POTS for dummies help—newbie
Posted: 19 February 2016 01:54 PM   [ Ignore ]  
Total Posts:  1
Joined  2016-02-19

Hi!  I just heard of POTS yesterday and would love some help getting started in my research, a POTS for dummies, if you will.  I have been ill for 4 years…extreme fatigue, headaches, heart palpitations that come and go, cold extremities.  I’ve had migraines with auras since I was 12, constipation, poor absorption of vitamins, b12 deficient, poor temperature control, sensitivity to light, sounds, and stress.  The most recent issue I have started in November.  As I was falling asleep my body would twitch and flood my system with adrenaline and I would start the process over to relax again.  This occurred about every 5 minutes all night long.  NO SLEEP.  This was accompanied by heart palpitations.  My blood sugar was also affected (LOW).  This occurred on and off for about a week and has reared its ugly head about twice a month since then but never as severe.  On Tuesday of this week, it started again.  This time I had read about POTS and did the standing test (lay down on back for 45 min, take bp and pulse, then check at 2 min, 5 min, and 10 min to see if heart rate increases 30 bpm).  My blood pressure was very elevated as was my heart rate both lying down and standing and did go up about 39 bpm after standing for 10 min.  I read through Dr. Driscoll’s book but am very confused.  I have an appt scheduled with a cardiologist next week to rule out heart condition but am unsure where else to start.  I failed the POTS standing test, but that doesn’t mean I have POTS that can be treated at POTScare, I guess.  If anyone would be so kind as to give me a quick bullet point list of the type of doctors I should be checking in to and what diagnoses I am trying to have eliminated I would appreciate it.  I had been considered as having adrenal fatigue for the last 4 years.  Thanks so much!

Posted: 20 February 2016 10:46 AM   [ Ignore ]   [ # 1 ]  
Total Posts:  1418
Joined  2011-04-19

I understand how difficult this journey can be to diagnosis and treatment. There are so many things that can contribute to POTS, I don’t think anyone would be comfortable trying to provide a quick list… Having said that, after checking for heart abnormalities, pheochromocytoma and often carcinoid cancer (blood/urine tests), I like to see a QSART test to check for autoimmune autonomic gangliopathy. That is the one condition we don’t see at POTS Care because it requires ongoing immunosuppressives and experts in autoimmunity are important for those patients. Others fall into “idiopathic POTS” and usually pass a QSART (after ruling out other causes of neuropathy that are not autoimmune). Those are the folks we like to see at POTS Care. Hang in, my friend.


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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