Sorry not to have updated this in so long. My follow-up with Klimas had a ton of information, but none of it directly affected my treatment. I did much better for a while after my appointment with her, primarily because of the electrolytes, but this sumer has been pretty awful again.
I think I've figured out why: I'm not managing to control my
orthostatic intolerance. My guess is that my kidneys have gotten
more efficient at eliminating sodium from my system, so that the
quantity of electrolytes that was sufficient before is no longer. It's
funny, though, because I've felt like electrolytes weren't helping the
way they once were. It may be that that's just because I haven't been
drinking enough.
To begin to test all this, I ran my own, homegrown tilt table test. I
lay down for ten minutes and took my blood pressure and heart rate.
Then I stood up, standing as still as I could, and took my blood
pressure and heart rate (except that I stupidly forgot the heart rate)
every five minutes. I did that this afternoon, and from the morning
onward, I'd had about 1/4 teaspoon salt and 1/4 teaspoon potassium in
my breakfast smoothie, two glasses of Nuun, and two salt tablets (each
containing 8% of the US RDA of sodium). After 22 minutes, my blood
pressure had dropped to 80/60 and I stopped because I felt like I was
going to throw up. (That was a better result, though, than when I did
the tilt table test with Klimas, when after 8 minutes I was at 80/52.)
Next I drank two more glasses of Nuun, and after 20 minutes I repeated
the test. This time I passed, with my blood pressure holding steady at
105/75.
So it's possible that if I simply drink still more electrolytes, I'd
be feeling a lot better. Of course, there's a question of how much I
can make myself drink, and it seems like I'd already consumed a fair
amount this morning. Also, if my hypothesis is correct, then if I
increase my electrolyte intake, my kidneys will likely just get more
efficient still, and I'll start feeling like crap again.
So I have a four-fold plan. One is that I'm going to
generally push the electrolytes, planning to consume at least four
glasses of Nuun, plus my usual salt in my smoothie and salt tables.
Two is that I'll monitor my BP frequently, and anytime I'm feeling
crummy and my blood pressure is at 100 or below on top or 70 or below
on bottom, I'll down some more Nuun. Three is that I'm going to repeat
my tilt table test at other times of day. Mid to late afternoon is
when I'm generally feeling my best. This morning, I felt truly horrible
in a low-blood-pressure kind of way, and that was right after I'd
consumed a fair quantity of electrolytes, so I'm dubious but curious
whether more electrolytes could have done the job.
And that raises number four: I'd like to figure out
what Klimas's next treatment option is likely to be
and then get my PCP to prescribe it, since it takes
so long to get an actual appointment with Klimas. I
figure that on Monday, I'll call her office and see if I
can wrangle the information out of them, but I was
also hoping that maybe someone here who has
worked with her could tell me. So, any suggestions?
By the way, one comment about her for people
considering working with her: Her office is incredibly
disorganized. I've had to request everything multiple
times. So be persistent.
One of my conclusions is that I should have had a
follow-up appointment with her much sooner.
