I’m new to this forum and I spent a considerable amount of time reading topics here before I finally made up my mind and decided to post about my problem, because I saw so much support from everyone.
So I’d like to tell you about my symptoms and would appreciate if anyone comes forward with any ideas as to what the reason for this living hell could be.
A year ago I went hiking and took a mountain lift to shorten some of the hiking distance (I know, lazy, right?). I’ve had a considerable fear of heights ever since I was a grown person, and the lift had no roof over my head, with feet dangling and at times, it was pretty high, so I panicked a lot at the time, but I had to endure it when both climbing and descending.
A week later, after going home from work, I suddenly experienced my first sway/falling sensation. Ever since that first sway, during each step I take, I feel a sudden, very short (~1sec) sway/falling sensation, like a sudden descend or ascend, or like stepping in a hole and being drawn forward/backwards. Now that symptom is very common, however, I am able to provoke the same feeling when making circles with my torso, or when simulating some quick vibrations and movements up and down with my body even when sitting/lying down. As much as I shake my head, however, no such feeling manifests.
From that moment on, I started monitoring myself on a daily basis for these symptoms, as they are extremely unpleasant and prevent me from living my life as I did before - training and walking require almost 100% of my concentration, as for each step it’s uncertain what feeling I’ll get, which direction I’ll feel pulled towards and this really makes me very depressed and incomplete.
I’ve done all kinds of MRIs - from head to torso, visited several neurologists and otoneurologists, tried several medications (Betaserc, Azalonum, Cavinton Forte, Ginkgo Biloba) and Vestibular Therapy, done EEG, EMG, even polysomnography and multiple blood tests and hormones - nothing comes up EXCEPT a possible vestibular paroxysmia due to a very slight compression of my eighth cranial nerve by an AICA, my otoneurologist even told me it’s not actually compressed, but passing really close by. I’m currently treating this possible paroxysmia with lacosamide and so far, after 2 months and daily doses of 100mg the first month and 150mg the second, I’m not sure I see some progress with my symptoms.
Does anyone have any experience with similar symptoms? I would very much appreciate if we can share what we’re going through with each other and support ourselves! I’ll be looking forward to your responses!