Patient Comments: Pot Syndrome - Treatment

Do you have experience with an effective treatment for POT syndrome?

Comment from: Delayna, 13-18 (Caregiver) Published: October 18

I am a physician and my daughter has POT syndrome. She is treated with low dose Concerta (Ritalin). It helps her blood pressure (a side effect of the Concerta is high blood pressure) and it helps with the brain fog a bit as well.

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Comment from: CDMack, 25-34 Female (Patient) Published: June 25

I have passed out more than ten times since this postural orthostatic tachycardia (POT) syndrome started for me at twelve. I find the TED hose work at night, since I feel my legs 'running' when I lie down. I've tried both the Florinef and the beta blockers, but no improvement. Now I take a tall glass of water with Alka-Seltzer in it, it's disgusting but it gives me the sodium I need in the morning.

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Comment from: Tennis Lover, 45-54 Female (Patient) Published: January 02

I began to have POTS symptoms after going off birth control at menopause. Abdominal pain, dizziness, and constipation were the symptoms. I was losing weight, getting weak and short of breath. After 9 months off them, I started taking birth control again. Chest pressure stopped 2 days later. Gradually I was able to walk and exercise over next weeks. Now I am playing tennis again and swimming twice a week! I am very grateful for those pills!

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Comment from: 19-24 Female (Patient) Published: December 09

Beta-blockers (specifically metoprolol) are effective. I was diagnosed at 17 and have been on them for the past 5 years. I take them twice a day because the extended release doesn't work for me. It makes me feel about 80% better, I owe my life to them.

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Comment from: Malane, 13-18 Female (Caregiver) Published: July 16

Lots of physical therapy and pool therapy, along with a beta blocker helped my daughter with her POT syndrome. Her days went from three hours long to 6 to 8 hours long. However we still have bad days.

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Comment from: Delayna, 13-18 (Caregiver) Published: October 18

Salt is not really a rational treatment for POTs. If your kidneys work, all the extra salt that you are torturing yourself with will be urinated out pretty quickly.

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Comment from: 45-54 Female (Patient) Published: September 12

IV fluids seem to help me, but it is a weekly adventure. Heat is very bad bad for whatever reason. I can not keep my body cool. This summer has been very hard.

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POT Syndrome - Symptoms Question: Please describe your symptoms of postural orthostatic tachycardia syndrome (POTS).

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