klcowley Posted December 21, 2011 Report Share Posted December 21, 2011 Hello. I have some symptoms that I was wondering if you could all help me out with. I have been to a cardiologist and had workups done many many times. Heart monitors the whole thing. Structurally my heart is working fine. I feel dizzy, light headed, shaky hands, nausea at night, fast heart rate, feeling like I am going to faint (have fainted a few times), chest pain, chest pressure, weakness - mostly in my legs, and feeling like my brain doesn't work. I have taken my blood pressure (as recommended by my cardiologist) and when sitting it is always the same. But I noticed when I stand it is much higher. Just this morning standing after about 20 minutes my stats were this (taken one after another):108/69 with a pulse of 106117/87 with a pulse of 106Then after laying down for about 5 minutes my stats were this:98/62 with a pulse of 5391/60 with a pulse of 60.Do my symptoms/stats sound like pots? My cardiologist said no, but I know he doesn't understand dysautonomia as much as others do, because he mentioned that if I am having autonomic dysfunction than I might need to go somewhere else like the mayo clinic for some help because no one in my area knows what to do with it.Any input would be appreciated! Thank you! Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted December 21, 2011 Report Share Posted December 21, 2011 Hi and welcome to the forum! Your symptoms sound very much like POTS and like what I experience with the dizziness, weakness, shakiness, etc. Also, your pulse going from 50-60s to over a hundred when you go from sitting to standing sounds almost like the definition of POTS (a raise in heart rate of more than 30 within 10 minutes of standing). To qualify that though, I had a nurse who does Tilt Table testing tell me that they don't necessarily consider the raise in 30 bpm to mean someone definitely has POTS, but to me it sounds like your symptoms are very similar to many of us here!Have you seen the physician list on this site: http://www.dinet.org/physicians.htm Like you said, perhaps the doctor you're seeing just isn't very familiar with the disease. Having a good, educated doctor is invaluable in helping to figure this out! Good luck to you and I hope you find the answers you need! Quote Link to comment Share on other sites More sharing options...
JWPotsMom Posted December 21, 2011 Report Share Posted December 21, 2011 I had a nurse who does Tilt Table testing tell me that they don't necessarily consider the raise in 30 bpm to mean someone definitely has POTSCan you elaborate? I was thinking that was the qualifying test. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted December 21, 2011 Report Share Posted December 21, 2011 Hi JI had a nurse who does Tilt Table testing tell me that they don't necessarily consider the raise in 30 bpm to mean someone definitely has POTSCan you elaborate? I was thinking that was the qualifying test.I wish I could elaborate more, because at the time I was told this, I didn't know enough about POTS to ask a lot of questions. This was also during my tilt table test, so I was also on the verge of passing out during the conversation. What I recall is that I asked if the test was just looking to see if my pulse went up 30 bpm because that's what I'd thought the definition of POTS was, but the nurse administering the test said that's not necessarily the case. She told me that everyone's heart rate goes up upon standing, so they're looking for other indicators as well. Of course, now that I've been diagnosed (my heart rate went up, then bp went up, then dropped waaaay down during the test to 40/20) and read more extensively about POTS, the 30 bpm criteria is what I always see. It's true most people have a raise in heart rate upon standing, but not to that extent.I guess at the time I just deferred to what I expected was her expertise in the area. I recall someone else posting here that a doctor told her the same thing--her pulse went up 30 bpm but her doctor would not make the diagnosis of POTS.Sorry if my post was confusing or misleading--I'm not at all saying that something is or is not POTS, but just trying to say that not all medical professionals seem to agree upon the criteria for a diagnosis. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 21, 2011 Report Share Posted December 21, 2011 A Professor who is a leading researcher in POTs once told me that a postural increase on standing only occurs in POTS and baroreflex failure.What you describe sounds very much like POTS to me. Hope you get a diagnosis and find some treatment that helps! Quote Link to comment Share on other sites More sharing options...
JWPotsMom Posted December 21, 2011 Report Share Posted December 21, 2011 Ah, the elusive DX. . . ! I just wondered what further requirements that nurse thought there needed to be. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.