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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. 862 People

    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 10 Responses Jan 28, 2010

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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 3 Responses Nov 9, 2013

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    Pots Syndrome..help For A Helpless Situation (getting Diagnosed)?

    Let me start by saying I have not been officially diagnosed with pots..which is where I need advice. I am 21 years old and have had bizzare symptoms from age 12. My symptoms consist of fatigue, dizziness upon standing, brain fog, nausea, constantly being cold, blue splotchy...
    possiblypots possiblypots 18-21, F 3 Responses Feb 15, 2013

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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 1 Response Sep 26, 2013

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    I was diagnosed three years ago

    and it has completely taken over my life. I had to give up my college sport which I loved because of my illness and now i feel worthless. I suffer through college because POTS gets in the way of me succeeding academically and I feel helpless hopeless and like a failure to myself...
    A10371232 A10371232 18-21, F 3 Responses Jun 9

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    What Do You Tell People Who Don'T Get It?

    I am recently diagnosed and believed to have had POTS since childhood. My own mother knows I have POTS but continues to down play or try to blame the way I feel on things like the weather! Other people don't get it either. This is frustrating. What do you tell these people...
    cantSTANDstanding cantSTANDstanding 26-30, F 6 Responses Jun 9, 2013

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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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    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

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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 4 Responses Aug 9

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    I was wondering if anyone in the US knows of a

    great POTS clinic. I tried the mayo clinic program and it didn't help. I need a clinic that can help with my muscle degeneration, memory loss, all over body pain, and extreme joint pain. Please help.
    POTSforever POTSforever 16-17, F 3 Responses Jul 9

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    So glad to have found this.

    The only other POTS groups I am a part of are on Facebook and I don't really want my friends knowing how much I struggle. Feeling comfort in the anonymity among other POTSys. I'm sure there are many others scrolling through as they have difficulty falling asleep tonight. You're...
    Zebra223 Zebra223 26-30, F 1 Response Jul 3

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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

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    Ahh insomnia go away!

    !!! Even with medication sleep just doesn't want to be apart of my schedule. But that's alright I guess sleep isn't required to kick pots butt!! Keep fighting everyone!!
    kelizabeth13 kelizabeth13 18-21, F 1 Response Jun 15

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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, F 4 Responses Sep 7, 2012

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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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    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 6 Responses May 19, 2012

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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

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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

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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 Jul 16

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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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    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...
    TavynSantee TavynSantee 13-15 4 Responses Aug 8

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    Has anyone tried a "cooling vest"?

    if so, are they effective and what brand would you recommend? The heat has really been bothering me.
    Nojji Nojji 13-15, F 1 Response Jun 8

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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 1 Response Aug 3

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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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    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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    Life As I Know It

    I have had POTS for almost 6 years, but I have only had a formal diagnosis for a week. I found POTS on the internet about 4 years ago and I immediately suspected that I had it, but as we all know, it can be hard to find a doctor who has even heard of it. My battle with health...
    musicaholic440 musicaholic440 22-25, F 5 Responses Mar 15, 2011

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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

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    Recently I was diagnosed with lymes disease

    the doctor out me in anti biotics. Me and my mom are wondering if you can get pots from lymes and if treated correctly and if they caught it in time I could be cured from lymes and hopefully pots. But my hopes are that I get cures from lymes. It's been a long year I'm going to...
    Megan2020 Megan2020 16-17, F Jun 13

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    After at least 20 years I finally have a POTS

    diagnosis. I would not wish what I went through upon anyone. My symptoms started in at least middle school. I hated PE class and would go in late just to skip it. I thought I was just a bad athlete. I could not even run a mile. I was embarrassed. I fainted a lot during high...
    Littlesaraj Littlesaraj 26-30, F 3 Responses Jun 14

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    Living With Pots Syndrome

    I became sick in june of this yr with what was thought to be a virus. Little did I know that worse was to come. I had tachycardia real bad and when I stood up I felt like my legs were going to give out. I was so tired and just couldn't stand to even wash the dishes. I spent 5...
    greeneyes28326 greeneyes28326 46-50, F 16 Responses Aug 25, 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

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    I have had POTS since the last two months of my

    eighth grade year. It took until December for my illness to finally be diagnosed as POTS. But even though I had a diagnoses I still didn't get better on the standard POTS medications because I was allergic to them. Due to my illness I have had to drop down to one class a day and...
    POTSforever POTSforever 16-17, F 1 Response Jul 5

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    I live in Seattle, WA

    and I am trying to find a doctor in this area that knows and treats POTS. Your responses will be greatly appreciated. Thanks!
    yfuentes yfuentes 36-40, F 3 Responses Jun 5

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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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    Does anyone else with POTS get body wide muscle

    twitching? Fatigue? And or panic attacks/anxiety?
    faithhopelove13 faithhopelove13 18-21 4 Responses Jun 17

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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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    Have any of you been in physical therapy

    and did what they told you to a gotten injured? This has happened to me several times.
    POTSforever POTSforever 16-17, F 1 Response Jul 18

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    Hey fellow POTSies! Just out of curiosity,

    what does everyone do as far as work/job/careers if anything? And if you are in school, what activities/sports/etc are you involved in? Have some of you had to drop out of work or school because of POTS? I ask this because I wonder how many people have had to leave jobs...
    Ktglisson87 Ktglisson87 26-30, F 5 Responses Jul 3

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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

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    POTSforever POTSforever 16-17, F 2 Responses Jul 18

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    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 8 Responses Jan 12, 2011

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    I went to the doctors today to check up on my

    lymes. Last Time I was in there they re tested me to make sure I had it we got the results today and it came back negative. But Iv been tested 4 times and out of the 4 one has came back positive the doctor tested it through his clinic and it came back negative before he told...
    Megan2020 Megan2020 16-17, F Jun 26

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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

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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 20 Responses Mar 6, 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 2 Responses Sep 5

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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

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    lilmisslouhoo lilmisslouhoo 16-17, F 3 Responses Jul 2

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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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    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 27 Responses Jul 26, 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 4 Responses Aug 16

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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

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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 7 Responses Apr 14

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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

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