I tried for ages to get a doctor of some kind to agree to work with me on the POTS study. (If you don’t know what I’m talking about, see here.) But no. My neurologist, kind though he his, is entangled in red tape at the behemoth Cleveland Clinic. He’s also incredibly busy, and was put off by all the paper work involved. (Although to the naked eye it looked very minimal.) Ultimately after being in limbo with him for a couple months, I approached my family doctor, thinking that it would be a no brainer. She’s very pro-exercise, as doctors usually are, and works for a small practice that she herself runs. So I sent her an e-mail with a very short, direct summary of the situation, and all the attached information from the Texas people. No surprise, I got no reply, and after a week or so I called. Again, all the doctor has to do is test me for POTS, hand me the information, and then three months later, test me again. (A ten-minute test in the office.)
But no. “The doctor says she cannot administer any treatment that is not approved by the FDA,” said the rather snippy nurse. “AND, she doesn’t communicate with patients via e-mail.”
Okay, so even if the “treatment” is just exercise, it’s not FDA approved. … ?
It seems that this is a legal hot potato, and no one, but NO ONE wants to be the person who handed me the exercise plan that caused me to drop dead or go into a coma or whatever in the middle of the gym. While watching Colbert, most likely.
So I gave up. I worked on it patiently for months, and now, I’m done. I re-read the article carefully and am now attempting to do just what everyone says not to do, that is exercise without your doctor’s supervision and blessing.
I’m just trying to muddle through, kinda, sorta, approximating what the protocol was. It begins with 30-40 minutes 3-4 times a week of seated exercise (recumbent bike in my case, tried and true), with the goal of elevating your heart rate to 75% of maximum for 20-30 minutes each session (a little warm up and cool down is called for). For me, that works out to getting my heart rate over 130. It’s not totally unfamiliar territory. I’ve done it in the past, pre-POTS, but it’s been pretty hard. I console myself that while I don’t actually have the protocol to follow (only a summary of it that lacks any detail), I do know how to exercise, and I do know myself fairly well, and I do have trusty vestibular therapist Vince on board, and I’m checking in with him every two weeks. Just think, six months ago I was riding the recumbent bike for four minutes with two people watching me intently. Now I’m riding it, hard, for 40 minutes, and surviving pretty well.
The other parts of it are to increase daily water to 3-4 liters, and increase salt to a staggering 6-8 grams per day. Holy crap, that’s a lot of salt (like three teaspoons) for someone who can’t go near processed food! If I could eat repeatedly at McDonalds this might not be so challenging. … but as it is, I’m all about organic steamed kale. I drink my special drink– 1 EmergenC in one liter of water, combined with maybe a half teaspoon of salt– throughout the day. More– I need to chug down yet more. I feel like I’m sloshing around like a giant water balloon.
I started about a week ago and have hung in there, despite a mild stomach bug working its way through the house. The exercising uptick made all my dizziness symptoms rush right back, no doubt. I’ve been dealing with the POTS coldness (cold hands and feet and everything else due to low blood pressure). But under the “It will get worse before it gets better” theory, I’m hanging tough. Three months, that’s 12 weeks.
One down, 11 to go.