I was able to pick his brain for a while, and I feel like he really explained so much. Here's a few big take-aways from talking with him:
- No matter what medications you are on, one of the big things is maintaining your salt balance. If you don't have enough salt in your system, your meds cannot work. DON'T do this by just guessing. Ask your doctor for a 24 hour urine sodium study. This will give the doctor a read on your total urine output in a 24 hour period, and your actual sodium content of the urine. Your output sodium, as a POTS patient, should be between 180 and 220. If it's low, you are not getting enough sodium and can supplement with salt tabs or electrolyte drinks. If it's too high, you can adjust down.
- The norepinephrine response test can be a useful tool, but it must be done at a testing center. Only a testing center will be able to follow the right protocols and go through all the appropriate steps in terms of having you change position. There are not a lot of testing centers around, almost zero west of the Mississippi, so you will have to go to a lot of trouble to have this completed if you don't live in one of the sweet spots. However, it's probably NOT worth going to the trouble unless you've exhausted other options and nothing is working. Most POTS patients have very normal test results here and learn nothing of real value.
- Cytokines are not good. Try to stay away from those. I'm going to have to do some research on what that translates to in the real world, but it was something he threw out at me. More to follow, I promise.
- Ketogenic diets have not been studied for their true usefulness to POTS patients, but he has known a few patients to go that route. It's not terribly likely that a ketogenic diet will do much for your symptoms and it's a very difficult diet to be on. He doesn't recommend it, although he DID recommend aiming for a higher proportion of protein to carbs in your diet. If you look at your diet in terms of percentages, most conventional wisdom tells us to aim for a 50% carbs, 30% fats, 20% protein diet. That's not beneficial for POTS patients. Aim for 6 meals a day, get your sodium where it needs to be, and go for something more like 40-50% protein, 30% carb, 20-30% fat. You will probably want to adopt the sort of diet that many bodybuilders use for "bulking." Google it - there's lots of meal plans out there.
- Don't go crazy on the free water. Make at least half of your fluid intake come from fluids that contain electrolytes, and if you need to cut fluids for any reason you should cut free water first. I found this funny. All the other doctors I've been seeing have been praising me for drinking so much water. When I told this doctor how much I drink, he immediately declared it too much because of how it could be lowering the electrolytes in my body and reducing my available fluid volume.
- With time and proactive self-management, some POTS patients can be effectively "cured." However, even if you get to a point that your POTS appears to be gone you must remember that any illness or surgery is likely to bring it back.
- Deconditioning is not a reference to muscular strength and tone. When we talk about deconditioning in POTS, it's really autonomic deconditioning that's happening. Your body must experience the effects of upright motion against gravity for your autonomic system to be healthy and responsive. This is why at some point your exercise plan needs to involve seated rather than lying or inverted exercises, and you should aim to reintroduce upright exercises like walking. This should, of course, be done gradually and carefully. However, if you haven't thought of this as a goal for yourself, you probably should.
