Invest in ME Conference 12: First Class in Every Way
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POTS and Heart Pounding

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by sb4, Oct 25, 2016.

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What is your worst POTS symptom?

  1. Heart pounding

    5 vote(s)
    41.7%
  2. Feinting/light headedness

    3 vote(s)
    25.0%
  3. Other

    4 vote(s)
    33.3%
  1. sb4

    sb4 Senior Member

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    Hey, Heart pounding is by far my worst symptom however I don't get the impression that most other pots would say the same.

    Who else finds this there worst symptom? What type of pots do you think you have? What do you do to help it?

    I think I have hyper pots, high blood pressure, and do not crave salt.
     
    hellytheelephant likes this.
  2. halcyon

    halcyon Senior Member

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    The palpitations are bothersome for sure, but the worst to me is the whole body weakness when you've been upright for too long. Where you can truly feel that your brain is not getting enough blood flow and your body is screaming at you to lay down immediately. And how you can never predict how long you can be upright before that happens.

    Also, that horrible sick feeling you get after taking a warm shower. I don't think I need to describe it, everyone with POTS will know exactly what I mean.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    For me also, the problems of being upright are the worst symptom.
     
  4. sb4

    sb4 Senior Member

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    Thanks for the replies.

    I am thinking that maybe those who have more sympathetic pots (hyper) will have heart pounding as a worse symptom, whereas parasympathetic pots would have the weakness described by @halcyon...
     
  5. ryan31337

    ryan31337 Senior Member

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    South East, England
    Hi @sb4, I have predominately hyperPOTS.

    Certainly the OI induced exhaustion and overwhelming urge to lie down mentioned by @halcyon & @Sushi is very problematic. Heart pounding in chest and pulsatile tinnitus can be frustrating too if it stops me from resting efficiently.

    On the advice of a POTS-literate endo I switched to low-carb (Atkins diet) a month ago and the improvement has been life changing incredible. When I described my symptoms in the context of a tilt table test suggestive of POTS he immediately said you've got reactive hypoglycemia. I assume this is due to the adrenergic interactions, will ask more when I see him next.

    I'll make a new post at some point with more detail as its not something I see discussed very often & I've never seen it in the literature. It could be something that's just more important for me than others but the doc was certainly aware of its connection to POTS. Definitely worth a go though, its simple to do and I felt like a new man after just a few days.

    Ryan
     
    hellytheelephant and sb4 like this.
  6. sb4

    sb4 Senior Member

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    @ryan31337 Great for you with the keto, I also recommend people who haven't tried it to do so.

    For me however that isn't the solution, I was doing keto before I got ill and 5yrs after and slowly getting worse. I have decided to up carbs as my gastroparesis has gotten worse.

    However I have heard pots makes it more difficult to control blood sugar and I think I have problems in this area now...
     
    ryan31337 likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It isn't really an overwhelming urge to lie down. It is that if you don't sit down immediately (on the floor, in a store, in a parking lot, wherever) you will crash to the ground. Many have hit their heads when they crash down.
     
  8. Alexi

    Alexi

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    Just jumping through this hoop myself and see cardiologist on Friday. Any tips on best questions to ask ?
     
  9. ryan31337

    ryan31337 Senior Member

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    South East, England
    Hi @Alexi,

    Cool, good luck. Will PM you.

    Ryan.
     

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