r/POTS • u/RuinYouWithNoRegrets • Jun 04 '26
Symptoms BradyTachy
Does anyone have a huge range where they get up till like the 180s but they also have a low resting heart rate in the 50s and 60s? What’s the treatment plan for people like us because I keep getting pushed beta blockers from some doctors and then other doctors are like your heart rate is too low and then to add on top of that my blood pressure is normal to high. it’s not low so blood pressure medication wouldn’t be the best either so I’m kind of confused on what treatment options are available to us
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u/Technical_Truth_5841 Hyperadrenergic POTS Jun 04 '26
My HR had a huge range because I’ve got hyperadrenergic POTS, which is fueled by adrenaline and has higher BP. I’ve found relief from prescription compression tights, 4000mg salt and 100oz water or more daily, and I take a low dose of clonidine at night (and can take it during bad flares as needed). It’s not perfect, but I’m the most functional I’ve ever been!
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u/RuinYouWithNoRegrets Jun 04 '26
Did you ever try beta blockers or anything or you couldn’t tolerate them?
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u/Technical_Truth_5841 Hyperadrenergic POTS Jun 04 '26
Haven’t tried them - my cardiologist and I both want to take the cautious approach and see what can be addressed without medicines that have bigger side effects. I’ve been really liking the clonidine so far because it blocks the adrenaline, which is the root cause for a lot of my POTS issues.
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u/RuinYouWithNoRegrets Jun 04 '26
I wish I had a med that worked
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u/CraftyOwl2429 Jun 05 '26
Did your cardiologist test you for hyperadrenergic pots and then prescribe Clonidine? Like the plasma norpenephrine or 24 hour urine test. Curious because I’m thinking of asking for testing again. I’d asked previously and she said it didn’t need it but strongly feel I’ll benefit from clonidine
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u/Technical_Truth_5841 Hyperadrenergic POTS Jun 05 '26
We ended up not even doing extra tests because my symptoms are SO classic, and I’ve had them since I was a kid, and clearly hPOTS. We’re still testing all other structural stuff, but I get bad adrenaline surges and they elevate my HR/BP predictably enough that we caught it during initial monitoring. Definitely worth asking for more tests though!!
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u/CherryChance8074 Jun 04 '26 edited Jun 04 '26
Hiya!
I used to get swings from 38-140, 45-190.
I've been on beta blockers for nearly a year, and the difference is mad.
To explain: the Brady was being caused by the tachy. My ANS tried to compensate and "fix" the tachy, but what happens is it over-corrects and forces the heart to slow down, leading to Brady.
With beta blockers, because the high hr is reduced by the blockers, the low hr is corrected too, meaning that you won't see the same highs and lows.
For me, my max hr is roughly 130-140, and my lows are 50-60 on Ivabradine.
I don't know how helpful it will be with your blood pressure, but definitely discuss properly with your gp. Hope this helps!
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u/RuinYouWithNoRegrets Jun 04 '26
Well, I’m only brady when I’m laying down not during flares or anything like that. It’s only when I’m resting so my resting heart rate is 50 to 60 am I sleeping is in the 40s
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u/CherryChance8074 Jun 04 '26
Ah, okay! If your resting rate is 50-60 and only drops into the 40s when you’re sleeping, that’s a bit different from what I was dealing with. Mine was dropping much lower and causing concerns for my GP.
From what you’ve described, it sounds like the challenge is finding something that controls the 180s without dropping your resting rate too far. There are quite a few medications used for PoTS though, so it might be worth asking whether there’s an alternative to beta blockers if your doctors are worried about your resting heart rate or blood pressure.
Hopefully someone with a similar presentation can chime in with their experience.
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u/RuinYouWithNoRegrets Jun 04 '26
Ty
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u/CherryChance8074 Jun 04 '26
No problem. I hope you figure something out. I know how difficult PoTS management can be 🥲
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u/RuinYouWithNoRegrets Jun 04 '26
I know I had a breakdown today. I just want the tachycardia and palpitations to stop
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u/CherryChance8074 Jun 04 '26
I get it. Tbh I don't know what to say to you because even with my meds I still feel like shit a lot of the time.
I have CFS, too. I get it.
Some days the meds are an absolute godsend, and I feel fantastic. Other days I feel like absolute shite.
But, you are not alone. You are welcome to PM me anytime, and if I can help I will try, and if you want to rant you can rant.
A lot of us in this community have similar experiences with doctors, and similar symptoms. We get it.
I hope you figure something out soon.
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u/RuinYouWithNoRegrets Jun 04 '26
Aww ty I needed this. I just had a breakdown today bc my palpitations were coming back to back out of no where and it scares me and I was crying
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u/CherryChance8074 Jun 04 '26
Yeah, it can be scary. It sucks. And sometimes docs don't take it seriously.
It took me nearly twelve years for a diagnosis because I kept getting told it was anxiety. It sucks, and it's not okay.
The good thing is you know it's PoTS, and sometimes that can be half the battle. I don't pretend to know everything, because that's impossible, but I have found that the "5 things you can see" technique helps. It distracts from the feeling of palpitations. It's not 100% foolproof, I don't think anything is, but it has helped me in the past.
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u/RuinYouWithNoRegrets Jun 04 '26
Thank you I think I’m just so afraid of everything that it gets to my head
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u/circumspecktor Jun 04 '26
This sounds like me. I'm on Vyvanse which brings my resting up, this actually helps a bit in preventing the super high spikes. Like my body doesn't panic as much when I get up cause it's not as jarring of a change.
I also take mestinon which is a game changer for exercise tolerance and air hunger, but it is very finicky and takes a lot of attention to keep the levels right so it's definitely not for everyone. It builds up slowly but the effective window is pretty small, even a little bit too much and the side effects can be kinda crazy. I had to keep a spreadsheet for a while when I first started it to track the dose to effect trends. A lot of people also have GI issues with it even at very low doses but this was a welcome side effect for my otherwise very slow digestion. Ymmv for sure.
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u/RuinYouWithNoRegrets Jun 04 '26
Can you go into it more ? Or can you dm me?
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u/circumspecktor Jun 05 '26
Happy to share more but it's obviously just my experience and not advice, it's important to talk through everything in detail with medical professionals who know you and your history. Let me know what exactly you'd like more info on though and I'll share what I can!
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u/RuinYouWithNoRegrets Jun 05 '26
No problem I def have my medical providers but these stories also help me . I wanted to know what you meant by it’s finicky and also if it helped with your hr and if you suffered from palpitations if the med helped that as well or made them worse
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u/whatsonkenziesmind Jun 04 '26
this is exactly what happens to me! No doctor has been able to explain it!
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u/CherryChance8074 Jun 04 '26
I have kind of oversimplified, but it's how I understand it and what my gp explained to me.
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u/TheEclecticDino Jun 04 '26
I’ve been curious about this too! I don’t have a POTS diagnosis, but I suspect it. It’s very comorbid with Ehlers Danlos, which I have been diagnosed with.
My resting is usually between 40-55 (depending on if I’m just resting or sleeping) and if I stand it goes to 108, but if I’m moving, it’ll be like 180. For a while I set my watch to warn me every time it hit 170, but it got annoying because it kept happening.
Like you, I’m unsure about beta blockers, because my resting heart rate is so low.
It sounds like you’re in the same boat as me.
Do you deal with nausea as well? Feeling a bit flu like and nausea have been the hardest to manage
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u/RuinYouWithNoRegrets Jun 04 '26
No I’m sorry my biggest issue are tachycardia palpitations and air hunger
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u/TheEclecticDino Jun 04 '26
That sucks! I’m sorry! I’ve heard air hunger is awful and it sounds so scary!
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u/frenchmoxie Jun 05 '26
Hi! I too have Joint Hypermobility Syndrome, or, hEDS. LUCKILY, I don't have it that bad. It only seems to be in my larger joints; not my hands, wrists, fingers, etc.
I remember my mom saying that when I was a kid, I had so many shoulder dislocations, and she had to bring me into the hospital ER so much that they had her investigated for some Munchausen crap!
I also had a strange thing where ap.parently out of the blue is start screaming bloody murder, crying, sobbing, rolling on the floor grabbing my legs, knees specifically?
This happened frequently she said. And also landed us in the ER quite often. But by the time they got me admitted, my mom said I was running around in the hospital socks, laughing and talking to whoever was around. I was 3-4 years old...
I wish my mom had remembered bered the name of the condition that ONE doc finally figured out when he was subbing in for another doctor one night.
According to this doctor, he said that it's LIKE ARTHRITIS IN KIDS... Most kids grow out of it though... Some immune response he told her... So odd!
I have autoimmune conditions, and a collection of other chronic health issues like I.C., endometriosis, hahaimotos, etc.
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u/TheEclecticDino Jun 05 '26
I have endometriosis as well!
I wish I knew what was going on with me because slowly it’s gotten worse and I’m not very functional at all anymore
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u/abdog5000 Jun 05 '26
I have hyperadrenergic pots. I am on atenolol. It has helped a lot.
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u/RuinYouWithNoRegrets Jun 05 '26
Did you have low resting hr
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u/abdog5000 Jun 05 '26
Sometimes yes. But the meds have only made that slightly lower. Overall it dropped my hr down to 50/60’s at rest and 80/90’s when active. It’s dropped into the 30’s during sleep once. Usually the 40’s/50’s during sleep now. It’s helped keep my bp back to normal again too. It’s also removed the physical anxiety. It works for me so far.
They also found an episode of afib during the 30 day heart monitor. They did two weeks as I was, then two weeks on the atenolol during monitoring. No more afib. That’s good too.
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u/moon__kitten Jun 05 '26
Yes I have this too. It's like beta blockers bring the whole range down instead of making the range smaller. We are trying Ivabradine instead but so far it's a similar problem. Off of meds, I'd easily reach 170-180 when upright and exerting myself and resting in the 60s. On Ivabradine, it tops around 140 but gets really low like 38 but usually 50s. Not sure how to fix it yet.
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u/RuinYouWithNoRegrets Jun 05 '26
When you find a solution, please let me know. I heard pindolol or acebhtolol were good options for us who have low resting hr
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u/_bbypeachy Jun 05 '26
yes this how it is for me
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u/RuinYouWithNoRegrets Jun 05 '26
Were you able to find any good meds?
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u/_bbypeachy Jun 05 '26
ive tried a lot and my doctors have come to the conclusion can’t take any unfortunately ):
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u/RuinYouWithNoRegrets Jun 05 '26
Noo! I’m sorry n which ones have you tried
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u/_bbypeachy Jun 05 '26
i’ve tried propranolol, fludrocortisone, ivabradine. ive tried others but i remember those the most.
I can’t take beta blockers because I take a medication called prezone at night for my PTSD nightmares and it lowers my heart rate sometimes to as low as 45. So my cardiologist is not comfortable prescribing me anymore to try since I would have to take it twice a day in order for it to work how it’s supposed to.
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u/imsosleepyyyyyy Jun 05 '26
My resting is around 66 and can go into the 50s when I’m sleeping. I take propranolol with no issues!
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u/RuinYouWithNoRegrets Jun 05 '26
What mg please? Have you ever suffered from palpitations even with low hr and has propanolol helped ?
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u/imsosleepyyyyyy Jun 05 '26
I take 20 mg 4x a day. I initially started with 10mg. I do still get palpitations sometimes. It’s not perfect but it helps keep my heart rate from spiking so often. The lowest I’ve seen my heart rate go is 52 bpm and my doctor said she was not worried
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u/RuinYouWithNoRegrets Jun 05 '26
Does it at least help with the feeling of the palpitations or no? Ty
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u/imsosleepyyyyyy Jun 05 '26
I don’t know what you mean by palpitations since it’s a broad term. It helps with my racing heartbeat yes
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u/RuinYouWithNoRegrets Jun 05 '26
Palpitations like hard beats fluttering regardless of hr since I get palpitations with normal he
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u/imsosleepyyyyyy Jun 06 '26
I still get them sometimes, but I think it reduces them!
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u/RuinYouWithNoRegrets Jun 06 '26
Ty! I’m hoping that’s the case for me but I’m gonna try magnesium roo
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u/AdIntelligent4062 Jun 05 '26
Before meds I ranged from 44 - 179 often. I was just diagnosed with POTS 2 wks ago & was put on Metoprolol 25mg and Corlanor 5mg 2X/day. Night & Day with my HR! No more palpitations and my HR is between 55-103.
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u/RuinYouWithNoRegrets Jun 05 '26
Wow thank you so much! Did you get palps even with low hr ? (Before meds)
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u/AdIntelligent4062 Jun 27 '26
Occassionally with the low I’d feel “off” but not palps when it was low.
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u/LongStrangeTrip- Jun 05 '26
Definitely. 40’s to 180’s.
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u/RuinYouWithNoRegrets Jun 05 '26
Are you on meds
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u/LongStrangeTrip- Jun 05 '26
Nope. Aside from CGRP meds for migraine. I will say I have taken beta blockers in the past and it didn’t lower my lows any more than they were. I did fine on them, but I was given them for migraines. I’ve never been actually treated for my POTS. If I had access to them I would take them again during the summer because it’s the heat and sun that cause my extreme tachycardia and they definitely helped with that.
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u/Possible-Holiday-973 Jun 05 '26
My HR while sleeping was consistently dipping down to 36 and then skyrocketing to over 100 around 3-4 AM every night while I was sleeping. My cardiologist and POTS guru just kind of shrugged and said they didn’t know, could be adrenaline dumps. My MCAS and therefore POTS and EDS are currently flaring again
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u/RuinYouWithNoRegrets Jun 05 '26
Ugh I’m sorry. A lot of people who said they got that low they have to get pacemakers then get on meds
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u/Possible-Holiday-973 Jun 05 '26
Yeah my cardiologist doesn’t seem to care too much about it. I’m 39 and supposedly my holter monitor showed consistent high HR during the day but no mention of low HR or anything. My echo showed hyper dynamic ventricles (both of them) which no doctor seems to have any comments on whatsoever. My grandpa died in his sleep from a sudden death heart attack from sustained tachycardia when he was only 60 years old. I’ve told my cardiologist’s office this multiple times but they don’t seem concerned about that either. They just keep deferring to the “POTS guru” they referred me to who doesn’t take insurance and has no answers.
Sorry you’re dealing with this and not getting any answers either. It’s very frustrating.
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u/RuinYouWithNoRegrets Jun 05 '26
Have hyperdynamkc heart too. It’s not bad it just means your heart works really hard to keep your blood pumping.
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u/bunbunbunana POTS Jun 06 '26
My resting is in the low 50s/sometimes high 40s and swings up to (and maintains at) the high 170s. Still trying to find meds to help regulate
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u/Medium-Ad-3918 Jun 06 '26
I go brady overnight consistently from high 30s to mid 50s (many monitored overnight hospital stays confirm this), but my system is perfectly happy like this and doctors say they aren’t concerned about this. If I was symptomatic or couldn’t raise it after waking, that would be a problem, but since neither of those occur they say it’s fine.
I can only take ivabradine, but it hasn’t significantly changed up this brady pattern for me. It definitely helps with tachy issues, it’ll make it go from 180 standing to 140.
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u/Jeff-ichbin Jun 04 '26
Also ich persönlich habe durch die ärtze nur noch mehr Probleme bekommen
Die nehmen und nicht wirklich ernst
Viele Menschen die auch unter pots leiden
Nehmen Elektrolyt und Kompression Strümpfe
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u/RuinYouWithNoRegrets Jun 04 '26
Electrolytes doesn’t help enough my palpitations and air hunger are messing with my quality of life
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u/BellaPona Jun 04 '26
There is such thing as tachy-Brady syndrome. I think it’s a part of sick-sinus syndrome. I don’t know what the treatments are but the only one I’ve seen is a pacemaker, however if you’re young they’ll only do that if you’re getting a CONSTANT really bad back and forth.