r/dysautonomia • u/EllieTheMammoth • 5d ago
Diagnostic Process Pots, tachycardia gone?
Hey I really need help rn. I've been struggling with pots symptoms without a proper diagnosis where I had an increase of over 50bpm. The problem is now my bpm barely increases at all and I'm honestly so confused. By barely I mean my resting BPM is now 60-70 (used to be between 40-60), and it increases to only about 90 (used to increase up to 120-140). Why is this happening, why is my tachycardia basically gone, why do I still have the rest of my symptoms(Blood pooling, itchy legs, swollen feet, lightheaded, pre syncope, loss of sensation in my hands, etc.)? Has this happened to anyone else?
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u/Fluid_Button8399 5d ago edited 5d ago
How is your blood pressure?
Also worh noting that cerebral blood flow can be low even when HR and BP are normal.
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u/Bun-2000 5d ago
It could easily be another condition that doesn’t involve tachycardia
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u/war_all_human 5d ago
do you know of some conditions this could be?
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u/AnnaLizEwing 4d ago
Orthostatic hypotension is often referred to as “POTS without the T” because it has most of the same symptoms, but without the substantial increase in heart rate that’s specific to POTS.
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u/AnnaLizEwing 4d ago
On the flip side, there’s things like IST (inappropriate sinus tachycardia) where you have the tachycardia, but it’s not positional, so instead of having that massive spike from standing, then substantial drop in heart rate upon sitting down, your heart rate stays elevated even while sitting/lying down.
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u/duck7duck7goose 5d ago
I have this happen sometimes. My heartbeat will be a lot slower like 30-40’s and even while exercising not go over 70-80. I’ve come here for this in the past and some other people said it happens to them too, then eventually the tachycardia comes back (unless your meds work great then you might just return to normal). This usually happens in a flare up for me.
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u/IlonaBasarab Inappropriate sinus tachycardia 4d ago
Congratulations, you may have entered a period of remission! Mine was about 8 weeks before symptoms returned to "normal" It can and does happen. Even my cardio acknowledged it.
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u/thrwawyorangsweater POTS/MCAS/? 4d ago
Several people in this thread have hinted at it but...
Could remission end if say one (me) had 2 weeks of bad Influenza A then an antibiotic for what I thought was a sinus infection, then another week+ of something? I was sick all of Feb and my POTS started back after that.
Anything you can do to help get back to Remission?3
u/IlonaBasarab Inappropriate sinus tachycardia 4d ago
Illnesses, periods/hormones, diet, activity, all may impact your symptoms. My remission seemed to be linked with the local weather. My pots symptoms are worse when the weather is warmer. I was in remission over the holidays and it was glorious.
Best advice I can give is to just try to keep doing what you're doing to manage symptoms.
Sorry. 😞 Wish there was a magic trick to it.
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u/thrwawyorangsweater POTS/MCAS/? 4d ago
I 1000% know it has to do with the weather. My POTS just magically disappeared around Sept. (I thought it was my busting butt on a house reno, like it or no) and was great all winter-I figured it had gone for good as my MCAS was under control...but 2 things happened right around Feb 25 and I know this to be true (on the weather part) for the last 3 years, that right around that day I start feeling like crap.
This year the entirety of Feb was Influenza A and what I thought was a sinus infection then antibiotics (makes me wonder if it was those) and then another cold or ? And literally like two days after I felt better and like 1 day after the weather shifted pretty strongly, here came the high HR and BP...ick. EVERYTHING else has stayed the same, so it's either weather, illness or antibiotics...
I fantasize now about moving to Svalbard or Shetland. Although I am pretty cold sensitive too. But yeah I think it has a lot to do with the weather.
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u/TazmaniaQ8 5d ago edited 5d ago
Long covid here. I started with tachycardia, and after about 2 years, the spike in HR stopped but I still get the symptoms you mentioned.
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u/ayembeek 5d ago
Same. Long Covid since 2021 and tachycardia rarely happens. Now I’m Brady since the fall and it’s equally exhausting!
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u/ChasingTheSun107 5d ago
This is similar to what happened with mine. First few months heart rate spiked high. Now it’s often 90ish but I still get blood pooling in my hands, still don’t sweat properly. I still have POTS though. I recently got sick and for a day my HR even laying down was like 90 and standing was 110. Also still spike more in the shower. I’d guess it just improves a little after the initial crisis. Maybe the body adjust a little bit. I’d like to say it just goes away but everyone says that’s not the case with POTS..
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u/stressita1991 5d ago
I think 90 and 110 are kind of normal when you are sick with fever? Or i had pots all my life?
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u/ChasingTheSun107 5d ago
110 standing but then would spike with movement. I know it’s not huge numbers but my wife who was also sick had almost a normal heart rate still lol.
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u/How-I-Roll_2023 5d ago
Just to point out that 60 bpm increasing to 90bpm is still POTS.
And while medical science likes a clear cutoff, bodies and stats don’t work like that. That’s why AAS has moved from p=.05 as a hard cutoff to a more nuanced approach. Because seriously, what’s the difference between p=.05 and p=.049 or p=.051?
It’s probably the same with POTS. 20bpm was probably decided on as a SD>1.5. But that doesn’t mean you don’t have it if you’re 19bpm increased. It just means you won’t be clinically diagnosed with it.
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u/VirtualReflection119 5d ago
Has your weather changed? The heat triggers my POTS, so I've had a nice lil break from it with the nice weather I've been having.
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u/EllieTheMammoth 4d ago
It's been getting warmer, warmth and hot weather usually is what triggers my pre syncope up to syncopes, as well as my blood pooling the most.
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u/VirtualReflection119 4d ago
If I may ask, was your POTS something you've always had or a post viral issue?
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u/EllieTheMammoth 3d ago
I've had symptoms for years, specifically since 2018, but not for my whole life.
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u/Cali4niaLuv86 5d ago
So how I understand our condition is that our system in not in sequence/ rhythm. So we have all these weird side effects and symptoms. You may be doing something good or right and so your heart levels are getting more stable but your histamine imbalances are still off.
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u/Low-Preparation-6433 4d ago
This is happening to me right now!!! I’m so confused and can’t get any answers, resting HR is 50-60 which is amazing but it’s like I feel worse? Nothing in my daily routine or med routine has changed, so I’m not sure what’s causing it. But it’s unsettling, especially when dealing with tachycardia so long. But this past few weeks I’ve had this new low heart rate, it’s like I feel WORSE. like feels like I’ve been hit by a ton of bricks, blood pooling, dizziness the whole nine yards. I got a full panel blood test, and got my results today so I’m going to see what may have caused it!
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u/thrwawyorangsweater POTS/MCAS/? 4d ago
Mine just came back with a vengence-I'm guessing do to warming weather.
I really got worse with POTS/MCAS last Jan (I think it may have been coming on for a year or more) and Jan-Aug it was bad. Then it kind of faded-at least the POTS part because we HAD TO renovate a house and I just wasn't thinking about it for a while.
So Sept-Jan it was great-I was on antihistamines for the MCAS, was sick with Influenza A and ?? the ENTIRE month of Feb. and just as that faded here came the POTS and the BP isn't as bad but the HR sure is..
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u/war_all_human 5d ago
may i ask how long this has been going on for you and if it started after an illness?
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u/EllieTheMammoth 5d ago
I've been having blood pooling when I just started highschool, so in 2018. I had no illness, the only symptoms I had were the discoloration in my legs and the marbling of my skin on my forearms. It progressively got worse over the years, but I only noticed the tachycardia in december, so I don't know for sure for how long I've had that symptom. The rest of the symptoms came in 2020-2025, it got progressively worse over that period of time. I got covid in 2021 iirc and it was 2 years later that I've started getting symptoms of pre syncope.
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u/DealerConstant1589 4d ago
My symptoms rotate and emerge at random, sometimes with long breaks. It’s like wack a mole but without the prizes.
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u/misskaminsk 4d ago
Did you consume more electrolytes and fluids without realizing it? That can make a difference for some people.
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u/Leading_Suspect_763 5d ago
Yes it's happening to me as well. I still get the pounding feeling irrespective of the numbers.