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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. 899 People

    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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    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 1 Response Jun 22

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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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    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 6 Responses Aug 8, 2014

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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 5 Responses Aug 16, 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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    There is hope. Learn about some of my

    experiences with pots and how I have learned to cope and help lessen my symptoms! I've been dealing with pots for a year now so I can promise you I have some good suggestions. Www.potsisthepits.com
    cassidybute cassidybute 18-21, F 1 Response Jul 16, 2014

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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

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    emilysorrell emilysorrell 16-17, F 2 Responses Feb 7

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    Over a year ago I was diagnosed with Postural

    Orthostatic Tachycardia Syndrome. I've battled high school with this non curable disease, but I now I graduated and it is time for me to battle college. High school and college are two very different things... And I am terrified to go to college considering while I was at high...
    heyycutie16 heyycutie16 18-21, F 3 Responses Jul 13, 2014

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    I am really struggling cos I have fibromylagia ,

    migraines , ins , Pcos and so many others. the last year has been tough and I have been unable to complete my studies .
    ebitogu ebitogu 26-30, F Aug 19, 2014

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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

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    In 2009 I was diagnosed with pandysautonomia -

    POTS after getting ill from having a flu shot. It has completely taken everything away from me. I have had problems with my blood pressure, sever nausea and vomiting, and lost so much weight. My Bp is either to high or too low... it has a mind of it's own and dose what it wants...
    Buffy2014 Buffy2014 36-40, F 1 Response Aug 5, 2014

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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 16-17, F 3 days ago

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    I want to express my frustration without

    offending anyone. I get very down on myself when I read about other POTSies who are athletes or can run. I am extremely happy for them that they are able to exercise and participate in sports, but I tend to compare myself and get frustrated that I have difficulty with much less...
    Zebra223 Zebra223 26-30, F 2 Responses Jul 3, 2014

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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

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    Having pots has changes my life completely in

    the morning I can't just get out if bed,I have to drink 1 full glass of water because when I get out of bed my heart rate jumps from a normal heart rate to 40 beats faster than a normal heart beat, and I get dizzy. I take it one day at a time I workout everyday I sometimes get...
    Megan2020 Megan2020 16-17, F 2 Responses Jan 26, 2014

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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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    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 5 Responses Aug 9, 2014

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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

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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 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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    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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    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

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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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    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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    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 15 Responses Feb 1, 2010

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    It Has Been One Year Since I Was Diagnosed With Postural Orthostatic Tacycardia Syndrome

    Last year I went to a cardiologist and was told that I have Dysautonomia 3 weeks later on my return appointment told me I had POTS. I found out that my cardiologist does not treat POTS just tells you what is wrong with you. So for the past year I have been to doctor to doctor and...
    saltys saltys 18-21, M 2 Responses Nov 11, 2013

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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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    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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    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

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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

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    Adding to my previous post - no one around me

    understands pots, my mum knows I'm ill but gets frustrated at me telling her how I feel and says she is fed up of hearing I'm ill, my friends haven't even taken a interest to find out what it is and just complain behind my back that I'm boring because I don't go out anymore, I...
    potsie2222 potsie2222 18-21, F 8 Responses Apr 14, 2014

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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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    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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    Have any of you tried to go gluten free cuz of

    pots?? I just recently did and wondered what other people's experience has been with it?
    Ktglisson87 Ktglisson87 26-30, F 1 Response Jul 4, 2014

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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 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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    An Idiot's Guide To Pots, By An Idiot

    This is a general guide to POTS. I've found that medications like beta blockers, antidepressants, and so on have very different affects on different people. Just because you hear one success story with a type of medication, does not mean you should jump into it. Test your body's...
    Gone119 Gone119 22-25, M 5 Responses May 19, 2012

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    I'm an athlete and have always been an athlete.

    I was diagnosed with POTs a year and a half ago and it has taken complete control of my life. At first, doctors thought it was just anxiety or that I was faking it. It took two trips by ambulance on two different occasions for one doctor to finally take me seriously. And...
    Liv44 Liv44 18-21, F 1 Response Aug 12, 2014

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    Pots Is Ruining My Life.

    Back in Septemeber, I woke up one moring, with stomach pain, thinking maybe, I was just being a woman, I went on with my day, went off to school, in progressivly got worse, I couldn't stand anymore, I called my mom and made her come get me. I ended up in the hospital for the...
    kantieau kantieau 18-21 28 Responses Jul 26, 2010

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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

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    Do anybody have worse symptoms POTS at night.

    . I how 5 time harder symptom of POTS at night. How evening is coming my symptoms are getting much worsen. How day is ending my blood is sinking more and more. Salt helps but in summer symptoms can be very strong.
    Drybrain Drybrain 26-30, M 2 Responses Aug 3, 2014

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    Bedridden With Postural Orthostatic Tachycardia Syndrome

    I have Postural orthostatic Tacycardia Syndrome and have been bedridden for nearly 5 years.I have low blood volume and no quality of life, i suffer with a tight chest,breathlessness,pooling of the stomach and legs,low blood pressure and feel dreadful all day. I am soon to start...
    gillyann gillyann 56-60 17 Responses Dec 6, 2008

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