Hi everyone! Im 18 years old.  I have been suffering from POTS for seven years.  First time that I knew something was wrong with me was at my seventh grade birthday party when I collapsed on the floor. Soon I was fainting almost twice a day.  I went to a local doctor who did a EKG on my heart. They flipped out and told me to pack my bags and head for a well known hospital in San Francisco.  I had hundreds of tests done, but no answers.  I went to a weekly appointment at this hospital for three years.  MRIs, Tilt Table Tests, etc.  Every test they could think of I had to do.  Still there was no explanation or diagnosis.  The doctors had figured out that I had a abnormal shaped heart and it had an extra "glob" dangling off of it.  After realizing that my weird shaped heart was not going to kill me, they focused more on my symptoms.  These included every symptom that has ever been reported in a POTS patient.  My doctor brought up my symptoms with a board of doctors and they thought maybe I had a very rare type of arrthymia.  The only way to find out though was to do a surgery to implant a loop monitor above my heart for a year.  So a few months later i lay on the operating table as they inserted my monitor.  I was a very athletic girl. I did soccer, basketball, track, and was very social.  After having my heart monitor in, all that was taken away from me.  Each month I had to go into the hospital and the doctors would download the information from my monitor.  After a year of hell, it was removed and there was no Arrythmia.  Angry my mom asked my doctor if I could be switched to Neurology because Cardiology was not coming up with anything.  After seeing a doctor in that department, he realized that I had symptoms that he could not understand.  There was some abnormality in my brain, but nothing that they could figure out.  Once again I was told to pack my bags and head for the Mayo Clinic in Rochester Minnesota.  After two weeks of testing, I was finally diagnosed with POTS.  It had taken five years to get a diagnosis! The doctor told me that there was really nothing that they could do for me.  I had tried so many of the medications advised for POTS, but none of them helped. I was so angry to learn that I had to live my life like this.  I went into a deep state of depression and was in and out of therapy for a few months.  After being put on Prozac, I noticed that my migranes went away.  It was nice to have relief from those.   So here I am.  I just graduated from high school.  I tried my hardest to make my teenage years as normal as possible.  I have learned to control the fainting by forcing myself to hyperventilate.  It kinda works, well it buys me time to sit down before I pass out.  I have a large scar on my chest from my surgery that will always remind me of everything that I have been through.  I am about ready to go to college.  I am terrified and honestly do not know if I can do it.  I am going far away and am going to try to be brave.  I have a single dorm room which hopefully will help.  I cannot tell you how terrified I am.  My symptoms are still so terrible and I spend a lot of time sleeping and being at home.  I am going to try my hardest to spread my wings and make an effort to go away to college.  

I just want everyone to know that I have been dealing with so much emotion about suffering from POTS. I do not want any sympathy I just want to share my story because it has been bottled up inside for so long.  I want to be normal and I am going to try to do everything in my power to be normal.  Thanks for reading this.  It feels really good to get it all out. :) 

buddy2121 buddy2121
6 Responses Jul 20, 2009

I am supposed to go to university of delaware... its still up in the air as to where i will be in september though. i may have to stay and go to a local school. have you found any relief from the pots or any treatments that helped? i have tried absolutely everything, although im now being seen by a great dr who is trying some new stuff. do u find exercise helpful and do u think you are getting better?<br />

I'm so sorry that I never responded to you Rebecca! Thanks for sharing your story! I go to the University of Portland in OR. Where are you thinking of heading? <br />
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It has been a crazy last two years. Being in college has been really tough, but it has also made me really strong. Dealing with all of the anxiety about being in college and being away from home plus dealing with POTS is horrible, but I know that I have to get through it because I cannot live my life sitting at home letting POTS take over my life. I have to be extra careful when it comes to everything. I have a safety plan set up in our public safety office so that they know everything. I have accommodations in all of my classes and all of the professors know my situation. It is really comforting to know that if anything goes wrong, they are all on the same page and can help me. <br />
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Also, it's so important to make good friends and let them know everything so that they can support you. A few days ago I fainted on campus and my friends were with me and knew right what to do and how to handle things. I am so motivated to finish college and become independent and I am not going to let my POTS bring me down in any way. Things are horrible some times and a lot of the time I just want to give up, but I don't consider that an option. If you have any questions about anything (college stuff, POTS stuff, anything) feel free to ask me! I promise I will respond sooner! Hope you are doing well! <br />

hi, if you are still interested, i'd like to know how you are doing now? its coming up on a year since i got diagnosed and i have college decisions one again coming up.<br />
thanks,<br />

I COMPLETELY UNDERSTAND. i to am 18, however i was only diagnosed this past year. i started feeling sick (completely out of nowhere... randomly one day), and 4 months later, after being wrongly diagnosed with lymes, thryoiditus, fibromyalgia, hormonal problems, and being told i was fine, i fainted on my tilt table test and pots came into the picture. before all of this, i was a varsity volleyball pla<x>yer, went out with friends on weekends, and looked foward to going away to college. that all came to a drastic hault in less than a month. i had to defer my college acceptance and i have basically been home for the past 10 months. its hard to see people and go out since im scared about fainting and my symptoms. this has lead to some anxiety attacks, depression, all that unfair stuff thats hard to control. i tried antidepressants (moreso for the fatigue at the time and the blood pressure), and it made me throw up, so did all the other medicines i took for pots symptoms. so its been really hard to be open to new treatments, since everything i try makes me feel worse or get sicker. i give you so much credit for trying college with your symptoms, and i understand how scared you are. maybe an anxiety medication or something like that can help you through? if i find anything that helps me, i will be sure to let you know. what school do you go to btw?<br />

hi thanks for sharing but could i ask what pots is?.

Thank you so much for sharing your story with us!<br />
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You are stronger than alot of us!<br />
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Best wishes for your long FUTURE!