Non-pharmacological treatment guide for POTS

[Sarah Tee]

Handy guide from Satish Raj, Kate M Bourne and Kavithra Karalasingham (University of Calgary)

Direct link to PDF:

https://cumming.ucalgary.ca/sites/default/files/teams/65/POTS_NonPharmaTreatmentGuide 01.05.22.pdf

[Sarah Tee]

For those new to POTS, patient or doctor.

[bumpkin]

I like this, as doctors really burned me out on all the prescriptions that were thrown at me until someone finally asked about environmental factors to help get to the bottom of what was causing my dysautonomia.. Until I finally found a good doctor, all they were doing in my case was throwing meds at the symptoms to cover those up as I got sicker and sicker

Maybe they'll come up with a companion guide to this about hunting down root causes and treating those non-pharmacologically too, in case a condition's not just 'POTS for POTS sake' but possibly triggered by something else that's going unchecked (which can easily be the situation even long after engaging numerous physicians and referrals.. Seeing my old medical records and the strange laundry list of stuff I reported for years and years that would definitely seem to add up to something if only I had only known what that could be, all of which pointed to MCAS, and alarmingly one dr after another just said asthma/allergies/anxiety/anemia etc.. they really didn't care to ask any more questions.)

It's exhausting how much digging we have to do on our own to find a good doctor to take us seriously, and even beyond that we have to learn more and more on our own to try to really get to the bottom of it.. and then we're told to leave it to the experts lol.. never again 😂

[Phil K]

I was an avid runner who slowly fatigued over the past 6 months. Diagnosed with Pernicious Anemia. Was still tired and down to running 3 days a week. I feel like there was another issue not being identified. Then i was exposed to a virus around june 9/2024. By june 17th i was bed bound. I keep reading about exercise and i am all for it. But how do i accomplish aerobic when i cant sit/stand? Still waiting on official diagnosis and potential meds, have increased fluids and salt. But i really want to get in front of this. I am already deconditioning quite rapidly. Any thoughts besides and under desk bike i can do lying on the floor? Thank you community

[Pistol]

17 hours ago, Phil K said:

Any thoughts besides and under desk bike i can do lying on the floor?

Hello @Phil K. I am so sorry you are having such a rough time. Unfortunately many of us on this forum have been in similar condition. When I was bedbound I was told to do core and leg strengthening exercises while supine. This helped a lot, I did some reps every hour. To not succumb to complete orthostatic intolerance I made myself;f sit up and stand up every hour as well. This helped a lot when I was able to get up and walk around again. 

Once I was able to do actual exercises I used a rowing machine, since it uses all muscles at once while being seated. Others have recommended a recumbent like. 

I hope you will get answers and recover soon. Hang in there

[Phil K]

Thank you. I will work on adding sitting increases to help. Much appreciated. What is your current status in regard to activity? I am hoping to get to the car, and watch my kids athletics events this fall? Maybe wishful thinking but I am going for it.

respectfully, -PK

[Pistol]

19 hours ago, Phil K said:

What is your current status in regard to activity?

@Phil K After making major life changes ( like having to stop working and moving into a small town ), being controlled on meds and IV fluids and slowly increasing activities I am considering myself stable. I now can walk about 15 minutes without having to sit down, and can easily walk a flight of stairs. The weekly IV fluids have made a world of difference. 

 

[Phil K]

Thank you.