I Have Postural Orthostatic Tachycardia Syndrome
Pots Syndrome..help For A Helpless Situation (getting Diagnosed)?
By:
possiblypots
Written on February 15th, 2013
Let me start by saying I have not been officially diagnosed with pots..which is where I need advice.
I am 21 years old and have had bizzare symptoms from age 12. My symptoms consist of fatigue, dizziness upon standing, brain fog, nausea, constantly being cold, blue splotchy legs, flushing, and my main (also scariest) is my heart rate and palpations..long list I know :/ Growing up nobody really believed me, said it was an attention thing, so I was unable to seek medical care until I married at 15 (young, don't judge ). The first time I sought help was after having an episode where my heart was beating out of my chest. I rushed to the hospital - keep in mind its a small community hospital- where they assumed I had been taking crack. Upon a drug screening that revealed I was not a drug user they became concerned. After waiting an hour my heart rate returned to normal, until I stood up, which it elevated from 80 to 170. They had no answers and for the next 3 hours kept making me lay down and sit up. I was quite the attraction and every few mins heard the medical staff whispering to one another "you have to come see this girl stand up..to bad I wasn't amused. Needless to say since then I can't count the number of er visits I have under my belt! I was also seeing a cardiologist who conducted ekg, echo, and a 24 hours holter test. Which of course all came back normal. Now I'm always told its anxiety, an eating disorder (I'm 120 pounds and eat all the time!), or that it just happens to girls sometimes. Im young, physically fit and my heart rate is always 130+, the highest it has ever been is 200. I was put on a beta blocker called nadalol by my gyno during pregnancy, but when i take it my resting rate drops to 40, so i was taken off..this is not something that just happens! I also have children and was told it was a result of pregnancy and when I tell them I've had it since childhood I'm just ignored.
I'm tired, frustrated and depressed..being officially diagnosed will be the happiest day in my life, I just want people to understand and quit calling me crazy! Here's the problem? I have no insurance or money..secondly no doctor in my state (Mississippi) specializes in pots. Has anyone ever been in this situation? I feel like its hopeless. Also when, someday, I can afford insurance, what doctors would you recommend? Thanks for any help! This has been a long and confusing journey.
I am 21 years old and have had bizzare symptoms from age 12. My symptoms consist of fatigue, dizziness upon standing, brain fog, nausea, constantly being cold, blue splotchy legs, flushing, and my main (also scariest) is my heart rate and palpations..long list I know :/ Growing up nobody really believed me, said it was an attention thing, so I was unable to seek medical care until I married at 15 (young, don't judge ). The first time I sought help was after having an episode where my heart was beating out of my chest. I rushed to the hospital - keep in mind its a small community hospital- where they assumed I had been taking crack. Upon a drug screening that revealed I was not a drug user they became concerned. After waiting an hour my heart rate returned to normal, until I stood up, which it elevated from 80 to 170. They had no answers and for the next 3 hours kept making me lay down and sit up. I was quite the attraction and every few mins heard the medical staff whispering to one another "you have to come see this girl stand up..to bad I wasn't amused. Needless to say since then I can't count the number of er visits I have under my belt! I was also seeing a cardiologist who conducted ekg, echo, and a 24 hours holter test. Which of course all came back normal. Now I'm always told its anxiety, an eating disorder (I'm 120 pounds and eat all the time!), or that it just happens to girls sometimes. Im young, physically fit and my heart rate is always 130+, the highest it has ever been is 200. I was put on a beta blocker called nadalol by my gyno during pregnancy, but when i take it my resting rate drops to 40, so i was taken off..this is not something that just happens! I also have children and was told it was a result of pregnancy and when I tell them I've had it since childhood I'm just ignored.
I'm tired, frustrated and depressed..being officially diagnosed will be the happiest day in my life, I just want people to understand and quit calling me crazy! Here's the problem? I have no insurance or money..secondly no doctor in my state (Mississippi) specializes in pots. Has anyone ever been in this situation? I feel like its hopeless. Also when, someday, I can afford insurance, what doctors would you recommend? Thanks for any help! This has been a long and confusing journey.
By:
possiblypots
Age:
18-21
,
Female
3
responses
