twitchy eyelids
 

Hi Everyone!
I have a question concerning the twitchy eyelid effect I am having. If I blink my eyes or sneeze my eyelids will twitch for about a half hour after, severely. Is this a side effect? I am on Mestinon 60mg four times a day. Also, did anyone experience side effects when going off of Immuron? My dr. is going to take me off of it at next visit. Thanks!:cool:

I get the twitchy - actually spastic! - eyelid from time to time. It seems to come and go of its own accord in chunks of time (like fine for a month or more...then everyday for a while).

It does seem to happen when I'm overtired. But I've noticed no connection with medications or my activities. Drives me crazy tho!!

Oh boy! when I went off Imuran after 12 months I was a new man. My stomach issues cleared up and my appitite returned. I had to taper off but saw immediate results. My Dr apologized saying he knew the Imuran was making me feel really bad but he wanted to try the full 12 months. I lost 35 pounds while on Imuran. I am now on Cellcept, Mestinon and Prednisone. The first 4 weeks I felt like I could fly. Now I feel ok but have gone back to my weak state. It may be time for my IVIG, usually every 2 months.
Mike

Blepharospasm
 

I don't know, I'm not a doctor, but it is possible you could have blepharospasm. Usually, this presents in older women in conjunction with dry eye, but there are some doctors who feel that eyelid muscle problems in conditions such as Myasthenia Gravis may be an alternate trigger for this condition. This link offers an opinion on this, if you scroll down through the comments to the one by Roger Kurlan.

http://www.neurology.org/content/77/7/631/reply

Many people get dry eye, but only a small percentage will develop blepharospasm. I imagine it is the same with eyelid weakness; a small percentage of patients with ptosis, double vision, etc. may also develop blepharospasm. Unfortunately, the treatment of choice for blepharospasm is Botox injections, which are contraindicated in MG.

For more information on blepharospasm, visit the Benign Essential Blepharospasm Research Foundation at www.blepharospasm.org

Tatia

Something similar happens to me if I take too much Mestinon (which for me is a full 60mg pill). My eyes and my eyebrows get twitchy. It is a possible side effect, my neuro confirmed.

Thank you all so much for your input!! I'm so glad I found this forum and all of you! We can all help each other and make this MG journey a little easier to travel. Blessings!

More on MG and blepharospasm
 

Just in case someone else like me comes along and searches the forum for blepharospasm:


http://www.neurology.org/content/58/1/150.2.extract

In rare cases, MG can mimic blepharospasm, leading to misdiagnosis and improper treatment.

I did after being given the diagnosis of blepharospasm for my diplopia. The links are much appreciated.

MG can cause dry eyes because the lids don't always close properly. If dry eyes can cause your eyes to twitch, that could be the connection. I occasionally have the twitchy eyes too. It is worse in my right eye which is also the one that is most severely effected by MG.

I don't yet have a diagnosis of MG, though everything keep pointing that way in my opinion. And no specialist has come up with an alternative diagnosis.

I went to the Neuro-ophthalmologist, because of my Double Vision. Too much blinking, which she concluded was blepharospasm, was her diagnosis, and Botox the suggested treatment. I had never even heard of blepharospasm, and I didn't know that I was blinking too much.

How would you know if you had dry eyes?

JJ, You can have a Schirmer's test to see if your eyes are dry. It's pretty standard here in the US.

http://www.nlm.nih.gov/medlineplus/e...cle/003501.htm

Eyes can also be dry from not enough acetylcholine, just as too much can cause tearing.

Twitching eyelids can be from MG, a nerve issue, electrolyte imbalance, eyestrain, and a lot of other causes.

Annie

It is interesting. I had never heard of Blepharospasm before this consultation. Naturally I have researched it since. Normal level of blinking is 10-20 per minute. Mine is up around 60 per minute, so as far as that goes the specialist is correct.

However I can find NO article anywhere that states that blinking can cause diplopia. Indeed all the comments are that the treatments for blepharospasm cause diplopia, ptosis etc. And the only treatment seems to be Botox every 2 months until it stops working, then nothing.

On the other hand I did find several articles about MG mimicking blepharospasm, and since I have symptoms of fatigable muscles, in arms and legs, I am still not convinced.

I think the chances of having 2 "rare" conditions surfacing at the same time, whilst possible, is unlikely. Especially when 1 of those rare conditions can adequately explain all the symptoms.

DO NOT let your doctor treat you with Botox until Myasthenia has been definitively ruled out!!!!!

Botox is contraindicated for people with MG, and can cause real harm.

If your initial tests come back negative for MG - as is the case for 10-20% of people with MG - ask your doctor to let you do a Mestinon trial.
About the only people who can tolerate even a small amount of Mestinon are people with MG; if you can take it without getting violently ill, chances are that you have MG.

Did your neuro-opthamologist do an ice pack test on your eyes? That seems to be the test that "catches" a majority of MG cases which present with ocular symptoms.

Totally agree with Teresa - botox and MG = an opportunity visit the ER. If in doubt, read the contraindications on Botox label. It has a warning (I think it might even be a black box warning!)

Teresa, Suev, thanks to you both. That was my feeling, butI am interested in a couple of things that you said Teresa, not sure if you can elaborate on them.

Is this true. If so I was not aware of it. My GP has so far refused to do a Mestinon trial, even though I have point blank asked for it.

No they didn't. It hadn't occurred to me that the ice pack test might be useful. I had assumed that it only worked for Droopy eye. Until this appointment I hadn't realised that I had blinking eyelids, so hadn't expected ice to help diplopia. Now I will try it and see if if slows the blinking rate.

Julie,

Where are you located? Do you pay for your own insurance?
If you are in the US and you (or your employer) pays for your insurance, you are WELL within your rights to request a Mestinon trial.

If your GP doesn't want to do one, ask him/her to give you detailed reasons for not doing it, and have them put it in writing.

People forget that doctors provide a service - one that is specialized, yes, but there are plenty of doctors out there - and that the patient, as the CUSTOMER, is still free to take their business (and their dollars) elsewhere.

For those of us who tested negative for MG, but who had the symptoms of it, a Mestinon trial was the ONLY way that we got diagnosed. With MG, an early diagnosis is crucial - the earlier the patient can start on medications to (hopefully) slow the effects of the disease, the better chance there is that the disease can be stabilized.

Also, there are several different medications - including many anesthetics - which are absolutely contraindicated for people with MG. If a person knows that they have MG, they can be proactive with their medical care - especially if they need to have surgery (and most doctors will not perform elective surgery on a patient with MG).

If you suspect you have MG, let your doctor know that you want a Mestinon trial, and if he/she doesn't let you do it, tell them in no uncertain terms that they could be held liable if it is later found that you DO have MG and they refused to do everything they could to absolutely rule it out.

Trust me, if you don't have MG, it will only take one or two tablets of Mestinon before YOU decide not to take any more of them - you'll feel pretty awful for a couple of hours!

Be sure if you do a Mestinon trial that you start out with 1/2 a pill (30 mg) for the first "test"; my neuro had me do 30 mg, once a day for three days (and suggested I take it in the evening when my muscles were more fatigued), then if I could tolerate that to bump it up to 60 mg a day for 3 days, then 90 mg a day for 3 days, then 120 mg a day for 3 days.

If at any time during the trial I started feeling ill, I was advised to drop back down to the dosage I could tolerate.

Once a patient figures out what dosage they can tolerate, then they can set about to determine what time interval works best for them. Mestinon is one of those medications where more is definitely NOT better in terms of dosage; rather most MGers find that if they need "more" (and you'll know it when that happens), they can get it by shortening the time between doses.

I was dx'd by clinical observation and strength testing. MG was suspected.

So they gave me 60mg Mestinon and a PA waited 30 min in the exam room monitoring my eyelids and corners of mouth every 5 min.

Finally neuro came back in - repeated the observations (mostly eyelids and smile), then repeated the strength tests......and voila! I had a dx.

Only then did they order the blood work and the SFEMG - both of which showed nothing!

My neuro also said that someone without MG can not handle Mestinon (unless they have had a recent and serious exposure to insecticide or nerve gas).

I had eye twitches like that, until I started taking magnesium and b12.

I believe Magnesium is not good for MG.

From here.