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I Have Postural Orthostatic Tachycardia Syndrome

A Postural Orthostatic Tachycardia Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Postural Orthostatic Tachycardia Syndrome. You're not alone. 929 People

    Pots Success Story

    I was just talking to someone about my experience with Postural orthostatic tachycardia syndrome (P.O.T.S.) when I was younger. Back then, there wasn't a whole lot of information on the internet about it. I was surprised to see there's much more information out there now...
    dliebner dliebner 22-25 11 Responses Jan 12, 2011

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    So I have a question.

    For me, when I am about to faint, I become really incoherent. I forget what I am talking about, I say off the wall things, and I can barely walk straight. It is as if I am drunk. I can't comprehend things. The other day, I kept asking who my friend was and what my name was...
    imstrongerthanyouthink imstrongerthanyouthink 18-21, F a week ago

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    I was just recently diagnosed with POTS

    and I don't really know what it means and the doctor hadn't really told me anything about it. But reading a little about it makes it make sense a little. But if anyone can tell me anything about it, it might help. I'm not really sure about any of it.
    nutmeg14 nutmeg14 16-17 1 Response Nov 2, 2014

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    I Wish

    I wish There was somebody anybody around that knew exactly how I felt and understood what I meant, someone that could truly understand the pain I'm in and how sick I feel
    Gabycastellano Gabycastellano 18-21, F 2 Responses Sep 26, 2013

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    I'm trying my best to be normal,

    but I went out with my friend for a walk last night and now I feel awful. My mum called me up to have a go at me for walking! I hate this stupid condition.
    anon1995 anon1995 18-21, F Mar 22, 2015

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    Hey to all the young potsies out there

    struggling thru this as I am still.....seriously I just want you to know that you're not in this alone. And whenever you start to feel that way, reach out to other potsies. Try to find ppl in your community that also suffer from pots. You NEED support and don't be afraid to ask...
    Ktglisson87 Ktglisson87 26-30, F 6 Responses Aug 9, 2014

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    I don't remember a day

    where I actually felt normal. Could run. Didn't have my parents yell at me for "not controlling my symptoms". People asking why my legs are all red and swollen. I'm just so tired.
    HebBay HebBay 22-25, F 1 Response Nov 24, 2014

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    I Hate POTS!!

    So here is my story...August 14, 2008: While driving down the road I have this sharp pain in my left chest and i start to black out. I manage to get pulled over and catch my breath, I thought I was having a heart attack and dying. So after a while I start to feel a little better...
    g04th g04th 36-40, M 16 Responses Feb 1, 2010

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    Hi everyone so this will be a long story one

    that many won't bother reading but it is my story it's one of a rollercoaster and I hope if you do start it you finish because I don't want sympathy I just want everyone to be motivated by this and ready to beat pots! So I've been dealing with POTS for about a year and a half...
    kelizabeth13 kelizabeth13 18-21, F 4 Responses Jun 13, 2014

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    It took the doctors almost 3 years to diagnose

    me. At first, they thought it was anxiety or depression. I was thrown around from hospital to hospital for about 2 1/2 years until a doctor even recommended that it might be something cardio related. I was diagnosed in 2012 and have been doing intense physical therapy sessions...
    Kristoe103095 Kristoe103095 18-21, F 2 Responses Nov 29, 2014

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    Life Changing 3 Months Of My Life

                During Fall Parent-Teacher Conferences I began to feel ill but thought nothing of it. The illness progressed into a constant state of lightheartedness and fatigue. I finally went to the doctor 2 weeks later thinking I was anemic to...
    wambold wambold 26-30, F 11 Responses Jan 28, 2010

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    Does anybody have really bad period symptoms

    when on their period? Every time I get my period I am screaming and crying because my cramps are so bad. I'm only 14 and it's been like this since I got it. It sucks.
    sweindorf sweindorf 13-15, F 6 Responses Aug 16, 2014

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    I am a sophomore in high school.

    Last year I was running cross country, and I pasted out. I was unconscious for 20min. After that I couldn't fall asleep or stay asleep. I had tremors and a horrible pain in my chest it felt like I couldn't breathe. The worst symptom was my headache it wouldn't go away. I spent...
    danielle8793 danielle8793 16-17, F 2 Responses Sep 5, 2015

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    I have been tired like crazy!

    Can barely stand without passing out. Just another part of living with pots I guess.
    Tealltoennis Tealltoennis 18-21, F Jun 29, 2015

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    The Depression.

    I've had pots for about six years now but was just diagnosed a year and a half ago. My symptoms aren't as bad as many other people's but my days get hard. I do my best to not let anyone notice my struggles but lately it's been getting harder and harder. I'm losing control. The...
    PobBarbie12 PobBarbie12 18-21, F 5 Responses Nov 9, 2013

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    After 5 years of battling with POTS I have

    finally managed to stay healthy long enough that my doctor approved me for a volunteering program in South Africa! After years of wishing and planning I will be living my dream and working with African wildlife this July. I want you all to know that it is possible to live a...
    haileybb haileybb 18-21, F 2 Responses Feb 14, 2015

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    I struggled with abdominal pain,

    dizziness, and fainting my whole life and went to more doctors and hospitals but never found anyone who could help. Throughout school I had medical issue and missed a lot but I always made up the work and passed with flying colors until my freshman year of high school when my...
    jessday jessday 18-21, F 1 Response Oct 30, 2015

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    After 4/5 years of being called lazy

    when I feel too weak to move, or that it is all in my head, I was finally diagnosed with POTS yesterday. My parents aren't dealing with it well. My dad and brother even told me to pretend I'm feeling better than I am, because my mum keeps calling them in tears. How am I supposed...
    anon1995 anon1995 18-21, F 1 Response Nov 23, 2014

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    I was just wondering

    if any fellow potsies have any careers advice? I unfortunately had to stop mainstream school (as many of us have had to) as well as home education so consequently have no exams or qualifications. Obviously, as well as dealing with pots this makes it increasingly hard to know...
    justhollyjayne justhollyjayne 16-17, F Jul 22, 2015

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    I Don't Know If This Has Been Posted Yet, But It Might Get A Smile So..

    you know you have pots when. 1. You spend more time horizontal than vertical. 2. You can always pee on command. 3. You have an excuse for not being able to pass a sobriety test. Pray that a police office never stops you and asks you to walk a straight. 4. You see more of...
    heyitsdanielle heyitsdanielle 16-17, F 21 Responses Mar 6, 2012

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    Yes I aam a 30 yr old female

    and I have been having heart problems since I was around 23. I had 2 ablations about a year ago. I went to my cardiologist yesterday and she thinks that I may have this POTS syndrome. I just wondering if this could be true? At times my blood pressure drops really low, I have...
    Bigred1145 Bigred1145 26-30, F 1 Response Oct 29, 2015

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    Hi I'm 15 years old and last month I was

    diagnosed with POTS it was really hard for me because I didn't know what to Except I went down to the Mayo not knowing exactly what I was getting into I was with my mom she was the best support system as well as my dad. I just thought I suffered from Bad headaches and got...
    Megan2020 Megan2020 16-17, F 3 Responses Jan 17, 2014

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    I have been diagnosed with pots

    for almost 2 years now. I'm 13 and going into 8th grade next year. My school is getting super stressful, I went for half a day last week and today I went but I'm crying so much lately because of how tired I am and I just don't know what to do:( I always feel so sick and my...
    luluhamilton luluhamilton 13-15, F 2 Responses Apr 6, 2015

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    I've been fine for a while,

    but now I've started fainting a lot again. My mum and I were going to go shopping for my dads fathers day present, but because I will need a wheelchair, she's refusing. It just makes me feel like ****. I don't expect her to understand, but it seems like she doesn't even care. I...
    anon1995 anon1995 18-21, F Jun 20, 2015

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    Hello Everyone! I'm currently 16 years old,

    7 months ago I was going school, hanging out with my friends and living life to the fullest! But now everyday is a struggle. I don't go to school anymore, the only people I talk to are doctors and my family and sometimes I receive visits from my friends. I am usually in my bed...
    amandas1011 amandas1011 16-17, F 6 Responses Mar 28, 2015

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    I Cant. Im Feeling Potsy

    I can't... I'm feeling POTSy. I feel like I say this all the time. Luckily the people who are around me understand, which has not always been the case. I started getting POTS symptoms in August 2008. There was no "triggering event" and work was not stressful at all. I went...
    LaurenMarieF LaurenMarieF 26-30 3 Responses Apr 10, 2011

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    Does anyone else suffer with blood pooling in

    their abdomen as a result of their POTS? If so what do you do to help it?
    justhollyjayne justhollyjayne 16-17, F 2 Responses Apr 12, 2015

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    Does anyone else suffer with violent

    shaking/flinching of the head? I was wondering if this is a POTSie thing or maybe linked with some kind of anxiety?
    justhollyjayne justhollyjayne 16-17, F 1 Response Jul 4, 2015

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    What Is Helping Me With My Pots *Please Share This To Help Others*

    I had a pretty active life style, waking up at 5am to go to high school everyday, participating in a fitness club at my school, singing in the school choir etc. I graduated with honors from my high school, and everything was going great. My plan was to start college in fall 2012...
    Kinakierra Kinakierra 18-21 6 Responses Jan 6, 2013

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    Hello I am 14 and I've had POTS

    since I was 10. It's been really hard for me and no one really understands what I'm going through. My friends and family try and help but they don't understand what it's like. I'm always tired and I have so many symptoms. Most of the time I just want to lay around and do nothing...
    TavynKeylee TavynKeylee 13-15 7 Responses Aug 8, 2014

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    there is pain in my body but i wont let it

    effect my soul my spirit that gives me the strength to smile every day and be happy for what i have i heard once count small things so i am doing it it is making me happier every moment dont look at the glass empty look its still there half full :)
    POTSforever POTSforever 18-21, F May 31, 2015

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    Losing Strength

    Im trying so hard, but I can't control how my body feels and I don't have any money. I want so badly to be better and work again and fix my car but i don't have the means to do it. I can't seem to do anything anymore. I want clean clothes but I can't get up to wash them, I want...
    kbarrios93 kbarrios93 18-21, F 5 Responses Nov 12, 2012

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    The invisible illness.

    We suffer terrible symptoms that, though often aren't life threatening, greatly handicap us and begin to take control of our life. Yet to most people we often look "fine". My journey began my freshman year of high school. I began to have extreme levels of fatigue, accompanied...
    rbeccalynn rbeccalynn 18-21, F 4 Responses Jan 8, 2015

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    I was diagnosed with POTs 4 months ago however

    I have been sick for a very long time, I always thought the way I was feeling was all in my head. Every time I would faint everyone told me it was all in my head. Finally I started going to the mayo clinic and they listened to me and begin testing me for all kinds of different...
    Bigfatmanatee Bigfatmanatee 18-21, F 2 Responses Oct 19, 2014

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    My heart rate increases dramatically

    when I eat wheat/gluten products. Does that happen to anyone else? I have not been diagnosed with POTS, but will start testing soon. I gave up wheat (not all carb) and fried foods. ended up on beta blovkers bc cardio found I had non sustained tachycardia. I feel like I...
    shama7890 shama7890 41-45, F Jul 16, 2015

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    when though i have pots yet i wanna say to all

    others never give up look at me i never do in life i hope you understand life is meant for living for us to live try every moment
    POTSforever POTSforever 18-21, F May 31, 2015

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    I'm 15 years old almost 16 getting ready to

    drive. I always had big dreams. I wanted to go to Stanford, I got straight A's, I always tried to be the best of the best. I know now that's not healthy. All those dreams have left me. It started out with coughing and being unable to breathe. I started collapsing while hiking...
    shybutkindd shybutkindd 16-17, F 5 Responses Mar 18, 2014

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    Most People Just Don't Understand Pot's!!!!!

    I have had syndrome for over 2years, I,m getting better thank god. it was a long road and a very painful one. The problem I,m having now is trying to explain to some family and friends that there is limitations to this illness, I had to make major life style changes because of...
    Ihavepotssyndrome Ihavepotssyndrome 41-45 3 Responses Sep 7, 2012

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    After being diagnosed

    and being put on a bunch of new medications, I gained 30 lbs in a matter of months. I was even eating healthier and trying to work out as much as I could... did anyone else have this problem or knows how to lose weight with POTS?
    Samm86 Samm86 18-21, F 4 Responses Sep 5, 2014

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    Success!!! Quote From Girl Who Just Finished Dr Levine's Treatment Protocol For Pots

     "I just completed a POTS study in Dallas , Texas . It is an exercise study in which they take you off all of your medications and put you on a specialized exercise regimen. It starts with all seated exercises like the cardio rowing machine, recumbent bike and swimming. It...
    POTSRecovery POTSRecovery 41-45, F 9 Responses Feb 24, 2010

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    Today I had an appointment with my primary care

    physician. I suspect that I have POTS. For almost 10 years I have been dealing with chest pain, shortness of breath, muscle pain, spams and twitching and fatigue. I also have ulcerative colitis. I'm 27 years old. So, I handed my doctor an article on POTS and she immediately told...
    anewsyd anewsyd 26-30, F 3 Responses Jun 22, 2015

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    Postural Orthostatic Tachycardia Syndrome Is What I Have...

    i'm 26 years old.. and i was diagnosed with mitral valve prolapse when i was 22 and when i was 23 , i was diagnosed with Postural orthostatic tachycardia syndrome. I must say this explains to me why i'm so fatigue and exhausted for nothing. At times pots can really take a toll...
    Anonymousgirls411 Anonymousgirls411 26-30, F 1 Response Oct 8, 2013

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    emilysorrell emilysorrell 16-17, F 2 Responses Feb 7, 2015

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    I was always shy but full of imagination

    and did well in school, flute, sports, and enjoyed nature and life. In junior High, as we called it then, my friends wanted to run around during lunch and I just wanted to sit there. It could have been from having my tonsils removed, I'm not sure. In high school this punk kid...
    banishpots banishpots 51-55, F 1 Response Nov 20, 2015

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    I set up a blog for people with POTs to follow

    me as I undertook a charity bike ride last June, I've never done biking and suffered from POTs, I've now updated my blog and would love people with POTs to read it as for me it shows the importance of exercise and also some additional symptoms in which it would be lovely to see...
    PotsieGirl PotsieGirl 41-45, F Dec 10, 2014

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