Hello Everyone,
I recently discovered these forums and have been lurking the past few days and would greatly appreciate hearing your input on a few questions. While I'm not sure it is helpful past a certain point, I am really drawn to hearing about other's experiences in these forums and others.
Questions:
- Can light, graded exercise make my POTS worse? I haven't been experiencing PEM, so have been keeping it pretty light to avoid PEM and more long covid symptoms if possible.
- Is it helpful/possible to "re-train" the body into orthostatic tolerance by gradually standing more and more frequently? Or can testing the body make things worse?
- Is medication necessary/helpful if I feel I currently am functional? (just not to the extent previously with exercise/orthostatic intolerance--have gotten coat hanger headaches after being on my feet too much).
- What is the role of (chronic) stress / maladaptive sympathetic overdrive in development of POTS? I've been trying to meditate and relax to combat what seems to be sympathetic overdrive.
- What role do you think EDS plays in POTS? Issues with vasoconstriction causing overcompensation?
Background: male in his late 20s. Believe I have a mild form of hyperPOTS -- had primary doctor test my BP/HR while supine (HR = 60bpm, BP = 106/65) and standing (HR fluctuated between 78 and 93bpm, BP 124/74. I believe I have a type of EDS as I pass a number of the criteria (very flexible, soft/stretchy skin, dislocations...). Been very active my whole life, participated in athletics. My hands/feet have always gotten really cold compared to the rest of my body (temp regulation issues). Have noticed throughout my life that often upon standing I'll have a big rise in HR / presyncope. Someone in my immediate family has ME/CFS.
After getting sick with covid ~1 month ago, I got a wearable HR monitor and noticed immediately I would have large jumps in HR upon standing -- anywhere from ~60bpm to 110bpm and in between. Exercise/orthostatic intolerance. I am looking into POTS/dysautonomia doctors. Been increasing fluids and trying to eat about ~1tsp of salt daily. About a week ago I started trying light exercise (compared to my previous standards) on a rowing machine and more recently some yoga--haven't experienced PEM so far. Been prescribed metropolol to lower HR upon standing but am hesitant to take it.
If anyone has made it this far, I really appreciate your time and input if you'd like to comment,
Thanks