Hello, I found it very helpful reading these descriptions of symptoms as I have been struggling to diagnose my own situation. I had surgery in April 2023 just above my ear to investigate a possible tumor, and since I awoke from the anesthesia, even before I went home, I have been dizzy. Every day for two years now. Ive had two MRIs, I saw a physical therapist who tried doing Epley maneuvers but we discontinued because she said my eyes were in a problematic position and that I should see a doctor about this. I finally was able to see a specialist who determined I had nystagmus. I get through the day taking Dramamine and Meclizine but this doesn't make it much better. I can't focus on anything because the room is always spinning around. The neurosurgeon who performed the operation has not been helpful at all. I don't know what could have happened that this dizziness would last for years, no break from it day or night. The medicines help but it doesn't go away. I'd love to know what I can do about this.
your symptoms and your story sound unfortunately similar to other vestibular patients. The keys to any vestibular dysfunction is education and getting a correct diagnosis. Unfortunately with these disorders it sometimes takes seeing a few different doctors to get a correct diagnosis, once you receive a correct diagnosis most times they can treat to make days more bearable. Have you possibly tried seeing a neurologist, they may be able to help with the nystagmus issue. Definitely check out the website vestibular.org, that has much more information, as well as links to resources like support groups and social media sites where you will find a community that understands you. Wishing you the best on this difficult journey.
