I’m new here, and doctors are still hesitant to diagnose me with vestibular migraine/MAV… but it seems to be pretty accurate, I suppose. After I had my daughter (my second child), I had a few episodes of slight vertigo and disequilibrium if I bent forward, but nothing crazy. Then one day I got some weird vertigo in the grocery store (felt like I was moving up and down), and then I felt VERY lightheaded and had very foggy thinking. Since then, it’s become constant - I always feel like I’m “on something”. I rarely get the spins, but I always feel super lightheaded, off balance, anxious, and tired.
I got referred to an audiologist/balance center and got a bunch of tests that came up inconclusive, but given my history of extreme motion sickness my whole life, they think it might be vestibular migraine without headache.
Anyway, my symptoms get worse if I’m out somewhere walking around - especially somewhere with bright lights, like Target. When they happen, my body feels weird as well. Not just my head. It feels like I lose sensation a little bit, like I’m disconnected from my body, and like my body is too light to move (hard to explain). It’s the most worrying aspect of all this to me.
Does this happen to anyone else? I can relate totally to all the “head” symptoms, but does anyone feel weird in their body as well?
I think a lot of people get something described as “marshmallow feet” where it feels that your feet are disconnected from your body and you can’t quite tell where they are, kind of like walking on a mattress. I also get a kind of tingling in my feet sometimes when I feel a bit dizzy, especially when driving, also get a similar sensation through my jaw and occasionally hands. I think lots of body sensations are possible as the brain is the centre for all the nerves that run through the body.
I can tell you that for me, my whole body is affected in a similar way to how you have described. I have these low level symptoms pretty much constantly but they get a whole lot worse if there is a source of bright light around me such as a computer screen, TV, supermarket, fluorescent. What happens is that my arms and legs sort of start to tingle a little and it feels like they are not part of me. I feel like I lose some power in controlling them like the nerves have been interrupted somehow and the movements are not as sharp or responsive to my command as they used to be.
I also get a lot of internal motion feelings inside my limbs, like they are floating up, down or away from me. I can deal with the dizziness but these body symptoms are the worst for me. I have had various different diagnoses - migraine and vestibular hypo-function seeming the most fitting, but sometimes when I explain these feelings to the docs they look at me as if I am crazy.