POTS after Covid -- Newbie Questions

[Guero]

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

[Pistol]

Hello @Guero, welcome to this forum! Although I cannot answer all of your questions I can share what I know from my docs and my own experiences. 

- exercise is recommended and necessary in order to manage POTS. Light aerobic exercise is usually recommended. As someone who has PEM I use a rowing machine and adjust the reps according to my abilities each day. Not exercising makes me worse, since deconditioning is a known problem in orthostatic intolerance. 

- as to your question to retraining the body: there is such a thing as orthostatic reconditioning exercises. One I do is standing with the back against a wall, feet apart and slightly in front of the body. Slowly slide back down the wall until knees are bent, stay there a few seconds and slide back up. This really helps but it has to be increased slowly. Another exercise is standing holding on to a counter or table and switching between standing on tiptoes and standing on heels, with toes pointing in the air. 

- regarding medication: it all depends how you feel and how much you can function. If you become tachycardic and feel dizzy or short of breath or any other typical POTS symptoms you may benefit from a beta blocker ( Metoprolol is frequently prescribed as first treatment ). Depending on the mechanism behind your symptoms other meds are more helpful, but that all needs to be determined by your physician.  

[MikeO]

I use this one as well "One I do is standing with the back against a wall, feet apart and slightly in front of the body. Slowly slide back down the wall until knees are bent, stay there a few seconds and slide back up" in fact i just did the other day when i was feeling a bit orthostatic my bp's were in the mid 80's after the maneuver my blood pressure went back up into the mid 120's so it does have a measurable effect. 

I do agree with @Pistolthat deconditioning is the worst place to end up (i have been here before). Anything you can for exercise is better than nothing. I use a treadmill and do a progressive incline routine. It was really hard at first but over time it has helped greatly. 

[Guero]

@pistol -- Thank you for your helpful reply. Your contributions to these forums are a great resource that no-doubt benefit many. As to your input and my original question:

- Exercise / retraining the body: the wall-squat seems like an interesting exercise -- I'll try it out. I assume the leg/abdominal muscles pumping, and the pressure/constriction on the mid-to-low body helps push blood up to the heart. I've been gradually increasing my activity to ease myself into it. I'm trying to better understand the point at which training is beneficial (building) as opposed to detrimental (over training, too depleting/taxing/stressful). 

- Medication: I decided to hold off on the metropolol another week, giving myself time to get a good understanding of my BP/HR before beginning the medicine (just bought a BP (upper arm cuff) monitor). I'm getting around okay so I don't think it's pressing. 

 

@MikeO -- thank you for your input. Best of luck continuing your treadmill work.

 

Looking forward to working with a professional who may be able to narrow down on the mechanisms causing my POTS. My "crackpot" theory that I'd like to investigate is something along the lines of:

Lax connective tissue from some form of EDS impacting autonomic regulation of my BP / HR. Recent stress and damage from COVID in the background of chronic stress or an overactive sympathetic nervous system has resulted in my ANS being slightly out-of-whack. I'd be interested to know if anything up with my neurotransmitter mechanisms and levels of norepinephrine levels during a tilt test.  

 

Thanks again for your input. A tidbit to laugh at, and something that I've personally (and others, anecdotally) benefited from -- exposure to cosmic-rays (sunlight infrared):

 

 

[Pistol]

9 hours ago, Guero said:

I'd be interested to know if anything up with my neurotransmitter mechanisms and levels of norepinephrine levels during a tilt test.  

This is what I have thought after reading your posts. I have HPOTS, so I suffer from excessive vasoconstriction from too much norepinephrine being dumped from being upright or other triggers. That results in tachycardia, high BP, chills, tremors, chest pain, shortness-of-breath and - if I dont lie down in a quiet environment in time - will inevitable lead to either syncope or seizures ( the vessels getting so tight that there is no blood flow to the brain ). 

Getting cold hands and feet and shaking/tremors/feeling cold is often caused by norepinephrine dumping. Getting a TTT with neurotransmitter testing sounds like a very important test for you. My diagnosis was confirmed by my autonomic specialist who did blood work for those , after lying down for 30 minutes and after walking for 30 minutes. Both norepi levels were elevated.