Hi Beth, How frustrating! Diamox is an old drug (about 30 years old), one that we are comfortable with, and we understand its side effects and contraindications very well. And it’s cheap, to boot! No one makes money by using Diamox! When I thought my son needed it and I wanted his doctor in on it with me because it can lower potassium, do you know what he did? He LAUGHED at me! He thought I was WAY over-concerned about any side-effects. The worst part, he said, was that it can stop working if you become too acidic. So we take baking soda capsules. My daughter’s lifetime headaches were also gone with a “baby dose” — 63mg at night. We’ve since moved her up to 125 mg. Now that we’ve added mast cell therapy, my son is in school for the first time in 3 years. It’s a great point about the dose. Also, you could ask for just a few days worth — not a month. You or your child will know if it is working likely the very first night (give it at night time). Dr. Francomano had hydrocephalus in her list of EDS conditions that we are now aware of (at her opening speech) — it’s not just me! If you ask a primary care doctor for Diamox because you are going into the mountains (it is used for altitude sickness), it is no big deal. We DO need to do a Diamox trial, but doctors prescribe “off-label” literally every day, so I’d hate to see anyone not have a chance to benefit from it before clinical trials are completed. Anecdotal stories won’t help much, I don’t think, unless we write them up in case studies and publish them (which is an option). I think Dr. Francomano is aware because I had her patients TELL her if it was working. She kept hearing the same song and dance, and the reasoning behind it. A Diamox trial would be great. Meanwhile, we must keep pushing forward! This use of Diamox will be accepted someday soon, I believe (we’re looking at it for some M.S. also and I’m setting up a multi-site study for that. I hate for EDSers to get left out of these things!). As my husband said, just ask the docs about their POTS treatments, “So, how’s it working for ya’?” Onward, my friends…