Pots Has Derailed My Life.

I am 21 years old.  In the winter of 2008 i started developing terrible llight sensitivity while in college.  At first it would come and go, then gradually it became worse and worse until i experienced it 24/7, inenvitably resulting in me losing the majority of my depth perception.  At the time, i had no health insurance and tried to deal with it.  Then one day while sitting in my lecture class my depth perception suddenly vanished, my eyes started to black out, my heart was racing, i couldnt breathe, became confussed, disoriented and always completely blacked out.  after that episode i started near fainting every day, a few times a day, mostly when i was sitting or standing for too long. 

      At the time i was in my final semester of cosmetology school, and with my symptoms becoming worse and worse i was unable to drive, my eyes hurt so bad from light i couldn't leave me house without blackened sunglasses, i had a hard time walking with my loss of depth perception and with my chronic fainting.  By the summer of 2009 i was so ill i couldn't attend school, having to halt my studies, causing my "life plan" to be delayed.  I thought i was having panic attacks and decided to take the summer semester off to try to fix myself.  But summer came and went, i couldnt leave my house, couldn't drive, began to lose touch with my friends, i fell into a deep depression for the fact i felt like my life was falling apart from this weird unknown illness.  Since cosmetology school was so demanding with having to stand for 7 hours straight, 5 days a week, i decided it would be impossible for me to continue my schooling in this state. 

      In the fall of 2009, i FINALLY got health insurance, but to keep it i had to be enrolled fulltime in school.  I enrolled in basic education classes, but attending them regularly was near impossible.  Just sitting in class for an hour or 2 would result in me near-fainting, or actually fainting.  Since i couldn't drive, i depended  on friends and loved ones to taxi me to and from college.  This was a terrible time in my life.  I had no yet adjusted to the frequent fainting, the blacked out eyes, the loss of depth perception, the numbness in my limbs, freezing cold hands and feet, racing or extremely low heart rate.  My doctors had abslutely NO clue what was wrong with me.  I first saw a optometrist who said my visiion was fine and referred me to a opthamologist.  He gave me about 30 eye tests, time and time again, dilated my pupils multiple times and found out i had swollen optic nerves and "drusen" which was deposits forming over my optic nerve which explained why i ws having eye problems.  It didn't explain my fainting and numbness in my limbs so i THEN saw a neurologist who i think assumed i was being a big faker and sent me to a family practice doctor who then said she thought i had early signs of MS disease and requested me to get an MRI. 

      After 2 MRI's, they saw nothing in my brain that showed scaring associated with MS, and sent me back to the neurologist who THEN again sent me to another doctor, a cardiologist who gave me a halter monitor to wear and BINGO!!  they saw i was having a irregular heart rate.  It would jump to 170, then suddenly drop to 40.  resulting in my feeling like i was going to faint. He said it was called POTs, and said treatment is not always effective.  He gave me propranolol to help lower my heart rate, i took it for over a month, and had nothing but bad side effects, like even number arms, and felt like i was going to faint a little more often :(

     Since i was diagnosed and receieved the propranolol i have lost my health insurance, due to the fact that my father's job was hit hard by the recession and he lost his health insurance for the both of us.  I still struggle daily with my symptoms, i cannot go out with my friends, i can't drive, i can't go see a movie with my boyfriend, i have the hardest time attending class bc of the fainting and depth perception problems.  typically my day consists of staying home, doing school work, watching tv, exercising to try to keep my body strong since i cant use it like i used to (and since im at home, if i faint, i dont have to worry about making a scene in a public gym).  I try to get out with my friends as much as possible, usually every other weekend if i feel well enough. 

     Though i absolutely HATE the way my life is going, i am extremely thankful for the people around me who tirelessly help me live life as normally as possible.  My boyfriend is amazing and has stayed by my side, taken me to doctors appointment, taxi'ed me around to run errands, and keeps my spirits up.  My family has been supportive and as caring as they can be helping me where they can.  I still live in fear that this will never go away.  I could never imagine living my life like this.  I pray and beg that i get better, i never expected to spend a year and 1/2 of my 20's like this.  I feel like i've missed out on so much that other people my age take forgranted.  parties, independance, socializing...ATTENDING COLLEGE.  if i ever get better, i am NEVER and i mean NEVER taking those little things forgranted again.

    

Ztraceny Ztraceny
18-21, F
5 Responses Mar 9, 2010

yes, i definetly feel like people around me try to "pretend" to understand how encompassing it is in my life. Either that, or they try to down play the illness. i constantly am having to explain myself to people who try to tell me, "you can just ignore it, and move on" little do they know, its NOT that simple lol.

Sounds like me, I found out I had pots when I was 21, I hate that the people around me dont know how it feels, cause they say they no what im going through, but I think if you aint got it you dont know, so its nice to know there people going through what I am.

really? im so glad im not alone. maybe we could chat some time. it sucks being alone in this ya kno?

Wow your story sounds a lot like mine.

Wow your story sounds a lot like mine.