What Living With POTS Is Like

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What Living With POTS Is Like
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    Battling the flu with dysautonomia.

    My daughter caught the flu. She is on Tamiflu, but is having a harder time coming out of it. She has dysautonomia which probally just makes it worse. All of her friends are back at school, but she isn’t. Extremely fatigued, and extremely weak and l sore muscles. #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #pediatricdysautonomia

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    Anybody have tips on pediatric dysautonomia?

    My daughter was diagnosed with moderate dysautonomia. Anybody have any tips. To name a few, she experiences, nausea, reflux, headaches, muscle weakness, dizziness, stomach pains, palpitations, orthostatic tachycardia, lightheaded and more. She takes florinef, a beta blocker, and extra sodium and fluids. Thanks! #AutonomicDysfunction #Dysautonomia #pediatricdysautonomia #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

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    Tips for POTS symptoms post surgery/anesthesia? My daughter with dysautonomia just had surgery and is dealing with worse symptoms.
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    #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #pediatricdysautonomia

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    #PosturalOrthostaticTachycardiaSyndrome & #COVID19

    Just got COVID last week and I can’t tell if right now I’m in a flare up or if I’m struggling with COVID symptoms still. Please help! #LivingWithPOTS

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    Lost old account info

    I’m not so new here, but I lost my old account info. I joined this app almost a year ago in hopes to #Connect with people who have #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction and other chronic illnesses. #LivingWithPOTS is not easy and I hope to find tips and tricks to make it through the day

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    You Know You’re Chronically Ill When…

    You know you’re Chronically ill when you’re excited to go get your birthday IV. 🥳🎈🥳
    #Birthday #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #LymeDisease #ivFluid #celebrate

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    How to Celebrate Birthdays When You’re so Ill

    How do you guys celebrate your birthday when you’re ill? I’m turning 30 and my husband and mom keep asking me how I want to mark the occasion but I have no idea. I’m mostly bed bound currently and my GI system is in revolt so I can’t eat almost anything. And I just can’t think of what to do. Plus my brain fog has been pretty bad. #Birthday #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #LymeDisease #bedbound #FeelingSeen #celebrate

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    POTS Med options

    Hi! I’ve been diagnosed with POTS and the only medicine that has worked for me has been Corlanor (ivabradine) and unfortunately my insurance doesn’t cover it. I’ve exhausted all options including copay card and patient assistance. They only bring it down to $800 a month. I’m wondering what has worked for all of you so it’ll give me other ideas to discuss with my doctor. Thank you! #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

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    I Am Resilient #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

    2 1/2 three-ISH years in to pots / Dysautonomia. My dearest friend talked me into seeing a therapist. I’ve been feeling pretty worthless/hopeless for a long time. On my second visit she had me talk about some of the things accomplished in my life. I left a lifestyle that was not safe or healthy. I was a single parent. I went to nursing school I was as a single parent. I married a man with custody of three children and I have raised them and they are beautiful healthy young adults. I was able to travel nurse.
    Recently at the beginning of the year I was able to go back to work part time as Hospice and home health nurse, and my husband and I are looking at buying a house with a little property on it after having to sell our beautiful home last year to avoid bankruptcy.
    The therapist pointed out to me that it sounds like I’ve had quite a few adventures/journeys. And I have. She pointed out they were journeys of my choosing. And they were. She pointed out that each one of those journeys took resiliency to overcome!!! And this is just another journey that I have to be resilient through. I may not have chose this journey. But I can choose how I adapt/change to continue to be successful.