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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Invisible Battle - By April


My name is April, and I was diagnosed with inappropriate sinus tachycardia (IST) almost two years ago. I was 19, turning 20, when I found out what I had.  I was a pretty normal kid until one single day and one single moment that changed my life forever.

I was working two jobs and going to school full time. I was studying to be a nurse, waiting tables, and working at a local nursing home. I had just gotten engaged to my high school sweetheart of four years. Life was at an all-time high for me. Then it happened; I was waiting tables when I started to feel extremely uneasy, and then my hands started to shake uncontrollably. I thought maybe my sugar was just low, so I drank some OJ with added sugar. I just could not shake that feeling, so I thought maybe some fresh air would do me good. I stepped outside, and almost all at once I felt it; my heart was beating so fast that I thought it was going to beat right out of my chest.

I alerted my manger about what was going on, and he led me inside where he took my pulse. His eyes got wide, and he said that it was 190 beats per minute. He asked if it was okay to call an ambulance. I said "no," thinking it would just pass.
Almost an hour later, I had him call my fiancé who took me to the hospital. My heart rate was 190 beats per minute, and it took them almost 3 hours to bring it down with medication to 100-120 beats per minute.

The next day, I went to see a cardiologist who referred me to an EP doctor. He did a tilt table test, and from what he found, it was IST. I was so frightened when he told me.
I left and went to another doctor. He, unfortunately, did not even believe in any type of dysautonomia. At this point, I was forced to quit nursing school and leave my jobs. I spent all my days sleeping on the couch. I had no energy to even move.

I kept fighting and made my way the Cleveland Clinic in Ohio. The doctor I saw there ran tons of tests and said the same thing my original doctor had said, IST.
Now, my symptoms have grown and became much worse. I'm going to go back to the first doctor that I saw in hopes for better answers. This is where I stand now with everything - lost and confused, hoping for just a part of my life back. I have tried every medication in the book, but nothing seems to help me. Shortly after getting sick, I had to have my gallbladder taken out. For some unknown reason, it became very sick and was not functioning at all.

I suffer from the same symptoms as others on DINET: constant nausea, dizziness, palpations, chest pain, fatigue, tremors, trouble sleeping, trouble breathing, and many more symptoms that come and go.

I've learned to enjoy the small things in life, and when I have one of my very rare good days, I surround myself with friends and family and enjoy every moment of it. Without the love of them and my mom pushing me to keep going, I might have given up a long time ago. This condition is hard to live with and hard to explain to others. They don't understand it or even believe it's as bad as I say.  

Don't ever give up the fight, guys. Enjoy the small moments.
Thank you for reading my story.

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