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Struggling To Keep My Eyes Open

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Unread 04-08-2009, 04:05 PM   #1
bluesky
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Help!!! Am I the only one who has this problem? I was driving my kids to school this morning and I was having to fight to keep my eyes open. It wasn't a lid problem, it was a problem with the muscles controlling my eyes. They just wanted to roll up and I kept pulling them down and then sometimes I'd lose my "grip" and I'd get double vision and have to concentrate to pull out of that. Sometimes it would just slip away in an instant and my eyes would be closed again. I had too keep my eyes closed at the stoplights to try to rest them. The effort of trying to keep them open actually made me nauseous. The drive was agony and by the time I got home I just fell into bed and slept for 2 hours.

Has anyone ever had this problem before?!?
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Unread 04-08-2009, 04:44 PM   #2
korbi_doc
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Holy Crow! Bluesky....I've learned so much from this forum since I was dx last week, but when you said this, I thought you meant you were so tired you couldn't keep your eyes open....I'm so sorry you are having this problem, I can't conceive how difficult this must be......my MG is totally "limbs" so far, & I pray it doesn't get worse....wish I could help...but someone will come on I'm sure to assist you....keep your chin up....I hope they can help you, I'll keep you in my prayers....

Dottie
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Unread 04-08-2009, 09:17 PM   #3
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Usually when you're that bad, you shouldn't be driving! It's like driving drunk. No offense but it's dangerous. I won't drive when I'm that bad. I have gotten worse while I'm out running errands. I have things I do, like take an extra little dose of Mestinon, etc. but that's up to you and your neuro to work out.

If that does happen when you are out, turn on the air-conditioning in your car and put it on vent so it's blowing at your eyes/face. I think pulling over somewhere first for five minutes or so is a great idea!

When any muscle group decides not to work, you really have to keep an eye on all the others (like hands gripping the stearing wheel!). Sometimes muscles can get weak so slowly that you don't even notice it. It's more noticeable when they get weak quickly. When I had my crisis, I had been getting progressively weaker, slowly. When I went in to urgent care, the doctor said I couldn't even squeeze his fingers. I hadn't even noticed I had gotten that bad.

So if even one area of muscles are getting that bad, you need to put on the brakes (literally and figuratively) and do just what you did - rest or sleep!

Please be careful. And it may be worth a call to your neuro if you aren't doing better. I'm glad you made it home safely.

Annie

Last edited by AnnieB3; 04-08-2009 at 09:36 PM.
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Unread 04-08-2009, 09:57 PM   #4
erinhermes
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I had that problem for months! No one would believe me - not even my hubby - people just thought I was being dramatic......if you look in the rear view mirror after resting your eyes for a bit, you'll notice that one eye is waaaaaaaaaaaaaay off balance. Your eyes are literally rolling around in your head.

I had to stop drviving all together until I started pred - voila (!) problem solved!

You may want to rest your eyes by icing them down as well - that is what my neuro did to test me for MG...........

Sounds like you need some stronger meds pretty soon!

Hang in there!
Erin
Quote:
Originally Posted by bluesky View Post
Help!!! Am I the only one who has this problem? I was driving my kids to school this morning and I was having to fight to keep my eyes open. It wasn't a lid problem, it was a problem with the muscles controlling my eyes. They just wanted to roll up and I kept pulling them down and then sometimes I'd lose my "grip" and I'd get double vision and have to concentrate to pull out of that. Sometimes it would just slip away in an instant and my eyes would be closed again. I had too keep my eyes closed at the stoplights to try to rest them. The effort of trying to keep them open actually made me nauseous. The drive was agony and by the time I got home I just fell into bed and slept for 2 hours.

Has anyone ever had this problem before?!?
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Unread 04-08-2009, 10:44 PM   #5
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Annie, you're absolutely right. I had no business driving like that! I had never experience a problem that bad and I wasn't even thinking straight, I was trying so hard to keep my eyes working. Next time I'll just pull right over and call someone to pick me up. The air conditioning is a really good idea too.


Erin, thank you for telling me about your experience. I didn't know what to make of what happened this morning. I couldn't remember anyone describing this eye problem and I was so confused. Is this more evidence of mg? Or is this something else?

Anyway thank you both for telling me! I've been checking in all day, wanting to see what everyone thought. It's so good to be able to tap your mg wisdom!

Ally
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Unread 04-08-2009, 10:47 PM   #6
erinhermes
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It is totally MG! My neuro checks my eyes every time he sees me.......no doubt about it!

THe frustrating thing is that so few people HAVe what we have that they just don't get it - plus we don't always have the exact same symptoms........

Hang in there! We are all pulling for you!

Erin

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Annie, you're absolutely right. I had no business driving like that! I had never experience a problem that bad and I wasn't even thinking straight, I was trying so hard to keep my eyes working. Next time I'll just pull right over and call someone to pick me up. The air conditioning is a really good idea too.


Erin, thank you for telling me about your experience. I didn't know what to make of what happened this morning. I couldn't remember anyone describing this eye problem and I was so confused. Is this more evidence of mg? Or is this something else?

Anyway thank you both for telling me! I've been checking in all day, wanting to see what everyone thought. It's so good to be able to tap your mg wisdom!

Ally
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Unread 04-08-2009, 10:47 PM   #7
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Quote:
Originally Posted by korbi_doc View Post
Holy Crow! Bluesky....I've learned so much from this forum since I was dx last week, but when you said this, I thought you meant you were so tired you couldn't keep your eyes open....I'm so sorry you are having this problem, I can't conceive how difficult this must be......my MG is totally "limbs" so far, & I pray it doesn't get worse....wish I could help...but someone will come on I'm sure to assist you....keep your chin up....I hope they can help you, I'll keep you in my prayers....

Dottie
Thank you for your kind words, Dottie. This one really took me by surprise. It seems like every day gives a new symptom or a new twist on an old symptom.

I'm glad yours is limbs only. Thank goodness it sounds like you're getting great medical help and I'll bet they'll be able to stop yours in its tracks.

Ally
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Unread 04-08-2009, 10:55 PM   #8
bluesky
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Quote:
Originally Posted by erinhermes View Post
It is totally MG! My neuro checks my eyes every time he sees me.......no doubt about it!

THe frustrating thing is that so few people HAVe what we have that they just don't get it - plus we don't always have the exact same symptoms........

Hang in there! We are all pulling for you!

Erin
What I wouldn't give for a diagnosis!!!!! A positive antibody test, symptom after symptom. What more do they want? Sorry to vent but - aaaarrrrghhh!
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Unread 04-09-2009, 01:21 AM   #9
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I get a feeling like my eyes are shaking from side to side very quickly, a TOTALLY wierd feeling.
Thankfully it was happening when I visited my optometrist(not a stressfull situation in the least, he is gorgeous, both looking and in terms of being understaing and he did help diagnose me, unfortunatley he is married,and to a very nice lady so I guess thats ok!!)
When I asked him if he could see it, he said yes. I was glad It was not in my head. It usually happens when I'm very tired, and rights itself after I've rested
take care
Kate
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Unread 04-09-2009, 12:49 PM   #10
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Annie, Great advice all around!
Ally, you'll have to be very careful if symptoms are sneaking up on you like that. I kept ignoring those sneaky signs and then dropped to the floor, conscious but completely unresponsive. Do you have a neighbor that can drive your children until you get controlled a little better?
My MG is generalized and usually my eyes are one of the last muscle groups to get involved to a point that is noticeable. My lids almost never droop but the eyes themselves? The jiggling/jerking side to side, a pulling sensation with kaleidascope vision, the normal double vision, and a just worn out-can't seem to focus for longer than 10 seconds.

Kate - what a double edged sword! Got a gorgeous guy right there in your face and can't focus on him? But to have Gorgeous be in the position of professionally verifying your symptom. Why couldn't it have been part way through so you could have the best of both worlds!

Everyone - take CARE!
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