What Living With POTS Is Like

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What Living With POTS Is Like
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    What's New in What Living With POTS Is Like
    Community Voices
    Community Voices

    Overthinking and drowning🫠

    So it’s one in the morning, I’m in too much pain to sleep, and now I’m overthinking. It just hit me that not only can I die at any time, but next week my friends and the people I grew up with will be graduating and I won’t be up there with them. Because I had to drop out, take a year off, fail. I know I made this choice last summer and I was upset about it, about the fact I wouldn’t get a prom or a diploma, but God, it just hit me. I’m barely functioning, my parents think I’m not trying enough and my friends are all being successful and travelling for college or moving out or getting better jobs and I can’t even remember to eat on time! I can’t work! I can’t take care of myself! And oh my god, am I failure?
    #Epilepsy #Sudep #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #ChronicIllness #TheDisabledLife #Depression #severeanxiety #Insomnia #MentalHealth #disassociation #Schizophrenia

    16 people are talking about this
    Community Voices

    Idk if anyone else has had such a bad experience as me, but if youre looking for a smart watch to help keep up w your HR. I definitely dont recommend getting a Fitbit Sense watch even if they say its the best on the market, it isnt.

    Mine has let me down time and time again and has caused me to put myself in dangerous situations unknowingly.

    i dont think ill trust fitbit again, after spending $200 on this watch for christmas i had to turn around and buy a $500 one so i know im safe.

    I have POTS and it affects my day to day but i dont feel it as much when it get dangerously high so my fitbit is supposed to notify me when it gets high but never has. At times it's told me my HR is 90bpm but when looking at my PulseOX it's been 180-210 so thats great....

    -1000/10 #FitbitSense #Fitbit #POTS #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

    1 person is talking about this
    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
    Community Voices

    Searching for a diagnosis and treatment

    I have all the symptoms of #PosturalOrthostaticTachycardiaSyndrome including the pulse rate spikes when I change position and frequent near-syncope. I just had a tilt table test and the doctor and cardiologist both said it’s not PoTS because my blood pressure is going down instead of staying the same. Now they are saying they might not be able to diagnose me with anything, I will just need to monitor and avoid my symptom triggers. This is what I have been doing for years and it is not good enough! I am so limited in my activities and work. I am feeling so discouraged. Any advice or helpful information out there? #Undiagnosed #MedicalZebra #AutonomicDysfunction #LivingWithPOTS

    2 people are talking about this
    Community Voices

    I Need Some Positive Words ... Feeling a little down ...

    What is something positive that you could share with a chick that needs to feel a little more upbeat? I want to get out of this funk so much. Anything POSITIVE or encouraging or motivating is welcome. Or if you need to vent, that's okay, too!

    #Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Narcolepsy #prolactinoma #sibo #smallintestine bacteriaovergrowthsibo #RaynaudsPhenomenon #LeukocytoclasticVasculitis
    #SpinalStenosis #Lumbarfusion #SpinalFusion

    30 people are talking about this
    Community Voices
    Community Voices

    Balance and Compromise

    I find that I have to constantly compromise with myself just to stay balanced. For example, I have to find a career that I CAN do, rather than what I would genuinely love because of my POTS, anxiety, depression, and chronic fatigue. I can't do some of the things I used to do because it's physically and mentally too draining. I'm tired of needing to wear my compression stockings and monitoring how much water i drink. I wish I could just do whatever I want without having to compromise with myself. Making adaptations and accommodations feels like a chore rather than a positive thing, even though i should feel grateful that accommodations are more available nowadays. Im just frustrated and needed to vent. Can anyone relate? #Anxiety #Depression #MentalHealth #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Fatigue

    8 people are talking about this
    Community Voices
    Community Voices

    I’m on the edge


    I can’t sleep at night, wake up in the morning and head to work as a zombie. I can’t talk, can’t listen can barely even see sometimes. And as exhausted as I always am, sleep continues to evade me. I know I’ll have to quit my job soon because I can’t keep doing this. Any of it. The pain, the fatigue, the seizures sneaking up on me all the damn time and every time I’m on the edge I talk myself out of it. Put the blade down. But god I’m going insane and have no one to help me…I need help

    #Epilepsy #LivingWithPOTS #Anxiety #Schizophrenia #MentalHealth #helpme #Hallucinations #ObsessiveCompulsiveDisorder #disabledteens

    3 people are talking about this