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Possible POTS Diagnosis - Seeking Advice

lilbean34

479d

Hi, I am not diagnosed with POTS but want to talk to people who are because I’m not sure if I might have it. My heart rate immediately increases about 40bpm going from lying down to standing and my blood pressure also goes up. I struggle with dizziness and lightheadedness, low energy, headaches, migraines, brain fog, etc., and often lose my vision for 5-10 seconds when I stand up or get out of bed. I also have raynauds.

2

10

10

Postural Orthostatic Tachycardia Syndrome (POTS)

Migraine

Dizziness

Headache

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Top reply
    • 55isMe

      317d

      Seek POTS specialist, i didnt and regret it. My 3rd ER visit in 2 months, the cardiologist there, took me on. He was sure he'd figure it out. Turns out, he doesnt handle POTS. So even with 100% repeatable POTS symptoms upon standing just 5 minutes, no official disgnosis. He retired, next cardiologist acknowledged my POTS, but not on paper. He stated that there isnt any cure and treatment options are weak. So, didnt recommend further testing. The next year, he siggested the tilt table test. I asked WHY if theres really nothing he can do. Now, he says there are some meds they could try. This time, i chose to pass. I couldnt see spending another $6000. I already have a $16k heart loop recorder that tells tgem that yes, my heart rate is hitting 200bpm, but max of 10 seconds (yes, i sit down, ANYWHERE)!!! Bottom line, it can be an aggrevating road to travel, why go in circles with your doc. Find one that has a clue!! There are POTS sites that can help you find a local doctor.

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    • 55isMe

      317d

      Seek POTS specialist, i didnt and regret it. My 3rd ER visit in 2 months, the cardiologist there, took me on. He was sure he'd figure it out. Turns out, he doesnt handle POTS. So even with 100% repeatable POTS symptoms upon standing just 5 minutes, no official disgnosis. He retired, next cardiologist acknowledged my POTS, but not on paper. He stated that there isnt any cure and treatment options are weak. So, didnt recommend further testing. The next year, he siggested the tilt table test. I asked WHY if theres really nothing he can do. Now, he says there are some meds they could try. This time, i chose to pass. I couldnt see spending another $6000. I already have a $16k heart loop recorder that tells tgem that yes, my heart rate is hitting 200bpm, but max of 10 seconds (yes, i sit down, ANYWHERE)!!! Bottom line, it can be an aggrevating road to travel, why go in circles with your doc. Find one that has a clue!! There are POTS sites that can help you find a local doctor.

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      Reply
    • FS_cookielove

      478d

      Sounds like pots, you should ask a cardiologist to run a hutt test (head up, table tilt[ed])

      1

      Reply
    • Triniti_a

      478d

      Good luck!! I've heard different things from people in terms of whether neuro or cardio was the best for them, it all depends on the doctor I think. So dont get discouraged! My neurologist said POTS isn't real, when it most definitely is lol it took me years to get a diagnosis.

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      • lilbean34

        478d

        @Triniti_a ok. Thank you so much!!

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    • Triniti_a

      479d

      That all sounds almost identical to my symptoms (I have POTS), it's definitely worth seeing a cardiologist if you can and getting a work up just to be safe. Mine told me the "gold standard" was if your HR goes up 10-50bpm within 5-10minutes. In the meantime start increasing your hydration/electrolytes. Hope you start feeling better soon!

      1

      Reply
      • lilbean34

        478d

        @Triniti_a ok! We are trying to get in with a neurologist right now and possibly also a cardiologist

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        Reply
    • PopDog

      479d

      i had very similar symptoms as you. sometimes they take ages to actually diagnose you so if for a few days or couple weeks you write down your blood pressure, heart rate and what you were doing at the time and then you can show them when you take to a doctor about the possibility of having pots

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      Reply
      • lilbean34

        478d

        @PopDog ok I will have to start doing that. Thank you!!

        1

        Reply
    • kenda

      479d

      it’s definitely a possibility you may have pots considering your symptoms. I’d recommend seeing a neurologist or cardiologist that specializes in pots if you can. i have pots so if you want to talk or have any questions i’m here

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      Reply
      • lilbean34

        478d

        @kenda thank you!

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        Reply

☝ 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

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