Mild POTS or IST? Hypervagotonia?

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So I’ve been seeing a number of specialists in my attempt to rule out all other conditions and get a diagnosis that explains my symptoms, one of those is a cardiologist. I was referred to him by my neurologist who suspected I have POTS.

So last month I got a Zio heart monitor patch for 2 weeks and then I had a tilt table test. The heart monitor did show a lot of “unexpected” tachycardia that didn’t correlate with activity. On the tilt table I felt unwell but my heart rate didn’t go up too much until they had me do the Valsalva maneuver and I promptly fainted after my heart rate zoomed and crashed.
The cardio said this wasn’t classic POTS but definitely a hypersensitive vagus nerve with very high vagal tone (hypervagotonia, which I have suspected for decades as I’ve always been a fainter even before I got sick) and either mild POTS or Inappropriate Sinus Tachycardia. So he prescribed some beta blockers (propanolol) and said we will go from there. He also told me I need to do small amounts of exercise and increase it every week, even though I insisted this drastically worsens my flu-like symptoms and often results in crashes that leave me in bed for days on end. He just reiterated that my dysautonomia would get worse if I deconditioned.
I feel kind of confused about all this and I’m feeling like maybe he thinks I’ve done this to myself by “resting”.

Has anyone else had IST as a result of their ME/CFS, specifically flu-like Epstein-Barr type symptoms? I’m wondering if all of this is caused by a resurgence of EBV. I have not yet been able to get the EA IGG test for that, but I may need to invest in it. In the meantime I’m taking the beta blockers. Any ideas?
 

Pyrrhus

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He also told me I need to do small amounts of exercise and increase it every week, even though I insisted this drastically worsens my flu-like symptoms and often results in crashes that leave me in bed for days on end.
Listen to your body. If a type of exertion makes your symptoms worse, then don't do it. Your doctor may not be aware of the latest research on ME and clearly does not completely understand ME.

Yes, many ME patients have different types of cardiac arrhythmias such as Inappropriate Sinus Tachycardia (IST). These are generally considered to be due to dysautonomia, just like POTS.

It is possible that some types of dysautonomia, such as cardiac arrhythmias and POTS, may be due to problems with the vagus nerve.
 
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Thanks Pyrrhus for your reply! Yeah it’s become clear that this particular doctor is not informed about ME, every time I mention it he ignores what I’ve said and just continues on. Other than that he’s a very good cardiologist though so I put up with it.
It’s interesting to hear that IST happens to ME patients too. I know POTS is a common comorbidity but I had to google inappropriate sinus tachycardia when he hit me with that one heh.
It’s so difficult to stick to not pushing myself physically out of frustration sometimes, and then days like this where I feel like I’m coming down with the flu after just walking my dog remind me that I’m not deconditioned or crazy, I really am ill damnit!
 

Zebra

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Hi, @Leechwife

I'm sorry this is happening to you!

Just TODAY I had repeat autonomic testing, which showed worsening since my previous test a few year ago.

The doctor's response:

"It's worse now because you have been sick for so long, and because you have lost too much weight [from GI dysmotility, which I can't control!] and because you are deconditioned."

UGH.

But with that said, he did suggest that my autonomic/cardiac dysfunction was such that a course of "cardiac rehabilitation" might help, which I am totally open to when it's safe to be in that type of group environment (aka: post COVID).

All this is to say, that if your doctor gives you grief about starting an exercise program, then perhaps he should provide you with a referral to a cardiac rehab program.

If you are interested in hearing more about cardiac rehab, @Sushi started a thread about this a while back, and I believe she had a positive experience.

Best of luck to you!
 

Sushi

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If you are interested in hearing more about cardiac rehab, @Sushi started a thread about this a while back, and I believe she had a positive experience.
Yes, I had a very good experience but we greatly modified the standard cardiac rehab program to suit an ME/CFS patient. My electrophysiologist told me to teach them and they were very receptive. I wrote about it here.