D’s story of being diagnosed and living with POTS

I have had symptoms of pre-syncope for as long as I can remember.

My mother was a nurse so she would just tell me that I had postural hypotension and to get up slowly. This started as far back as when I was 8 years old. I also have always had gastrointestinal issues, whether it was just an upset stomach daily to as bad as severe gastroparesis. That has mostly resolved after my gastric bypass.

I was a very athletic youth and enjoyed gymnastics and cheerleading in particular. I would always get dizzy and feel like the lights went out but just pushed it off as normal because how hard I was working my body.

Headaches started after the birth of my 1st child in 2000. I was not diagnosed and decompressed for my Chiari until 2011. After that is when my symptoms of POTS got really bad.

In 2014 I had a spinal arachnoid cyst removed, it spanned almost my entire thoracic spine. I was a military spouse so I had civilian and Navy doctors who never seemed to communicate with each other.

My 1st visit with a cardiologist was in 2006 when I was diagnosed with a minor mitral valve prolapse. I have always had bouts of tachycardia so they always charted it as just that. I asked my cardiologist in 2014 to order a tilt table test and he said he didn’t do them, so that was that. I brought up dysautonomia at each appointment with my primary and neurology docs. Why Stanford never sent me for autonomic testing is beyond me. It wasn’t until I relocated to Sioux Falls, SD and saw a doctor at Avera Mckennan neurology that she ordered the testing. I have small fiber neuropathy, POTS and neurocardiogenic syncope. I am being treated with propranolol 80mg daily and go to get a litre of saline once or twice a week.

As of late, my heart rate is still erratic. I asked if I could start Mestinon since there have been some studies on how it works well with people with POTS and small fiber neuropathy. My primary said I needed to talk to a cardiologist about it. I do not currently have a cardiologist here in Sioux Falls yet.

I have a hard time staying hydrated by drinking fluids alone so the saline infusions help tremendously. I do my best to eat a balanced diet and do physical therapy.

My advice to anyone suffering from the symptoms would 100% be to advocate for yourself and never give up hope!

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One Comment

  1. Theresa 22nd December 2020 at 11:33 pm - Reply

    Would you mind sharing what Dr you saw at avera in Sioux Falls that helped you?

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