Does Anything Help Your Double Vision And/or Droopy Eyes?
Do you have Myasthenia gravis symptoms of diplopia (double vision) or ptosis (drooping eye)?
Has anything helped you? Medication, surgery, tape, glasses, contacts, eye drops, etc.?
- Jodi, Team Member
Has anyone experienced intermittent exotropia with their OMG diagnosis? I have it in both eyes, causing double vision. Prisms don't work ; can't find any power that works.
Thanks,
Jack (74 y/o male)Hey there! I just want to resend this reply I left on your post in case you did not get a chance to see it:
I am sending my wholehearted compassion as you navigate this new aspect of your life. https://myasthenia-gravis.com/forums/3-tips-you-wish-you-had-when-you-were-first-diagnosed-with-myasthenia-gravis-1.
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Try not to stress about prism lenses or surgery not being an option. There are numerous treatments available for MG and ocular symptoms. It might take some time and patience to find what works best for you, but remember, there's always a solution. And most importantly, never feel pressured to take a medication you're uncomfortable with. Your comfort and well-being are paramount. If you're not a fan of prednisone, don't hesitate to voice your concerns 😀
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Are you on pyridostigmine (mestinon)? (https://myasthenia-gravis.com/clinical/ocular-progression) In addition to mestinon and prednisone, Cellcept and azathioprine are popular amongst those with ocular MG. Here are other treatment options: https://myasthenia-gravis.com/treatment, https://myasthenia-gravis.com/forums/ocular-mg-which-treatment-has-worked-best-for-you, https://myasthenia-gravis.com/forums/ocular-mg-5, https://myasthenia-gravis.com/forums/ocular-myasthenia-gravis-3
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I recommend the following resources: https://pubmed.ncbi.nlm.nih.gov/38377456/#:~:text=For%20example%2C%20ocular%20myasthenia%20gravis,exotropia%2C%20with%20or%20without%20diplopia., https://www.cureus.com/articles/224736-ocular-myasthenia-gravis-as-unilateral-ptosis-and-external-ophthalmoplegia-a-case-report#!/, https://www.nature.com/articles/eye20016.pdf, https://escholarship.org/content/qt3sm7f5zg/qt3sm7f5zg_noSplash_f9b2c8ca0f6d58a7b3a047ef6e6919bd.pdf, https://pressbooks.pub/casebasedneuroophthalmology/chapter/myasthenia-gravis/, https://webeye.ophth.uiowa.edu/eyeforum/cases/353-juvenile-ocular-myasthenia-gravis.htm#gsc.tab=0, https://onlinelibrary.wiley.com/doi/10.1002/mus.27118. Exotropia has yet to be mentioned on our site, so I am unsure if it is regarded as a characteristic MG symptom or not. I would love to hear if those studies support it as related to MG or a separate isolated condition. It makes sense if they are related. My mom has exotropia, so this is interesting to me. Sending good vibes your way!
-Jodi, Team MemberThanks, Jodi. Your support is greatly appreciated.
Hi i’m fully cancelled imuran/mestinon treatment with smoking weed for my ocular myasthenia.
I don’t have double vision for 2years in a row now.
I don’t recommend any illicit drugs to treat MG, in my case it helps me a lot, THAT’s ONLY MY POINT!!
Hi
, thanks for sharing! Glad to hear that you found something that works for you! Best, Allison (Team Member)
I have found through trial and error that wearing sunglasses throughout the day and especially on sunny days or in brightly lit areas helps some. It is just a short term fix. Eventually rest, even just sitting with my eyes closed for awhile, is a must. But I have found that on my more extraneous days that a good pair of sunglasses can help me go a little farther on certain days.
Hey there! Thanks so much for sharing your experience! What budget do you notice the quality of sunglasses generally suits your liking (helps your symptoms)?
-Jodi, Team Member
The very best help I've found is wearing a weighted eye mask at night. I couldn't stand tape and though my eyes would be too weak to stay so the way open on their own, they would also tear so much they would unstick the tape.
Someone had a bead filled spa eye mask I started getting cold and using and that helped the symptoms for a bit, but when I trialed a few I found on Etsy for sleeping with (after scaring the crud out of my kids a few times sleeping with my eyes wide open), that really helped. Now, if I wake up and find I lost my mask or it got askew at night I can tell I'll have a harder eye day, but i love this tool for helping.
thank you for sharing! I’m glad the weighted eye masks have been helpful for you. Best wishes, Julie (team member)
