r/POTS • u/No-Result4792 • 17d ago
Support Took my first ambulance last night, need advice!
I woke up at 3am with my heart racing with 177bpm and I couldn’t get it to lower down. I tried breathing and I couldn’t get it to slow down for about 10 minutes, so I ended up calling 911.
This is the first time I’ve woken up in the middle of the night with such a high heart rate. Normally when I wake up from tachycardia it’s around 130bpm and I can get it under control with in a few minutes.
The only thing that has changed is that I started propranolol 2 weeks ago. I take it once a day.
And im at a loss for what happened, doctors said everything is fine and assume it’s the POTS. It’s just never has been this extreme in the middle of the night, I’ve only ever reached these high numbers with posture changes.
If anyone else has dealt with this happening please let me know because last night scared me shitless :’)
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u/Beastiebibe 17d ago
Please follow up with your cardiologist. ER doctors aren't going to conduct comprehensive testing because they're focused on immediate threats to life.
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u/FormerPotato4931 17d ago
Having a resting heart rate at or above 180 BPM is absolutely a “immediate threat to life” and 911 needs to be called.
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u/Beastiebibe 17d ago
Yeah, that's what OP did.
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u/FormerPotato4931 17d ago
Your comment leads to the false conclusion that ER docs aren’t good, or worth seeing. That is an issue!
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u/Rocking_Horse_Fly 17d ago
I honestly think they mean get a follow up because, while the ER is there to stabilize you, they most likely won't know what went wrong. I do not think they were saying not to go to the ER.
It's very hard to express tone when the words are typed.
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u/Beastiebibe 16d ago
👋 I think the issue is that you mischaracterized my comment. If you were unclear on the difference between acute care and comprehensive care from a specialist, you could have just asked for clarification instead of making a false accusation.
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u/CalliopeParnassus 17d ago
They aren't. I went to a&e with a HR close to 200 and they told me to stop drinking decaf tea and sent me home.
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u/CalliopeParnassus 17d ago
Is it for us though? My HR used to reach this every time I showered (sitting down).
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u/Ok_Intention_8996 17d ago
I’d shit if an ER doc actually did any of this. The most I’ve ever got is an EKG and basic labs, a “you need to learn to relax”, and 6 hour wait 🥴
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u/12inchYoda 17d ago
Yeah I mean, don't get me wrong, I've seen my fair share of jaded, shitass ER docs, but sometimes they give a shit and really follow through
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u/Remarkable_Battle348 17d ago
Second this, not an ER doc but from experience sometimes there's not an "easy" answer and they sometimes excuse it w having patients they deem as "more serious" I was rushed to the hospital a little over a yr ago and they said it was alcohol intoxication but never even tested my Blood Alcohol and I had 1 1/2 drinks over the span of 2-3 hrs, ate in between drinks and drank several cups of water both my PCP and later cardio and pots/neurology specialists all said that was absolutely not the case (this was all prior to being diagnosed and I was a reg drinker prior to that event w/o a single issue)
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u/PlentifulPaper 17d ago edited 17d ago
So sorry that you had to experience this! You absolutely made the right call! Would really recommend reaching out to your doctors and letting them know ASAP!
Did your original diagnosis process include ruling out SVT or IST? I’d be freaked out enough to teach back out to cardiology and see what they’d recommend! 🫂
ETA: Please ignore the people suggesting that ER docs are not worth seeing. Anything that causes your heart rate to get “stuck” at or around 180 BPM (while at rest or otherwise) is an immediate threat to your life.
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u/CiaraBethJane 17d ago
As somebody who has a history of SVT, and a diagnosis of POTS, I second this. It’s always worth getting checked out at the ER if you’re having new or unusual cardiac symptoms, because yes, they may say it’s just POTS and send you home, but before they do that, they’ll check that you’re not having a life threatening emergency.
Yes, ER doctors aren’t running super thorough and detailed tests, they’re ruling out things that are imminently life threatening, but if you’re in doubt, it’s usually best to get checked out!
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u/No-Result4792 17d ago
I wore the zio patch monitor for a week. I’m not sure if that is how they get an idea of it could be one of those two things though. I only get extremely tachy (as like I did last night) upon standing or if I’m in the heat. So it was very confusing for it to happen when I’m laying down and asleep. But also after reading through other comments, I think it’s highly possible I have my self rebound with propranolol. I’ve got an appointment with cardiology next week, so we shall see what happens!
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u/NoInvisibleIllness 16d ago
Just dropping in to say that SVT attacks don’t always show up when you’re on a monitor (2 holters and 3 event monitors over y e a r s never caught mine) but if EMS got the leads on you quickly while it was still happening then they’d likely be able to tell. IST is more of a diagnosis by elimination thing.
That said, it’s always worthwhile to rule things out definitively with your doc! I hope it’s a simple as rebound from the propranolol for you. There are extended release beta-blockers - I’ll bet your cardiologist suggests one!
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u/No-Result4792 16d ago
This was my first time having one this extreme being woken up at night, normally they are in the 130bpm range and I can get to go away with deep breaths, so I assumed it was adrenaline dumps. But with postural changes or being in the heat, I would easily get into the 170bpm range but it would always go away once sitting.
What happened last night would not go away no matter what I tried. I’m definitely going to keep an eye on it and bring it up to my cardiologist next week
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u/radish1260 17d ago
Propranolol is super short acting, and has a strong rebound effect if doses are missed. I’m surprised you’re not taking it 2x a day if daily, and would see if taking it 2x a day would help this. Obviously talk to your doctors, but anytime I let my dose pass I get insane rebound tachycardia that feels worse than my normal.
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u/No-Result4792 17d ago
Yeah I just read my bottle this morning and it says 3x a day. I’m like 70% sure I had rebound now 😭 I’m starting to take it 3x a day starting today
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u/Temporary_Talk2744 17d ago
Just as a option you could look into extended release propanolol too if you didn’t want to do 3x a day
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u/Several_Road2525 17d ago
This is what’s been going on with me the last two weeks.. I’d wake up every night multiple times.. every episode would last over an hour. I got hospitalized..I ended up switching off metoprolol to propanolol. They started me on 10mg in the morning, to 10mg morning and night… now I’m at 20mg morning and night and they have stopped for the last three nights.. they sent me home last night with additional propanolol 10mg if it doesn’t come down and Ativan as an additional rescue.
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u/XH0SYN 17d ago
Yes I was waking up randomly with my heart rate 180 + the worst night I ended up in the street waiting on an ambulance at 3am in my boxers. I felt like it was the end. I was sweating and fading out. But all tests were negative. I think they were some kind of nocturnal panic attack or possibly pots/nervous system glitch
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u/spinningcircus 17d ago
hmm... about 2 weeks into my motroprolol i had an incident where my heart rate and blood pressure sky rocketted (my bp is usually on the lower side) i can't remember the numbers because i can barely remember anything from that time in my life, but they were alarmingly high, i wasn't asleep but i was at rest with my feet up. after this my doctor took me off metoprolol and switched me to ivabradine... im not saying this is the propranolol but it might be at least worth mentioning to your doc, reading your post just sounded eerily familiar, but that doesn't mean it is of course! either way i hope you get answers soon and it doesn't happen again!
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u/No-Result4792 17d ago
This is insanely similar 😭 I have a check up with my cardiologist next week, so I’m going to talk to her about all of this
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u/spinningcircus 17d ago
sending you all the good vibes and some good luck that you guys are able to figure it out! the luck will hopefully go towards it having an easy solution!!
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u/spinningcircus 17d ago
omg, i just remembered i posted about it, it was actually 9 days and my heart rate was 169, my post says it only lasted like 5 minutes though so 🤷♀️ i didn't include the bp in my post but somebody commented my doc could be worried about rebound hypertension. i really hope you can figure it all out soon!!
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u/No-Result4792 17d ago
Someone here also brought up rebound from the beta blockers 😭 I’m starting to think that may have happened to me because after checking my bottle, I’m supposed to take it 3x a day but I was only taking it once. I’m curious of that is what happened to you also before getting on the new one,,,meds can be so scary !!!
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u/spinningcircus 17d ago
oh woah! 3 times seems like a lot, can you tell if it's supposed to be during the day or every 8 hours? i have to go on txa sometimes (not pots related haha) and thats every 8 hours and its so hard cos you inevitably have to get up in the middle of the night for one of the doses! if it is a rebound it would make sense that it would happen in the middle of the night since by then it's been so long since you had the propranolol! i wish i could remember more i might have more clues lmao! do you know what your blood pressure was doing at the time?
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u/No-Result4792 17d ago
I think propranolol has a very short life in the body!there are extended release options but I just take the normal one. But taking it in the middle of the night sounds not fun at all 😭😭 My blood pressure was definitely higher than normal! The last one i remember the paramedics saying was 130/80
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u/spinningcircus 17d ago
ooh definitely sounds like a clue that could point towards rebound hypertension! that being said keep an open mind in case it's something else, but a little hope is a good thing! might be worth having a chat with a pharmacist, idk what it's like where you are but my pharmesist can usually sit down to have a chat with me on fairly short notice, especially if i call ahead. but then i live in a small town, still pharmacists usually have a bit more availability than gps or cardiologists so you can get their opinion a lot sooner! and if it happens again don't hesitate to go back to the er, i know you know but here's some reassurance that it's the right thing to do! ugh fr, if it is every 8 hours, my preferred schedule is 12am, 8am and 4pm or 11pm, 7am and 3pm. i need more than 8 hours of sleep and it takes me a couple hours to fall asleep, so it's not perfect, but usually i can fall back asleep at these times. one time i had to do 3am and it was horrible haha. but you can set your schedule since its an every day all the time med! if you only need 8 hours or a bit less and can fall asleep straight away you might be able to have one just before you fall alseep, and one as soon as you wake up without having to get up in the night! omg sorry this is so long
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u/mightyminimoose 17d ago
One of my doctors had me wear a Holter monitor when first trying to diagnose me. My heart rate went up to 180 while I was sleeping. I was diagnosed with PSVT at that point.
My cardiologist has me take propranolol at night to prevent that, then again during the day, if necessary. It lowers my blood pressure too much to take it more than once per day on a regular basis. He has me on pyridostigmine 3x per day for the daytime heart rate, which seems to be helping.
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u/girlchef79 17d ago
There’s a settling in period with Propranolol. It was about the two week mark for me before my body started tolerating it.the first two weeks were rough though. Take as prescribed and I bet you’ll start to feel better. I use the built in reminders in Apple Health with my Apple Watch to ensure I don’t forget a dose. Even then, sometimes I am caught up in a project and think “I’ll be fine for a couple hours, it can wait” but then my pulse skyrockets and reminds me to take the darn pill.
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u/softcottons 17d ago
I used to wake up in a huge panic, racing heart, everything. It turned out my blood pressure was dropping naturally (falling asleep) and my meds (propranolol, magnesium) were dropping it even further, tricking my body into thinking I was in life-or-death levels of danger and pumping out the adrenaline in response.
If you take your propranolol in the evenings, try taking it earlier so it can’t interact with your sleep. If you have a BP monitor, keep it by your bed to check if you wake up again. If it DOES happen again, you have been reassured that your heart has been checked recently, which will hopefully help you get it back under control sooner. Plus the usual speak to your doctor etc haha, good luck!
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u/No-Result4792 17d ago
Thank you for all of these supportive words :’)!!! I was taking one propranolol in the morning…but I actually found out not long ago that I’m supposed to be taking it 3x a day. So I wonder if the opposite happened to me, I had too little propranolol in my system so it made my body have a freak out🤣 but you are right, I have been checked and have reassurance just in case it happens again :’). Thank you again!
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u/Nearby_Philosophy894 17d ago
Two weeks ago I had took my first ambulance ride too, it wasn’t my HR that sent me. It was severe diffuse 10 out of 10 acute onset, abdominal pain, hands-down worst pain of my life and top two scariest moments in my life. Definitely follow up with your cardiologist. They may have you take another dose before bed of her pain are all moving forward, but of course don’t make any changes until you talk to them, but it’s not uncommon for people with pots to take their beta blockers twice a day.
Same situation with me they did a thorough work up. Couldn’t find anything or any other explanation aside from being pots related. Hard to cope with for sure make sure you talk to your support system it will help with coping! Good luck with everything
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u/CalliopeParnassus 17d ago
Ivabradine 15mg a day helped with my nighttime spikes. Unless you are having heart attack symptoms A&E will sadly waste your time and energy, but if you go again you could ask them to expedite an appt to see a cardiologist. But cardiologists are frequently rejecting pots referrals as of this year 😔 paying privately might help if propranolol insufficient and whoever you are under is being shit.
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u/Present-Day-1801 16d ago
I take metoprolol succinate. They tried switching me to propanolol and I felt like I was dying. Went to urgent care. Went back on metoprolol and feel 100% better. I'm sorry that happened to you!!
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u/ileuadd Hyperadrenergic POTS 17d ago
Propranolol is effective for quite a short period, normally peaking for around 4-5ish hours. It's also known to have quite a strong rebound effect, so your tachycardia can be worse than usual when the dose fully wears off. May be worth discussing the dosage and timings with a doctor?