Hyper Pots & exercise

[Jessica_]

So I’m going to start exercising per my cardiologist and the advice of my fellow Potsies. I have my recumbent bike and all  so here’s my question to those who have a exercise regimen; 

Do you pay attention to your HR when your exercising? Do you have a target HR or stop when it gets to a certain number? 

Also what exercise has helped you the most? It seems the bike wouldn’t give too much of a work out but maybe I am wrong. 

My fear with this is I don’t want to drop dead from exercising (irrational right? 🙄) but it’s a legit fear of mine which is why I haven’t started yet. My cardiologist says don’t go off a number go off how you feel but I’m too scared! I seriously think I have PTSD from all my attacks and SVT, any advice appreciated! 

[Pistol]

I do not ever pay attention to my HR when exercising because the goal is to get your HR up. When I am well I exercise daily (mild aerobics) and to whatever degree I can tolerate that day. When I have bad days then I just do exercises laying down or sitting. I think your cardiologist is right to recommend you to go by how you feel. It is also important to not overdo it but to start very slow and set achievable goals (if any - you may just want to see how much you can do in the beginning). Don't be scared - it is good for you and a way to fight your POTS symptoms! Good luck, keep us posted!

[Lily]

I have hyperPOTS and I function well enough to do whatever exercise I want.  I lift weights, ideally twice per week, and I try to get in cardio at least 3 times per week.  Indoor cardio is boring, but I have 2 ways that I can do it.  I have my outdoor bike on a magnetic trainer in sight of my TV, and I got an under-desk elliptical trainer for at work.  I can usually make myself do one or the other most days.  I do not pay attention to my heart rate at this time, unless I get curious.  I would if I was going to train for a race or something.  I find that I feel better in general with vigorous exercise.  For example, walking slowly at the speed people usually go causes me to feel poorly, but walking quickly makes me feel better.  Gets the blood moving, I suppose.  I also suppose your response to exercise could depend on the exact mechanism causing your POTS.  In my case it is low blood volume combined with overly-stretchy veins, and a sympathetic nervous system that keeps cranking out norepinepherine.  Start slowly.  Do what you can and keep trying to go longer and faster.

[p8d]

Beta blockers can impact heart rate during exercise so my cardiologist and PT tell me to go by “perceived difficulty”.  I don’t know if alpha blockers also do this.  Can you get an order for PT?  I have worked with several over the years both at home and eventually at a small clinic.  I go once a week when I am well and I find it helpful not only for exercise help but to ask questions and have things documented on my chart for my Drs to see.  I started on a bike very slowly, literally 2-3 minutes when I was extremely bad and eventually also got a rowing machine and worked up to 30 minutes every couple of days.  I do strength training other days.  At PT I started with a water treadmill and now do a regular treadmill but I haven’t been to PT since late November because of flares and fear of the flu.  I intend to go back as soon as the flu slows down.  I try to listen to my body and only do what I can manage.  I’m in a bad flare right now and have had to back off considerably.  It’s vital to maintain fitness and helps a lot with fatigue, sleep, mood and ability to be upright even if it isn’t for very long.  I consider it as important as medication.  You can do it!

[Jessica_]

Thanks guys! I will try not to pay attention to the number as hard as it will be. I’m so used to being obsessed with my HR and I think it’s time to let it go and start fresh. I will keep you posted for sure and hopefully this will get me living again! 💪🏼🤞🏻 As for PT I’m not sure if my doc would do that for me. I think I will start with the bike and some relaxing yoga and I’ve also read tai chi is good for hyper pots so we will see how it goes! 

[TCP]

Initially my cardio wanted me to do cardiovascular exercises. I wasn't so sure about this as I am pretty unwell and I've never really exercised. I started on the recumbent bike a few minutes a day and built up to an hour a day. My cardio wanted me to step it up, but as I didn't feel too well and the neuropathy and joint issues got worse. Then I found out I had a pituitary tumour and that has messed with my cortisol levels, so I cannot do any rigorous exercise. Now I do gentle stretching and I am trying to work on my core, as that is key to success with autonomic issues. I can do this without too much exertion. ~
 

[Jessica_]

@TCP Wow how scary! Do they think your tumor was the cause of your autonomic issues? Did you have it removed? 

[Lily]

Jessica, you might try intentionally focusing on what your body can do, rather on what it can't. 

Example:  Yay!  I exercised for X minutes today.  Lets see if I can do it again tomorrow.  

Also, instead of heart rate you can go by perceived exertion.  Here is one scale, with descriptions of how you feel at different levels:  https://www.hsph.harvard.edu/nutritionsource/borg-scale/

And keep a log of your exercise and perceived effort, so you can look back at it and feel good about yourself.

 

[toomanyproblems]

How high is your HR going?

[Jessica_]

@Lily thank you that is helpful! Keeping a log is actually a very good idea. 

@toomanyproblems I haven’t actually tried exercising since my illness started so I’m not sure how high it will go but my HR is usually 120-130 walking around and sometimes will go to 170 if I do stairs. So I’m not sure what it will be when I start this exercise regimen. Starting today so we will see! 

[WinterSown]

Put the monitor down, get on the bike and ride for the joy of it, stop before it's not fun anymore. Tomorrow, put the monitor down, get on the bike and ride for the joy of it, stop before it's not fun anymore. Wash. Rinse. Repeat. 

You want to focus on this making you feel good--favorite music, comfy clothes, something tasty to sip. Stressing yourself out with numbers is self-defeating because stress triggers symptoms. Enjoy the fun of it. 

[bombsh3ll]

On 2/1/2018 at 9:06 AM, WinterSown said:

get on the bike and ride for the joy of it, stop before it's not fun anymore.

If I only exercised when it was fun, that would be never  I exercised out of vanity to look good when I was younger, so I was not unfit, but I never enjoyed it. I wish I had treasured the ability to walk more when I had it though. I dread exercise now having to do it whilst so presyncopal & really have to force myself.

I listen to music and/or read whilst I ride my recumbent bike. I can only manage a few minutes on the treadmill, and I do wear a polar heart rate tracker to make sure my heart rate doesn't go beyond 85% of my maximum HR for age. You can easily look up the tables for this. Everyone is different but for me, I know I am very deconditioned as a result of POTS (NOT the other way round) and like the peace of mind of knowing I am not working my heart dangerously hard for someone so out of shape. 

I also find it best to exercise in the evening when my blood volume is highest after fluid & salt loading all day.

Good luck!

[WinterSown]

1 hour ago, bombsh3ll said:

If I only exercised when it was fun, that would be never  I exercised out of vanity to look good when I was younger, so I was not unfit, but I never enjoyed it. I wish I had treasured the ability to walk more when I had it though. I dread exercise now having to do it whilst so presyncopal & really have to force myself.

I listen to music and/or read whilst I ride my recumbent bike. I can only manage a few minutes on the treadmill, and I do wear a polar heart rate tracker to make sure my heart rate doesn't go beyond 85% of my maximum HR for age. You can easily look up the tables for this. Everyone is different but for me, I know I am very deconditioned as a result of POTS (NOT the other way round) and like the peace of mind of knowing I am not working my heart dangerously hard for someone so out of shape. 

I also find it best to exercise in the evening when my blood volume is highest after fluid & salt loading all day.

Good luck!

Three years ago I weighed 60 more pounds than I do now. Losing my appetite is part of my symptoms. I was greatly out of shape. Are you working with a PTD? If you are very complicated, and who of us is not, you might consider to begin a reconditioning program with a physical therapist, your doctors can give you a script. I do not have the capacity to put together a program for myself that takes into account three different PT scripts from three different doctors. I have benefited from being physically brought up in very slow increments while the trouble spots are getting their due. I do get symptoms at PT, generally I just zone out but sometimes I want to hurl or hope I'm not incontinent, I've had drop attacks there. I take a break as often as I want or when the doctor tells me to take a break. I never force myself to do anything because exercise is incremental, if I feel I need to do less I do less, if I want to try to do more I will try to do more, but I stop before it becomes so displeasurable I don't want to go back. I have three different types of balance boards here at home, Easy, Not Easy, and Crazy; depending upon both my energy level and tripping capacity I get on a board of my choice. It's still a challenge but it's still fun--I never take fun out of it. I'm a sucker for cheap, bizarre-print leggings, was wearing a skull head print this morning. Wish you luck.

 

 

[TCP]

On 31/01/2018 at 1:26 AM, Jessica_ said:

@TCP Wow how scary! Do they think your tumor was the cause of your autonomic issues? Did you have it removed? 

Hi Jessica

No, I won't have surgery and am on meds that might shrink it. Surgery would be last option. I've no idea if the tumour caused POTS, although there are people who have found a link. 

[bombsh3ll]

On 2/2/2018 at 8:41 PM, WinterSown said:

Three years ago I weighed 60 more pounds than I do now. Losing my appetite is part of my symptoms. I was greatly out of shape. Are you working with a PTD? If you are very complicated, and who of us is not, you might consider to begin a reconditioning program with a physical therapist, your doctors can give you a script.

I'm in the UK so no medical help unfortunately. I read online about exercise being beneficial, and bought a recumbent bike. During several months of licorice root being effective I optimistically bought a treadmill too. I also lift arm weights whilst watching tv, plus my arms get a workout from using my self propelled wheelchair.

I'm sorry you've struggled with appetite loss, that is an issue for me too. When I first became unwell and started reading about POTS, I convinced myself I had gastroparesis, but I now realize the nausea is just a symptom of cerebral hypoperfusion for me (plus the volume of salt and water I chug), and that my motility is in fact OK. I don't doubt that I've lost lower body muscle mass too though from sitting all the time. 

It is a real inspiration for me to read about other people exercising with this., keep it up!!!

[Steven]

I hope your exercise is going well.

I've come across quite a few POTS people online who like swimming, as the water keeps them cool, they can exercise while being horizontal, and the water pressure helps reduce blood pooling in the legs and arms.

I think the important thing is just to find out what's achievable and enjoyable to sustain on a regular basis.

The following is how things work for me, with a resting heart rate often in the 40s or 50s when lying down or sitting. If your body is used to a resting heart rate of something more like 80 or 100bpm, or if your blood pressure responds differently to mine, maybe a higher heart rate while exercising will be tolerable for your body.

It's currently summer in Australia, where I live, so at the moment I pretty much limit extended physical activity to walking to the local shop and back, or catching the bus to do some shopping at the supermarket, which I try to do in the morning or evening to avoid the heat and direct sunlight.

Last winter I would go to a gym regularly and use the cross-trainer, where you stand on the machine and use your arms and legs at the same time. The gym was air-conditioned, so the temperature was mild and constant, and it was in a shopping complex with windows facing indoors, so direct sunlight was not a problem. It was an upright exercise but the machine had handles to hold onto, which provided extra stability if I would get a little light-headed or off-balance. I would aim to do 30 minutes or more on the cross trainer at each visit and keep going for longer if I was feeling okay after 30 minutes. The machine had a TV screen and heart rate sensors where your hands grip the machine. I found out what I would usually be able to sustain for 30 minutes, in terms of speed/distance (also displayed on the screen) and heart rate. The guy who signed me up said that a good goal for cardio exercise, for people in general, is to get the heart rate up to 140bpm over the first 5 minutes and then keep it there. So I used that as an initial baseline goal and found an appropriate speed to stay above. Then I went to the gym when there was something on TV I would want to keep watching until the end. I would adjust my usual speed or heart rate goals up a little over time as I got used to doing it regularly, or down as necessary if I could tell I was getting too fatigued or otherwise symptomatic to be able to keep it up at that rate for 30 minutes on that day. If I was getting increasingly symptomatic right from the beginning I would aim to adjust to a rate I could maintain for 15 minutes, then see if I could keep going if I made it to 15 minutes. I found that 120-150bpm was an appropriate heart rate for exercise sustained for 30 minutes for me last winter, sometimes going up to 160bpm for shorter periods if I was feeling comfortable at 140-150bpm, then easing back down, coming from a resting heart rate that was probably in the 40s-50s when lying down or sitting. My heart rate at the moment, during summer, is often in the 100-150bpm range just from standing up, indoors in the shade. It takes an hour or two to settle back down to my resting heart rate after going for a short walk, so, even though the gym is air-conditioned, walking to the bus stop to go there during summer would put my heart rate too high for too long to make a visit to the gym practical.

I find that I can often tolerate much longer walks in winter, so I will walk and listen to an audiobook on my phone with over-the-ear headphones to block a lot of the outside noise. This might not be so practical if you live in a noisy place.

[ramakentesh]

All POTS by definition is a hyperadrenergic state. 

[DizzyPopcorn]

On 2/18/2018 at 7:39 PM, ramakentesh said:

All POTS by definition is a hyperadrenergic state. 

What do you mean by that?