NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Scared and Looking for Some Direction › Reply To: Scared and Looking for Some Direction
Scared, I wrote a post on this forum about my PHEO Nightmare (see if you can find it)… your episodes sound similar to mine.
Have your doctors ruled out a Pheo or Carcinoid? Have you had a 24 hour urine catecholamine test? And a lying/standing plasma catecholamine? What about a urine methylhistamine after an episode?
My symptoms were WORSE on a betablocker… that is when my metanephrines rose over 10 times normal on a lying plasma test. I wonder what it would have been standing!!!!
Betablockers have to be used with great caution in those with HyperPots because they can trigger mast cell degranulation. Have you felt worse since the Metroprolol?
Ask your doctor about trying NasalCrom, Gastrocrom, hydroxyzine, and ketotifen. After you read everything here on Dr. Diana’s site and the forum 🙂 I recommend you read Dr. Theoharides research on mast cells in inflammatory disease. (mast cell masterdotcom) And read at the mastocytosis society’s website… especially their Emergency Room document and medicines to avoid. Research all the POTS helps at dinet.org.
Do you drink enough fluids? I like SmartWater but there are recipes for homemade electrolyte solutions. I read HyperPots patients may not want to salt and fluid load but it helps me a lot but I usually have low blood pressure.
You will get feeling better. We are here for you!
My best, SweetFeather