Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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What is your advice with regards to an eye patch?

copperzincbear
copperzincbear
When my double vision got to the point where I couldn't read with two eyes, I started closing one eye or wearing a patch. Now I notice that when I open both eyes, my double vision is worse, but then gets significantly better if I leave my eyes open for a while. I'm wondering if I should be trying to keep both open for a time in order to avoid them getting used to going off in both directions? Another weird thing is that if I open them both and look in the mirror, I find that I can move both of them pretty well, but my good eye will go off to the side if I bring my wobbly eye to look straight forward, almost as if they are used to maintaining certain angles relative to each other. Is this another sign that I'm wearing the patch too much, because they seem to be getting used to not converging?

Thanks for everyone's help the past two weeks; I'm feeling much better now.
snowbeltfolkie
snowbeltfolkie
In the past, I have saved - using an eye patch?
For when I needed to drive -
- and I could not shake the double-vision.

Other than that, I TRIPLE-shade my eyes.
* Self-darkening eyeglasses.
* Covered by wraparound sunglasses.
(I use a polarized-version, but Curt reminded us: polarized can ''blank out'' some dash readouts.)
* Topped off - by a visored-cap, either baseball cap or sport-visor.

Most of the time? This triple-shading does the trick, year-round.
(We also have snow-glare, 4 to 5 months a year, where I live.)
- Ross
copperzincbear
copperzincbear
That's interesting, because when it was not so bad, shading seemed to make it somewhat better. I wonder how that works.
deleted_user
deleted_user
Copperzinc, I so get your pain. I had the same thoughts running through my head - how soon do my eyes get used to the patching and can I be making it worse? I eventually just used the patch for long stretches, but switched up which eye I would use every few hours. Also, I used enormous, dark, dorky sunglasses that fit over my regular glasses and shaded the tops and sides, and was much more comfortable that way. Russ is right - protect your eyes from the sun!

You'll be relieved to know that I had a treatment of IVIG, am on 60 mg of pred/day and 90 mg of mestinon every 4 hours, and my eyes are *perfect* right now (knock on wood). I started by being able to focus for longer and longer periods, especially at a distance. There's hope for you - don't fret too much about patching or not patching, just make sure both eyes get a chance to see occasionally.
deleted_user
deleted_user
I too am experiencing exactly what you are. My meds are the same as Binia but i still have bad double vision. I kind of think light factors into my eyelid drooping and I too avoid it when I can. I used the patch but found it little help so I stopped using it. My neuropthamoligist showed me how to put Scotch tape over one of the lenses of my glasses it works like a patch but nobody sees it but you (well on sunglasses they cant). That helps a bit so I am still using my eye opening it and tracking with it but not confusing my brain with the double vision. My brother is a physical therapist and with my doctors ok hes started doing ocular exercises. I'm not sure it is or isn't working since I just started but I'm willing to try it since he hes seen success with it in MG patients.
deleted_user
deleted_user
My double vision comes and goes with the Mestinon levels. I have found that if I tip my head way back and look through the bottom of my glasses, I can see normal single vision anytime. Of course that doesn't work with bifocals driving, so I went to zennioptical.com and ordered a cheap pair of single vision distance glasses to use most of the time. Works OK. If I see a mailbox or car coming, tilt my head way back and see them 3-D single vision, and then ignore the double vision when I look ahead--or take some more mestinon. I bought a series of new glasses (from a new prescription) from Zennioptical and have been pretty happy with $20-30 ones. Most of the frames nowadays are from China, this is the frames and lenses done there and shipped in 2 weeks. Satisfies my need to experiment and my thrifty nature.