New - Glad I Found This Forum

[TCP100]

Hello,

I'm so glad that I found this forum. I wanted to introduce myself. I'm 41 years old and I first began having symptoms when I was 18. I began fainting and falling when I stood up. During this time the syncope faints went away after a couple of months and my heart just began beating faster all the time. Especially upon standing and would sweat like I've never seen anyone sweat.  I went to tons of doctors in my late teens and early 20s and they could never find out what the problem was for me. I was diagnosed by one doctor having Mitral Valve Prolapse. I think it was an inaccurate diagnosis. Well as things progressed quickly my heart starting beating really fast when I stood up and because my heart was always beating so fast I couldn't do the things I used to do and people just thought I was lazy. Many family members were wanting me to go to school and go to work so I just gave up sort of and went to school and got a job. I was a good athlete in my teens and could run forever, now in my early 20s I would get out of breath just walking.  Finally, when I was 19 my doctor prescribed me propranolol and stayed on it until I graduated to 50mg of Atenolol twice per day when I was 24. Since this time I have really high blood pressure while standing but when I sit or recline is goes low. I also take Losartan. I pretty much gave up trying to find out what was wrong with me until I started doing research again recently. There really wasn't internet when I was 18 so my research was just out of cheap medical books at the book stores trying to figure it out since the Doctors couldn't. I had to live and so I just sucked it up for years and the beta blockers at least allowed me to function even though I know that I am nothing like what I could have been or would be now if this hadn't affected me. This problem has really has changed my life but I didn't give up. I didn't have a choice and just had to fight through it. During the onset of whatever caused this my vision changed as well. I see what looks like a fuzzy tv screen - like little fish dancing around - all the time in front of my eyes. I've ignored it over the years but they are always there. Also, when the lights are low I see shadows in my peripheral vision that fade in and out. Also, I don't know if anyone else has this but my back became really sensitive. So if someone just barely taps me on the back it will sting. 

I think the years of being on beta blockers have sort of taken away the zest for life. I really hope this forum helps me take the necessary steps to find a way that works for me. I found a doctor in Dallas on here that I would like to visit.  So thank goodness for that. I live in Houston.

[StayAtHomeMom]

Welcome. I have recently been diagnosed with POTS. I can only confirm my heart rate jumping since november but looking back i wonder if it started much earlier. I just turned 31 and i find it frustrating too. I have to have my 14 year old son help me just to pick up groceries. I hope you find your answers.

[TCP100]

Thank you and I'm sorry for what you're going through. It's really tough. 

[MomtoGiuliana]

Welcome to the forum and glad you found us.  Glad the physician list was helpful to you.  Hope you can get answers and help from a specialist.

[statesof]

Hey TCP100 glad you found the forum. I have many of the visual symptoms you have describe, maybe even more. I get "visual snow" which is sort of like having tv static across your visual field, I have negative afterimages going on all the time, sometimes see motion in my peripheral vision even when nothing is there, sensitivity to light, it takes longer for my vision to adjust when going from a bright room to a dark room, I get short trials after objects as well (like if you wave your hand in front of your face) that last maybe half a second. I have POTS, migraine, and depersonalization disorder. My doctors believe my visual symptoms are probably more linked to depersonalization disorder or my migraine brain.