khudsonwv

goldicedance - i was given octreotide and midodrine at my doctor in WV. one gave me crushing headaches and attacked my kidneys ( not fun )--- the other gave me crushing headaches and made my skin crawl ( like millions of bugs) - then he tried florinef and that made things worse too so the doctor got pretty frustrated and so did i - it was quite a disappointment - as i was sure one of them would help.. but i have my fingers crossed that something will come along that this crazy body of mine can tolerate lol....

Karen - i am unable to tolerate any meds including florinef, octreotide, beta blockers etc. i am extremely sensative to all chemicals - meds etc - this is due to the POTS - was not like this before. the pacemaker did not stop my problems it has actually made them much worse. it only controls my brady symptoms but i still have severe arrythmyias because my heart still wants to race but cannot due to the damage from the ablations. my bp ranges from 90/60 and down. i am unable to care for my children - cannot shower, shave my legs, cook, brushing my teeth is difficult and someone has to wash my hair.. i am having severe muscle weakness and i fall daily.. i never thought that this would go this far.. i was in optimal physical condition prior to having my daughter - i actually jogged 2 miles the day before she was born and now i cannot walk 20 ft without haivng to sit down. the doctors say that my case is now very difficult and are not sure what to do.. i will be going to a new specialist soon as my other one is at a loss for why this is progressing so quickly... i have been told that ablations are the worst thing in the world for a person with POTS but we simply did not know that is what was wrong with me ( i had never heard of it) - i was originally dx with SVT, PSVT, inappropriate sinus tach, A-fib and aflutter. All symptoms of POTS but it was too late the damage was done - i am soooo glad that i found this site.. i was beginning to think that i was alone and now i know i can find hope that this may get better!!!

his procedure should be fairly simple - as said previously the original implant is the hardest. There is a possibility that the leads could need to replaced due to age of device etc. if this is the case a new pacemaker may be implanted to make it easier. Due to his age an overnight observation will probably be required and then he should be as good as new.. best of luck.. my prayers are with him...

I am fairly new to this forum so bear with me ... my POTS is postpartum - two weeks after delivery my sitting HR was at 130 with my standing HR going as high as 250 - my BP has always been low 90/60 and with the high heart rate - would go to 50/30 and out i would go - i was unable to tolerate any meds and because they didn't know what was wrong I underwent a total of 10 ablations which sent me into 3rd degree heart block and now i have a pacemaker --- tachycardias were horrible and scary but at least now i have a diagnosis and hopefully we can beat this thing.. i just wish the dx would have come prior to the ablations - i wouldnt be 35 with a pacemaker !!!! best of luck to you

I was diagnosed originally with PSTV, STV. inappropriate sinus tach, afib and aflutter - this after the birth of my second child.. i too had 1 ablasion last June and 9 in July - became even sicker - then diagnosed with 3rd degree heart block and now a permanent pace maker .. was diagnosed with POTS last month - i think the ablasions may have been the nail in my coffin - i have never felt worse and am unable to tolerate any meds.. i wish i would have known about POTS sooner.....and am soo thankful that i found this site.