For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Exercise and Postural Orthostatic Tachycardia: Awww, do we have to?

If you were to poll patients who have been diagnosed with POTS or OI, how many do you think would say they exercise on a regular basis?  How many would say they believe that exercise is important to their recovery?  I don't know the answer but I bet there are quite a few people out there who have not heard about or read the studies which document the improvements patients with POTS or OI can experience after embarking upon an exercise regime.

Here are, for your edification and reading pleasure, some of the reports I have found on supporting the fact that exercise training is significant to the treatment and improvement of symptoms in POTS and OI:
If you have found any other studies or papers on this topic please let me know.  And I hope that if you are a sedentary person with orthostatic intolerance or postural orthostatic tachycardia syndrome you will read this material and judge for yourself whether getting up and exercising is worth the effort.   


16 comments:

  1. I have exercised in the past, o just never got very far. I think what's different and interesting about dr levines program is the time spent recumbant and controlong hr. I has never been told those things before. So I'm excited to see how much of a difference those two things make. Before I was just told to walk and ny heart would be super high within a minute.
    I already drink a ton of water, prob 3-4 liters. Once I get to sustained exercise do I need even more water?

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  2. Hey Lucy - You are probably drinking enough water if the volume is around 3-4 litres. You don't mention salt intake so I assume you are also on a high-salt diet? Good luck with trying your exercises recumbent and using the HRM. Pls let me know how you make out.

    Best regards,
    Elisabeth

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  3. Oh yes, lots salt too. I don't know the exact amount but I know I'm been pushin it for years so it's tons. O should keep track of that too

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  4. When you started dr levine's program were you able to sit up all day? Shirt spurts throughout the day? Right now I'm exhausted just by sitting up and am really confused over whether I should work on sitting up or exercising?

    Do you know why rowing is better than swimming?

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  5. Hi Savannah
    Yes, I was able to sit all day but I wasn't long out of a wheelchair. Providing you have been diagnosed with just POTS then if I were you I would wean off any meds (with my doctor's participation) do the Lotsa Salt Diet and 3 litres of water daily for 3 or 4 days then start recumbent exercising.

    Good question about the rowing vs swimming...Rowing impacts very specific muscles which I understand are important to help maintain blood volume, improve cardio performance. Swimming is less exact as to which muscles are involved because of which stroke you choose to use...but that is only my guess.

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  6. What perplex me most is the fact that I was exercising on a regular basis when POTS hit me.

    I was lifting weight 3x week, doing indoor rowing 5x week, plus walking the dog, and indoor climbing.

    Now I can only row for 20 minutes at a very low power (50 to 80 watts), and when I do my usual upper body routine with light weight, my HR goes straight up to 125-130 bpm, which exhaust me (lower body is even worse!).
    It takes me 3 days of rest before I can contemplate doing another 40 minutes of exercise.

    It is all very frustating. Another problem is finding the energy to have a shower/bath afterwards. It might sound strange, but it is one of the reasons why I don't exercise as much, because I don't have the energy for both.

    As a cardiac nurse, I really do believe in the power of exercise, but I'm now wondering if it really works for all POTS patient.

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    1. My son was very active but had a history of chronic Upper respiratory viruses and strep when he first got hit with the "headache" that let to POTs. Find out he has a connective tissue disorder that is a factor. Geneticist is looking at Mast Cell Disorder to explain his body's reaction to infection and food allergies. Please read up on Dysautonia. Your POTS could be just a secondary illness. I believe that conditioning will improve his health but not cure him. Now if I can just find a GP who will stop treating him like its just a matter of will power to over come.

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  7. Christiane - Your comment is a really good one. I guess my questions would be:
    1. Have you kept hydrated? (I believe chronic low blood volume can trigger OI or POTS)
    2. Did you suffer from an illness or injury prior to becoming symptomatic?
    3. Did you have an operation recently?

    When I got sick the first time I was in pretty good shape too BUT I was overworked, tired and I am quite sure, had low blood volume.

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  8. Hi,
    To your questions I can say that:
    1- I drink at least 3.5L a day; more on hot days or when exercising
    2- The last illness I had was in January 2008 (17 months before I had to stop working because of POTS)
    and 3- No recent surgery.

    I have looked at this exercise problem from all possible angles, but it remains a mystery to me why I feel worse/exhausted after my exercise session.

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  9. Exercise intolerance is a pain. I occasionally can experience tremendous fatigue after I do aerobic exercise. Since I wear a heart monitor I have noticed that exhaustion is triggered when my heart rate goes over 160bpm.

    As an example: we just opened our pool and I decided to do one of my sessions swimming(I normally row or do Power90). About midway through my heart rate was >160bpm. When the session was finished I was TOAST! took me a day and a half to recover.

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  10. Liz, Thank you for your reply :-)

    I always try to keep my HR between 130/140 bpm, which means very slow rowing!

    What is Power90?

    I'm curious to know what are Dr Levines's guidelines about rowing; ie how many minutes, what power (watts) or stroke per minutes, or is it just about HR?

    Thanks :-)

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  11. Hi Christiane - See my page on "Exercise". Dr. Levine's workouts are varied as far as what heart rate range to stay in and those variations are based on your specific orthostatic profile. I suggest you may want to contact his office. The contact information is on my main page :-)

    Power90 is the Tony Horton workout series. It is one below the P90X you may have heard of.

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    1. Hello,

      I was wondering if you could tell me if you can do some of the Power90 workouts sitting down?

      Thanks.

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  12. I think the suggestion that POTS or OI is caused by deconditioning is ridiculous considering some patients developed the condition during periods of excessive rather than reduced physical activity and some POTS patients are ex-professional sportpeople.
    Exercise may assist in SOME forms of POTS by strengthening the skeletal muscle pump, by increasing peripheral blood flows in patients with Low Flow or excessive vasoconstrictive states, but it wont improve A3 receptor function or neuropathy in patients with these underlying problems or improve angiotensin II catabolism in that subgroup of POTS patients.
    From my own experience, Ive had two relapses that I exercised myself out of - my third and worst relapse is still going strong despite the fact that I now jog 3 miles every day! My training protocol currently is 40 pushups, 40 situps, and a 3 mile run, yet a crash again once every two weeks and i was exercising regulatly BEFORE my current relapse.
    This to me demonstrates that exercise helps but does not fix or treat the underlying problems in POTS and that it provides NO protection from relapse.

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    1. Please make sure you don't suffer from a Connective Tissue Disorder called Chiari. Chiari can cause cerebral fluid to leak. My son was advised not to do vigorous sports or lift heavy weights until we can figure out what is going on. Swimming, rowing and recumbent bike are great for him for now and I think will improve his condition.

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  13. Hey "Anony" - I am not sure "ridiculous" may be the right word considering researchers induce symptoms in healthy subjects through bed rest.

    I too tried pushing myself into an exercise regime which had me jogging towards a 5k run 3-4 times per week. FORGET IT! I got worse.

    As for getting sick while exercising - YES it seems to be true for many people including me! One of Dr. Levine's researchers told me about how people who were/are athletes seem to experience more severe symptoms when they get ill than couch potatoes who come down with POTS.

    A managing your exercise program is a critical factor if you are going to successfully exercise while ill. I have shared my own observations that when I get my heart rate above >160bpm it seems to trigger exercise intolerance (1-2 days feeling crappy). Some days it is easier to get above 160 than others. Tracking heart rate while exercising may give someone additional clues as to what triggers their exercise intolerance. IF YOU DON'T MANAGE YOUR EXERCISE YOU WILL GET WORSE OR BE UNABLE TO CONTINUE!

    Eating right, staying hydrated and keeping your body strong through managed exercise are approaches which, to me, don't take too much common sense to understand.

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