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I am glad I did it but it was horrible in my case, I have IST and NCS, with convulsions he said my bp was unreadable on the auto cuff but when he took it manually it was 60/30 he said it was all over the place along with my heartrate. He said my autonomic system is very out of whack, he moved me up to 0.4 mg a day of florinef. And plans for other meds if this doesn't work. He also said after I get insurance I have to get treatment for my digestion issues, and neuropathy. I don't want to go into it but that was the worst thing ever, the EP was shocked at how my hr and bp did. He was so interested in all that happened, I had horrible convulsions right before passing out. I pray I never have to do that again but am glad I went through with it. And I asked him why its not pots since it spiked above 30bpm, he said that they overlap but I have primary ist with pots, he said it wasn't the high rate but the dramatic fluctuations in all positions, that is worst in my case. It went up to 180, and fluxed between brady and tachy in all positions, no wonder I feel like crap at all times. I am so glad I finally know, he said that this isn't causing my neuropathy though, he thinks I need to go to vandy. He says it needs more testing but that this with my history is not a mild case of dysautonomia like the doc first thought. So definitely have support now, this is so encouraging.
Hello all, I posted last week about my cardio saying no need for testing or meds, Well that was the nurse... She messed something up. I got my records straight from the doc today and He has diagnosed me with NCS, IST, with frequent PAC's, and OI, along with sinus arrythmia which from what i understand sinus arrythmia is common. and concluded prognosis as poor functional status. He is planning on putting me on midodrine if i remain symptomatic on monday, which I am. so Finally some answers. this was after an old tilt test, 2 holter monitors 7 months apart from each other and an treadmill test where I only last 1 min and 1 sec before getting extremely symptomatic, now all of this was before my meds started. he said my hr went from 49 supine with BP of 120/70, then immediately after standing my hr jumped to 100, then at 1 minute 1 sec my hr went to 155 and bp only to 122/70. it never compensated for the hr change. now this is how i was before the meds so i do see that florinef has changed it up, but im still as miserable. so with my bp not compensating and all of this from what i researched this is PAF which had been mentioned to me before. does that sound accurate? also instead of waiting to go to the neurologist that said he would send me to vandy, im gonna ask my cardiologist about it. I just don't understand why he didnt tell me and my husband this in the office, i go back on Monday. I was ready to dump him over the letter that supposedly came from him, which obviously didnt. I am relieved, now to just put the pieces together. by the way could all this be why i have CVI, my legs are covered in varicosities.. For many years i suffered through and pushed and pushed myself, I have been sick for 18 years and instead of stopping at my limits i listened to doctors saying nothing was wrong so i worked at warehouses driving stand up fork lifts for 3 years straight working, at 12-16 hr shifts and at one time worked 12 hr shift and then as a night time job worked at fedex, I pushed myself over my limit many times i was passing out almost every week but they would just say anxiety so why wouldn't i push through. or maybe it was just dumb i was 16 when i started working luckily after i got married at 19 my hubby didn't want me to do it anymore plus hospital bills were adding up and i had just wiped myself out. I haven't worked in 5 years but now have my kids that I have trouble playing with because of this. Did i make it progress faster by pushing past my limits all these years. My mom and dad took me out of school because of the fainting from standing or playing my flute which i could never do, i guess i should have looked at it all and trusted myself instead of everyone else. I am afraid i made this worst because i believed the doctors. sorry i got long winded, this is all a little relieving but yet overwhelming because i havent been in that stress for 5 years but i am 10 times worst.. looks like progression to me, even though the doctors that did actually have a hint of it years ago said i would grow out of it by 20. i was 8 when they said this, I am alot worst than when i was 8. so looks like its not going away, hopefully i will just be able to get the right treatment finally and maybe have a life where im not fainting or my feet turning purple within seconds of standing and oh ugh the neuropathy that is so painful and then leaves my legs paralyzed for about 20 minutes leaving me to wonder if i will be able to walk again. ok sorry again i am done... I know that I am no longer alone on this as some of you have been so helpful to me and i appreciate it dearly,. Now that i have it in writing that im not crazy i feel much better...