by: kathy in Australia ® 05/27/2004, 22:40:15 |
Thanks Everyone for your help on this matter. It seems that experiences are split 50/50 between it being a reaction to the Botox and a further development. I saw my doctor yesterday to tell him about these symptoms. He replayed the video that he took on my first visit 2 weeks ago - totally amazing stuff - I actually had the lower face spasms back then but I hadn't noticed (neither had my husband) because of the severity of the spasm in the eye!! He gave me further botox in 2 places down each sode of the nose, 2 across the upper lip and 1 out on the "smile lines". So this is a total of 60 units in the eyes and 40 units in the lower face = total 100 units in 2 weeks. I took advice from this BB and asked him for a 20 gauge TB needle this time and he was really accomodating, suggested that the 25 gauge needle is better because it is removable and he can change to a new one when he feels it getting blunt or I start to feel the pain more. Here's hoping that I get some relief soon - it is performance review time at work and I feel that others must think I am sneering at them - it seems to be worse with those I have to deliver bad news to!! Also interesting, I asked him about a myectomy operation and he said that it was rarely done these days as the Botox is so effective in management of BEB - a totally different view to what I get from this BB. I asked if he had ever done one and he said "No" but was confident that he could do it easily if he had to - I have to admit that my confidence level has dropped a little in him - I can't believe that any doctor could have confidence in something they hadn't done before, especially when there are such serious consequences for failure. |
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