It happened again. I had been told to restrict sodium to less than 2000 mg. a day, to avoid stress and get plenty of rest. The first...sodium restriction...was the easiest; avoiding stress, the hardest. I had a dear friend who I love despite her volatile temper and self-assurance that no other opinions matter. That temper was directed at me in a series of unfortunate misunderstandings. The incident stressed and exhausted me and I awoke the next morning with another episode, much milder than the first, but leaving me unbalanced once again. While I have forgiven her, the venomous words cannot be forgotten so the friendship has ended just when I needed her most.
Several weeks later, I had my second serious episode. It occurred much the same as the first had nearly three years earlier and, this time, left me with right-side hearing and balance loss. I went through the treatment for a possible viral infection once again, was fitted for a second hearing aid and referred to a neurologist who specializes in hearing and balance...a neurotologist. I was put through another series of tests including an MRA and carotid artery ultrasound. No tumors or lesions were found. An invasive test was offered but not recommended as, while it might help determine cause, it would do nothing in regard to bringing us closer to a remedy and had the slight possibility of causing stroke. The conclusion was that "something" had wiped out the neuro path from my feet and my eyes to the balance center in my brain. Without my hearing, I lack the three things that the good Lord gave us to keep us upright on this spinning orb. I went through balance therapy once again and practice often to remind my brain of the new path that my eyes have found.
Management at the health resort where I worked as a concierge kindly insisted all through this ordeal that, though I was no longer able to conduct walking tours, I was valuable to them in so many ways that I only needed to let them know what I needed from them to do my job. Finally, one evening while working at the desk in the hard-surface busy lobby, I became frustrated and humiliated when I had to ask a guest to repeat himself several times and still didn't understand him. A co-worker took over. I went into a back office and cried, came out and said to my supervisor "What I need is to not work here any longer; at least until...if ever...I get this "thing" resolved. I am on long-term disability from the concierge function but continue to work a quiet back-office clerical job one day each week. Even that exhausts me due to the strain of concentrating to hear and maintain balance. Back and forth from paper to computer screen is dizzying.
I continue to fitness walk about four miles three times a week with a friend. When out and about alone, I use a cane when I know that I will be on rugged terrain or need to navigate curbs or stairs or embankments without hand rails. The cane makes the statement "either give me a hand or get outta my way."
I have sold my bike and my SCUBA gear and given up travel alone. I no longer enjoy luncheons or dinners in noisy restaurants or homes. I still do my own grocery shopping, though I find it one of the most difficult things to do. Because I can't navigate due to "oscillopsia" that goes along with bilateral balance disorder, I still drive but only in areas that I know and only in daylight hours so I am housebound from dusk to dawn. Friends have suggested a GPS. I would neither be able to view it while moving nor hear it clearly.
Mine is an invisible and misunderstood malady. Hopefully, the following links will help with that understanding:
http://american-hearing.org/disorders/bilateral-vestibulopathy/
https://vestibular.org/sites/default/files/page_files/It%27s%20All%20in%20your%20Head_Addressing%20Stressors%20%26%20Self%20Doubt.pdf
It gets worse...
“Anything you may hold firmly in your imagination can be yours.”…philosopher William James
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