Replies to @mcolton16, I took your question to Dr. Dudenkov, an internal medicine specialist at Mayo Clinic, who…

Newsfeed Post

Newsfeed Post in blog Ehlers-Danlos Syndrome

POTS Part II: Treatment Jun 13, 2023 | By Samantha Campbell (@samanthacmaa)

Comment receiving replies

@colleenyoung

@mcolton16, I took your question to Dr. Dudenkov, an internal medicine specialist at Mayo Clinic, who wrote the above blog post. He has this information for you.

"It is very common for patients with POTS (whether post-COVID or after any other trigger) to be hyperadrenergic. This means that they have high levels of circulating stress hormones, most commonly adrenaline, much higher than patients without POTS. Adrenaline is further increased when standing or exercising. Two of the most common effects of high adrenaline is elevated heart rate and elevated blood pressure. Thus, it is not uncommon for us to see exercise induced hypertension (in addition to tachycardia) in patients with POTS.

It is important to understand that this elevated blood pressure while exercising is not inherently harmful. The key is not to stop exercising. With appropriate reconditioning, the blood pressure should improve also. I do not recommend monitoring heart rate or blood pressure while exercising, because it can cause anxiety and you may be tempted to not exercise, further making the situation worse.

For patients who are very symptomatic from their tachycardia and elevated blood pressure, to the point that they cannot tolerate even minimal exercise, it is also worthwhile considering a medication such as propranolol, which essentially helps block the effects of adrenaline on the heart and blood vessels, thus reducing heart rate and blood pressure. There are a few other medications that could also be considered, and I recommend discussing this with the provider who is helping manage the POTS. The purpose of a medication would be to help you increase your exercise, with the ultimate goal of discontinuing the medication."

So the important takeaway message, is to go slow, but to keep exercising. What kind of exercise do you do, mcolten?

Jump to this post

Replies to "@mcolton16, I took your question to Dr. Dudenkov, an internal medicine specialist at Mayo Clinic, who..."

hedstrong | @hedstrong | Jun 16, 2022

Hi Colleen and thank you for your help in directing me to forum. I have mentioned under the Skin blog, that along with my Hypermobile Ehlers Danlos and Mast Cell Activation that I also have POTS (as this trifecta is a common occurrence) but not that I have a rarer subtype called Hyperadregenic POTS - essentially this translates my body overproduces levels of noradrenaline, which causes a more rapid heartbeat (a fight or flight like state) and wanted to share I recently learned this often can trigger a mast cell activation syndrome event. Often, and is the case with me, we tend to have low BP. Also, I do not experience hypotension as most other more common POTS patients do and also lose more salt/sweat - that I had no awareness of as thought I didn’t sweat much. I was recommended to up my salt and as I’m chronically dehydrated I now take flavored NUUN tablets (can get on Amazon) in watermelon as lemon/citrus, food coloring etc can trigger my histamine/mast cell response. I found these worked best for me over other salt tabs and learned of this through my EDS community. I hope this helps someone. I was told to take the Prop…drug you mentioned; a beta blocker than cause weight gain and as someone who is less active and struggles with weight management avoided. I subsequently learned that having Hyperadgrenic POTS can actually trigger my MCAS and so I now get the importance of taking the medication - as I’m drug avoidant and figured I’ve gotten through this long but infact will do better overall. I had hoped to go on mitridine (sp) that I hear on a forum causes less MCAS triggers but later heard my subtype responds to the beta blockers. Wondering, would you be able to shed some light on whether the Mayo Clinic recommends mitridin/mitridine for Hyperadgrenic and if not what alternative beta blockers or even natural remedies e.g. hormone reducing foods, CBD supplements or combinations may or may not be recommended? Because I didn’t start the drug, I now have to resume my care and have a four month wait to be seen. I’m just beginning to learn about POTS and MCAS as these diagnosis came much later. Lastly, I’ll share in case others experience this…I have internal tremors on occasion and learned was linked to this in case anyone has also shared that experienced - but of course may be other causes worth persuing with their PCPs along with this. Thanks! hEDStrong

VIEW AND REPLY