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?
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.
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?
I can only imagine that experiencing persistent dizziness has to be very difficult. I’m sorry you’re experiencing this. I found an article that I thought you may identify with https://myasthenia-gravis.com/living/photophobia-experience. Hopefully other members will also chime in with their experiences. I hope you’re able to get to the bottom of your dizziness and see some improvement soon. All my best, Julie (team member)
