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777d

Can anyone tell me more about their hypermobility related dysautonomia? I recently came across a video explaining that what it was and what it was like living with it and I’ve never heard my life so accurately described. Also what kind of specialist do I seek out to find out if this is what’s happening or not?

Top reply
    • Keladry

      759d

      I’m currently undergoing the diagnosis process for both POTS and EDS—so I don’t have anything helpful to add, but I wanted to add some solidarity since we seem to be going through something really similar ❤️ my hospital system has a section for autonomic disorders, but I think more broadly cardiology could be the starting place to look for more info?

    • Keladry

      759d

      I’m currently undergoing the diagnosis process for both POTS and EDS—so I don’t have anything helpful to add, but I wanted to add some solidarity since we seem to be going through something really similar ❤️ my hospital system has a section for autonomic disorders, but I think more broadly cardiology could be the starting place to look for more info?

    • eunji_unnie

      777d

      My experience sounds extremely similar to yours, Fae. POTS is often the least of my worries, with major GI issues, chronic migraines, poor circulation and body temp control... I feel like my body's barely holding together. It's frustrating because the symptoms are so widespread and nonspecific- I'm swimming in doctors with no coordinated care.

    • HeyReese

      777d

      That sounds a lot like my POTS symptoms, but everyone’s body is different!

    • EncyclopediaFae

      777d

      I really don’t think I have POTS or if I do it very mild. For me it’s the gastrointestinal, low blood pressure, insane night sweating and temperature intolerance that are really big. There are some other things I experience but those are the big ones (esp low blood pressure) and I might possibly have exercise intolerance because it’s really hard to raise my heart rate with exercise and I’m relatively fit but stairs are the devil.

    • HeyReese

      777d

      I was told that hypermobility commonly occurs with dysautonomia (i.e. POTS occurring with EDS). I’m not sure why— but I see my cardiologist in a few days. DM me any questions and I’ll see if I can find some answers :)

☝ 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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