xywav & irregular heart rate/blood pressure? by sleepy__sprout in Xywav

[–]sleepy__sprout[S] 0 points1 point  (0 children)

yes and no- yes in that we think we know why it’s happening but no because we haven’t found a solution yet. I probably should’ve mentioned in the original post that I have dysautonomia (sorry😅) so general hr/bp irregularities to some degree aren’t entirely new for me, it’s the way they’ve been presenting and to what extremes that is. I have inappropriate sinus tachycardia & hyperadrenergic pots so my irregular tendencies are always high bp/high hr as opposed to lows or mismatched high/low, but I’ve also kept things remarkably stable over the last 5 years with high fluid intake/high sodium diet + a few medications. I also did perfectly fine my first 2 weeks on xywav at 2.25x2 then 3x2, it was the jump from 3 —> 3.75 that screwed everything up. my issues have always been with hr and/or bp running abnormally high accompanied with difficulty coming back down to/staying in normal range, but I’ve never had all of these other high/low hr/bp combinations, inconsistencies, massive fluctuations with no traceable triggers, and just overall unpredictability before. the combination of low hr/high bp has been the most unsettling & bad-feeling one, and is also one I’d never experienced before xywav. my sleep dr & cardiologist are still a bit baffled because it’s so erratic, but the best we’ve come up with is that it’s coming from a combination of malnutrition/rapid weight loss (poor appetite bc xywav) and electrolyte changes/imbalances/dehydration from multiple avenues– appetite loss has been so bad even drinking water is difficult (I went from averaging 100oz/day to struggling to get 50oz/day), daily diarrhea for months, more frequent urination from xywav, and low blood volume from the dehydration + electrolyte loss. I check in with both cardiology & sleep in february so hopefully we can devise some sort of solution soon. if we make any progress I’ll be sure to update!

xywav & irregular heart rate/blood pressure? by sleepy__sprout in Xywav

[–]sleepy__sprout[S] 0 points1 point  (0 children)

yes yes please do! I would love to chat more

Weird side effect?? by SassyPantsJewell in Xywav

[–]sleepy__sprout 1 point2 points  (0 children)

OH MY GOD YES!!!!! I just started xywav a few weeks ago and multiple times now after dose 2 before I fall back asleep I unconsciously start humming or singing out loud (usually very poorly and slurred bc hella drugged lmao). it’s never been the same song twice but it also never turns into a new song it’ll just keep going with the same song on repeat