Jyoti Posted May 23, 2021 Report Share Posted May 23, 2021 I wonder if anyone has encountered anything that might shed light on a current dilemma for me. I saw a cardiologist who sees a lot of dysautonomia patients and he told me (POTS and NMS) to do salt, water, compression garments and keep my heart rate under about 95 (I am 64 and the max should be around 155). I then saw a neurologist who specializes in dysautonomia --my original appointment but I wanted to be sure I did not have any organic cardiac problems--and he tole me to do salt, water, compression garments and to get my heart rate up to 155-160. This is not plaguing me: I can only do what I can do. But I was just curious if anyone had any thoughts or insight on this potentially rather wide variance in advice. Thanks Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 23, 2021 Report Share Posted May 23, 2021 @Jyoti Hi - the HR of 155-160 BPM should be the EXERCISE rate for your age. In normal people this HR should be achieved with exercise to ensure proper circulation and heart health. However - the problem with POTS is that we get higher HR than that just by standing. The other thing is that we do not have the ability to control our HR, often not even with increase in salt and fluid and wearing compression garments. So, IMO, they are both right and both not helpful. It would be nice to keep your HR below 95 but the truth is that with dysautonomia we are not necessarily able to, at least not without medication. And yes - we SHOULD be able to exercise and get our HR up to the recommended rate but we get this HR without exercise and - in most cases - are exercise intolerant. For me any exercise that would get my HR up that high would make me pass out or have an autonomic seizure. For most of us it would at least cause us to be bedridden for a while. To give you those parameters is like telling a chicken to only poop in the litterbox!!!! Quote Link to comment Share on other sites More sharing options...
Jyoti Posted May 23, 2021 Author Report Share Posted May 23, 2021 1 hour ago, Pistol said: @JyotiTo give you those parameters is like telling a chicken to only poop in the litterbox!!!! Exactly! Like everyone else here, my heart rate goes over 95 when I sit up sometimes. Taking a shower or washing dishes can get me into the aerobic zone! But then if I try to get it higher, as the neurologist suggested, I end up coming very close to passing out. And if I do manage it for a few moments, it does, as you note, come with serious consequences. Just a little baffling... Thanks for your response! Quote Link to comment Share on other sites More sharing options...
E pots Posted June 6, 2021 Report Share Posted June 6, 2021 On 5/23/2021 at 8:11 AM, Jyoti said: Exactly! Like everyone else here, my heart rate goes over 95 when I sit up sometimes. Taking a shower or washing dishes can get me into the aerobic zone! But then if I try to get it higher, as the neurologist suggested, I end up coming very close to passing out. And if I do manage it for a few moments, it does, as you note, come with serious consequences. Just a little baffling... Thanks for your response! What happens if you get your HR too high? I just swam for a long time & it won't come down. Staying 90 laying down which is normally 55. Scared Quote Link to comment Share on other sites More sharing options...
Jyoti Posted June 7, 2021 Author Report Share Posted June 7, 2021 Did it come down, @E pots? It is just so frustrating and scary to have the regulating mechanism for something so critical as the heart completely out of whack. Mine has been coming down fairly quickly of late, but I am feeling pretty good (relative to how I feel at other times, not relative to other people!). But when I am having a flare, it takes a while. I hope you are better this morning. Quote Link to comment Share on other sites More sharing options...
E pots Posted June 7, 2021 Report Share Posted June 7, 2021 Its 67 in bed now. I've been up a few times thru the night. Made me less able to sleep. Sleep has been really bad for 2 months now anyway Not sure what the day will be like. Usually gets bad for 8 hrs in mornings while in this flare Diarhea.nausea weak off balance. Waking up is scary because things start to go downhill. Quote Link to comment Share on other sites More sharing options...
E pots Posted June 7, 2021 Report Share Posted June 7, 2021 1 hour ago, Jyoti said: Did it come down, @E pots? It is just so frustrating and scary to have the regulating mechanism for something so critical as the heart completely out of whack. Mine has been coming down fairly quickly of late, but I am feeling pretty good (relative to how I feel at other times, not relative to other people!). But when I am having a flare, it takes a while. I hope you are better this morning. Thank you. Still on bed. I'm scared it's going to be a horrible day because of yesterday Quote Link to comment Share on other sites More sharing options...
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