I’m a Newbie as well, diagnosed 3 months ago (9x5x5mm) left side.
I too had Sudden Hearing Loss (in 2014). I woke up in the wee hours of the night as I felt the pressure change when it occurred, and in the morning, I noticed a significant difference in hearing and immediately went to my ENT. I was prescribed steroids and anti-viral meds and fortunately regained my hearing a couple weeks later.
I was fine after that although started noticing some tinnitus and fullness in my ear in 2017 and finally got an MRI done in March 2018, hence the AN diagnosis. I noticed an “off” feeling in 2017 but couldn’t put my finger on what was causing it.
I too underwent balance testing (ENG and caloric test). I had abnormal results immediately with the caloric testing and had to do an additional cold water test in my right ear to confirm. I had the water administered 5x during that session, awful to go through for me as I hate water in my ears, but we can all do it and get through it!!!!
After the AN diagnosis, I have experienced balance issues which worsen as the day goes on with increased fatigue.
I was told by my Dr after the balance tests that my left side is still sending distorted signals to my brain and that my right side has not taken over. I researched this and discovered this is called “decompensation”. I am doing vestibular exercises to assist my right side in compensating for the left side. It is wearing me out and causing increased fatigue being in mixed signals mode.
It is frustrating but I am managing and adapting to the imbalance symptoms. I sometimes walk into a wall and trip over my own feet but fortunately not to the extent of falling. I just laugh at myself and keep positive and keep marching on.
I cannot drink any alcoholic drinks anymore as just a couple sips of wine or beer make my imbalance much worse. Please keep this in mind if/when you have an occasional alcoholic drink.
I am responding to share my experience with you as a Newbie and learning how to adapt and cope.
I am still driving and keeping myself active and busy and pushing through this imbalance issue as best as I can. Doing exercises help and keeping physically active with a positive frame of mind.
I was told by another AN patient who has been in W&W mode for 12 years now that her balance issues lasted for 2 years, and she said hers got worse before they got better.
Best wishes and kind regards to everyone on this journey. So grateful we are able to support each other through this.