See Alike in...

Alike App

Browser

Katharina

114d

I had event motioner to check for POTS. At times my heart rate went to 130. I got results and Doc said nothing was nothing of concern. I’m rather upset. That’s NORMAL??

Top reply
    • 55isMe

      38d

      Keep in mind, when a cardiologist says "nothing to concerned with", it does NOT mean that you dont have POTS. It means its not a cardiac event thats causing the high heart rate. It's important to us, but not concerning to them. Because theres really not specific, recognized treatment for POTS few cardiologists will go there. Even my latter cardiologist, told me in my first year seeing him that even though he could order a TTT, he recommended not doing so "because there really isnt any treatment for POTS". So, I skipped because why spend $6500 for something without treatment. 2nd year, after seeing all my 200bpm loop recorder recordings, he mow suggested it. Now he admitted that "there are some medicines they could try that might work".

    • 55isMe

      38d

      Keep in mind, when a cardiologist says "nothing to concerned with", it does NOT mean that you dont have POTS. It means its not a cardiac event thats causing the high heart rate. It's important to us, but not concerning to them. Because theres really not specific, recognized treatment for POTS few cardiologists will go there. Even my latter cardiologist, told me in my first year seeing him that even though he could order a TTT, he recommended not doing so "because there really isnt any treatment for POTS". So, I skipped because why spend $6500 for something without treatment. 2nd year, after seeing all my 200bpm loop recorder recordings, he mow suggested it. Now he admitted that "there are some medicines they could try that might work".

    • sapphic

      51d

      Same my holter basically came back inconclusive and I felt so? Ashamed I guess? They decided to go forward with a tilt table test and I’m terrified lol

      • Katharina

        39d

        @sapphic I hope that works!! I wish I would have that done in the first place too

    • Mickey1210

      51d

      I was told the same thing honestly

      • Katharina

        51d

        @Mickey1210 and we still have issues and it’s not pots, what is it? 😥

        • Mickey1210

          51d

          @Katharina I was eventually diagnosed with pots using the tilt table test

    • demonshunt

      67d

      Same! I had a heart monitor and my max was 141, the most I did physically was climb the stairs but because it’s not something they’ve seen before they said it was “inconclusive” and called it a day

      • Katharina

        63d

        @demonshunt 😢

    • Feliformia

      68d

      I had seen 2 cardiologists prior and had so many tests and monitors. I was informed its "normal for young women to faint." Fast forward a few years and a fainting episode sends me to the ER because I hit my head and one of the doctors there finally said somethings up and now I'm being seen by electrophysiology. My heart rate ranges from 33 bpm (asleep) to 181 bpm (simply standing up).

      • Katharina

        68d

        @Feliformia so weird!!! Please let me know how goes🙌 When I got the results back it showed my highest at 157! I’ve reluctantly stopped wearing my watch otherwise I’ll obsess and get all upset again…. But I’d something like that happens to me I’ll make sure it’s a topic of decision again.

    • K2OTRL

      111d

      I’ve had to wear the stupid heart monitor twice for an extended period of time both times because they showed nothing! The reason they show nothing is there is zero context to the monitor they don’t know if you’re sitting, standing, working out or laying down. I was diagnosed with the tilt table test. Context is huge with POTS stupid heart monitors….

      • Katharina

        111d

        @K2OTRL that so makes sense!

        • 55isMe

          111d

          @Katharina the external monitors were a lot smarter than the implanted loop recorder. Turns out it could only do afib by itself. And manually triggered recordings are only good AFTER you press the button. If you are like me, i get so short of breath that i gave to sit in order to breath. Before the implant, i was told that it would keep the 2 MINUTES JUST BEFORE THE BUTTON IS PUSHED. Bottom line, the external ones were better and <$200 (vs $16000 in and $10000 remove and visit to have it read for the internal, geat money source for cardiologist). My 2nd cardiologist looked over just the external ones 48 hour and 4 week). From that, he would have never suggested an implant. Even during a flare (potassium loss +pots), it only got a few triples and a few pvc's. More likely, just the result of the high heart rate forcing an off beat once in a while. Thats probably why 130bpm is not concerning and my 200bpm for under a minute isnt concerning either. Bottom line, with Pots, the heart is being told verses telling the heart to go fast. Interesting thing though on the external ones, i got to see the output and when i was having the issues the most, there was a lot of artifact (as they call things that they dont care about). To me , that is significant, it looked like spasms.

    • 55isMe

      113d

      My cardiologist isnt concerned and i have topped 200bpm (implanted heart rate "loop recorder"). Similar thing is because it doesnt stay up, it doesnt count. Even after explaining that the reason that it doesnt stay up because i immediately sit down (reclining position with knees up). Bottom line, there really isnt much they can do without causing more substantial issues. And 130bpm seems like a lot to you but it is all relative. Now 5 years into my pots, i dont notice 130bpm. 170bpm, i start start noticing. First cardiologist didnt offer tilt table test. In hindsight because he didnt actually treat pots, said he did, but didnt. 2nd cardiologist recommended against tilt table test because even if it determines pots, there really isnt any treatment for it. A year later, he offered the tilt table test. So i questioned why we would do that and spend another $6000 and risk my small uphill advancements of the last few years, his answer was that there are a few thing they could try. Lots of trial and error. I skipped because i wasnt willing to go back to the threats of uncontrolled episodes and emergency room intervention. Diagnosis can help at work, but i was able to get my pcp to write it up as general dysautonomia. That worked. Now, i work from home and go from bed to bed desk. Great for my condition. Boss is very understanding too. It was worth finding a place that would cooperate with me. Flexibility.

      • Katharina

        113d

        @55isMe reading your experience is helpful! Thanks you for taking that time 🙌 💕

    • rose28

      113d

      🙌I got diagnosed yesterday. I had the same issue ask them for a referral to a cardiac specialist. Explain it all to them and convey your frustration. Hang in there it's worth it.

      • Katharina

        113d

        @rose28 cardiologist and a cardiologist specialist different? What was your experience? I was told bc my was not sustaining (even at 152) that it’s wasn’t pots):

    • KatlynB

      114d

      Find a new cardiologist, I'm sorry you went through that but I have as well you just have to keep on finding the right doctor you will find one eventually I know it sucks rn. Don't give up

    • KatlynB

      114d

      If it's more than 30 beats per minute passed your resting heart rate, then that's is considered a Tachychardia, love doctors who just gaslight you cause they don't care to take in consideration what u go through and want to take money and get you on your way

      • Katharina

        114d

        @KatlynB I saw the results finally. My highest heart rate was 152. They said it was nothing to be concerned (aka not pots) about because the heart rate was not “sustained.” Is this true??

    • Katharina

      114d

      How sustained does a HIGH heart rate need to be for it to be POTS? They said it was normal bc the high rates were not sustained

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Alike health

Based on the provided context, it's not clear whether a heart rate of 130 is considered normal for POTS. However, one reply suggests that if your heart rate increases by over 30 bpm between posture changes (from lying down to standing up), it could indicate POTS. It's recommended to consult with a healthcare professional for accurate information.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion