Dysautonomia

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Dysautonomia
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    Community Voices

    I'm new here!

    Hi, my name is Jwalkerobrien_2012. I'm here because I need to be able to communicate with others who understand what I'm going through.

    #MightyTogether #Dysautonomia

    1 person is talking about this
    Community Voices
    JN59

    How do/did y’all handle the season before seeing a Dysautonomia specialist, if you have been able to see one?

    I have POTS, but I haven’t been able to see a specialist yet. I guess that means I haven’t been officially diagnosed yet either, since it was just my primary care doctor who brought POTS up. I have all the symptoms though, and it’s quite debilitating. I don’t faint, but if I overexert myself I may have palpitations dizziness, and sometimes chest pain for hours or days.

    These days I’m focusing on doing what I can to get better (hydration and recumbent exercise), and trying to set lower expectations for myself so I can enjoy life a little bit. Like getting my friends together on Zoom instead of in person, and using the spoons theory when thinking about chores, self-care and exercise.

    I have gotten slightly better with lying down exercise, but I just wish I had actual medical help, you know? I’m impatient to actually be able to do stuff like walk outside, wash my own dishes, and eventually go back to college. Since I don’t faint, sometimes I wonder if my condition is not severe enough to get proper medical attention, especially with doctors so busy these days. But it feels severe to me, you know?

    I’m sure y’all have to deal with stuff like this too. How do y’all balance the desperation to get better and the need to take life one day at a time?

    6 people are talking about this
    Community Voices

    Comorbities with POTS

    I was diagnosed with dysautonomia/neurocardiogenic syncope in 2003. I was recently retested and diagnosed with POTS. I have suspected I may have hypermobile EDS for the past year (I am very flexible and have been all my life. I’m talking turning my arm all the way around so my hand faces forward again) and possibly mast cell activation syndrome since I have sporadic, unexplained rashes, among other things. Has anyone else been diagnosed with these conditions too, and if so, what doctor diagnosed you and what testing was involved? I’m still learning how to advocate for myself and who to even talk to about all these things.

    2 people are talking about this
    Community Voices
    JN59
    Community Voices

    I'm new here!

    Hi, my name is CSakina. I've been diagnosed with Dysautonomina.

    #MightyTogether #Dysautonomia

    2 people are talking about this
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    Community Voices
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    Community Voices

    Tips and tricks for air travel with dysautonomia

    I haven’t travelled on a plane since 2019, which was before my dysautonomia symptoms got significantly worse. The last few months have been the worst condition I’ve been in energy, symptoms, etc. wise and I’m planning a trip to England in July to visit family. It’s important to me to go and luckily I’ll be staying with family that also has dealt with POTS recently, but I’m most worried about the airport, flight and jet lag.

    I’m planning to get a wheelchair for the airport so I don’t have to worry about standing in lines, but other than that I’m trying to figure out what to remember to try to not end up in a horrible flare.

    Any ideas/tips would be great from anyone!

    #Dysautonomia #Spoonie #Travel #TravelTips #LivingWithPOTS

    2 people are talking about this