The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Thought I had POTS: turns out it was SA node dysfunction!

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sushi, Aug 29, 2018.

  1. Sushi

    Sushi Moderation Resource Albuquerque

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    I was diagnosed with OI in 2006 (the neurally mediated hypotension type), and in the last few years I thought that I had also developed POTS...but, I was wrong. Rather, the heart's SA node was misbehaving and creating what is informally called sick sinus syndrome where you move from bradycardia to tachycardia, experience lightheadedness, etc. I confused the tachycardia with POTS. I am just posting this because there is a slight chance that others who assume they have POTS might have also misidentified it, and sick sinus syndrome can be effectively treated. I just had a pacemaker implanted. :thumbsup:

    It is a huge relief and I feel so much better. I had thought that my ME/CFS had progressed as I began losing function a few years ago. So now I am hoping to regain the lost function which would put me at a more liveable level of functionality. While it is slightly weird to know that a computer is controlling my heart rate, it is doing a much better job than I was!
     
  2. maple

    maple Senior Member

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    Sounds like a big step forward. Good for you!
     
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  3. Ema

    Ema Senior Member

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    So glad that it is helping you! What a relief!
     
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  4. AdamS

    AdamS Senior Member

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    Amazing news! Really hope you manage to get some functioning back, make sure you keep us updated on your progress!
     
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  5. Mary

    Mary Moderator

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    @Sushi - I'm so glad for you that you feel so much better! :thumbsup: That's fantastic.

    So how was it determined you had the SA node problem instead of POTS?
     
  6. Dechi

    Dechi Senior Member

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    @Sushi I’m glad you’re feeling better ! Do you still have NMH ?
     
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  7. Mel9

    Mel9 Senior Member

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    Yes, this is a marvellous result and I hope you feel much better for a very long time. Did the operation knock you around?
     
  8. Sushi

    Sushi Moderation Resource Albuquerque

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    I had a lot of tests--3 week heart monitor, I have my own EKG machine (Kardia mobile) and I had emailed numerous EKG strips to my Electrophysiologist, my symptoms and 3 cardiac treadmill stress tests. My EP had been telling me for over a year that I was going to need a pacemaker but she had to qualify me for insurance and that happened on the last stress test a few weeks ago--I couldn't raise my heart rate enough to begin to support the level of exercise I was doing--so my aerobic function was so bad that the EP and I just laughed together (after I regained enough breath to laugh!).
    I do but it isn't bothering me nearly as much. I need to do a poor man's tilt and see if that has changed. My guess is that the higher HR is compensating for the drop in BP. I haven't had any near syncope since I got it.
    Yep, that is a good way to put it--the surgery really knocked me around and I've been MIA here for the last 12 days or so.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    wow its great to hear that you had something which was fixable
     
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  10. voner

    voner Senior Member

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    Sushi,

    great to hear you got some relief and feel better and thanks for the post. What are your thoughts on your experiences with " autonomic specialists“... were they fooled by your symptoms also? if so, any ideas on why?
     
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  11. Shoshana

    Shoshana Northern USA

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    I hope this will do you a world of good, @Sushi

    Keep us posted on how it effects your symptoms.
     
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  12. Sushi

    Sushi Moderation Resource Albuquerque

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    I did one last night and there is great improvement though I only did it for 4 minutes. I'm not sure why but it went like this:

    sitting: 110/53--pulse 60
    standing 2 minutes: 102/62--pulse 69
    standing 3 minutes: 103/64--pulse 60
    standing 4 minutes: 109/62--pulse 60

    The pacemaker is set so that my pulse will not go under 60. A few months ago when I had my EP check it I dropped 30 points systolic within 3 minutes.
    I had a great autonomic specialist (who had POTS himself and was on disability) but I haven't seen him since I moved to another city 7 years ago. At that time I was clearly NMH by my TTT and by the poor man's tilt he did at the end of every appointment.

    In the last few years I have been seeing an Electrophysiologist who is dysautonomia-literate and the best resource in the city--though, by her own assessment, she is not an expert. She recognized that I had OI and even sent some of her other patients who had dysautonomia, to talk with me but her testing and treatment for me was more focused on the strictly cardiology aspects of my illness as that is what I had come to her for. (I also have Afib, though Afib does have an autonomic connection.)

    So, no, she wasn't fooled into thinking I had POTS, as she had seen the signs of SA node dysfunction and was gently preparing me for the need for a pacemaker. She is careful about her language and tries to phrase things in a manner that the patient will be able to hear as she knows that most of us will go straight to the internet and may scare the s**** out of ourselves reading about bad scenarios.
     
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  13. TenuousGrip

    TenuousGrip Senior Member

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    Couldn't be happier for you, @Sushi .

    I'm also reminded of how important it is for all of us -- to the extent that we're each able -- to keep pursuing a more 'definitive' or 'fundamental' diagnosis. I'm so glad you've stayed so well informed, so glad you've kept at it all this time, and so glad that's all paying off :)
     
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  14. valentinelynx

    valentinelynx Senior Member

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    Yay! I'm so glad to hear it! :)
     
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