Anika

367d

Anyone else have flares without “explanation”? I can have totally normal HR and BP numbers but still feel terrible and teetering towards pre-syncope. What helps? Anyone know what could cause it?

Propranolol

Postural Orthostatic Tachycardia Syndrome (POTS)

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  • Smash

    367d

    Yep. Happens all the time..

  • acrowlookedatme

    367d

    this happens to me A LOT, sometimes I pass out when i’m just laying down for no reason

  • Jadie

    367d

    Look into your blood volume specifically. If your doc put you on meds to lower or increase any numbers and thats it but you need more it acts like a bandaid. A lot of us with POTS will end up developing hypovolemia due to different things so if nothing is being done about it youll still experience a lot of symptoms. Stuff like propranolol helps a lot but thats treating the symptoms not the cause. Correcting any blood deficiencies usually helps. My hypovolemia is so bad even turning over in bed can cause presyncope and the only thing that stops it is salt and fluids. Its something to look into and if this isnt the cause then I hope you are able to find one soon so you can feel less shitty.

  • Anika

    366d

    Thank you so much for that suggestion! I have an appointment with a POTS specialist next week and I will for sure ask about that, I never even thought of that so it’s super helpful to have that suggestion, thank you!

  • Jadie

    366d

    No problem! I was struggling so bad until I found out salt fixes things. There are other things like Saline and iron infusions that can help maintain proper blood volume as well so I hope your doctor gets on it!

  • Anika

    366d

    I’ve been trying to have extra salt and tons of fluids too but it seems like it sometimes it doesn’t even matter how much water/liquid IV and salt I have because sometimes I have flares anyway! But I’ve never tried saline so I’ll definitely bring that up to my doctor. I’ve been using Salt Stick’s electrolyte fast chews and those are helpful a lot of the time but not always…so idk🤦🏻‍♀️ one of the worst parts about POTS is the inconsistency of symptoms and flares

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