Twitchy Eyes
 

For those of you who have eye troubles - what were your first signs? I've had some muscle twitching occasionally in the past. But the last few days it has been really frequent and irritating.

No double vision - but sometimes blurry for a few seconds following what feels like deep muscle spasms. Rubbing doesn't help -- sometimes it feels like my eyes can't get 'back to center' when I open them up after a good rub.

I've tried to peg it when my last Mesty was but there is no relationship there.

I've even tried to see the twitching in the mirror and can't. For something that feels so dramatic on the inside - - there's nothing on the outside!!

Thoughts anyone?
Thanks,
Sue

Hey Sue!
 

Hello sweetie! Actually my eyes were the first to go! What you are saying sounds so familiar.:(

I started having terrible headaches after a trip to Belize and my eyes felt "fuzzy" for a long time. I tried to explain to my family that there were times when I couldn't even see but no one believed me until they started to roll around in my head - people could "SEE" that!

I have learned that a cool compress helps a lot. I keep one handy in the freezer for my bad days....

Other than that, how are you? Are you feeling better? I've missed all of you so much!

Love,
Erin:hug:

Hey Erin!

Glad to have you feeling well enough to post lately! Overall I've been feeling tired - thought it might be that I'm fighting a sinus infection. In fact, I was hoping to pawn off the 'crazy eyes' to that!! But, nothing has developed over that last week, so I'm stuck with hoping the eye thing isn't the MG!! (I know everyone can understand my strange logic here...lol)

Thanks for the info - - I'll just have to wait and see, no sense looking for trouble ahead of time!!

What about you dearie!! When do you go to Mayo Arizona? You have been through so much in the last year alone - I don't know how you and your family cope. But I do admire you for handling it all without bitterness or hopelessness. Something really good has got to be waiting for you in 2010!!

Sue

Suev,

About 8-months before my speech was affected, I'd get twitching in my left lower eyelid constantly...It lasted for about a month and a half...I'd also get blurring, or ghosting trails of images when I'd turn my head really quickly...One time, I woke up and tried to look around and it caused a lot of pain (like a bad cramp in my eye) and felt like my eyes were sorta stuck...Way before that, I'd occassionally have mild DV when reading late at night, and I'd have to close my right eye tightly while reading...I just thought that I needed glasses...

Anyway, that's about the extent of my eye troubles...I now have trouble closing them all the way when I feel very weak...

Suev, do you mainly have limb weakness?

Hi Nick,

Yep - mostly right arm and legs. But when dx'd, my neuro pointed out my ptosis and weak eyelids. Said it wasn't obvious because both eyes were slits!! not just one.

It's only been in that last few months that I have had some hit and miss incidences of lazy swallowing or minor eye twitch. Now the eye thing is not hit and miss...it's irritating. I don't have any dv or blurriness, but there are times after I take Mestinon it feels like I have just cleaned my glasses!!

I have a check up in March. If things change too much more I'll call in before then. Maybe I just need more Mestinon.

Thanks,
Sue

Sue,

I think we all get this, with or without the mestinon. Sadly I don't know of anything to relieve it. Maybe as Erin said, use cool compresses.

I hope it stops and you get to feeling better.

Yes, my eyes get twitchy a lot, but as you said it's not noticeable when you look in a mirror. For me, fluorescent lights, bright sunlight, extreme cold and heat, and too much computer time seem to be triggers. The lights in grocery stores are really bad for me.

Oh yeah....Bright lights kill me too...Especially fluorescent, and yes, the grocery store is brutal...Sunlight pulls my eyelids down like a magnet.

Do any of you get excessive tearing? The wind blows even the tiniest bit, and my eyes water like mad....

Suev, it's weird that it happens after you take the mestinon...Maybe the mestinon's doing it...I think that a working muscle, or one not very affected by the MG or affected at all, for that matter, might be negatively affected by the mestinon...

I don't normally have a lot of ocular sx--I have the generalized type of MG, but sometimes my eyes are kind of weird. Sometimes they feel like they are going to cross, and they kind of ache and burn when I'm reading. I find myself blinking hard sometimes or having to just close my eyes sometimes. And if lights are very bright, as others have talked about, I have a lot of problems--sometimes my eyes just want to close in bright lights, but even before I had MG my eyes were sensitive to light (I have blue eyes), it's just that they are somewhat worse now.

blurred vision
 

the first MG symptoms I had (in retrospect, as at that time I did not even think of MG, nor did the eye doc. I consulted) was blurring of my vision when I tried to look at the microscope.
I was quite sure that I had some occlussion of one of my blood vessels and was extremely relieved to know that I did not.

initially I only had those obscure symptoms, when I looked at the microscope. and it took me quite a while to understand, that the reason for that was not "psychological" but due to the bright light!

after trying, quite unsuccessfuly (with the aid of a psychologist) to "figure out" why I became "afraid" to see my patient's samples and reach the proper diagnosis, to the extent that I "developed" somatic symptoms, I realized that I can "cure" my fear, by decreasing the brightness of the light.

by the way, it was eventually found out (by an excellent neuro-ophtalmologist) that my illness affects also the muscles of accomodation ( a rare, but described involvent of MG), and that was initially more pronounced leading to more blurred vision, and less obvious diplopia or ptosis (although both were present, but to a much lesser extent).

alice

I've actually never seen an eye doctor. I should prolly get on that...

*randomly separated some paragraphs for people with DV.*

Alice,

Isn't it amazing the doubts we can have about our own bodies? I've had hand weakness for years and years, and knew on some level that it wasn't normal, but also knew that it was so strange, and so hard to describe at times, that I was sure I wouldn't be believed about it...

I remember that the sensitivity to light started around the same time as the weak hands. I remember early mornings, walking to the bus stop, and being embarassed because my eyes were going completely deranged from the sunlight...I'd get on the bus, with my head down, hoping no one would notice that my eyelid and eyeball were like totally not behaving...

It would always clear up, though, sooner than later, but I felt tired at this time too, fatigued...It was also around this time that people around me would complain because I'd always chew with my mouth open...I'd try to chew with my mouth closed, but I seriously could not...It seemed like there wasn't enough space in my mouth or something...I felt 'uncouthe,' but I'd explain

that for some reason, it was just impossible for me to do it...I tried to limit public eating as much as possible...Would tend to spill food on my shirt...I really internalized this...I didn't think of this as a disability, I just have always felt that I was very odd, or 'special' but not in such a good way...lol

I think that in many ways, this is why I'm so fascinated/semi-obsessed with this illness at this point in my life (although I hope to close this chapter soon as I'm ready to). Not just because my current sx have interfered with my life in such a big way, but because since finally finding out what the heck was wrong, I've been able to say to myself, "it's not your fault- you're not insane.

You're not a loser or a weirdo. You're sick and you know that now, and you're going to be okay because of that." I know that might sound kinda lame, or kinda tv-movieish or cheesy, but my self-esteem has been so affected by being ill for so long and blaming it on some innate imperfection, that finally

having a reason has freed me and allowed me to trust me again, trust my instincts, listen to my body, respect my body. It has been plaguing me for so many years, so insidiously, but I've identified it, and it can't wreak havoc without a face anymore.

Sorry that I hijacked this thread.:o

Nicky,

I can tell you as a physician, that many times people that become ill, become insecure about themselves and are not sure what is going on.

our body and mind are non-seperable. it is only in the modern world that this seperation exists. we try to seperate between what is wrong with our body to what is wrong with our soul, but in fact we are one organism, and when something goes wrong, it leads to an inevitalbe cascade of events, and as a first step of trying to recover/ correct it, we try to make some sense of it.

people that are ill, go to their physician, because they want him/her to help them understand what is wrong and find the way to correct it, without causing more damage.

one of my criticism against many neurologists (I will not say all), is that they manage to do the exact opposite, they make you more confused and more insecure. it was my neuorlogist (at that time) that clearly told me (without any doubt) that my occular symptoms are not myasthenic, and sent me searching for the psychological reason for them.

in stead of helping me to put some order in what was going on, help me regain my trust in myself and my abilities, help me find ways to overcome this dissability, he made me much more confused and insecure. he made me doubt my clinical skills, he made me ask myself why I was having emotional problems in dealing with my patient's diagnoses. why couldn't I see their bone marrow, why did I become so short of breath when going to their room in the hospital, that I could hardly talk with them or make any reasoable clinical decissions?

fortunatley, I found an excellent psychologist, who told me after a few sessions, that I would be the last one she would think would have such problems. but, even this did not help me figure out the source of the problem.
I was not sure who was right- the neuorlogist who clearly told me that my very mild MG, could not explain any of my symptoms, or the psychologists/ psychiatrists and even pulmonologists that thought I had a serious illness.

only a few years later, when I had some "theoretical" E-mail discussions with him (and with a few more experts), did I realize that this neuorlogist thought so, because I had a normal SFEMG, and in his (idiotic) oppinion, you can't have significant myasthenic weakness with a normal SFEMG.

just like another world leading expert, thought I was in "remission" because my SFEMG was completely normal, at the time that I had symptoms consistent with a myasthenic crisis.

in any case, it is completely normal not to understand what is happening to our body initially, and it is completley normal to search for the right explanation, and try to correct it, or adjust to it, in the best possible way that we can.

sorry that I continued with the "hijack", but I guess we all start a topic and it ends up being connected to many other things, that may have not been the initial reason to discuss it.

alice

hi
 

I get the twitchy eye thing too! Its usually my left upper lid and it is very annoying!:confused:

For me its a warning sign that Im going to develop either ptosis (which for me is usually my right eye and eyebrow, with sometimes the left eye joining in for fun!) or that Im going to have a bout of nystagmus - which means bed for me until it settles as it me makes me feel violently sick.

What confuses me though is why its my left eye that twitches yet the right eye that shuts? But then what part of MG actually makes sense?;)

As to Drs making you feel confused and scared.........there isn't enough room in this forum for what I would like to say! And most of that would have to be heavily censored due to the language involved!:D

Love
Rach:grouphug:

Rach -

I'm so glad you said that about the left / right eye thing - - - cuz that's exactly what's going on with me right now! And it makes NO sense!!!

To all -
Thx for responses. I tried shortening the time between doses by 1 hour (keeping dose constant), and it has made a huge difference for the better. Will experiment a bit with neuro's blessing to see if I just need to up the dosage and return to 4 hours - or keep dosage and move to 3 hour intervals.

Nicky / Alice
Your observations are so on target. Just like our MG - who knows where our threads will 'morph'. We mg'ers are nothing if not creative and flexible!!! lol

I still keep thinking I can 'will' myself to conquer this -- and it's wearig me out!! So I especially appreciated your postings.

Sue

Exactly how my double vision started, in fact that is how my MG started...

Now that I have had MG for about 9 months (I think?) when my eyes feel this way it is because either:
1- Too much Mestinon (usual cause)
2- Not enough Mestinon
3- Too much stress or activity

When my eyes feel twitchy from too much Mestinon, it usually starts about 20 minutes after I take Mestinon and lasts for at least an hour and then slowly fades.

If stress causes my eyes to twitch it happens immediately as I experience stress. I have no tolerance for stressful situations, even small amounts of stress. If I don't relax within about 5 minutes, my MG symptoms progress into extreme weakness which is scary.

Twitchy eyes seem to be my first sign that I need to take some kind of action so I don't get worse symptoms.

I hope your eyes are feeling better.

hey, Nicknerd; i recently found out that electronically anti flicker glasses can be made. they're based on ferroelectic liquid cristals and cyclically counter flicker from discharge tubes...

take care.