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Leaf98

610d

Hey I'm leaf 21 I've been battling with my doctors about my heartrate and bloodpreasure for a while now to the point I'm having to drive to a doctor 2 hrs away because I was told I was making my own heart rate go up. I believe I have pots of some form and have been told by several regular doctors that it fits my symptoms. Is there any advice for getting my point across to the doctors and explaining what's going on with me? I feel ignored quite often due to my age and weight but I know my heart isn't supposed to do what it is haha. I'm glad I found this app and I hope to get to know yall!

Top reply
    • LOUIE889

      151d

      My primary doctor did the poor man’s table test in office. Be your own best advocate!

    • LOUIE889

      151d

      My primary doctor did the poor man’s table test in office. Be your own best advocate!

    • CoffeeAndDogs

      606d

      Dysautonomia International has a website that can help you locate a POTS specific doctor. Outside of autonomic specialists most doctors are illiterate. It took me 3 years, 5+ doctors, and taking my insurance company to court before I was able to be seen by an autonomic specialist.

      • Leaf98

        605d

        @CoffeeAndDogs I completely agree doctors are so illiterate 😒 I'll check out that website here soon!! Thank you so much!

    • cellar

      608d

      i had the same issues when i was first seeking POTS treatment the 48 hr and 30 day holter monitor was helpful in getting doctors to realize how often i was tachycardic i also ended up having to go to a cardiologist who specialized in POTS like an hour and a half away before i got a tilt table test done for a diagnosis

      • LovelyNova

        606d

        @cellar if you don’t mind me asking, what was your experience with the tilt table test? I’m in the process of a referral for one but my doctor said there are a lot of risks for that test.

        • cellar

          604d

          @LovelyNova it honestly was not fun for me tbh, i met the criteria (bpm+blood pressure) in the first 5 mins of the test but since i didn’t fully pass out they kept going for the full 30 minutes it mostly was just uncomfortable tho as i was super symptomatic the whole time and also the way it leans u u can’t really get a good standing position so it really made my legs hurt honestly tho it was only half an hour overall and once it was over they gave me some iv fluids and i felt okay ! so not fun but truly not the worst test i’ve ever had

      • Leaf98

        608d

        @cellar I feel ya I did the Holter for a 2 week period and they saw how often I was up but they accused me of fake fainting on my tilt table because I never went fully out and I have high blood pressure high heartrate only when moving lol if I'm sat I'm perfect blood preasure

    • Wondercell

      609d

      👍

    • Jay.Wish

      610d

      I would make sure to document everything. Get monitors that you can use to check your heart rate and blood pressure, then write it down in one place every time you check. It may take a while to get a list that they will finally look at, but it really helps to show that you have been paying such close attention.

      • Leaf98

        610d

        @Jay.Wish That's a great idea! I'll have to start doing that then I've gotten a pulse ox already and a BP machine but I think the BP is waaay off haha

☝ 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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