I heard back from Dr. Joy today, my POTS test came back positive, which means I for sure have POTS. The way they test for it is by having you lie down for 30 minutes and drawing your blood, and then having you stand up for 30 minutes and drawing your blood while standing. Drawing my blood while standing nearly made me pass out, which is a POTS response, not a fear of needles but an androgenic response. What happens, and what they test for is a change in norepinephrine levels when drawing the blood in the supine position vs. standing. If you have POTS your levels will be higher while standing due to an androgenic response. If you test positive then you for sure have POTS, if you test negative, then you can still have POTS. I tested positive, and my standing noepinephrine levels are over 2 x the reference levels, which is very high.
What this means for treatment, I have no idea. Dr. Joy says I am a strange case because I have basically learned to self-manage most of my symptoms and prevent them from worsening intuitively. All of the lifestyle things they would have me do I am already doing, and have been naturally drawn to because I have figured out how to make things better. She doesn't want to put me on a beta-blocker because I am a runner and she says I would hate it. She is consulting with other Dr.'s to see what my treatment options are, but in the mean time my symptoms are generally much improved with the sodium and potassium increases, and I will be working with Elena to figure out if there are ways to improve the blood sugar fluctuation issues during endurance events.
Overall, I feel positive that we are going to figure this thing out and that my running and ability to finish races will improve as we figure out what works and what does not.
Hope things get figured out soon. I am sure its harder to solve when you are already being healthy
ReplyDeleteSo i'm not even sure what POTS is... rooting for you for your doctors and med team to figure out what to do. have a great day!
ReplyDeleteThere is a whole post on POTS in my archives Postural Orthostatic Tacycardia Syndrome.
ReplyDeleteAh. wow.
ReplyDeleteHi Tara!
ReplyDeleteGlad you now know what you're dealing with and it is good news that you're not diabetic.
Hmm, the symptoms for POTS sounds familiar... maybe I need to have mine checked! What causes POTS? Is it genetic?
Thomas
POTS, is a syndrome, and so there is not a specifically known cause. The diagnosis has also only been around since 1999, so the research on it is limited. There appears to be a genetic component that can be triggered by trauma, hormonal changes, and there are a lot of symptoms related to the anatomic nervous system.
ReplyDeleteI have been a runner for twelve years, averaging between forty to sixty five miles a week. A year ago I was diagnosed with POTS. I had experienced a horrible arrythmia on my bike when I was cross training, and heart palps when running. (Although I had experienced other less frightening symptoms for years.)
ReplyDeleteAt first I was a little nervous running with the diagnosis, especially since my doctor was unhelpful. But I found that drinking lots of water really worked for me. Just as you have said, dehydration is a big NO for people with POTS.
That said, I cannot take salt with the water, and try and up my salt the night before. (I run in the morning.)
I am planning to take part in a 50K,32 mile run here in Kaslo, BC next year, but will be sure to have water bottles at all aid stations if I can.
Good luck with your next race.
I am learning to manage POTS and I think that with your drive and passion, you will too.
Great blog site!
Best of Luck
Francesca