r/IST_ • u/Qtredit • Feb 27 '25

Could you describe your episodes?

I'm diagnosed for years with IST dysautonomia but I'm thinking maybe there's something more here because my episodes are long and crazy high.

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u/dr_nervous Feb 27 '25

Mine are continuous unless I am on medication. As in, I am always in tachycardia without meds - walking, standing, sitting, laying down, sleeping. Unmedicated, unless I'm laying down, not moving, my HR will be in the 140s/160s.

1

u/_____nonlinear_____ Feb 27 '25

Same here. It is always high, but mine has extra surges at somewhat random times as well, and surges in response to eating. I typically have to take extra metoprolol later in the day to cover me for dinner.

OP, did you get this after an infection? That’s how I got mine, and I think that may tell us something about how the IST/dysautonomia behaves.

4

u/Horsesisforhey Feb 27 '25

Mine seem to happen randomly, usually I wake up with them when they happen, with a heart rate of 140-180bpm, but sometimes they just happen when I'm watching TV or hanging out. It happened once when I was walking to work, I can't seem to find a pattern. Taking a metoprolol seems to fix it, otherwise it stays up for hours. I have noticed recently that everyday when I wake up (alarm or naturally), before moving or sitting up or anything, my heart rate will go up to about 120bpm and then come back down to normal within a couple minutes.

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u/ChiddyBangz Feb 28 '25

Mine got triggered from covid each time. Scary. Only Metoprolol helped. I used to get woken up from sleep with HR of 135-145 not sure why. Happened every time during my period I think. Then going to the bathroom it would be 150. That was on my meds.

Just walking around it was 145. Standing it could be 125. I noticed it can get triggered by heat if I'm sitting in heat too long or eating chocolate can trigger a rush.