Thought I had POTS: turns out it was SA node dysfunction!

Sushi

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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!
 

Mary

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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
@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?
 

Sushi

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So how was it determined you had the SA node problem instead of POTS?
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!).
@Sushi I’m glad you’re feeling better ! Do you still have NMH ?
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.
Yes, this is a marvellous result and I hope you feel much better for a very long time. Did the operation knock you around?
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.
 

voner

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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?
 

Sushi

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I need to do a poor man's tilt and see if that has changed.
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.
What are your thoughts on your experiences with " autonomic specialists“... were they fooled by your symptoms also?
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.
 

TenuousGrip

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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 :)