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?
thanks for your comment! I just wanted to drop a friendly reminder to check with your doctor or possibly even a pharmacist before adding in any additional supplements or vitamins. With everyone being on different treatments, you want to make sure they will not negatively interact with your current medications. I hope you are doing well and are able to get your vertigo under control. All my best, Julie (team member)
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. thanks David76, am going to ask the dr on my next visit but will try the vitamin supplement regardless of what he says
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 Hi again. This is a very interesting case and fits perfectly with my latest topic of study. Myasthenia Gravis is now one of the autoimmune diseases closely associated with autonomic system disorders. It commonly presents as digestive problems, diarrhea, constipation and urinary incontinence, breathing issues, swallowing issues, shortness of breath, peripheral neuropathy, balance problems, nervousness, sensitivity, mood swings, brain fog, fatigue, dizziness, dry eyes and, yes, vertigo.
The autonomic system regulates your non-voluntary muscles, nerves and functions. The symptoms of autonomic dysfunction are different than standard MG, and much more diverse. Acetylcholine is the key messenger in the autonomic system also and is crucial to its functioning. Your MG-related AChR-binding antibody can attack it and the autonomic ganglia receptors. A Polish study of 53 MG patients found that 38% also suffered impairment of their autonomic system, resulting in a wide range of symptoms not commonly associated with MG. You can find this study at:
www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2024.1415615/ful
Hang in there. Take it easy. Be safe.
