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Elliott.boyyy

497d

Finally got diagnosed with hEDS, it's been known and medically acknowledged since 2020, but no one would diagnose me because they all said it wouldn't help fix anything. But to that I say, yes it does help. it tells you what it is, it helps legally so jobs can't discriminate against accommodations, you can get better treatments and care from programs or therapy groups, when you have a diagnosis. Now I have to wait until I'm 18 until they'll do a tilt table test for POTS, instead they had me lay down and took my blood pressure, then had me stand up and wait 10 minutes after being standing to take it again. My dizziness and bpms in the 160s go away by then, or at least go down to what they considered non worrying, like 130. Any advice for that?

Top reply
    • Brokenbodyclub

      497d

      Hi love, I have both EDS and POTS, and totally agree a diagnosis sometimes is very helpful! Some cardiologist can diagnose POTS with just orthostatic vitals (which seems like is what they were doing for you), is there a reason you have to wait till you 18 for the tilt table test, I got mine as a child, but could be insurance or just doctors preference to wait. You could look into another doctors doing the test for you now? You could always try the first steps (non medication wise) of treating POTS to see if that’s helps at all! Message me if you want, I can help with some more advise to try! 💗

    • Brokenbodyclub

      497d

      Hi love, I have both EDS and POTS, and totally agree a diagnosis sometimes is very helpful! Some cardiologist can diagnose POTS with just orthostatic vitals (which seems like is what they were doing for you), is there a reason you have to wait till you 18 for the tilt table test, I got mine as a child, but could be insurance or just doctors preference to wait. You could look into another doctors doing the test for you now? You could always try the first steps (non medication wise) of treating POTS to see if that’s helps at all! Message me if you want, I can help with some more advise to try! 💗

    • EducationiPod

      497d

      A good cardiologist can diagnose POTS with an active standing test, which is what you did. A clear 40bpm increase as an adolescent or 30bpm increase as an adult on an active standing test without symptoms of other dysautonmia conditions and a clear echo is usually good enough. My cardiologist diagnosed me off an active standing test because I would have had major problems with a tilt table. But he specializes in POTS so he can do that comfortably.

    • justdoingmybest

      497d

      Hi! So I recently got diagnosed with pots and have suspected heds for a long time but I’m having the same issues that you did. I’m over 18, so I’m not sure if this scenario would be different for you, but what I was finally able to do was get a doctor to do a wearable heart monitor for 20 days. Then I went back to a cardiologist to go over the results, and he diagnosed me through that, so I didn’t end up going through the tilt table test to get my diagnosis. May I ask about your experience getting diagnosed with hEDS?

☝ 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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