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Has anyone here tried the exercise program for POTS that starts with reclined exercise and works up to upright exercise over 6 months?

I got a gym membership this week.  I tried the recumbent stepper and recumbent elliptical machines.  I couldn't get my heart rate up to 125, and I was working hard until muscle fatigue!  The directions are to warm up 5 minutes, 3 minutes at 125 HR, and cool down to normal HR.  I stopped after 30 minutes so as to not overdo it.

I'm planning to try identical workouts on seated stepper and upright stepper and compare HR data.

I'm very surprised.   I get up to 174 HR with walking up a hill for a couple minutes.  I thought I was out of shape and *exercise intolerant*.  Looks more like I'm not so terribly out of shape and I'm **upright** exercise intolerant.  

Has anyone here noticed similar pattern?

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Nope, I am awaiting diagnosis.  I have labs this coming week and doctor appointment the following week.  I'm tracking everything and experimenting, trying to rule out variables in advance.  I know my blood pressure doesn't drop significantly when I stand up (that was checked in the past during a particularly bad bout of pre-syncope and falls). I know I have tachycardia when I stand, and blood pooling in my hands and legs.  I don't have tachycardia or poor circulation lying down.  My symptoms are severe enough to be legally disabling.  My symptom pattern matches up with POTS so I'm curious what my doctor thinks and where he will refer me.  I have data on these symptoms going back 13 years, but they've never been looked at as related to each other.  My most distressing symptoms are fatigue, cognitive/attention problems when standing, chronic vein pain, and blood pooling in hands and legs, chronic nausea, cold/heat intolerance, irritability (which happens when I'm standing and is resolved when I lie down and put my feet up).

 

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Walking uphill is hard!

What is your HR when walking on flat ground? If the recumbent exercises were not too difficult for you, then I'd personally try to do something that gets your HR up a little more. Of course, it is always helpful to increase your muscle mass and the recumbent exercises may help with that, but you can do your "cardio" separately with walking or something else that suits your abilities and lifestyle.

I exercise 5x per week and unless I just walk at an easy clip, my HR is always in the 160s or 170s for at least some of my workout. Check with your doctor of course, but I wouldn't avoid activities that you can tolerate otherwise just because of a high HR. 

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Walking on flat ground indoors, HR is 70 (good day) to 125ish (bad day).  

I tried mirror workouts on recumbent and upright elliptical machines.  On the recumbent, I was able to do a good 30 minute interval workout switching between resistance levels 1 and 9.  HR during the level 9's was 120 - 130.  I cooled down, rested, and then tried upright elliptical.  4 minutes into the warm up, my HR was 180, I was getting dizzy and my vision was graying out / visual snow.  I stopped immediately and laid down with my feet up. 

I think I'll be sore tomorrow, but if I'm not fatigued (more than usual) I would like to continue with the more normal workouts on the recumbent machines.  I haven't tried them all yet.

I am going to ask my doctor about heart rate for exercise!  Thank you for the reminder! 

 

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  • 3 weeks later...

I am 4 months into this, currently starting with upright cardio.

Basically first two months I did rowing, then 2 months upright cycling.

I am having decent results, my standing HR went from 80 to 150+ within a minute 4 months ago, now it goes only to like 120-130. Diet and exercise were the biggest help. I do not take any meds.

I am still pushing onward, I remember in the start when I tried doing standing exercises the following night I would wake up constantly with heart palpations throughout the whole night, now I do no longer get this after an upright workout. So there is definately improvement going on for me.

I am also stuffing myself with as much food as possible, eating 4000+ calories daily, trying to build a stronger body, finally managed to find a way to consume this many calories without crashing severely after each meal (removed all fat in diet, for me for an unknown reason I cannot eat it at the moment, stomach shuts down with nausea and feeling full almost the whole day).

I am working out about 1 hour a day on average now. Doing 2x a week strength training and about 6x a week cardio (mostly cycling @ hr of about 140-150). I am building up to adding in jogging, standing upright as much as possible during the day now and walking around the house constantly, trying to sit as little as possible and never allowing myself to lay down during daytime.

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Wow, that's awesome @marcus99!  Very inspiring!  I'm holding off on exercise for a while, until my tilt table test.  I have neuro consult in a month, and who knows how long until I can get in for TTT.  My symptoms have subsided somewhat.  I have sustained approx 6,000 steps per day for several days without crashing. ? Probably combination of various self care strategies.

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