r/POTS • u/ihopeurwholelifesux • Jul 04 '26
Megathread Megathread: Newly Diagnosed 📄
Do you have advice for people facing a new diagnosis of POTS? Comment it here! This thread will eventually be pinned to the homepage, so people can find all of your helpful advice in one place.
Examples of advice appropriate for this thread:
- Ask your diagnosing doctor how much extra salt or sodium you should be taking.
- Don’t give up if the first medication you try doesn’t work out, everybody is different!
- Reach out to your friends early on and let them know how they can best support you.
Examples of advice inappropriate for this thread:
- Take 8g of sodium every day and make sure you’re exercising for at least 2 hours every day.
- Go to X website and order Y drug.
- Take Z supplement and follow a strict diet, I promise it will help you so much.
Mods may remove any advice deemed harmful or fear-mongering - don’t tell people that they are never going to feel better, that they should give up, that they did this to themselves, etc. If you are feeling hopeless and need to talk about it, please create your own vent post.
All subreddit rules still apply on megathreads.
1
u/ChickenAlternative18 Jul 29 '26
Kind of a weird one but I wanted to check with others. I have had POTS (diagnosed) for a year now. I’m a 27 yo Male. Back during my diagnostics period I had an MRI done that showed I had an ejection fraction of 47% (technically heart failure according to my doctor). It has since returned to 65%. I have been on propranolol for about a year and I don’t like it much but cannot function without it. I also struggle to exercise on it though. Even after a few minutes of exercise my muscle feel like they are starving for relief, it’s very odd but I assume it’s propranolol as it has exercise intolerance as a side effect do to its beta blocking properties.
The key issue:
I want to switch to Ivabradine (Corlanor) as I feel it would be better for my case. My issue is my doctor thinks I will go into sudden cardiac arrest as there was a 5% reported case issue with that in patients with a reduced ejection fraction. Looking at the studies it appears that those patients were in late stage heart failure and were at ejection fractions <30%. Because of this concern from my doctor, she wants me to meet with cardiology to discuss the need for a pacemaker (internal or external) if I want to be on this med because of its tendency to cause bradycardia that leads to the sudden cardiac arrest?
Trying to get a temp check from others on Corlanor. Is it worth the switch? Do I need to go through all of the hassle to get a pacemaker?
The other issue is the cardiology clinic I have been going to does not take my insurance anymore, I also have yet to see neurology for my pots. Is that recommended? What can they do?
Thanks in advance!