In 2009, I was working the ideal part-time retirement job at a luxury health resort/spa. After a horrific nose-bleed in the middle of the night, I awoke to the world spinning. Any movement, just raising myself off the bed, made me nauseous. I laid there for what seemed like hours until it subsided enough that I was able to stagger to the phone and make an appointment with my primary care. I was referred to an ENT and went through all the pertinent tests. I was referred to a neurologist who found no neuromas, tumors, blockages or signs of stroke. Meanwhile, I was prescribed meds for a possible viral infection. With no definite diagnosis, I was told that it may be Menieres but that, because Menieres is episodic and I had only one occurence, we would have to wait and see. It wasn't until several months later that I experienced loss of hearing in the same ear as my balance impairment. I had no further episodes except that I learned that stress of any kind made my balance worse. Four years later, I had another major episode upon awakening and lost the balance and hearing on the opposite side. More of the same testing, meds for possible viral infection, a referral to a neurotologist and still no firm diagnosis except that it doesn't behave like Menieres. "Something" knocked out the path from my feet and my eyes to my balance center. Without my hearing, I had lost all that we are given to keep us upright on this revolving planet.
I am wearing two hearing aids and have been through vestibular therapy sessions twice. My hearing fluctuated a lot between episodes and, now, I have had a sudden deterioration of the cochlea. I had to give up my ideal retirement job after a year of Long-Term Disability with no improvement. I qualify for cochlear implants but have learned that the procedure could possibly adversely effect balance so I have opted out. I have applied to be a partiacipant in a study of vestibular implants at the University of Washington but have not gotten a response.
I'm so glad that I ran into VEDA when doing a search for details about Bilateral Vestibulopathy. Just knowing that there are others with this abnormality is helpful and it is a true blessing when others share their coping strategies. A friend who believes that I have writing skills suggested that I blog about my experience as others may benefit and it would be cathartic for me. I have not wanted to make my blog public so have not completed a full profile in order to publish it, however I send it to friends and family and have included the link here: http://roysdgtr.blogspot.com/2013/08/where-to-start-beginning-having-bee...
Writing IS cathartic for me. I am still in mourning for my loss of independence. I was feeling so fit intending to work many more years and fill my reitrement with travel to exotic places I tend to write a draft when I am having one of my "Pity-poor-me" days and polish it until I can make it sound positive before I allow others to see it. There are 17 posts so far beginning in August 2013. I hope you will find them entertaining if not helpful.