The first clue I had that anything was wrong was a deep, profound silence in my left ear. Suddenly it felt like it was stuffed with cotton and so swollen it must be twice its normal size.
The second thing I noticed was the high-pitched squeal. Also in my left ear, it was the only thing I could hear.
Since 5 PM had come and gone on this Friday afternoon, I couldn’t do anything about calling the doctor, and I didn’t deem it worth a trip to the emergency room. (I have since learned that I was wrong about that; if you get a virus in your inner ear, a fast trip to the ER and an antibiotic injected into the ear are all that will save your hearing.)
Over the next couple of hours my hearing returned and that feeling of my ear being “stuffed” faded but the sound did not. By Monday morning it had risen in volume so it was inescapable, and every other sound was deafening.
The ear, nose and throat doctor I consulted wasn’t reassuring.
“You’ve had a virus in your ear,” he said. “You’ve lost the ‘cushion’ you have in your hearing, so any more damage will mean increased hearing loss.”
Somehow what he said didn’t match up with what I was experiencing, so I called an audiologist I know at a local university. She cleared her calendar and brought me in for testing that day.
As I sat in a soundproof room waiting for her and her assistant to administer a series of tests to see how much hearing I actually had lost, I tried to focus on what they were saying. They were speaking in low tones, yet I begged them to please whisper; even a small amount of noise was exquisitely painful.
The tests the audiologist administered did show some high frequency hearing loss, but she couldn’t account for my extreme hyperacusis; she sent me on to another ear, nose and throat doctor who has a reputation for difficult cases. He, too, was puzzled about what was happening to me, and I went home with no answer as to whether this was something progressive or whether it would stabilize.
The next few weeks passed with agonizing slowness. Nighttime was the enemy. My doctor prescribed a sleeping pill, yet I would thrash all night in the bed for two, three four nights in a row before I was so exhausted I couldn’t help but sleep. I purchased CDs of “environmental” sounds to try to help me sleep; even turned very low they were irritating, yet a quiet room was unbearable.
The next few months brought no answers. Although the hyperacusis improved, my tinnitus remained loud, distracting and very frustrating. Testing for food allergies revealed nothing. Although I was in no way suicidal and I believed that eventually I would find answers and things would improve, the depth of my exhaustion, frustration and fear helped me to understand why some tinnitus patients consider suicide, and a few follow through with it.
Then one morning I had another episode of deafness in my left ear. This time I got to the doctor fast enough that they could see it on the audiogram. A second test two hours later revealed that my hearing was returning.
The doctor started quizzing me about what I had been eating over the past couple of days. He suggested that I might want to watch my salt.
He also told me he suspected I had a condition called “hydrops.” This is a kissing cousin of Meniere’s Disease, which is characterized by all the symptoms I had plus severe vertigo. For the first time I had a possible diagnosis and I could implement a plan.
For the first time since my initial attack, I started to relax just a little, and began sleeping some again. I started researching Meniere’s Disease and applied the therapies recommended for it to myself. The primary thing I did was to put myself on a severely salt-restricted diet, but I also eliminated any intake of caffeine, artificial sweeteners, aspirin, and ibuprofen.
In the six years since my initial attack, I have had only one more episode, when I got into salt and didn’t realize it, and then was outside all day the next day and got dehydrated. It took about two years before I stopped being completely distracted by the noise in my head; today I mostly ignore it except when I let myself get dehydrated so that it rises in volume and becomes very annoying.
I have learned a lot about invisible handicaps over these past six years. I’ve accepted that this is a permanent condition, but I’ve also learned to manage it most of the time. I sleep well, and my hyperacusis generally is mild. But I will never again regard tinnitus as “just a little noise,” and I understand well how head noise can be just as debilitating as a severe injury.