Faye Posted December 16, 2015 Report Share Posted December 16, 2015 Today met with a local cardiologist for a 2nd opinion and thoughts....after not being satisfied with first cardiologist ... This one said he has been treating POTS patience for about a decade and at least took a full history asked questions listened to all my symptoms....he gave me a choice and thoughts.....come off beta blockers and do tilt table in two weeks or we could start on new meds with trial and error....he is 95% sure it's PoTs...he said either way the treatments could be trail and error while we look at ....forgot the name something to do with cell and nervous not being right....having one of those days nothing is working...but in any case I proposed come off meds, and if while waiting I find my symptoms are unbearable, I will call and start back on beta blocker and new med... Something with an M ... I know I have read about it online....In office did a mini poor man tilt with ekg....as well.....my brain is not focused today... But I hope I made the right choice I really want to do the TTT and have as pure results as possible.i suppose worse case is I can't cope and I start beta blocker and start on the new meds while getting insurance to agree yo other testing... Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 17, 2015 Report Share Posted December 17, 2015 Midodrine? Quote Link to comment Share on other sites More sharing options...
angelloz Posted December 17, 2015 Report Share Posted December 17, 2015 If you can hang in there and wait...the tilt table would give you and the doctor some good information I think. But if it seems unbearable stressing too much isn't good either. Good luck and let us know how it all shakes out! Quote Link to comment Share on other sites More sharing options...
statesof Posted December 17, 2015 Report Share Posted December 17, 2015 It may be good to get the TTT done just to have it, and have a more definitive diagnosis. Last year I had to do a treadmill test which was causing me much more fear than the TTT, but I just told myself I basically had to do it if I wanted to have a better chance of getting better, or helping my doctors understand what's really the problem with me. Its kind of the pain now = better days in the future kind of thinking. What symptoms are you dealing with that are most distressing? and how does the beta blocker affect them? Quote Link to comment Share on other sites More sharing options...
Faye Posted December 17, 2015 Author Report Share Posted December 17, 2015 Hello allYes Midodrine was the name of the medication. I want badly to try but my pulse resting is sticking to 120 and standing is 180 to 199.The tightness in my chest, short of breath, and dizzy when standing is tough, if I lay down it will go down and bounces from 100-115. But I have to work and can't take time off....with the beta blocker my average resting rate is about 90 and laying down 75 to low 80...and standing is about 120 to 135.. Of coarse more brain fog or confusion than normal and it has been 30 hours....I am going to try and stick it out....and cope, but a part of me is already tired of the tight chest and shorter breaths...I keep saying as long as I don't pass out keep going... Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 17, 2015 Report Share Posted December 17, 2015 Any way you could use a wheelchair to help while you are off the Beta Blocker? I feel for you, it's tough when heart rates are that high. Quote Link to comment Share on other sites More sharing options...
statesof Posted December 18, 2015 Report Share Posted December 18, 2015 Have you tried using compression stockings at all to see if there's any symptom improvement? Quote Link to comment Share on other sites More sharing options...
Faye Posted December 18, 2015 Author Report Share Posted December 18, 2015 Hello all!I am blessed that at this time a telecommuter and work from home sitting at a computer. Normally I go for walks but these days been a bit challenging....I wear compression full stocking from the time I open my eyes, to end of day, before my feet touch the floor I drink 16 oz or pedalyte and water combo. These things actually help, I had no idea until I got in a hurry and didn't do it....and I eat every two hours and have Daly snacks ....Today I actually had some better numbers while working for about an hour ....but it's the tightness in the chest that is so uncomfortable ...my rates are jumping a bit around but attribute it to the beta blocker coming out of system...Sometimes I have noticed not just now but before my heart rate can have the same # and feel different in terms of palpitations...could be a low # or high...If you know of any way to get rid of the tightness that would be great! I have tried meditation and breathing as well....just to make sure I am totally relaxed and back to taking me anti anxiety meds just as a double ck....yet that tightness won't go...Maybe it is trying to adjust had a few moments where I got very lighted while sitting and working but by the time the wave came and done and my bp was fine...few times funny spotty vision and then gone...I am very confused by what my body is doing....today is day 3, still fighting.... Quote Link to comment Share on other sites More sharing options...
Faye Posted December 29, 2015 Author Report Share Posted December 29, 2015 Tomorrow tilt table test... Made 14 days no beta blockers, a few really rough patches but wanted to say thanks to you all...it gave me the strength to make it. A little nervous, don't like IV.... Not worried about passing out...and ready to see what my body will do. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 30, 2015 Report Share Posted December 30, 2015 Good luck on your test, Faye! Quote Link to comment Share on other sites More sharing options...
corina Posted December 30, 2015 Report Share Posted December 30, 2015 Goodd luck Faye, hope you'll get the answers you need! Quote Link to comment Share on other sites More sharing options...
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