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

Sushi

Moderation Resource Albuquerque
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19,935
Location
Albuquerque
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

Moderator Resource
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17,335
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Southern California
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

Moderation Resource Albuquerque
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19,935
Location
Albuquerque
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

Senior Member
Messages
592
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

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
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

Senior Member
Messages
297
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 :)
 

charlie1

Senior Member
Messages
315
Location
Canada
informally called sick sinus syndrome where you move from bradycardia to tachycardia, experience lightheadedness, etc. I confused the tachycardia with POTS.
Hi Sushi, did you have tachycardia or bradycardia when lying flat? My HR is 40 - hi 40s when lying down at night and doesn't get to 60 till around noon. But anytime of the day I can get POTS upon standing and / or walking which will cause PEM. Were your symptoms prior to the pacemaker at all like that?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Sushi, did you have tachycardia or bradycardia when lying flat? My HR is 40 - hi 40s when lying down at night and doesn't get to 60 till around noon. But anytime of the day I can get POTS upon standing and / or walking which will cause PEM. Were your symptoms prior to the pacemaker at all like that?
Sorry about that. No, I mainly had bradycardia—with a resting pulse of about 47 and going down to about 43 at night when sleeping. I never really had POTS though I had random tachycardia for 20 minute periods or so—but not in response to standing. This stopped when I got a pacemaker. Since I posted about this I have also had my mitral valve repaired and this has also helped with OI. There seem to be a lot of heart connections with ME /CFS.
 
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Tella

Senior Member
Messages
397
Hey, do u think a pacemaker or a similar treatment may then help with pots? Which doctor would u recommend to see to diagnose pots etc? My hr skyrockets and my blood pressure goes down so from my own assessment I have pots and orthostatic hypotension. My general doc dismissed me and said pots is normal (at first he didn’t even know what it was until I explained) and I should walk fine n get on with my life. I felt so hurt as I can’t evensit up let alone walk :( ;(
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hey, do u think a pacemaker or a similar treatment may then help with pots? Which doctor would u recommend to see to diagnose pots etc? My hr skyrockets and my blood pressure goes down so from my own assessment I have pots and orthostatic hypotension. My general doc dismissed me and said pots is normal (at first he didn’t even know what it was until I explained) and I should walk fine n get on with my life. I felt so hurt as I can’t evensit up let alone walk :( ;(
Pacemakers will not slow down the heart rate—just speed it up and steady it. So it probably would not help POTS patients. Though I did have tachycardia sometimes and it stopped after I got a pacemaker, I don’t know why that would be. Perhaps because my pacemaker will outpace PACs which can lead to various arrhythmias and tachycardia.

POTS is definitely not normal! I see an electrophysiologist and she is familiar with dysautonomia and POTS but not all electrophysiologists would be. Ideally you would look for an autonomic specialist but they are very rare. You could phone local electrophysiologists and ask if they would treat the heart manifestations of autonomic dysfunction. I hope you find someone!