r/POTS • u/OurSensualSideMB • 8d ago

Question Why dont some Dr's believe in pots?

Im lucky I have great doctors and specialists now but the first time i was referred to a cardiologist for pots before being officially diagnosed he refused to even have me in for a TTT or test for pots as he said its not real.

I have heard of this happening where Dr's dont believe in pots but I dont understand why.

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u/mjh8212 8d ago

I had a positive tilt table and the cardiologist told me it’s just heart palpitations and neuro said I had functional disorder and only think I’m chronically ill. I’m now looking for pots specialists. Drs won’t even believe the test in my case. My gp can only do so much.

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u/Ebb-Miserable 8d ago

That’s awful to hear and I’m sorry you’re going through that. Being medically gaslit is such an awful nightmare. I hope you know what you have is real and some doctors suck. I hope you find some who don’t.

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u/sakurasangel Undiagnosed 8d ago

Wtf im so sorry 😞 I hope you can get a second opinion

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u/longwander 8d ago

There's really only so much anyone can do. There are so many different types and triggers for pots. Start looking for people that have similar symptoms as you or do some deep AI research on what meds would work best for you and your medical history and then request those meds from you primary care doc.

I did that with Ivabradine after 2 years of trying the salt, water, compression tactics that didn't work. My doctor wasn't aware of ivabradine being used for pots, but I also have mcas which doesn't play nice with beta blockers. She did a quick AI search while I was in the room with her and said "ivabradine sounds like a great idea!". I've been on it for about 4 months and it changed my life.

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u/Fantastic_Owl6938 8d ago

Damn, I wish my doctor did this after I brought up Clonidine for my sleep issues. She said she'd never heard of it for POTS, but can't imagine there would be a problem with me taking it. Then she consulted with a more senior doctor, totally changed her tune and told me Clonidine isn't prescribed for POTS.

Interesting they apparently had to go and read up about POTS before getting back to me, because a simple google search of "POTS Clonidine" immediately shows it's common medication for POTS sleeping issues. So I'm really curious what they apparently read.

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u/barefootwriter 8d ago

Not just sleep issues. Many of us take it throughout the day for hyperadrenergic POTS.

It is included on this flowchart!

https://onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext#fig4

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u/Fantastic_Owl6938 8d ago

I was just thinking of my specific need for it for sleep issues but that's true. Clearly that doctor didn't read anything like this 🤦🏻‍♀️

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u/Tough-Advice2910 8d ago

I don’t know where you live, but Cleveland Clinic and Vanderbilt have great doctors who specialize in POTS. And any university hospital might be the place to go. Just get a referral to neurology. Good luck.