Ourfulhouse,
Thank you once again! I did read your comments yesterday, but my migraine was so severe, looking at the computer screen hurt, so I took the day off of the computer. I decided to take 1/2 doses of Diamox with some Sodium Bicarb pills my hubby got from the pharmacist -650mg tabs similar to the link. (The new link works when copied and pasted into browser, Thx). I could actually feel the Diamox wearing off every couple hours, as the head neck pain is different than the other migraine pain. I am charting now in a journal. I think you may have been right about the allergic reaction triggering the migraine. I spent the day in my room quiet, and dark. Today I was relieved to wake up without the awful migraine. Today was one of the most functional days I have had in quite a while. 🙂 I feel that I am reading my body better and figuring out the Diamox dosage better and think the sodium bicarb tabs may be helping more than the nasty baking soda water. 🙂
No, I do not have an epi-pen, but after what happened with the toothpaste (and a handful of similar experiences), I think you are right.
My cardiologist wants to add low dose (compounded to be lower dose) beta blockers. Have you tried beta blockers, or have you heard anything good/ bad about treating EDS POTS patients with beta blockers?
I am curious about the anti-depressants as well, as he also mentioned SSRIs as a possibility. I have tried SSRIs in the past (when doctors thought I simply had chronic fatigue/ fibromyalgia, and migraines…before I developed POTS and before we knew about Ehlers-Danlos)… and I had bad reactions and a hard time trying to adjust to each one we tried before giving up. (Though I think I had the best run with Welllbutrin for a little while there.)
Having somewhere to go to speak with people who understand means a lot to me too. I appreciate the support.