On heart size, stroke volume and exercise.

[MTRJ75]

So I'm reading the exercise and reconditioning section of the POTS manual posted here a couple of months ago (p207) and have come across a couple of interesting things: 

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...recent studies suggest that deconditioning may even be a consequence of PoTS, as the reduced stroke volume seen in patients with PoTS has been related to exercise intolerance [7, 10]....These authors report that the reduced stroke volume seen in PoTS is caused by an insuffcient preload of the heart, very probably due to peripheral blood pooling [7, 10–12]

Is stroke volume what makes us feel that heart pounding sensation or more forceful beats frequently? 

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The long-term benefcial effects of increased physical ftness that are thought to counteract orthostatic intolerance consist of a larger blood volume, a larger heart and cardiac output, enhanced vascular compression by increased muscle tissue, improved endothelial function, and possibly also improved barorefex function [17–19].

Quote

After the 3-month training program the majority of the patients included in their study no longer fulflled the criteria for PoTS [3, 5, 20].

I've often read that patients generally have a smaller heart, yet, about five years ago in my first go around with the cardiologist, after a number of tests, she had told me that my heart might be slightly enlarged. I've exercised my entire teenage and adult life. If this is supposed help the condition, then I should've cured it before I even got it. 

I'm not sure what the cause and effect is here. If you can complete a 3-month training program, you likely have lesser symptomology to begin with. They do at least admit that POTS likely causes deconditioning and not the other way around. 

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Clinicians however need to be aware that some individuals cannot tolerate or beneft from exercise until after they have achieved better medication control of their PoTS.

Yes they do!

In the end, I'd really like to get back to some type of exercise program, particularly if it can help the condition, but it seems I'm still going the other way with smaller exertions causing worsening after effects. 

[Pistol]

Hi @MTRJ75 - well, I know what you mean about exercise. I have reached the max benefit I can get from meds I have tried so far and that is why I am on IV fluids weekly. My POTS has greatly improved insofar that I barely faint or have seizures, my BP has stabilized and palpitations have ( for the most part ) stopped, fatigue is tolerable. However - I continue to have orthostatic and exercise intolerance to the degree that most exercise ROBS me of energy and I need bedrest if I do too much - or the wrong - exercise. I had a telemedicine appointment with my autonomic specialist today and he scolded me for not exercising enough. Well - compared to what I could do 2 years ago, before the IV fluids, I am VERY active! I do light housework etc every day, I walk 5-10 minutes at a time every day and I use my rowing machine often ( my current ability is 20 reps 2-3 times a day. To me that is pretty good. I also do stretching. Some days I cannot do anything. What I have found is many exercises are not good for me, and aerobic exercise ( as is recommended ) depends highly on the temperature. In the summer I can only tolerate being outside in the early morning, and in the winter I can only go outside when the sun is shining and it is above freezing. 

3 hours ago, MTRJ75 said:

I've exercised my entire teenage and adult life. If this is supposed help the condition, then I should've cured it before I even got it.

I had to laugh about this one 😂! I think what they mean is when you have POTS the exercise intolerance will keep you from exercising, which in turn will make the orthostatic intolerance worse. Therefore it IS important to exercise to tolerance, and to slowly increase exercise. Also - as you know regular exercise helps the heart and circulation because getting our HR up with exercise promotes good circulation - which we POTSies lack. As a result our heart does not have to beat so hard because the exercise helps to circulate. We will develop muscles that promote good circualtion as well, and BP is more stable. 

[cmep37]

I am the first person to admit that bedrest is terrible for POTS - I've actually dragged myself out of bed when I had pneumomia as I was scared staying in bed for a week would lead to a bad relapse.  However I think there is a tendency among some doctors to blame POTS on deconditioning when the truth is that it is POTS itself that makes it extremely difficult to exercise.

@MTRJ75I have tried Levine's exercise programme for POTS  - he was the doctor that linked POTS to a small heart, he called it "Grinch" syndrome and initially he seemed to suggest all cases of POTS could be cured by exercise.  Here is a link to his exercise programme case you haven't seen it

Microsoft Word - CHOP_Modified_Dallas_POTS_Exercise_Program.docx (dysautonomiainternational.org)

I still do most of the stretches and exercises on it every day but I was never able to progress to upright exercise and it certainly didn't cure my POTS.  What I disliked about it was that it seemed to blame the patient if they were unable to progress - it was like they were saying you hadn't tried hard enough.  Every time I tried to exercise standing up, my heart rate would get too high which stimulated my vagus nerve and made me vomit - I persisted for a month before realising it wasn't making any difference, my HR wasn't improving and I was losing too much weight.

I am as active as I can manage - every day I take a 10 minute walk, do an hours stretching/physio type exercises and 10-15 minutes recumbent cycling although if I'm in a flare this drops to just 30 mins of physio.  When my POTS was milder I was advised to exercise so I brisk walked at least 3 miles a day and went swimming a couple of times a week - it didn't stop my POTS becoming severe, in fact I think over-exercising was one of the things that caused it to become severe!

I think the type of exercise you do is important, swimming is probably the best as the water provides compression but anything recumbent and anything that builds leg muscle is good.

[Pistol]

2 hours ago, cmep37 said:

When my POTS was milder I was advised to exercise so I brisk walked at least 3 miles a day and went swimming a couple of times a week - it didn't stop my POTS becoming severe, in fact I think over-exercising was one of the things that caused it to become severe!

@cmep37 - this is what happened in my case. When I first becme sick I was working 12 hour shifts on my feet, and I refused to see the necessity to stop working. After 2 years of that I could no longer stand, had to use a wheel chair and started passing out and taking autonomic seizures even WHILE SITTING. I am convinced that had I had the ability to stop working and rest for a long period and then slowly increase exercise I could have regained some of my abilities. But we'll never know, because I pushed myself too hard. 

[MTRJ75]

As if the waking nightmare we experience daily isn't enough, it seems we have to be ready for confrontation with many of our doctors as well. So much so that we'll easily settle for someone who wants to help us, even if they don't know much about the condition. I've been through five primaries in the last seven years due to insurance issues. I'm pretty much down to the last available one in the area and haven't seen him in over a year. I only call the office when I need referrals now because I don't have the energy to argue with him anymore. 

I seem to always overdue it with any physical activity, even if I don't think I am in the moment. I hope it's just the time of year because I thought I was feeling a bit better March-June, but things seem to be declining again since then to the point where getting out of bed and staying out of it has been very difficult. I'm willing to do anything I possibly can to improve my condition, but I was pretty fit when this all hit me and doing many of the exercises recommended (thanks for the link by the way). 

I'll have to ask the cardiologist too, because the small heart thing still confuses me because I seem to be the opposite. 

 

[cmep37]

I have many similar regrets @Pistol - I loved my job as a litigation solicitor but worked 70 hour weeks and although I did eventually leave on ill-health grounds, I insisted on getting another job with fewer hours rather than giving up work altogether until I reached a point where I completely collapsed and could no longer stand at all without severe symptoms.  I also wonder what would have happened had I been diagnosed with POTS sooner - by the time I got a diagnosis I'd been ill for over 10 years and my body thought POTS was how things should work!  I wonder if meds would have worked better for me had I had access to them sooner.... but that way lies madness!

@MTRJ75I very seldom go to my GP any more with POTS issues - she is lovely but I know far more about dysautonomia than she does and she would be the first person to admit that.  She will happily do referrals to consultants and prescribe me any drugs she is allowed to but she just doesn't have the time to research a condition that only one of her patients has. Even my cardiologist can't answer many of my questions although I do prefer to be told I don't know than patronised!  Re exercise my advice is to stop long before you think you need to! Try to do the same thing every time you exercise so that will mean starting with what you can do on your worst day and building from there very slowly and gradually.  The one good piece of advice I got from my GP is that POTS (or any chronic illness) is a marathon, not a sprint so try to take a long view rather than focus on the short term.

[Sushi]

6 hours ago, cmep37 said:

Here is a link to his exercise programme case you haven't seen it

Microsoft Word - CHOP_Modified_Dallas_POTS_Exercise_Program.docx (dysautonomiainternational.org)

I completed 4 months of modified cardiac rehab and was able to double my exercise capacity but the program designed for me was much, much less strenuous than the one linked above. I was really impressed with the knowledge of the doctors and exercise physiologists involved. I only used recumbent machines (nothing upright except one lap around the gym before and after a session). They had me rest for 5 minutes after each 5 minutes of exercise and checked pulse and O2 levels after each 5 minutes. They also had me do stretches and to only exercise twice a week instead of the usual three times. It really showed me that I could gain some strength if an exercise program was designed for a dysautonomia patient and not standardized. My electrophysiologist told me to educate the rehab staff and they were very receptive.

[cmep37]

I would love to have an exercise programme put together for me but the one physio I was referred to saw me once and decided I was too complex for her!  I wanted her to teach me some exercises to strengthen my chest muscles to stop me popping my ribs out at the top and front (does anyone know any?) but she wanted me to do them standing - I asked if there was any reason I couldn't do them sitting and explained about POTS whereupon her eyes glazed over and she said she didn't think she was qualified to help me.....  I am waiting to see a consultant rheumatologist who can refer me to a team of physios with an interest in EDS who understand POTS but the waiting list is terrible - I will have been waiting for 5 years next spring!

[Pistol]

2 hours ago, cmep37 said:

I wanted her to teach me some exercises to strengthen my chest muscles to stop me popping my ribs out at the top

@cmep37 - I frequently pop my ribs out too! I had this happen to one particular rib for years before finally my chiropractor found what it was. Between her and a friend who is a RPT they showed me a maneuver ( mostly stretching and twisting ) that pops the rib back in. I often can do this at night, when I am relaxed. It works, but it does not help to prevent the rib from popping back out. With me it is a rib that was broken once and healed crooked so that it now is too short, therefore it easily pops out. I also found some useful videos on youtube that show PT's doing a stretch that pops it back in. 

[cmep37]

With my EDS I find I have some joints that just pop in and out a lot - I wouldn't really call them dislocations as they mostly go back into place as soon as they go out or are very easily put back into place!  My second rib on the top right is particularly bad (I have a permanent swelling there now which is not that nice to look at!), the bottom ones at the back on either side are also very lax and I also have a couple in the middle of my back that really bother me.  I was hoping that some exercises would help as when they pop in and out I sometimes trap a nerve which is excruciating for days and makes my HR much higher!  My left hip also used to be a nightmare before I started doing exercises to strengthen the muscles around it and now it hardly bothers me at all.  Thanks for the tip about youtube @Pistol- I will have a look and see if I can find anything useful!  Alternatively I need to make friends with a PT!