Maffin, first of all… have you had your catecholamines tested to rule out a Pheo or Carcinoid? If not, be sure to ask about doing a lying/standing plasma catecholamine test not just a lying down one which is standard. Morning is usually best, but ask lots of questions beforehand. Fasting? Diet restrictions for how many days before hand? Need to go off any meds? Make sure the lab is prepared ahead of time to do it right the first time. Take a blanket and an ipod with relaxing music. Be sure they put the IV port (is that what it is called?) in BEFORE you start resting the 20 or so minutes and don’t be dehydrated but don’t be super hydrated either if hydration enables you to stand for long periods of time sometimes.
Have you read the research at Dr. Theoharides’ site (mastcellmasterdotcom)
Watched Dr. Terry Wahls’ TedX talk “Mind Your Mitochondria”?
Researched Senobi Breathing?
Have you talked to your doctor about trying hydroxyzine (Atarax or Vistaril)?
I could NOT get my son’s doctor to listen to me that I thought his inattentive ADD was really POTS and he can sometimes stand for a while without high heart rates if he is hydrated. He spontaneously VOMITED after five minutes of a Poor Man’s Tilt I made him do so I rushed him to the clinic the next day and NOTHING. They’d only keep checking for ten minutes and they looked at me like I was nuts or had Meunchausen by Proxy even though I’d had a positive tilt. So… I got a Digifit connect 2 (for my iphone but they make it for ipad and itouch), a garmin chest strap, and I hooked it up and sent it with my son in his cargo pants pocket. VOILA!!!! Something about a visual chart in RAINBOW colors and with just a glance we had a referral to a pediatric cardiologist! So…. anyone having trouble with their doc listening or even unwilling to look at heart rate data… consider the digifit connect 2 (I downloaded Icardio from itunes for a small fee too) or another application similar. (I’m not sure what has come out this last year, so research it for yourself) You may be shocked how a doctor who doesn’t seem to listen may quickly take heed when they SEE the data. Good luck!
My best to you, SweetFeather