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Living with POTS

Lillian, age 25, Delaware

For my entire life, I thought my symptoms were something that every individual experienced. The first symptom that caught my attention was any postural change caused me to see stars, black out, and experience extreme nausea.

I ignored all my symptoms until one day I went on a trip with my school band and chorus in 7th grade, age 12. I had been seated for hours, and when we all got off the bus to line up for practice, I suddenly felt very ill. I turned to my friend and told her I didn't feel good, but when she looked at me I was already on the floor unconscious and having a seizure. I remember how intense the heat was that day compared to the bus.

Fast forward, and I'm seeing many doctors. We did a standard POTS test, and I passed with flying colors. As I have gotten older I've experienced multiple symptoms that have greatly affected my quality of life. But I'm taking steps to help myself now. I've been diagnosed with Ehlers-Danlos Syndrome type 3, gastroparesis, endometriosis, interstitial cystitis, and several other chronic illnesses as well as POTS. I experience tachycardia daily as well as atrial fibrillation. I now use a mobility aid daily, take medications to improve my vitals, and get fluids every day through my feeding tube.

As a child I always had a fondness for salt that no one understood, but that's OK because I understand it now and it makes perfect sense! Although physically I might not be OK, I try to find joy in life everywhere I can. I definitely couldn't do this without my support team.