POTS - huge pulse increase from very smal movements

[halcyon]

My pulse increase 15 to 30 beats just by moving in bed or by raising an arm. Anybody else who has this problem?

What mecanism can be controlling this?

Yes, this happens to me when things are at their worst. I believe that people with ME suffer from a minor form of what used to be called diencephalic seizures or what’s now called sympathetic storming. We don’t have it so severely, but it’s the same idea. Excessive sympathetic outflow from the brain towards the heart and probably other organs.

As far as what’s causing it, I believe it’s the sympathetic nervous system being activated by immune activation/inflammation in the CNS.

For me personally, I also suspect it may be due to involvement of vestibular dysfunction as when I am in this state, even small movements of my head or body can simultaneously provoke tachycardia, dizziness, and nausea. The vestibular system and autonomic nervous system are more integrated than people might realize.

 

[Betty42]

Yes, this happens to me when things are at their worst. I believe that people with ME suffer from a minor form of what used to be called diencephalic seizures or what’s now called sympathetic storming. We don’t have it so severely, but it’s the same idea. Excessive sympathetic outflow from the brain towards the heart and probably other organs.

As far as what’s causing it, I believe it’s the sympathetic nervous system being activated by immune activation/inflammation in the CNS.

For me personally, I also suspect it may be due to involvement of vestibular dysfunction as when I am in this state, even small movements of my head or body can simultaneously provoke tachycardia, dizziness, and nausea. The vestibular system and autonomic nervous system are more integrated than people might realize.

This also just happen with me when I'm at my worst .

I support your hypothesis but I think the main problem when we are in this state is that the parasympathic nervous system are unable to slow down the heart beats after the sympathetic nerous system has increased the heart beats (the balansce between the two systems is totaly off!). Watch this movie about how the CNS affects the heart and the hypothesis gives even more meaning:

https://www.khanacademy.org/science...v/changing-the-heart-rate-chronotropic-effect

 

[Betty42]

Yes, this happens to me when things are at their worst. I believe that people with ME suffer from a minor form of what used to be called diencephalic seizures or what’s now called sympathetic storming. We don’t have it so severely, but it’s the same idea. Excessive sympathetic outflow from the brain towards the heart and probably other organs.

As far as what’s causing it, I believe it’s the sympathetic nervous system being activated by immune activation/inflammation in the CNS.

For me personally, I also suspect it may be due to involvement of vestibular dysfunction as when I am in this state, even small movements of my head or body can simultaneously provoke tachycardia, dizziness, and nausea. The vestibular system and autonomic nervous system are more integrated than people might realize.

Do you do anything to "break" this bad cycle when it happens to you?

 

[halcyon]

I support your hypothesis but I think the main problem when we are in this state is that the parasympathic nervous system are unable to slow down the heart beats after the sympathetic nerous system has increased the heart beats (the balansce between the two systems is totaly off!). Watch this movie about how the CNS affects the heart and the hypothesis gives even more meaning:

Sure, but if they always operated in lock step, they would cancel each other out and there would be no point. I believe the body is trying to do the right thing, it’s just that we don’t like the effects of it very much.

I’ve had extensive autonomic testing done. My vagal function was completely preserved, but my sympathetic tone was excessive. I don’t think there’s anything wrong with my PNS, it’s just that something or some things are driving my SNS harder.

 

[halcyon]

Do you do anything to "break" this bad cycle when it happens to you?

Just rest and try to move as little as possible.

 

[Sidereal]

what’s now called sympathetic storming

This is the conclusion I reached several years ago when I was at my absolute worst. Literally just moving an arm while lying in bed was enough to send the heart rate to 150.

 

[Betty42]

@sunshine44 @Belbyr @Sushi

I had my first two small doses om Mestinon today. First a 5 mg dose at 10 am and a new dose at 13 pm (gave me an effective dose of 7-8 mg at 14.30 pm as a result of the half-life of the first pill).

I had no side effects. Me feet (especially my toes) changed color from blue to a more normal skin color (my toes changed to light red). I felt calmer, almost like the “sympathetic storm” went from a storm to light breeze. After a couple of hour “the storm” and my blue feet was back.

Tomorrow I will start on 10 mg and probably take 5 mg later in the day.

 

[sunshine44]

@sunshine44 @Belbyr @Sushi

I had my first two small doses om Mestinon today. First a 5 mg dose at 10 am and a new dose at 13 pm (gave me an effective dose of 7-8 mg at 14.30 pm as a result of the half-life of the first pill).

I had no side effects. Me feet (especially my toes) changed color from blue to a more normal skin color (my toes changed to light red). I felt calmer, almost like the “sympathetic storm” went from a storm to light breeze. After a couple of hour “the storm” and my blue feet was back.

Tomorrow I will start on 10 mg and probably take 5 mg later in the day.

interesting Betty. Glad you got some relief for a bit.

 

[Sushi]

I had no side effects. Me feet (especially my toes) changed color from blue to a more normal skin color (my toes changed to light red). I felt calmer, almost like the “sympathetic storm” went from a storm to light breeze. After a couple of hour “the storm” and my blue feet was back.

That is good news! I mentioned it to my cardiologist today and she will look at Dr. Systrom's video though she agrees that I am parasympathetic dominant. She also used to do invasive exercise testing so it will be familiar ground for her.