thomas leverett weblog

Sad story

Now that I've made public my new cochlear implants, I've had an outpouring of good wishes but also curiosity: what went wrong? How can we avert this? How could good hearing go down the drain? This is my story. I'll leave the details of the cochlear implants themselves for later.

In my opinion there are several possible culprits, and there's no rejecting the idea that it could be a combination of them. I'll list them out. 1) altitude/pressure issues. 2) six cups of coffee a day for forty years. 3) meds that disrupt the balance, or that I'm allergic to (very possible given my allergenic history).

My first dizzy spell was in Texas; that rules out altitude but not pressure entirely. In New Mexico, however, dizzy spells came on fast and furiously. I knew I needed an EMT; one was in Las Cruces (~130 mi. of desert, 7 mo. wait); one was in Roswell (130 miles of even more barren country, 5 mo. wait). I took Roswell. When I got there he said 1) it's Maniere's disease, which is really more of a condition, a condition of ruined hearing from inner ears full of fluid (and possibly other things). 2) Your inner ear is an organ, like your kidney, extremely complex, and its entire job is to separate out sodium and potassium from a stream that comes through it. Obviously it's malfunctioning. Too much sodium can make it malfunction. 3) What we do is prescribe a diuretic (prevents your body from retaining water) and a strict low-sodium diet. We do that because it works.

when he talked about retaining water, I thought of the coffee, and he said yes, there is a correspondence between too much coffee and Maniere's. It is also indisputable that pressure/altitude can play a role. He was less sure about the med thing but didn't discount it. When I got home I found one of my meds actually was sodium axoproponapthaminapramisol (last part made up) and I rejected it. It was made of sodium. Since then, since doing what he wanted (it took a while to get the hang of low-sodium), it has been better - fewer dizzy spells. Several meds, I noticed, tended to cause dizzy spells. When I cut back on coffee I needed something for ADD: dizzy spells from those meds. I eventually quit all meds except the diuretic itself, and just live with ADD; I have three cups of coffee a day, and I'm retired. But in general, fewer dizzy spells.

The dizzy spells were in a sense a symptom of full inner ears. Why were they full? It could be a combination of things. Going from 9000 to 3300 feet every day certainly didn't help. I never really had a sodium-rich diet but all diets are sodium-rich until you make a conscious effert to make them low sodium. Severe cutback on fried, processed, salty food has really helped. The diuretic has helped but it has its own consequences.

Why do I say I'm not sorry? You can say you never should have moved to 9000 feet but it was fantastic, wonderful being up there in the clouds and I am not sorry I did it. You can say you should never have taken all those meds but we generally have faith in meds and it's a rare case when people are allergic to them or they do what they could have done to me. I will say this though. When there is a "possible side effect" of dizzy spells that meand someone somewhere reported that as a side effect, yet no clinical trials have verified it. Well, if someone can have dizzy spells as a result of meds, everyone can. It's a reason to be vigilant, not to reject meds altogether.

Finally there's the coffee. Keep in mind that that's how I treated my ADD for all those years. No coffee, I would have been on the street, Iswear. So don't tell me you shouldn't have drunk all that coffee...of course I shouldn't have, but it's over now, and I can't undrink it.

As I look back a key would have been vigilance. From the first dizzy spell if someone had said 1) watch out; 2) way less sodium; or 3) get thee to online ENT,things might have been different. Nowadays when all this information is on the surface, we hardly imagine a world where I just sat and waited for an ENT, not knowing what elseto do. That was my downfall. If I knew the above I'd-a-been vigilant from the first turn and that's why I recommend: study up, see how delicate things are. Your hearing is your natural inheritance and you don't want to go through what I went through.

posted by tom @ 11:54 AM