I was 14 years old and bored out of my mind that summer, so I enrolled in a summer school typing class. It was during that class that I had my first Meniere’s attack. I felt light-headed and then nauseated; my balance was so bad I could not get from the typing desk to the door. After Mom got me I spent the next 24 hours clinging to the sides of the bed as the room spun around me, vomiting and sweating like I had the flu.
Only it wasn’t the flu. I ended up sick day after day, sometimes getting a day off, most times being sick part of each day. I was too sick to do my chores, ride horses, or much of anything else. I couldn’t walk, read, watch TV or turn my head without feeling as if I would be flung off into outer space. The low-level tinnitus I’d had all my life was raging. My hearing, never great, was in free fall and when I could hear my ears rang with sounds no one else could hear.
No one knew what was wrong. Doctors poked and prodded, drew blood, even hospitalized me for tests, including an EEG and a spinal tap. Then, when I was 16, a doctor got the bright idea to do the ice water in the ear test and as I spun out of control (and vomited) they congratulated themselves for finding out I had an inner ear problem. I was sick for days after that test. Oddly enough, no one ever tested my hearing.
Walking was my new final frontier. Walking a straight line was next to impossible and to this day I tend to veer to the right and bump people walking next to me. I learned how to focus on one spot like a dancer focusing on a spot on the wall. In time, I developed some control. I learned I had an “aura” and could identify when an attack was coming. I could drive because I had enough advance warning that I could pull off the side of the road and let the waves of dizziness and nausea pass. I started focusing on reading – one letter at a time.
Once, in a bookstore I was surprised by an attack that hit so hard and fast I would have fallen down if not for grabbing onto a pole. Those are called “drop attacks” and signal the later stages of the disease, although I didn’t know it at the time. I lived on Dramamine. Salt restriction, mega-vitamin therapy, you name it – nothing helped.
My hearing, absent on the left side for as long as I could remember, went into a sharp decline on the right. My ears felt full almost all the time. However, I never had ear infections until I was an adult and those infections were caused by an allergy to the plastic in my hearing aid. Go figure.
In my late teens I developed severe headaches diagnosed as “cluster headaches.” They often struck in the middle of the night with such ferocity that I literally fell out of bed and ended up at the hospital. I now see Migraines and Meniere’s tend to go together, so that those headaches may have been Meniere’s generated – or just an unlucky coincdence. Between the headaches, the light-headedness and the dizzy spells I’m amazed I functioned at all.
I was 25-years-old when the Meniere’s finally burned out and the cluster headaches burned out with them. I’m still headache prone, but I no longer want to cut my head off to stop the pain. The dizzy spells are gone, but I still feel light-headed at times. I can’t abide rocking chairs or office chairs that tilt back. The tinnitus comes and goes. Sometimes it is a low-level noise that goes on for days; sometimes it vanishes for a time and then comes back with a vengeance.
Wearing my hearing aid can exacerbate the tinnitus. Or it can cover the tinnitus with other sound. There is no rhyme or reason to these almost ultrasonic or subsonic noises in my head.
Loud, abrupt sounds are like getting hit on the head with a two by four. No matter how good my hearing aid is at cutting off abrupt noises, there’s a bit of a sound wave that gets through before the override kicks in, and for that one millisecond it is like I’ve had my brain stuck in a socket. That’s all it takes to leave me reeling, light-headed, and disoriented.
It seems that there are so many more diagnostic tests these days than in the late 50’s and early 60’s, but the reality is that I don’t see much more than can be done to help people with Meniere’s or Tinnitus. They are what they are. All one can do is buckle down, endure, and hope for the best.