a woman closes the blinds due to vision issues myasthenia gravis

Managing Vision Issues

For some reason, double vision is the hardest symptom for me to manage. I say double-vision, but for me it’s more like an intoxicated vision after drinking. It’s been quite awhile since that’s happened, but the best way to describe it is that I feel cross-eyed. However, I don’t necessarily see 2 of everything. I can’t really focus on anything at all.

This particular symptom also doesn’t respond to Mestinon or the smaller doses of prednisone I’m on. I’m not quite sure why that it is, however SubQ and IVIG were able to keep it at bay for a while. Since I’m not currently on those medications, my vision has been a hot mess lately.

Learning to manage

True to form, it gets worse later in the day, and I’ve had to get creative with ways to make it better. If you’ve had vision issues as one of your primary symptoms you know it can get so bad that it makes you extremely disoriented, almost like having vertigo. I’m certainly no use when that happens, and if it does in the middle of the afternoon, it means my day is over by 3 PM. Not ideal for a working mom of 2 boys.

I’ve actually found some ways to give my eye muscles a chance to relax and it’s been really helpful so I thought I’d share.

Going into a dark room

One of the things that has helped the most is going into a dark room right when I feel my eye muscles getting weak. I try not to wait until it’s too late or I’ve found it takes much longer to recover.

Going into a dark room with nothing to stimulate my eyes for a good 20-30 minutes has helped tremendously. I will also use a black-out sleeping mask periodically throughout the day for small increments and that has helped a ton too.

Cold compress

Another thing I do is cover my eyes with an ice cold compress. I know there are sleeping masks that you can freeze, which I’m sure would help, however I just use a wet washcloth that I’ve placed in the freezer. Although I don’t get droopy eyelids, I’m sure this would help with that too.

Avoiding electronics

When my vision has been flaring for a couple of days instead of just periodically, I avoid electronics and computers for at least a full day, and maybe even 2, to give my eyes a chance to rest as well.

If I have to use my phone, I put it on a dim enough setting that I can see without straining my eyes. Light seems to really bother them which is also why I always make sure to wear dark sunglasses when I’m in the sun. I’ll even wear sunglasses at night before it gets really dark like just right after sunset if I have to drive or be outside.

Making everything just a bit darker seems to help me a lot. I’ve learned that anything that requires me to strain or squint my eyes is making them tired so I try to be extra conscious of that.

These are just a few tips I’ve found extremely helpful. Most of us have vision issues that may or may not be relieved all the time with medicine so hopefully some of these ideas will help you as much as they’ve helped me!

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