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Posted by: Neanie ® 04/10/2004, 23:36:26 |
Hi, I've been newly diagnosed with Meige Syndrome which I was told is very rare. Do any of you have this form of dystonia and can you share info with me? It would be greatly appreciated because I'm feeling all alone with this and have no idea what's coming next. Thanks! Neanie |
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Posted by: June in Toronto ® 04/11/2004, 05:18:52 |
Hi Neanie and welcome to the bulletin board. I have Blepharospasm and Meige Syndrome, although of the two the beb is the worst and I get botox injections of 90 units every 3-5 months for that. I don't get any botox injections for the Meige but others do and I'm sure they will post back to you. I find the Meige is at its worst when my injections start to wear off or I am going through very stressful situations. Not seeing with the Blepharospasm is far worse for me although I know the pain from sustained spasms of the Meige can be very bad as well. I hope you have a good movement disorder specialist and that injections and/or medication might prove helpful to you. Tell us more about yourself if you feel comfortable doing so - you are not alone and you will find us here for you. Best wishes June in Toronto |
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Posted by: Neanie ® 04/11/2004, 18:26:49 |
Hi, June Thanks so much for responding so quickly to the bulletin. Just now turned on the computer and immediately came in here to see if someone could identify.
I was diagnosed with Meige in early 2004. I hadn't known of this rare disorder let alone known what dystonia is and how it effects people. I first talked with one of my regular doctors about 2 1/2 yrs ago about my eyes getting weird sometimes when I drove. I would park my car and take a short nap and thought, well, I must be overtired...I was but as time went on I and others noticed one eye lid drooping and the other one enlarged...went to my internist, to my opthalmologist who said when my eyes spasmed,' I don't know what's this is, you better see a neurologist'. I thought it unsettling that the eye doctor was stumped. Went to a neurologist 2 times, then she sent me to a neuro-opthalmologist who finally diagnosed it. He is the head of the dept. at University of Connecticut Medical School... I hope he's competent...he put me on desimprimine and I think it has helped with the droop some but the spasms are getting worse...there are a couple of other meds he might try..will start with neurtontin tomorrow...however, if I need the botox injections, my insurance doesn't cover it, and I'm of modest means financially....Over the years I've taken Xanax and either a tricyclic or serontonin reuptake inhibtor anti depressant such as Paxil or Prozac....I have an anxiety/panic disorder and started in with it about 30 years ago...though my doctors tell me it isn't medicine related because the meds aren't heavy duty phycotropic ones, I do wonder if there is a connection...All of this has been about, 'me, me, me'...please tell me more about yourself...thanks again for writing back! Take good care. Neanie (Jean) |
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Posted by: June in Toronto ® 04/12/2004, 05:29:12 |
HI Neanie - thanks for sharing more with us. If my eyes are reading your post correctly (they aren't good right now after having botox injections) then you have Blepharospasm (if its in 2 eyes or Hemi-Facial Spasm if its in 1 eye only) and Meige (the face). Either way - its not nice! I hope the doctor is competent (like you said) and that the meds help you. I've had BEB/Meige for over 9 years now and, as I beleive I said before, I get 90 units of botox evey 3-5 months and it helps me a lot AFTER I get over about a month of bad side effects. I go to a very good neurologist who does a lot of dystonia inejctions ,so I feel I'm in good hands. Initially, for a couple of years, I couldn't read, watch tv or go to a movie or drive - I also quit my job at a university (after 20 years) because I couldn't commute and cope with beb. I was almost at early-retirement age then (I'll be a `real' senior this June as I reach the grand old age of 65), so it wasn't as huge a deal as it would be for younger people. After about 4-5 years I was able to watch tv go to some movies and drive in limited, non-stressful, daylight conditions. The last few months I have been able to read large-print books and that is such a joy. I need eye rests everyday and lubricate my eyes 365 days a year and still struggle with dry eye conditions. I have a very dear friend who suffers from panic attacks and I now how debilitating that must be for you - now you have to deal with this other stuff. I hope you will keep your chin up, try and relieve any stress (easier said than done I know) and be as good to yourself as possible. Are you working? Do you have family? I'm married (2nd time around) and we have 4 grown up children between us (3 boys and a girl) and one grandchild, age 13 - wish we had more! Take care. June in Toronto |
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Posted by: Jean ® 05/05/2004, 23:27:04 |
Dear June, I posted questions to all on this bulletin board using the name, Neanie, and, I've changed to Jean. I was having problems reconnecting with the first name. I also have been having problems with my computer so please know that I appreciated your response but wasn't able to reply sooner.
Thanks so much, June, for being so upfront with me about your meige...Sounds like you have had a really rough time with it over the years. I'm happy that it has improved somewhat for you and that you are now retired! That's wonderful. Also appreciate your validation regarding anxiety/ panic disorder... many don't have a clue about it so it's refreshing to hear from someone who has an idea of what it entails... I was diagnosed with meige in January...I have episodes of uncontrollable eyelid spasms...usually there's a connection with being tired, sensitivity to light, and motion...mostly happens when driving early in a.m. I pull over, sleep for 15 minutes or so and that helps...I'm scared. My neuro opthalmologist has me taking desimprine and neuronton. My left eye droops and my right seems enlarged...though recently my right eye is either getting closer to normal or beginning to droop, too... It's late and I have to be up early in the a.m. so I'll say goodnight to you now. I hope we continue to correspond, and, thanks again to you and everyone who has reached out to me via the bulletin board. I will answer each message as soon as I can. Take good care, June. Jean (Neanie)  |
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Posted by: June in Toronto ® 04/12/2004, 05:35:20 |
I was very remiss in not advising you to check out the BEBRF main pages on BEB/Hemi-Facial and Meige Syndrome at the link below - its very informative. Also you can request printed information from the Foundation to hand out to doctors and friends - awareness is something we need more of Best wishes. June in Toronto Related link: http://www.blepharospasm.org |
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Posted by: Ann Doyle ® 04/12/2004, 13:02:26 |
There is a big difference between hemifacial spasm and blepharospasm. Hemifacial, has a cure in an operation. I think an EMG tells the difference. I could be wrong.
They act alike and both respond to Botox. Hemifacial spasm is the 7th cranial vein, sitting on a nerve. The cure is to open up the skull in the back of the head , behind the ear in a 3 inch by 1 inch opening and put a piece of teflon between the vein and the nerve. There are a few very "EXPERIENCED" neurosurgeons who do this . There is a web site for hemifacial spasm. I believe it is hfs-assc but first you have to go to Yahoo. Now for Meige. I started out with Hemi, had the operation, got Bleph and then Meige. In the four years I have had Meige it started out as an inconvenience. Four weeks before my Botox was due last time, the muscles cramped up for long periods of time and it did hurt . The Doctor and I discused the problem for a long time before he gave me the Botox . So far the cheeks have been fine but the eyes are bad. FRUSTRATION but glad it is me and not someone trying to get a job or keep a job or date or raise small children. I am older and retired and can go to bed and choose not to do anything. Ann Doyle |
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Posted by: Barbara ® 04/12/2004, 13:16:38 |
I have had Blephrospasm and meige for 10 years now. It cam on very quickly and intense. My Meigee was so terrible that I was ashamed to go out. I looked like an mental patient. I know exactly how you feel but I do have some encouraging words. OOnce the doctor got mt BEB under control which took a few years my meige settled down. I Sometimes feel that there is a direct link at least in my cast between the intensity of spasms of the eys and the muscle activity around the mouth. I do get botox in and around the mouth area but you really need a good doc because it does affect your facial apppearance. I did have to sacrifice my smile and have a droopy mouth instead the twisting and grimacing that I had before. Please be aptient this condition can take years and sometimes many doctors before you get the proper treatment. Be strong because you will get there and there are mnay of us on the BEB bulletin board who share your experiences. You will be alright. You have already heard from many of the most supportive people who have experienced your pain. Please check in your area and see if their is a Blephrospasm support group. |
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Posted by: Ann Doyle ® 04/14/2004, 12:41:52 |
I used to look like Popeye but now both lips are curled under and the Meige is very painful in the cheek area. Ann D |
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Posted by: Jean ® 05/05/2004, 23:39:43 |
Dear Ann, Thanks for responding to my message. I'm new to Meige so I don't know what to expect. My doctor told me that it is different for everyone. I know that to have Meige one's jaw is involved in some way. I do find myself "stretching" my jaw muscles on occassion. Does this make sense to you? I hope we continue to talk with one another, and, thanks again. Jean (Neanie) |
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Posted by: Shelley ® 05/06/2004, 19:03:25 |
Hi - I have Meige, too. We can talk if you would like. I am just a bit swamped right now, but will get back to you as soon as possible. I'm a teacher - end of school-year panic!
Shelley |
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Posted by: bigstella ® 04/12/2004, 20:42:52 |
Hi Jean! Do not discount the use of long-term meds possibly bringing on the BEB/Meige. I had symptoms in 1999, was not diagnosed until 2002 after 8 doctors and 3 brain scans. Turns out I have drug induced Tardive Dyskinesia, which has the same symtoms as BEB (droopiness, eye blinking and closure) I was on Compazine (anti-nausea drug) for 20 years!!! Prescribed by neurologist who did not know its side effects! There are many drugs besides the neuroleptics that MAY cause TD. I am now being treated with 25 units of Botox to each eye. Every 8-10 weeks. Works fairly well- not great. Still have trouble driving, reading, TV, movies walking etc etc. I am 51 years old and the thought of Botox for many more years is at best, daunting! Get help to get your insurance to pay for the Botox! Botox is supposed to be for medical treatment not cosmetic removal of wrinkles!! Good luck and keep trying- different dosages, different sites etc and stay off any meds that may have the side effect. Have your MD look up your Rx in the PDR. Again, good luck!! Margo
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Posted by: June in Toronto ® 04/13/2004, 06:23:58 |
I learn something all the time on this bb - I never realized Tardive Dyskinesia had the same symptoms as BEB. Are you happy with the 25 units of Botox that you get to each eye, Margot? I get 90 units total for both eyes and it works well for me - I get them every 3-5 months (last time it was 6 months). I wonder if you and your doctor have considered upping your dosage of Botox so that you might get longer/better relief (you talk about different dosages and sites in your post so I'm sure you have experimented)? I can watch tv and go to movies, walk (except in the cold winter winds when my eyes close up), drive some, and, after 9 years, can now read large-print books again which is wonderful. I think I've seen you post on the other boards. Take care. June in Toronto (beb/meige over 9 years) |
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Posted by: bigstella ® 04/14/2004, 08:11:00 |
Hi June! Hope you are doing well. Yes, I have had botox ranging from 10 units to 170 units!!! Boy, my eye was practically closed for 3 weeks after that much- way too much! It is just one big experiment, I think! My doctor has lots of experience and keeps telling me that I'm young enuf (51???) for it to go into remission. That would be the BEST!!! Otherwise, I'm managing and my family and friends have been extremely supportive. We did have to move, after 25 years in the same house, to a neighboring town. The stairs were too difficult for me to navigate. Now we live in a smaller condo in a renovated Victorian- it is quite beautiful and the we are sort-of empty nesters anyway- (our youngest is just finishing his Freshman yeat at UMichigan. Go Blue!!!) And I can walk or take public transportation- this is better than having to drive all the time. Anyway, thanks for asking about me. Margo Modified by bigstella at Thu, Apr 15, 2004, 22:09:32 |
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Posted by: June in Toronto ® 04/14/2004, 12:08:19 |
Hi Margo, I do hope your beb does go into remission - some others have experienced this, so why not you? I can't imagine 170 units of botox for beb - wow that's some dose! You have a turning-around smiley icon on your message - did you know that? I find anything like that terrible for my eyes - others do as well so I understand, and the moderator has suggested we don't use them on this bb (even on the Dystonia board as a lot of people have spasms of one kind or another because of them. I like the icons a lot, but my eyes don't - please don't be offended! June in Toronto |
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Posted by: Ann Doyle ® 04/14/2004, 12:52:46 |
June, what do you expect from someone who thinks blue is for Mich? This Ann is from Ky and for the KY Wildcats who usually win March Madness in basketball but my real love is The Fighting Irish of Notre Dame. Been a fan since 1937. I thought everyone was until I went to collage. What a rude awakening to find out there are some very mixed up people in this world. Ann Doyle |
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Posted by: bigstella ® 04/15/2004, 22:01:39 |
Ann, Speak to my son!!! First thing he did when he got into Univ of Michigan was get those football tickets! Cost us ANOTHER $300!!! We're from NY originally and have lived in Boston for 30 years. How do you think it goes in our house with my husband a Yankee fan and the kids Red Sox fans!!!! Now that's competition!!! BTW, June, sorry about that smiley face- I'm so used to putting one after my signature. Can't believe this bulletin board turns a typed colon and parentheses into a turning bright yellow smiley! I have tried edited and deleting it- it doesn't show up anymore on my edited post but it's still there from the original post! How do I get rid of it????? HELP!!! Thnaks, Margo |
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Posted by: bigstella ® 04/16/2004, 07:50:29 |
OK- think the smiley is finally GONE!!! Sorry to all who were affected. I will not post a smiley again- even though I am trying to get my "botoxed" face to smile!!!! Thanks! |
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Posted by: Ann Doyle ® 04/16/2004, 09:15:28 |
Instead of a smiley, give a big HUG (((((H))))) Ann Doyle |
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Posted by: APhair ® 04/14/2004, 15:00:08 |
Neanie, sorry to hear about your problems. As I understand it, Meige Syndrom is actually the combination of Blepharospasm along with a facial dystonia so I am assuming that you are having problems with your eyes as well as the dystonia. You should make sure that you contact the Blepharospasm Foundation (look atthe top of the page) and they will send you all kinds of information. There are various means of treatment including medications, botox and as a last resort, operations (for the Blepharospasm). You can get Botox in the neck and mouth area and medications can help. I take Neurontin and Klonopin (chlonazepam) and it seems to help quite a bit. I certainly know when I miss a dose. Anyway, goood luck and you will find a lot of usuefull info hear on the bulleting board...Alan |
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Posted by: Kathy in Atlanta ® 04/18/2004, 10:45:12 |
I think i agree with alan here in simplifying the definition of meige. Last injection period the meige occurred on only one side of my face and was the last thing to settle down. Luckily right now , atlanta weather is being very kind to my eyes with the lack of humidity and i am trying to enjoy an extended good period with my eyes, although it always makes me nervous towards the end. |
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Posted by: Amy ® 04/18/2004, 23:23:42 |
Dear Kathy,
I am in south Ga. and currently am using UAB in Birmingham but I really am considering a change. i was wondering if you might share with me the kind of dystonia you have and where you go for treatment. When all this first happened to me, I saw Dr. Delong at Emory but was displeased as I always ended up with a student. I have considered going back there and giving it another try. UAB's neurology dept is going through some major changes I do not like(they recruited drs. from Emory!!!). However, I really have thought about going back to Atlanta. Hope you don't mind sharing. Thanks a million,
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Posted by: Virginia in AL ® 04/19/2004, 10:48:24 |
Hi,
I saw that Dr. Claussen is going to head up the ALS clinic at UAB. Does that mean you are going to lose her as your doctor? |
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Posted by: Moderator-JB ® 04/15/2004, 00:13:05 |
Neanie, Most of all remember ... you are not alone! Small words but lots of good thoughts and people behind them. I have Meige as do many others on this Bulletin board. My computer is down for a bit so please use the below listed address for me. I'd love to hear about you.
Waiting to hear from you. Judy Blackman/57/Washington State
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Posted by: Steve-In-Tennessee ® 04/15/2004, 16:08:51 |
I HAVE HAD BLEPHAROSPASMS FOR 6 YEARS, IN FEB 2002 I WAS TOLD THAT I HAVE MEIGE SYNDROME. I ALSO HAD APRAXIA AND HAD SURGERY BY DR. ANDERSON IN UTAH, MY EYES ARE DOING WELL. THE MEIGE HAS KICKED IN BIG TIME. I HAVE ALSO BEEN TOLD THAT ALONG WITH MEIGE I HAVE LARYGENAL DYSTONIA WITH STRIDOR. SOME DAYS ARE REALLY ROUGH BECAUSE IT EFFECTS MY BREATHING AND MY SPEECH VERY BADLY. AS LONG AS I AM NOT TALKING I DO PRETTY GOOD UNLESS I AM HAVE BREATHING PROBLEMS AT THAT TIME. IT IS TOUGH BUT WE ARE TRYING TO FIND THE RIGHT COCKTAIL OF DRUGS TO IMPROVE IT AS MUCH AS POSSIBLE. RIGHT NOW WE ARE STILL NOT THERE. ALL WE CAN DO WITH DYSTONIA IS TO BE ABLE TO LIVE AS GOOD AS WE CAN WITH THE CARDS THAT WE HAVE BEEN DEALT. GOOD LUCK WITH YOU'RE PROBLEM I HOPE THAT IT DOES NOT GET ANY WORSE. |
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Posted by: Anita Croce ® 04/15/2004, 19:30:39 |
Welcome Neanie and I can relate to your concerns and feeling quite alone. I have blepharospasm/Meige's Syndrome and have had it since the early 1980's, finally diagnosed in 1985. I receive the Botox injections and have also tried Myobloc (botulinum toxin B).
First, I would recommend you contact BEBRF and have them send you an informative packet of material. Address is: BEBRF, PO Box 12468, Beaumont TX. 77726-2468 PH: is 409-832-0788. I'm wondering where you live and if you might be in my district since I will be having a support meeting on May 16th. If you could tell me where you live, I could put you in touch with your District Director and in turn the District Director could tell you where the closest support group is to you. I recommend you attending one and you will feel so much better because you truly will be with others that understand. Tardiff Dyskenia and Blepharospasm looks pretty much alike, although we are told that prescribed medication causes Tardiff Dyskenia (if I'm spelling this correctly). Recently, I had the opportunity to ask a very special doctor to describe the difference between the two problems and to mimick each of them and he could not give me a satisfactory answer. When certain medications are given to us, it could cause our problem to become worse. I recently wrote an article for the BEB Newsletter and some medications were mentioned at the end of the article. In this past newsletter that our Foundation sent out, they gave a list of other medications that could cause us problems when given. Many of us may go in for some other type of surgery and not be aware that some of these medications could even be used. I hope you will contact the Foundation soon and possibly they will send out these two latest newsletters to you. If you wish to contact me, I'm enclosing my email address. Anita Croce, North Central District Director, BEBRF
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Posted by: Neanie ® 04/15/2004, 23:16:13 |
To all of you who have responded to my original message, thanks so much! I will write each of you individually soon. Haven't been to the computer for a few days and have a lot of catching up to do. It's past midnight here and I have to be up by six a.m., so, 'talk' with you each soon, and, again, many thanks for your kind responses. Neanie |
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