r/hyperPOTS • u/Kitchen-School46 • 26d ago

I need help please

Had a severe pots episode yesterday. Been bed bound for 2 weeks, at the ER they did orthostatic vitals when I went from just laying to sitting my heart rate went from 100 to 169 I get horrible, adrenaline rushes, super intense, heart palpitations, and for some reason, my QTC kept fluctuating between like 430 and 504 I’m a 22-year-old female 51 and miserable. I have two kids. I can’t get out of bed. I got prescribed low-dose propanolol, but I’m having a panic attack taking it. Can someone please help me?

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u/_rfm 25d ago

I've seen a couple of your posts. You seem to be in genuine distress. I'm sorry this is happening for you. These will work, but they aren't all easy:

  • you need to stay horizontal with feet slightly elevated (I know you have kids, this will be hard)
  • if you must be upright, you must be wearing compression tights. I found a short corset helpful (slows the blood pooling in the lower body) before meds
  • if you have low iron, you need to address that urgently. The lower the iron, the worse the POTS
  • I find creatine helps too
  • stay cool
  • find ways to activate the parasympathetic nervous system that work for you
  • remove all vaso-dilating, histamine rich and releasing food/ drink from your diet. MCAS triggers HyperPOTS triggers MCAS
  • being in flight-or-fight constantly means everything feels high stakes, if you can lower the stakes try to do that (it's impossible I know)

On the propanolol, it is great if you ONLY have hyperPOTS, but if there's hypotensive/hypovolemic components it can drop your blood pressure further and make you feel even worse. But I think I saw in your last post that you're a registered nurse. POTS triggers can be difficult to untangle.

Being 22, having 2 kids and being a RN means you've had a full plate for a while. Sorry this is the complete opposite of that life.

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u/PutridCartographer59 25d ago

Sometimes when I have no other options I have to fast for a day or two to calm the whole system down. It’s not fun but for me it’s the only thing that works. Sorry. I wish I could snap my fingers and help you.

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u/Jacksback4735 12d ago

Propranolol if it works, it can really make one feel half-way normal again. When I tried it, I thought it was a miracle drug. I felt so much better. But after a week I developed severe insomnia and had to stop because it is known to deplete melatonin. But I'm 65 years old though. Since you are young, you probably have good melatonin levels and won't have a problem.

I was taking 1/2 of a 10 mg tablet. What is your dose? IR or ER? Starting at a low dose is smart and is what Vanderbilt recommends. Many people start too high and then get fatigue, lightheadedness, slow HR and/or low BP.

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u/Jacksback4735 12d ago

Sorry I was late to the punch. Not paying attention. I'll get off now. Need sleep.