• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

POTS comes in waves

jimmy86

Senior Member
Messages
119
Hello,

my Pots syndromes seem to be coming and going in waves. Not just days, but weeks or even months.

For some weeks I do not have them at all, while in others they are bad.

More strikingly, the Pots symptoms seem to be negatively correlated with my cfs symptoms. In times when I am more fatigued I have less pots symptoms. Maybe the increased activity that leads to fatigue reduces the tachycardia...

Anyone experience similar stuff?
 

Old Bones

Senior Member
Messages
808
[QUOTE="jimmy86, post: 688201, member: ]In times when I am more fatigued I have less pots symptoms. Maybe the increased activity that leads to fatigue reduces the tachycardia...[/QUOTE]

I can't say my POTS comes and goes "in waves", which to me implies longer term variations. But, the severity does change from day to day -- quite significantly, in fact. Three days ago, my HR increased from supine to standing, completely still, by 101 bpm after two minutes. This is a record for me. This morning, it increased slightly less than the 30 bpm requirement.

My experience is the opposite of yours. In times of more fatigue, my POTS is worse. Increased activity (both physical and cognitive) worsens my tachycardia. Rest improves it.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
My symptoms definitely wax and wane over fairly long periods of time. For example, last October and November I went to the Emergency Room three times to get IV saline. Since then the POTS has been much better, and I've only had one episode of three-day-migraine. My ability to do activities of daily living have improved, too, but I am still severely limited and spend most of my time horizontal.

I find that being more exhausted results in more POTS symptoms and tachycardia, like @Old Bones
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I also had long periods of time of SEVERE POTS and less issues... though interestingly I kind of went through a build up where they were coming more frequently and lasting longer until they got built up enough were they were constant for three months.

Then they started to receed quite quickly. And now I have periods of weeks or so of more episodes then I start doing better. I'm relating it to periods where I'm struggling with low blood pressure which seems to wax and wane and POTS is worse when it starts running too low - I am assuming that low blood pressure is a contributing factor as a result - though who knows whats really at the root.