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New to Meige's syndrome... looking for help
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Posted by: cklw
11/16/2003, 11:45:14


Hi! Well, I'm relatively new to Meige's syndrome. I need to know if what's happening to me is "normal" for Meige's... Everything has happened really quickly with me. Developed OMD (bam, it just hit!) on September... it was really severe and sudden. 3 weeks later it involved my eye... Found doc. that administered botox, and it seems to have helped (still have spasms but not violent like they were). 5 days later my voice went! I mean, it just went. I thought I could only whisper, and discovered I could sing... but didn't know I could get out this awful sounding voice I have since developed.

Some moments (hours sometimes) I talk just fine. Other times I can talk, but have to do it very low and quiet. I also have bad pain in my neck and shoulder. My doctor said he's never seen dystonia progress this quickly and thinks maybe this is psychological! I know it's not though... I'm see a psychiatrist and he is sure it's not too!

Anyway, this morning I woke up and my lips are FAT! I'm also having strange (stranger than normal... like my whole scalp is moving!) I also get shooting headache pain behind the affected eye. I also get shoot pain in my ears. And, I have a strange tingle/burn on the left side of my head... very localized and consistent.

Is this normal? I can't get an appointment with the new neurologist until Dec. 18... it seems so far away. Sorry this post is so long, but I really want to know about this. I have been to many docs that don't know about this and they say it's psychiatric of course... Luckily I have a great psychiatrist that is on my side. But I still take it personally when they tell me its' in my head!

Thanks for listening! CKLW




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Re: New to Meige's syndrome... looking for help
Re: New to Meige's syndrome... looking for help -- cklw Top of thread Archive
Posted by: June in Toronto
11/16/2003, 13:38:22


Hi CKLW, welcome to the bulletin board - I'm sorry you are having so very many problems - I, too doubt that its psychological. I have beb/meige and only get botox injections for the beb. Others here have more serious meige syndrome and get botox injections to try and help that, perhaps they will post back to you. I have never heard of what you are experiencing being attributed to meige though. It certainly sounds like you have a number of focal dystonias. Spasmodic Dysponia causes the voice to come and go (check the SD bb for that as many others there have reported the `coming and going' of their voices). Neither have I heard of the neck and shoulders being affected with meige nor the shooting pains you describe - but then this is really a crazy disease and affects us all differently. I pray you get some help with the new neurologist in December - it must seem like an eternity to wait that long though. God Bless you.

June in Toronto




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Re: New to Meige's syndrome... looking for help
Re: Re: New to Meige's syndrome... looking for help -- June in Toronto Top of thread Archive
Posted by: cklw
11/16/2003, 14:53:07


June in Toronto - Thanks for your reply. From what I've read about Meige's it can sometimes affect the vocal cords and shoulder. at this time I'm not sure what I have any more. It seems to keep on going.

Do you ever experience this? It seems like everytime I have a new symptom "break out" I am all tired and my joints ache the day (or hours) before it... and then blam! a new sypmtom appears (that's what happened before my eye got involved and then again before my vocal cords and then again yesterday and now my mouth looks like a collagen experiment gone bad!) In fact the day before anything happened, I went for a walk and couldn't make it a mile... my joints just ached and I just thought I was so totally out of shape (of course I was walking steadily for the weeks preceeding this!)...

I hate when they tell me it's in my head... cause I really know it's not. And again, from what I've read, that's what many are told about this. My psychiatrist said I'm just not fitting the "mold" and so they don't know what to do with me.

What a frustration! Thanks for caring! CKLW




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Re:help
Re: Re: New to Meige's syndrome... looking for help -- cklw Top of thread Archive
Posted by: Moderator-JB
11/16/2003, 16:08:28


Hmmmmmmm ..... are you taking any type of new medications? Any?

Mine started as a reaction to an antibiotic, Biaxin.... and yes, it did progress, though over a period of time.

A movement disorder specialist seems in order. What area do you live in?

Judy
Moderator




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Re: Re:help
Re: Re:help -- Moderator-JB Top of thread Archive
Posted by: cklw
11/17/2003, 11:35:24


Judy, I'm in metro detroit. I have an appointment set up with Dr. Trosch, he's supposed to be the top movement specialist around. I looked at his web site and he has a lot of information about dystonia. I hope he's my answer...

I was taking Wellbutrin since March before this whole thing started. Doctors don't THINK it's a reaction to that, but who knows. Now I'm taking Zoloft and Nueronton... although I don't think the Neuronton is doing anything for me... My psychiatrist is the one who thought I should try it, because no one was doing anything to help me... and then the violent spasms I was having stopped... now I just think that was a coincidence...

The neurologist I saw that diagnosed Meige's was going to put me on Artane, and then decided that the botox worked for me and the rest of it was psychological and told me the Artane would hurt me if I took it... so, I haven't tried that.

Just glad to have the support from others... Thanks CK




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Re: help
Re: Re: Re:help -- cklw Top of thread Archive
Posted by: Shirley Barr in New Mexico
11/18/2003, 17:15:20


Hi CK,
Sorry to hear that you are having problems with Meige symptoms. I have to admit that my first reaction is what Judy alluded to and that you might be having a reaction to your medication. Antidepressants are well known to cause temporary or permanent symptoms of dystonia. In my own humble opinion it would be worth tapering off and stopping the Wellbutrin and or Zoloft to see if your symptoms improved or went away. That would be the only way to know. You do relate that your symptoms started while you were on the Wellbutrin. Even if your doctors say that they don't think that is the culprit, I've taken antidepressants in the past and I know that they can cause all kinds of weird side-effects. I'm not saying to do this without your doctor's knowledge or guidance. It is something to think about.
I'm also not making light of the fact that many people do benefit greatly from antidepressants and many times our symptoms of BEB or other forms of dystonia are helped by them. A big light bulb should go off though when dystonia symptoms start or are worsened when taking ANY medication.
Just my own thoughts...

Shirley in New Mexico with BEB/Meige/Cervical Dystonia and.....




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Re: help
Re: Re: help -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Ann Doyle
11/19/2003, 16:10:40


By tapering off--is a lot longer process than I thought. I was taking Xanax and told to taper off so I took 4 one day, 3 the next , 2 the next and then 1 and had a seizure. Nurse kept asking my name and I thought her memory was worse than mine. She just wanted to check my mental state.
My Dr said to cut off 1/2 of the pill every fourty day. Big difference.
I waited until after my Botox for my eye exam--works better if your eyes are open==I couldn't line up the two rectangular boxes. I have been going to him for 30 years. He said he had that happen only once before and told the woman to get an MRI and she had a brain tumor but he knew of my condition and was pretty sure that accounted for it. My one eye was looking up 15 degrees higher than the other. No wonder I can't read. Ann Doyle



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Re: help/tapering off meds!!
Re: Re: help -- Ann Doyle Top of thread Archive
Posted by: Kathy in Atlanta
11/22/2003, 15:50:32


Ann and all: SLOWLY tapering off meds is extremely important, perhaps just currently given the education of those who have abruptly gotten off of them and the ensuing problems. One can have heart attacks, convulsions, seizures, etc, if this is done too fast. Common knowledge now.



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Re: Re:help
Re: Re: Re:help -- cklw Top of thread Archive
Posted by: Debbie
11/19/2003, 19:51:12


Dear CK,
I just read your post and felt compelled to tell you that I am 90% sure that my blepharospasming (is that a word?!) was triggered by Paxil, an antidepressant, which my doctor later admitted can cause muscle spasm. I have since tapered off the Paxil very gradually, under my doctor's supervision (apparently the withdrawal symptoms from Paxil can be horrific) and my eyes have been gradually improving. They are not perfect, but the improvement is quite noticeable.

I have no scientific evidence, and maybe I would have BEB anyway, but I just have this "feeling" that it was the Paxil. I'm mentioning this since you said you were taking Zoloft, which is in the same family (SSRI's) of antidepressants.

Best of luck,
Debbie




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Re: Re:help
Re: Re: Re:help -- Debbie Top of thread Archive
Posted by: Ann Doyle
11/22/2003, 07:49:28


When in doubt, Taper off all drugs slowly. Ann who is not a DR but plays one on the bb. Ann Doyle



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Re: Re:help
Re: Re:help -- Moderator-JB Top of thread Archive
Posted by: Ann Doyle
11/19/2003, 16:12:49


Hi Judy, I am here to bug you like I promised last night. Bug, Bug, Bug. Ann Doyle



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Re: Re:help
Re: Re: Re:help -- Ann Doyle Top of thread Archive
Posted by: Moderator-JB
11/20/2003, 02:59:53


Oooooooh .... I'm so afraid!!!

Judy




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Re: New to Meige's syndrome... looking for help
Re: Re: New to Meige's syndrome... looking for help -- cklw Top of thread Archive
Posted by: June in Toronto
11/17/2003, 07:31:58


I really don't know what to suggest and why you are gtting these new symptoms with the aching and tiredness just before - Judy may be on to something when she asks what medication you are on. Try (easier said than done) not let them get you down when they say `its all in your head', you know it isn't. Laugh (if you can) at those comments and say something like "well it feels like its in my shoulders, neck, etc. etc". With this disease (and any in fact) we have to alleviate stress as much as possible as it will aggrevate the problems - laughter is the best medicine. I don't mean to trivilize your problem. Keep talking and we'll keep trying to help you.

June in Toronto




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Re: New to Meige's syndrome... looking for help
Re: Re: New to Meige's syndrome... looking for help -- June in Toronto Top of thread Archive
Posted by: cklw
11/17/2003, 11:38:49


I have been laughing and laughing at all the the strange things happening to me.. in fact sometimes my kids watch the strange movements of my lips and we just crack up (especially when they pucker REALLY hard)... Sometimes my tongue folds backwards, now that's a hoot too! And when my nose starts to twitch like a bunny rabbit, the only way I can stop it is to stick my finger up my nostril. Really, it is pretty funny!

I just can't take it so personally when they tell me it's in my head... I guess it just makes me feel a little crazy!

Thanks... CKLW




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Comment for the uninformed ...
Re: Re: New to Meige's syndrome... looking for help -- cklw Top of thread Archive
Posted by: Moderator-JB
11/17/2003, 13:21:41


My comeback, if they persue their path of ignorance, is 'Yes, it IS all in my head, the Basal Ganglia to be exact (helps to point to the base of the scull, back of neck).'

That is the area thought to be involved.

Judy (who backhands a little too quickly at times!)



Modified by Moderator-JB at Mon, Nov 17, 2003, 13:25:15

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Re: New to Meige's syndrome... looking for help
Re: New to Meige's syndrome... looking for help -- cklw Top of thread Archive
Posted by: Lynn Yarbrough
11/17/2003, 11:05:31


I'm no expert on pain and neurology, but what you have relates to what I have heard about fibromyalgia -- have you been tested for this condition? Just a thought.

I hope you begin to feel better soon -- these conditions can be frustrating, I know from experience.

--- Lynn




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Re: New to Meige's syndrome... looking for help
Re: Re: New to Meige's syndrome... looking for help -- Lynn Yarbrough Top of thread Archive
Posted by: Ann Doyle
11/18/2003, 10:10:00


I agree with Judy , to use technical terms like Basal Ganglia. I was told for two years that it was all in my head and given tranquilizers. I didn't know the name of what I had. Once I found the name , I got on the computer and studied and printed out stuff to show the DR. Then they start treating me with more respect.
It sounds like you found a good DR.
I have some of your symptoms. Congratulations on the fat lips. Some people have to pay for collagin injections every three months to get them. Mine is just the opposite, My upper lip goes under my top teeth which prevents me from eating anything like a sandwich or apple, Have to eat with a fork or spoon. I snort carrots out my nose on special occassions. We would make a fine pair. My tongue goes down instead of out I get shots on my cheek so I don't look like Popeye. Also on my jaw because it gets sore from being tense and shots on my neck for my tongue. I take it for granted that people know I get them around my eyes because I like to see.
The eye part is called Benign (it won't kill you), Essential (we don't know what causes it) Blepharospasm. Now you can tack on with Meige syndrome. A man by the name of Meige started calling it that when it went below the eyes. A lot of people just have Blepharospasm. Each time it goes farther, you get to tack on another name.
I hope you have a lot of success with your DR. Ann Doyle



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Re: New to Meige's syndrome..swollen lips
Re: New to Meige's syndrome... looking for help -- cklw Top of thread Archive
Posted by: Kathy in Atlanta
11/20/2003, 06:58:33


The swollen lips you describe sound like sort of allergic reaction to me! have you taken any new medication, been bitten by an insect or been exposed to chemicals ??



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