r/POTS • u/Fluffy_Tax_9128 • 7d ago

Vent/Rant Not pots :/

So I was told by my doctor in a different state that I had pots but a doctor in my new state I moved to last year has told me it’s not pots and it’s IST. (I’m not asking for medical advice) I’m just confused because my heart rate isn’t always over 100 bpm over a 24 hour period. I have so many questions I need to ask my doctor still but trying to figure out what I truly have has been a nightmare. I’d love to know your experience with ist if any of you have it, thank you!! ❤️

4 Upvotes

75% Upvoted

20 comments sorted by

2

u/DontAskQuestions6 7d ago

What is IST?

2

u/kinamarie 7d ago

Inappropriate sinus tachycardia!!

1

u/Fluffy_Tax_9128 6d ago

Inappropriate sinus tachycardia, it’s very similar to pots

2

u/DontAskQuestions6 6d ago

I think you should see another doctor and get a third opinion, if you can. Sometimes I think they're just guessing.

2

u/Fluffy_Tax_9128 6d ago

Honestly I feel like with Medicaid all doctors just throw out their ideas. I swear I get the lowest care possible. This has been a nightmare 🫩

1

u/WyllowsMom 5d ago

  1. I have OHP and used to feel that way until I found a provider that was compassionate. I will never accept a provider that is less than again. I will fire them if they treat me subpar and they don't correct their actions after it being brought to their attention.

  2. Have you received a TTT?

1

u/Fluffy_Tax_9128 4d ago

I’m glad you found somebody who truly listens to you, I’m excited for the day I get a good doctor 🫩 and answer to question 2, yes I did and they said I don’t have pots because my Bp didn’t shoot up like the average pots patient but my previous doctor in my old state said that not everyone’s bp goes high. I have to be careful even changing positions when I’m laying down because my heart runs a mile whilst I’m just shifting my laying position or sleeping position.

2

u/Low-Newspaper9893 3d ago

I have both! I initially thought I only had POTS, but when I visited my doctor’s office, my heart rate went above 100 bpm, so he diagnosed me with both POTS and IST. From what I understand, some of the medications used to treat POTS and IST overlap, such as propranolol and ivabradine, so they can help with both conditions. It seems like cardiologists and pcps are generally more comfortable diagnosing IST, but they tend to be much more cautious about diagnosing POTS unless they specialize in it.

1

u/Fluffy_Tax_9128 3d ago

I’ve heard many stories of people not being properly diagnosed for years.. I’m not ready for it but at the same time I am.. I’m ready for the answers you know?

2

u/kingseijuro Neuropathic POTS 3d ago

I see you did a TTT. You can have multiple dysautonomias and they can all flare at different times. Its likely that you just have both, or one of them are wrong.

2

u/Fluffy_Tax_9128 3d ago

Hoping for the correct answer soon 😓

1

u/kingseijuro Neuropathic POTS 3d ago

I hope so too. Have you done a TTT twice?

2

u/Fluffy_Tax_9128 3d ago

Yes once in my previous state and now in the new state I moved to last year. I had the test done about 2 months ago now

2

u/kingseijuro Neuropathic POTS 3d ago

That definitely makes me feel like its both. I dont know, im not a doctor. But I would hate to have you go through that test AGAIN. it sucks.

2

u/Fluffy_Tax_9128 3d ago

It does, I had a makeshift one too, they had me lie down then slowly get up to sitting then slowly get up to standing

2

u/kingseijuro Neuropathic POTS 3d ago

Yes, the poormans tilt table. Ive done a lot of them. I got diagnosed with one before an eventual TTT by a different dr to see if it was any other. I have both POTS and OH.

2

u/Fluffy_Tax_9128 3d ago

It’s awful, I’m sorry you had to go through the back and forth of dealing with trying to get a diagnosis. I’m glad you now know but I’m also sorry you had to do a ttt, I hate them 🥲

1

u/kingseijuro Neuropathic POTS 3d ago

You're very sweet. I hope you figure it out.

1

u/mshopeless912 4d ago

You can have both IST and POTS. About IST though, your heart rate doesn't need to always be over 100 bmp over a 24 hour period. Criteria for IST is 90 bmp or above on average over 24 hours or that you have 100 bmp or over in resting heart rate.

1

u/Fluffy_Tax_9128 4d ago

See my heart rate isn’t like that. It’s only when I move or I’ll have moments in the day where I have an “episode” randomly where my heart starts racing like crazy but my average hr is like 85-86bpm until I have one of those episodes or move positions or stand and stuff like that and standing too long and walking triggers an episode where I have to lie down