Originally Posted by rach73

Hi,

Yeah I still lurk lol! Ive been on more frequently recently as Ive developed swallowing problems that seem to ease with mestinon. I havent bothered to tell any of my Drs as they all insist I dont have MG and because they are actually trying to help me for the first time in years I dont want to rock the boat. Its a sad situation to be in!

I have a wonderful speech therapist who is learning about Ehlers Danlos syndrome with me to try and help the swallowing and strengthen my voice because it goes really sexy after a few minutes of talking lol!

Jana - that wasnt a poor mans tilt table test. How to do it is to lie down in a darkened room for 20 mins and relax. Take your resting heart rate. Then Stand (dont sit just stand) and dont move (your body if you have problems will try and jig around to stop you fainting etc) Take your heart rate at 2 mins, 5 mins, 10 mins, 20 mins. If you can stand for that long. POTS is indicated if your heart rate goes above 120bpm or raises by 30-40 bpm and stays up.

Oh, Rach!! Thanks soooo much! I AM going to do this! I've almost passed out so many times from kneeling/squatting and then getting up -- there MUST be something odd going on. (My brain fog -- I forgot about this until I read your post).

I actually have done the full on test and threw up at the 10min point. Which was fun because I was strapped to a table at the time. The poor nurse had to play catch which was above and beyond the call of duty.

You dont just have to take your heart rate if you have a blood pressure monitor you could use that if it includes HR as well.

Your BP is considered low normal in the UK you have to be below 90/60 to be classed as having a low bp, but the world health authority says 100/60. I basically feel ill if I am below 115/60. I havent had blood pressure that high for years and I will regularly drop to 72/40! What fun.

When I get a bad migraine, my BP is "normal" -- LOL. Like 120/80 or even 130/85. I also have "white coat" -- so, my BP seems normal at EVERY doctor's appointment.

Im glad you found the info useful

Rach
ps High Annie!