An Exercise Plan For A POTSie

An Exercise Plan For A POTSie

Last week was another step forward in working towards some sort of improved quality of life. Meaning, I finally had that cardiac rehab (aka exercise) evaluation that I’ve been putting off. Since Dr. Wilson made such a good case for it at my appointment with him, I knew I had to try.

I felt a bit crappy in the morning, so I’m glad my dad was here to be able to take me. We weren’t sure how much the test would drain me and if I’d be able to drive afterwards, so we decided it was better safe than sorry. We got there early because I wanted to get those dozen or so labs drawn, but apparently one of them, Cryoglobulin, can only be drawn at main campus. Hmmph. So I ended up being 25 minutes early for my appointment. But I had lots of paperwork to fill out anyway.

I was called back as soon as I finished the paperwork. I had a really nice nurse whose name was Bob. We went through the usual computer stuff and then he hooked me up to the 12-lead EKG. After running an EKG, he had a cardiologist come look at it. He saw something he didn’t like, so Bob had to readjust a few of the leads; I think he had initially been trying to not have to reach too far under my sports bra. I wanted to say, “Dude, I’ve had six surgeries. I’ve had a nurse wipe my nether regions when I was covered in blood and dye. Nothing you can do will faze me.” After running about four more EKGs, the cardiologist was finally satisfied.

Then it was time for the dreaded treadmill test! It started out flat at low speed, as a warm up and to get acclimated to the machine. Then the speed increased a bit. Then every two minutes, the incline and speed would increase and Bob would take a manual blood pressure (how he could hear properly with the whir of the treadmill and my feet thunking away is beyond me!) Since I’ve only been on a treadmill once or twice before, I was really hoping I wouldn’t suddenly lose concentration and trip over my own feet and wipe out.

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Although Bob reassured me that he would catch me before I fell off the end of the treadmill. I trust that he would have.

I only made it to six minutes out of a max of ten, which I was a little disappointed in myself for. I really could have pushed harder, but my gut told me not to. As it was, once I had cooled down and stopped walking, I had to stand still on the treadmill for a bit until the dizziness subsided enough for me to get to a chair. Then I sat in the chair for another few minutes, while Bob was still taking readings, then he was finally able to unhook me.

The hard part over, we moved to an exam room and my dad came back. We waited half an hour for Dr. B, the exercise physiologist, to come in. He was a very nice and knowledgeable man. He had me talk through my POTS history to make sure he had discerned everything correctly from my chart, which it seems he pretty much had.

He then talked through the studies that demonstrated the role exercise plays in improving POTS symptoms. My understanding is that in both of these studies, patients had to stop all medications they were taking for POTS prior to the start of the study.

  • The first study had 15 patients and through a gradual exercise program (essentially cardiac rehab), 70% of them showed improvement.
  • As a follow-up, another study was performed with 250 patients and to everyone’s surprise, 80% of patients showed improvement, some with complete resolutions of symptoms and/or less or even no need for medication!

Then we went through my specific regimen. Since it’s too complicated to type out, I just took a picture of it to explain. These goal ranges are based on my maximum heart rate during the treadmill test of 157 bpm and a functional capacity of 7.0 METS (whatever that means.) My heart rate only got to 83% of predicted for my age (which I know is 189 bpm) and my functional capacity was impaired by 21-30%. Hmm.

Exercise plan

So basically I start on the recumbent bike for 20 minutes three times a week and very slowly work my way up to an upright cycle and then finally to a treadmill for 45 minutes five days a week. I’m pretty sure most people in this country don’t exercise that much.

Luckily, I already have the Polar H10 chest strap heart rate monitor and know how to use it, so that’s one less thing to worry about. They recommend Polar because they studied a few different options and Polar came out on top with a 0.99 correlation, versus a Fitbit that only had a 0.75 correlation. (Basically, the Polar is accurate 99% of the time and a Fitbit is only accurate 75% of the time. Or something along those lines. I hate biostatistics.)

And for anyone science-y, I circled in yellow the citations for the studies this program is modeled after. That’s what we call evidence-based medicine. Oh yeah. ?

Citations on which exercise plan is based

I’ll see Dr. B again on August 30th, which will be in the middle of week six, to see how things are going and if any adjustments need to be made. I’m a bit worried about how my left knee is going to hold out with those longer exercise durations; I think the treadmill will be better than the elliptical for the upright weight-bearing portion.

I’m really glad I went to see Dr. B. He came recommended from other POTSies in my area and I can see why. He truly understands POTS and the physiology behind how it affects the body. In addition, he understands what a challenge it is for a person to deal with and he designs his programs to be as beneficial as possible based on evidence from recent scientific studies. I can’t wait to see if this actually works for me!

So here goes nothing!


14 thoughts on “An Exercise Plan For A POTSie

  1. Omg I’m so excited for you!! Sending lots of positive exercise vibes your way! I really found your comment that it was more than most people did! It sure is more than I do 🙁 gotta change that really.

    1. Thanks Emma! I hope to start today, so I’ll really need those vibes! I feel like eventually I’ll be able to run marathons or something…haha just kidding, I don’t run. ?

  2. I suffer from PoTS as well and this is way more than I could manage. Best of luck to you sounds like you have a great specialist.

    1. Thanks Emma! The thing I like about the program is that it’s exactly tailored to what your own body is able to handle. Apparently mine isn’t too bad off, all things considered. ?

  3. Wow sounds like a great plan to feel better & stronger. Hope it works for you please update us. Mayo clinic has me exercising 5 days a week for 5 minutes a day and than in 6 months I do more. If your cardio doctor reccommends any one he may know of in Florida please let me know, my treatment plan so far just makes me feel more ill. Sounds like you found a excellent doctor! Wishing u the best!!

  4. Before I left the Children’s Hospital because I aged out, my POTS doctor gave me an entire packet of an exercise routine starting with a recumbent bike, too! Though ours is still sitting in the box three+ years later. Oops? I really hope it works for you!

    1. Haha! I’m glad you at least have a plan if you want to go for it! I did my first one today. At first I thought there is no way I can do this for 20 minutes! It was tough, but once I got my heart rate in range, I was ok. Now at least I know I just have to get over that hump and it’ll be more tolerable. Have you thought about trying the exercise plan?

      1. 20 minutes seems like a long time to start out with! I think I would’ve passed out ? & yes, I have, but the program my doctor suggested isn’t something my body’s up to right now. I do the floor peddler once in a while when I’m sitting on my bed and feeling up to it, otherwise even showering in my chair is a workout! I’m starting PT soon because my muscles are getting weaker, so we’ll see.

    1. Not too bad, actually! I find that on the days I am able to do a workout, I can do it without any problems. But when I’m having a bad day, I need to take a day off. It’s going a bit slower than “prescribed,” but I’m sticking to it because I know it has a good chance of making me feel better in the long run!

      1. I wished my son would believe that, although he is walking around the garden for about 10 minutes nightly at present trying to get himself fit to return to part time education. Also, he needed to had started more than a week ago. There has been a lot of input into his fitness over the past 20 months, he starts regular walking and stops after a crash. We are seeing a PoTS specialist cardiologist privately tomorrow and hoping (but you are always hoping) for great things. Keep moving you are doing fantastical x

  5. I can’t imagine how hard it must be for a teenaged boy to buy into something like exercise when he feels like rubbish much of the time. But he’s come a long way, hasn’t he? Correct me if I’m wrong, but wasn’t he making all that effort months ago to walk down the road and then all the way to the bus? Or something along those lines?

    I think it’s just important for him to keep going after the crashes. I’m in a bit of a lull right now myself as my body adjusts to having recently started a beta blocker, which has made me even more lethargic than usual (and a primary side effect is…exercise intolerance!) I know I just need to give it time for my body to figure things out and then I’ll return to where I left off in the program, or maybe go back a week just to get back into the swing of things.

    I know your son can do it! Give him some encouragement from me! ?

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