u/soryu0

this is my main symptom that bothers me. also have quickened heart rate on standing, nausea on standing, etc. but the painful headache is the worst symptom. it comes on immediately when i stand or sit up and gets worse the longer i’m up. lying down almost eliminates it entirely. but i’m practically bedbound because of it.

haven’t been able to get in with a cardiologist yet, but i’m curious if others who have this have things that work for them. like medications or other things. thanks in advance!

In 2021 I took a dose of mdma, my first time ever. For weeks afterwards I had trouble standing without getting faint. An ER trip and cardiologist appointment later I was diagnosed with dysautonomia and given propranolol. Thankfully, the symptoms got better on their own after a few weeks and my life went back to normal for the most part. Only occasionally over the years does it bother me, mostly when I’m standing in place for too long and it’s hot, I’m dehydrated, I’m sick, etc.

I’ve been having trouble with my sleep lately so my doc prescribed me doxepin at 3mg. I’ve taken a TCA in the past without issues (amitriptyline). I took my first dose last Thursday. On Sunday, I started having a horrible headache. Monday morning after laying down and sleeping it felt better, but then returned when I got up. It’s definitely a positional headache.

I quit the Doxepin on Monday but now as it’s Wednesday I’m still having the positional headache, as well as other dysautonomia symptoms like dizziness, nausea, fast heart rate. I can only imagine this is a dysautonomia flare triggered by that Doxepin. I’m writing this from the ER right now so we’ll see what they say, since my regular doc couldn’t fit me in. I see that Doxepin can cause symptoms similar to dysautonomia but I don’t see any cases where it’s caused a flare like this that lasts even when off of it 72hrs later. It was a small dose, taken only a few days, so it’s hard to imagine a meaningful amount is still in my system. Plus, the symptoms didn’t show until a few days into taking it.

I hope it goes back to normal because I can’t even sit up without getting dizzy and my head pounding.

i’ve been taking silenor a few days now at 3mg, and i think it helps a little. not a ton but it does do a bit to help me. i’d like to try 6mg at some point probably.

however, the past two days i’ve had horrible headaches for most of the day which i believe are from this medication. advil isn’t helping them much. is this a side effect that i can expect to subside? if not, then this med is not worth it for me.

for the past 6mo i’ve been struggling to sleep. i can’t sleep through a whole night; i wake up 2-4 times. i never ever sleep longer than 4hrs at a time. i can typically fall asleep really quickly, so thankfully that’s not an issue. but at one of those wake up cycles i’ll be unable to fall back asleep. so sometimes that’s at 4hrs, sometimes at 6hrs, and only on some occasions will i get 8hrs (never longer than that, even when i’ve hardly slept nights before). i’d say i average 5-6hrs a night of broken sleep (i’m 24F for reference). i used to never struggle with insomnia

the cause of my insomnia seems to be chemical related due to mdma i tried 6months ago—since then i’ve never slept the same. seems something’s off in my brain as i also developed other negative cns symptoms from that mdma.

i was hoping it’d just wear off but it’s not budging. i’ve already tried trazodone which didn’t work and also further worsened it i think due to the serotonin system implication since it was already “damaged” i tried zopiclone too which didn’t help. i wonder where to go next. but i am in general worried about my health and envious of my bf who can pass out for 9hrs straight. man!

i’ve had vss 5yrs and it’s been pretty much stable the entire time. but in the past 5 months it’s been much worse, and i don’t know why. i trialed a few doses of an ssri and then 2mo later my symptoms worsened so maybe that’s why? but i’ve had ssri’s in the past w 0 issue :(

i used to only get trails at night, off of moving lights or when i moved my eyes around. but now i’m getting them in the daytime too, off of people’s hands, anything with a highlight when i move my eyes leaves a streak, and now videos and games are really stutter-y/laggy like due to losing my smooth processing

i hate how fkn fragile this disorder is. that something so minuscule can make everything worse, permanently. i mean i hope it’ll go back to my previous baseline, but going on 5mo and never reading of others getting better is making me lose hope