Dizziness symptoms with ocular MG despite treatment?
Hi everyone, I was diagnosed with ocular MG in 2023 but have been experiencing symptoms since early 2020.
Over this time, I have been on a course of prednisone 2 separate times. While it has significantly helped my eye fatigue, ptosis, double vision, throughout both of these periods I continued to have a low level dizziness and visual motion sensitivity that gets worse when walking around, driving or being in busy visual environments such as grocery store aisles. Tgese symptoms improved somewhat but never seemed to go away despite basically remission of my other symptoms. I’m trying to determine if it is maybe just my brain not adapting properly to the change in function of my eyes or if there is a separate dizziness issue as well.
Has anyone else experienced any persistent dizziness?
yes i have. curiously i was taken to ER because of vertigo which occurred about 6 to 8 months before my MG diagnosis. The vertigo is still present today. up until i read this post i had no idea that vertigo may be associated with MG. Just this weekend i ended up in ER again as a fell down our stairs and the responding physician was discussing balance issues. i have made an appointment with the neurologist in a week. thank you for this discussion, you're great! Do you wany any feedback once I've had my Neurologist Discussion?
Yes please let me know what the neurologist says. Im sorry to hear that you have fallen down the stairs. My neurologist has said that it would be unexpected to cause true vertigo in the sense that it doesn't affect your inner ear. Instead it affects the way that your brain integrates the signals from your eyes, and vestibular system to stay oriented and keep you balanced. Be extension, if there is weakness in your eyes, your brain may have difficulty adjusting to this and it would make sense that it causes dizziness. My issue and what is weird is that all of my other symptoms are gone. im guessing it is just very low level fatigue where my eyes arent positioned where my brain thinks they are but not weak enough to actually cause drooping eyelids or noticeable eye fatigue. Either way, good luck and im happy to hear that this post may have been helpful for you!
I have visual problems, I'll get dizzy out of nowhere and I have to lie down because moving around makes me dizzier. Getting dizzy affects my balance so moving around is just too dangerous, my balance is just way too compromised. The symptoms coming on makes me just so tired so I have to go to bed to help sleep it off but even that doesn't take care of it completely. It just knocks me off my feet for at least 3 days. This coming on out of nowhere is scary and very frustrating.
I would have my vitamin D3 checked. It is notoriously low in MG patients. D3 is important in maintaining good balance and protecting against dizziness. It's a simple blood test.
I did not know this. Thanks for telling me. Again, thanks. I'll ask my doctor Monday for that test.
The nature of MG is that muscles get weaker with exertion. It's not surprising your eye muscles start giving out in busy visual environments. My eyes are usually great all day, but sometimes they give out and lose focus at night trying to watch TV. Does it help your dizziness to just sit down, close your eyes and relax?
Thanks for your response! resting does help but i also experience issues with motion sensitivity and dizziness shortly after waking and walking to the bathroom which leads me to believe that there is something else going on as well and is not purely a "fatigue issue" since i have symptoms even without exertion. I tried having my inner ear function checked and all tests were negative. I have recently seen a neuro-opthamologist and we determined that it seems like i also have mild vertical heterophoria which may explain the visual strain despite improvement of other symptoms. I am getting prism glasses for these which may help so we will see! i believe that my D3 was checked a few years ago when this started and came back normal but i will look into getting it checked again
