Posts: 10,906
4/12/12 4:16 P

Deanna,
WOW your friend is alot worse off than we are. Omgosh I could not even imaging having POTS and asthma I bet that makes it really difficult for you to work out.

I totally hear ya about having other medical issues on top of POTS. I am reading this Patient Handbook from the National Dysautonomia Research Foundation that I was able to print for FREE and it stated that when people have dysautonomia's it is b/c part of their system is shutting down so the other parts are working overtime to compensate and sometimes drs have what the other causes are and sometimes not, especially since there is very little known about Dysautonomias.

I couldn't even find an organization or foundation for this you know like normal ones for MS, Leukemia, Heart Society, etc etc. If you guys know of any I sure would like to contact them.

I have even thought about starting a support group here, would have to research how to do it and all.

Good Luck to everyone, I know how hard this is on you all.
Maria

Posts: 1,682
4/12/12 11:28 A

I have a friend with NCS (for which she has a pacemaker) as well as POTS. So she has one disorder which causes her heart to stop (hence the pacemaker), and another disorder which causes her heart rate to increase. In fact, the POTS causes so much stress on her pacemakers (she is on her fourth) that they to burn out twice as fast as they otherwise would.

I have POTS and asthma, which together make life *interesting*, but I am so thankful that I don't need to deal with the stuff that some other POTSies do.

((supportive hugs))

current weight: 226.8

255 228.75 202.5 176.25

150

Posts: 10,906
4/11/12 3:17 P

WOW ARB19571 I am so sorry you had to go through that.
Good news is your feeling better and they were able to take care of it.
I have POTS so where my blood pressure is always low and my heart rate fast. :(
How are you handling exercising and eating?
Maria

SparkPoints: (2,561)
Fitness Minutes: (3,851)
Posts: 26
4/11/12 1:27 P

Hello everyone.. I was at work when I felt like I was starting to blackout, I went to sit in the break room and couldn't even hold my head up finally I passed out and hit the floor. But hitting the floor might of been what made me gain consciousness. My BP was 60/30 when EMS got there. I took a week off work and when I returned I was feeling fantastic. (changes had been made in my favor) But when I had my tilt table test my heart stopped for 15 seconds, so I was sent straight to the hospital for a pacemaker. I my case my heart slows down and my pacemaker will take over in my heart rate falls below 60 beats per min.