This video is great, as well as part 1 & 2 of your talk at the conference!
Going to segway here and ask about kidney stones, since you mentioned you had one during the conference (yikes, hugs to YOU, I’ve had them before… so painful!).
Kidney stones! PAR-TAY! 🙂 Trying to put all of the pieces together on this. I’ve read that EDSers are more prone to kidney stones, too. Is that because we have EDS or is it because salt encourages the formation of kidney stones, and most doctors are pushing us to have a great deal of salt and beverages with salt to increase our blood volume? I don’t think anyone knows the answer to that!
At this point, my kids and I are seeing a nephrologist to see what we can do to avoid stones, but stay on Diamox as long as we need it. It is interesting to visit forums for people with pseudotumor cerebri or idiopathic intracranial hypertension because they are all on Diamox for the long haul. They grapple with this, too. I will keep you posted as to what we do. Currently, we drink a LOT of lemonade (with xylitol), are heading toward a low oxylate diet, and we’re decreasing salt intake. Of course, we’re drinking a fair amount of water, but not going overboard on that. Of course, we’re on the lowest dose of Diamox we can be without symptoms cropping up. When I weigh BRAIN vs. KIDNEYS, brain usually wins! 🙂 Of course, we need to protect our kidneys, so I’ll keep you posted as to what I learn, and will be grateful to everyone else for throwing in their two cents! 🙂 Diana