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. 930 People

    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

    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
    22-25, F
    2 Responses Oct 19, 2014

    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
    3 Responses Sep 7, 2012

    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
    6 Responses Jan 6, 2013

    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

    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
    11 Responses Jan 12, 2011

    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
    7 Responses Aug 8, 2014

    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

    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

    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

    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
    18-21, F
    4 Responses Jan 17, 2014

    I'm a freshman in high school (15),

    and have been struggling with POTS since 7th grade. I'm quickly losing all of my friends and struggling to stay in public school. I have always dreamed of being in the marching band at my high school, and managed to make it for a couple of months last autumn, but as of now am...
    DarthSarah DarthSarah
    1 Response Feb 28

    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
    22-25, F
    5 Responses Nov 9, 2013

    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

    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

    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
    31-35, F
    Aug 19, 2014

    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

    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
    2 Responses Oct 8, 2013

    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

    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
    3 Responses Sep 5, 2015

    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
    17 Responses Feb 1, 2010

    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

    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

    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
    4 Responses Apr 6, 2015

    I'm writing a blog about my experience with

    POTS / Dysautonomia and wanted to share it with you. I hope to express myself through this blog in a way that I can do personally, so if you want check it out. thats-so-tachy.blogspot.com
    brittkinkade brittkinkade
    18-21, F
    1 Response Dec 26, 2015

    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

    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

    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
    18-21, F
    5 Responses Mar 18, 2014

    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

    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

    Well, I've always been a pretty slow

    and nonathletic kid. I could never run as long as all of my friends and that made it really hard to play with them. Also, my "friends" would make fun of me because I couldn't keep up. I always just thought I was out of shape. Which I probably was. Teee heee. But, that's not the...
    Kimbree Kimbree
    13-15, F
    1 Response Feb 20

    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

    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

    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
    18-21, F
    6 Responses Mar 28, 2015

    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

    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
    1 Response Jul 22, 2015

    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

    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
    17 Responses Dec 6, 2008

    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
    29 Responses Jul 26, 2010

    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

    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

    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
    46-50, F
    Dec 10, 2014

    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
    1 Response Nov 2, 2014

    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
    3 Responses Apr 10, 2011

    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
    16-17, F
    6 Responses Aug 16, 2014

    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
    31-35, F
    2 Responses Oct 29, 2015
    emilysorrell emilysorrell
    18-21, F
    2 Responses Feb 7, 2015

    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

    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

    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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