rje11 Posted October 24, 2015 Report Share Posted October 24, 2015 I am new to the forum and have not been diagnosed with dysautonomia yet. I have appointments at Mayo in Rochester in early December. I have been reading about the autonomic testing they do, with one of them being the deep breathing test. It seems very simple, as you just breathe in and out for 5 seconds each and record the heart rate. I bought a pulse oximeter a while back at the urging of two of my docs, so I have tried doing this test at home. My question is - do some folks REALLY have a wide variance in heart rate just in those five seconds of breathing in and out? My heart rate only varies by 2-3 bpm so I am assuming I am not doing it right or my oximeter is not sensitive enough. I have checked my bp with my Omron digital cuff at the same time and gotten the same heart rate, so I know it is accurate to a degree at least. I just find it hard to believe that some folks heart rate goes up and down like 10-20 bpm during this test? Am I misunderstanding it?I have lots of symptoms and issues but I don't want to list them right now - just wanted to ask this question. ;-) Thanks!Rje Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 24, 2015 Report Share Posted October 24, 2015 My HR did not change during that part of the breathing tests at my docs office. But, I can slow my heart rate through meditative breathing and I also subconsciously hold my breath when I am tachycardic, presumably because my body is trying to slow my hr. Quote Link to comment Share on other sites More sharing options...
rje11 Posted October 24, 2015 Author Report Share Posted October 24, 2015 Did they consider the fact that it didn't change much a positive or negative finding? My problem is not a fast heart rate - it is one that hardly varies at all, which I think is a sign of cardiovagal function problems? Quote Link to comment Share on other sites More sharing options...
htberg Posted October 25, 2015 Report Share Posted October 25, 2015 Maybe things have changed since I went to Mayo in Rochester, but at that time they had me do a forced breathing test, not a deep breathing test. Sort of replicating what would happen if i was doing nothing and then exercising. The most helpful test for me at Mayo was the sweat test. I've had this done at Northwestern Memorial Hospital and somewhere else and Mayo's was much more advanced--they douse your naked body with gold powder, put you in an pressure cooker of sorts and then the powder turns purple where you sweat. Other hospitals juts do a test on your wrist and ankle w/a sensory of some sort. I seem to sweat there but Mayo kept me in the cooker twice as long as indicated and doused me a second time in some spots b/c i did not sweat on my forehead or feet. I also want to point out that part of dysautonomia is the change of system function from day-to-day or even hour-to-hour. I had the tilt table done at Mayo and it was fine and then had it done a few months later at Northwestern and it was terrible. Its important to do several different kinds of tests and even the same test a few times to confirm the diagnosis. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 25, 2015 Report Share Posted October 25, 2015 My breathing test findings were considered negative but I had a positive ttt for pots (2 actually ). But, the reason there are several autonomic function tests is because there are multiple indicators for autonomic dysfunction. Quote Link to comment Share on other sites More sharing options...
rje11 Posted October 25, 2015 Author Report Share Posted October 25, 2015 Thanks for the input! I am also scheduled to do the Valsalva Test (forced breathing), so maybe the Deep Breathing test is a new one. Supposedly a normal person's heart rate varies quite a bit 10-20 bpm from inspiration to expiration, but mine hardly varies at all. I have read that a high heart rate variability (within reason) is a good thing, while a low one is not so good. I am also having the Sweat tests, but I am not sure how they are going to do these, as I have generalized dystonia, which is an involuntary movement disorder and my body is rarely still. I guess they will figure that out when we get there, though. ;-)Thanks again!Rje Quote Link to comment Share on other sites More sharing options...
htberg Posted October 26, 2015 Report Share Posted October 26, 2015 Good to know. It sounds interesting. I was last at Mayo in 2009--had to go twice to get everything in. They had some trickiness with me too b/c I have dysautonomia, not POTS. From my understanding is POTS is more common and some people with POTS also have dysautonomia. Good luck with your appt. I sure hope they help provide you with answers. One thing I would recommend is to try to get referrals from them when you leave. I'm so hoping this part of the program changed b/c I was sent home to find a doctor that knew about dysautonomia. Hence, how I ended up at Northwestern and University of Chicago, and some other 'top' places. Needless to say, that was 6 years ago and i still don't have a solid neurologist, urologist, endocrinologist, gastroenterologist, or primary. My ob/gyn is the only one that seems to really get it (and my pulmonologist is good) and I think that is because one of her friend's (also a physician) daughters has dysautonomia so she has some experience that way. Quote Link to comment Share on other sites More sharing options...
rje11 Posted October 26, 2015 Author Report Share Posted October 26, 2015 Thanks for the information. We are a couple of hours from Vanderbilt, so I figure I might go there for follow up, depending on what they find. I go to UAB for my generalized dystonia and I had Deep Brain Stimulation surgery there, but if I start going to Vandy, then I would probably change to their neuro dept, too. I have a good internal med doc who is willing to do whatever he needs to to help me - I am very thankful for him. He is the one that suggested dysautonomia, in fact. Unfortunately, the type of dysautonomia my symptoms most "fit" into is Multiple System Atrophy. I will NOT self diagnose myself with that, though, and hope and pray that it is not that. I had read about it before but didn't want to do much research because I was not ready to face the fact that it might be that. My hubby read an article about it recently and said something to me about it and I admitted to him that I had thought about that. He does want to know - one way or the other - so here we go! ;-)Rje Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 27, 2015 Report Share Posted October 27, 2015 Just for clarification, POTS is one type of dysautonomia. Quote Link to comment Share on other sites More sharing options...
ks42 Posted October 27, 2015 Report Share Posted October 27, 2015 My spouse and I both had our breathing tests done at Mayo, as part of a full battery of autonomic testing. To be considered normal by Mayo standards, heart rate variation during deep breathing is supposed to exceed 12bpm. Mine was considered abnormal, as I only varied by 10bpm, and my spouse's was also abnormal, as it only varied by about 8 or 9bpm. However, my heart rate response during the valsalva were normal, so they said due to that there was no reason to worry about the couple of points that my deep breathing test was off, so they ended up putting it down as "attenuated but normal in light of normal heart rate responses to valsalva maneuver". So how they diagnose and what they consider normal/abnormal really depends not only on your overall symptom picture and presentation, but the results of the other autonomic tests they do as well.Good luck, hope everything goes well with your testing! Quote Link to comment Share on other sites More sharing options...
rje11 Posted October 27, 2015 Author Report Share Posted October 27, 2015 That is very helpful to know that it would need to vary by 12 points. I am not sure how accurate my pulse oximeter is, but when i tried it at home mine only varied a couple of bpm... I would try the Valsalva thing at home but I am not sure how to know I am exerting 40mg pressure. Is it possible to do anything similar to that at home? Also, my bp may or may not fall under the OH label as sometimes it drops up to 30 points when I stand up but some times it doesn't.... Thanks bunches!rje Quote Link to comment Share on other sites More sharing options...
ks42 Posted October 27, 2015 Report Share Posted October 27, 2015 The valsalva maneuver is a really complex test to interpret. It requires specialized equipment, as you have to blow into a weighted tube that has a meter to show how much pressure you're exerting, and you have to exert that pressure for a certain length of time (I think at least 10 seconds), at least three or four times. How long you do it and how many times depends on your individual presentation & circumstances. During the maneuver, they monitor your EKG for arrhythmias, your heart rate, and your blood pressure with a continuous BP monitor. All three of those are factored in to determine what the results are, and there are multiple phases to the Valsalva that have to be evaluated separately before it can all be put together. For example, I had an exaggerated BP response late in phase II of the Valsalva, but everything else was normal. So, HR, BP, and EKG all have to be evaluated together to determine what is normal for each phase of the Valsalva under your particular circumstances.Also, medical supervision during such an intense Valsalva like that is really necessary. I wouldn't advise trying to duplicate a test like that at home. Quote Link to comment Share on other sites More sharing options...
rje11 Posted October 28, 2015 Author Report Share Posted October 28, 2015 Yeah, that is way too complicated to try to attempt at home. I know that I just need to let THEM do the testing and it will be what it will be. It is hard to wait, but I need to be a patient patient.... ;-) Thanks for all the information!rje Quote Link to comment Share on other sites More sharing options...
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