JillCT Posted July 6, 2018 Report Share Posted July 6, 2018 Hi All, I'm getting my tilt table test on Monday, but I've tracked my HR and BP from resting (supine) to standing many times, including at the doctor's office today. I have a pretty low resting HR of about 60 bpm. It consistently goes up by 30 bpm when I stand and it is sustained that way for 10 minutes. This morning at the doctor's office, I started at 66 and ended at 115 after 5 minutes. Everything I've read says to be diagnosed with POTS, you must increase by 30 bpm OR increase above 120 bpm. My doctor brushed off POTS because I did not get to 120 but he did order the TTT. I relate so much to everything I read about POTS - it sounds so much like me! But am I not "sick enough" to have it because my HR doesn't go up enough? Or do some people with low resting HR still have it? Maybe there's another explanation other than POTS, but I haven't found it yet! I just want my life back! Thanks for reading! Jill Quote Link to comment Share on other sites More sharing options...
Shane Posted July 6, 2018 Report Share Posted July 6, 2018 @JillCT My own experience is I did a home TTT and had much the same result you are describing (which I think would meet the criteria for POTS). However, I went to Yale and got the TTT and it was negative. I've been concerned enough about my symptoms that I am heading to Boston (BIDMC) to be retested and have additional ANS testing. Others probably have better advice, but having a real TTT will probably get you more answers. I wish you luck and health. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 6, 2018 Report Share Posted July 6, 2018 Everyone's body is different. That "magic" HR number is different for everyone that may cause symptoms. That being said you are right. All my research says the same thing: OR. Make sure you have a knowledgeable doctor interpret your results. An electrophysiologist, cardiologist, or neurologist that at least has some idea what they are looking at. My POTS specialist is a neurologist and made me redo all of my previous testing to rule things out because "they never do these tests right" lol! My doctor that diagnosed me had no other POTS patients but I brought my data from my Poor Man's Tilt Table that I took everyday for a month. He put me on a TTT and did his research. He was a wonderful cardiologist and one the few doctors that took me serious. I will definitely miss him. Good luck Monday and if you can, try to get a driver for your TTT. It can be exhausting standing there for 45 minutes. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 6, 2018 Report Share Posted July 6, 2018 4 hours ago, Shane said: @JillCT My own experience is I did a home TTT and had much the same result you are describing (which I think would meet the criteria for POTS). However, I went to Yale and got the TTT and it was negative. I've been concerned enough about my symptoms that I am heading to Boston (BIDMC) to be retested and have additional ANS testing. Others probably have better advice, but having a real TTT will probably get you more answers. I wish you luck and health. I go to BIDMC. Let me know how it goes? Like, what tests get done. I had a TTT there and it was negative. But it’s all they did sadly. Nothing else. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 6, 2018 Report Share Posted July 6, 2018 @JillCT - TTT's are not the end-all of diagnostic tests and also often have false-negatives. And most of all - the cardiologist who reads the test must know HOW to read them. I had 2 TTT's - one I passed out and they said it was NCS, the other was clearly positive for POTS but the cardiologist ( an EP, very arrogant and dismissive of anything POTS related ) said it was " unremarkable ". Later - when I got an autonomic specialist who reviewed those tests said it was positive for POTS. If you go from 66 to 115 and it stays in that range than you do not have to go to 120. It is EITHER an increase of 30 BPM OR a HR above 120. In other words - if your resting HR is 100 and you go to 121 and stay there than that is POTS, although it is only an increase of 21 BPM. --- I agree with @StayAtHomeMom - definitely get someone to go with you, if you pass out you will not be able to drive yourself. --- About your comment that you "are not sick enough" to have POTS - be glad about that! You do not have to be disabled to have it, many people have mild symptoms or even are only symptomatic at certain times. If you have a mild version than you can take many steps to control your symptoms. Best of luck on Monday - please let us know how it went. I will watch for your update!!! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 6, 2018 Report Share Posted July 6, 2018 12 minutes ago, Pistol said: I agree with @StayAtHomeMom - definitely get someone to go with you, if you pass out you will not be able to drive yourself. --- About your comment that you "are not sick enough" to have POTS - be glad about that! You do not have to be disabled to have it, many people have mild symptoms or even are only symptomatic at certain times. If you have a mild version than you can take many steps to control your symptoms. Best of luck on Monday - please let us know how it went. I will watch for your update!!! I didn't pass out (never have) and it was exhausting. Like running as fast and you can for 45 minutes. I think I am one of the lucky few mild cases. I never felt that way til I met my replacement cardiologist back in May and she said how impressed I was with how well I function. Partly it is the meds but seeing some people's stories makes me think mine isn't so bad. But I think I have had it most of my life and maybe that is why it is mild. Quote Link to comment Share on other sites More sharing options...
JillCT Posted July 6, 2018 Author Report Share Posted July 6, 2018 Thank you all for your posts and encouragement so far! I just did the poor man's test at home again. Went from 55 resting to 105 standing. I am having a cardiologist who is listed as being a good POTS doctor do my TTT on Monday. But he is also the one who seemed dismissive since I wasn't getting to the "magic" 120. I will definitely have someone drive me on Monday - I haven't been able to drive (or work) in 2 months. I am too dizzy. I'm also being testing for vestibular causes for my dizziness. Monday should be a telling day. Even if I don't have POTS, there is something that is not right about my HR going up 50 bpm and me not being able to stand for a few minutes! I just want to know what it is and start getting better if possible! Thanks again for the support! I'll keep you posted when I learn more! Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted July 6, 2018 Report Share Posted July 6, 2018 At home on a pulse oximeter I normally have a heart rate increase of about 20 to 30. On the TTT (which I admit I was a bit stressed about and feeling rubbish from the 2 hour journey) they recorded a 50 BPM increase up to 150bpm. Along with that I recorded a BP that started at 134/77 then started dropping then maxed out at 180/104. I've never recorded that level of change (but I normally don't stay vertical when I feel like that) so you can't be sure what the test will show before taking it. Round here they say a significant pulse rate rise of the order of 30bpm or more than 120bpm (except if pulse rate very high at all times) I don't actually have a POTS diagnosis, as they are still trying to work out what is wrong. My doctor considers this as POTS, but she is wanting a specialist to come up with something other than unexplained dysautonomia. Hope the test is not bad for you and helps you move forward with your health problems, whatever the results. (I'd recommend not driving to the test, just in case you feel rough afterwards) Quote Link to comment Share on other sites More sharing options...
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