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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. 796 People

    jmsparky jmsparky 41-45, M 5 Responses Feb 17

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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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    Do any of your necks hurt?

    All the time mine does I need some advice weather or not it's from pots Thanks!
    Megan2020 Megan2020 13-15, F 1 Response Feb 28

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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 10 Responses Jan 28, 2010

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    Well its back to square one again.

    My new medication, it worked as in stopped me fainting but gave me a severe allergic reaction, now I have burnt, rashy skin & it's ugly. Im too fed up, I thought I had the disability... but now, apparently its got me :(
    Paigemb Paigemb 16-17, F Feb 27

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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 4 Responses 4 days ago

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    Last night around 2:00 I went to the ER.

    I had a migraine my mom gave me my medicine about 15min later my heart started racing it's never happened like that before. When we arrived at the ER just from laying in bed my heart rate was 125
    Megan2020 Megan2020 13-15, F 2 Responses Feb 28

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    I have a mild form of POTS.

    I have low blood pressure and always feel so dizzy. My hands go numb when I get my heart rate up. Everybody thought I was crying wolf because I feel faint everyday.
    mcshort6443 mcshort6443 18-21, F Jan 14

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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 5 Responses Jun 9, 2013

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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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    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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    I am new to this as I noticed several posts

    about pots syndrome I was wondering if someone could help me? I have suffered with this since I was 14 (I am now 19) but was only diagnosed a few months ago after pushing the doctors for years for further investigations I had a tilt table test which I was diagnosed from! However...
    potsie2222 potsie2222 18-21, F 4 days ago

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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 7 Responses Jan 12, 2011

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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 13-15, F 3 Responses Jan 17

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    I was diagnosed with POTS five years ago,

    my sophomore year in high school, but I got "sick" my freshman year. It took almost a full year, and countless tests, to discover that I had POTS (something we suggested from the start- I have 2 cousins who have it as well). I found a good doctor, got on medications, and got...
    daniellee07 daniellee07 18-21, F 1 Response Feb 10

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    Years Of Misdiagnosis

    Hi, I'm Lia. I'm 23. I just got diagnosed with POTS a year and a half ago. However I was sick for years before they finally figured it out. I started showing symptoms around ten or eleven years old. I missed so much school. I was basically written off as being a hypochondriac and...
    liarenee liarenee 22-25, F 2 Responses Nov 10, 2013

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    I have Postural Tachycardia Syndrome,

    as I only have issues with my heart rate not my blood pressure when standing. Does anyone else have this? What helps? I'm waiting on a call from my doctor on which step in next in treating this. I was just diagnosed 2 days ago from a tilt table test. Does any one else get...
    Konig316 Konig316 26-30, F 3 Responses Mar 30

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    I'm in track this year doctors say it's good to

    stay active. Especially if you have pots I never thought of myself as a runner but joining track made me realize you don't have to be the best. I love it everyone encourages one another I've felt great I have a meet tomorrow I'm beyond excited!
    Megan2020 Megan2020 13-15, F 1 Response Apr 7

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    Is playing sports a good idea

    for a POTSie? I believe I have had a mild case of POTS for most of my life, but it has recently been brought to my attention. My symptoms aren't as bad as they were at the beginning of the summer; they're actually pretty manageable now. I can work out and go to school. I'm...
    ovalsquare ovalsquare 16-17, F 2 Responses Feb 17

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    I was diagnosed on a tilt table test in

    November of last year. It has been a really hard road to even get this diagnosis. It took almost 3 years before a doctor even suggested that this is what it is. I am tired of feeling like I am going to faint, or get constant vertigo. I think one of the worst parts is I have...
    livingfornothing livingfornothing 31-35, F 1 Response Mar 11

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    Anyone on disability?

    Im going to apply and am wondering what its like, any advice? I know Ill be denied the first time and it can take years to be approved but thats it. Im a bit nervous because Ive heard bad stories... any advice or experiences would be appreciated:)
    winterwind222 winterwind222 26-30, F 1 Response Jan 28

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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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    Symptoms get worse around menstrual cycle -

    I've heard other women with POTs report an increase of symptoms near their menstrual cycle. This just started happening to me and I wonder if it really is that common? Any tips with dealing with this? My symptoms get worse about three days before my menstrual cycle.
    ovalsquare ovalsquare 16-17, F 2 Responses Mar 1

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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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    To anyone interested in a support

    group/personal experience blog about my experience with POTS, just copy and paste this link and check it out! please comment anything to add or to question! :) www.potsisthepits.weebly.com
    cassidybute cassidybute 18-21, F Mar 25

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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 13-15, F 2 Responses Jan 26

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    Looking For Some Support (pots)

    My name is Jane, 16 years old, and I was recently diagnosed with severe POTS. My symptoms began with general weakness, shortness of breath, and fatigue. I found myself out of breath going upstairs and I couldnt stand up for more than a few minutes without getting very dizzy and...
    jayne16 jayne16 16-17 3 Responses Dec 27, 2012

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    I have recently been diagnosed.

    I am looking for advice. Tips that help on days when you feel really terrible. Anything that could be helpful. I am 17 and its really hard to be sick when all you want to do is live your life to the fullest.
    artgirl96 artgirl96 18-21, F 7 Responses Jan 14

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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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    At least, I think I might.

    I've been experiencing really strange symptoms for the last 4 years or so. It started with fainting spells. Well, I call them fainting spells only because I have no other way to describe them. I never actually lose consciousness, but from time to time, I'll feel my heart start...
    kuristitches kuristitches 18-21, F 1 Response Jan 28

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    Please please respond

    if you are relatable. My anxiety with POTS has become so extreme and i am constantly worrying about every little thing in my body and always thinking something is wrong with me. Does anyone ever get like a super quick throb/dull ache in their bones and/or joints? Im paranoid i...
    cassidybute cassidybute 18-21, F Mar 26

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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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    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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    I'm 14 and ive recently been diagnosed with

    pots, im a high achieving teen and always wondering why just living was so much harder for me...its basically really ruined my life and taken my youth...im tired and very weak all the time. I also have lots of problems with brain fog and sweating.
    Hannah136 Hannah136 16-17, F 2 Responses Feb 11

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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 4 Responses Nov 9, 2013

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    Feeling pretty miserable right now,

    so tired of never having the energy to do anything and if I do manage to its always ruined/cut short by me fainting or getting dizzy and feeling sick. So tired of it all. Feel so alone sometimes.
    ncp87 ncp87 26-30, F 2 Responses Feb 20

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    Hi guys! I have POTS.

    I was diagnosed with this last January. I went to the hospital Christmas day, and it just went downhill from there. I feel like I need to talk to other POTS patients about it. It is getting that time of year again when I got sick, and I'm just getting scared if you would like to...
    haleynicolee haleynicolee 13-15, F 2 Responses Dec 9, 2013

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    Fighting

    I am so tired right now, I can barely keep my eyes open. I want sleep to come so bad. I want to lay in my own inner calm, but I can't. Sleep is my drug, and wakefulness is my prison. I am at war with my body. I should not rest, but I have no energy to spare. My head spins; it...
    Seabreeze843 Seabreeze843 13-15 Feb 28, 2012

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    I have just been put on 10 sodium tablets per

    day. This is apparently meant to help my POTS, has this worked for anyone else?
    justplainhollyjayne justplainhollyjayne 13-15, F 1 Response Mar 24

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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 19 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 14 Responses Feb 1, 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 13-15, F 3 Responses Mar 18

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    Has anyone else experienced random bruising

    with POTS? I've had what appears to be a large bruise appear on my thigh and wondered if this was part of POTS.
    justplainhollyjayne justplainhollyjayne 13-15, F Mar 23

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    I Want My Old Life Back

    So I started feeling somewhat better and thought that I would be okay to go to the school football game last night. I felt okay all day and didn't do anything to take my energy or anything like that. But I really wanted to go because it's my senior year and since I've been in the...
    Gabycastellano Gabycastellano 18-21, F 3 Responses Sep 28, 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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    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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    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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    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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    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 3 Responses Mar 15, 2011

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    I need someone to talk to.

    I feel so alone
    A10371232 A10371232 18-21, F 5 Responses Mar 11

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    I have been struggling with fatigue with pots

    for the last 15months. Has anyone found anything to help this?
    Kas25 Kas25 22-25, F 1 Response Apr 6

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    Diversity2014 Diversity2014 31-35, F Feb 28

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    If I wanted to go to a tanning bed would I

    still get tan? Or Because of my pots. Or even laying out in the sun for hours or will I stay pale :(?
    Megan2020 Megan2020 13-15, F 1 Response Mar 25

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    I Am At Death's Door

    I am going to keep this as short as i can, so i'll be short worded so as to get in all my symptoms and span of my medical history.  I am 33 now, mother of 2... practically and invalid at this time, now for over a year straight.  Previous years consisted of sporadic...
    hilbiligrl hilbiligrl 31-35, F 16 Responses Oct 5, 2010

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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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    Does anyone experience joint pain

    and muscle aches all over with their POTS? I do and it's awful. I can't take ibuprofen because it's messed up my stomach and Tylenol doesn't help. Advice?
    Knil210 Knil210 22-25, F 5 Responses Jan 28

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    Related Experiences

    Fortunately I am self-employed and can sleep the hours I "like" to 6AM-1PM. Not that I really want to be this way, but every time I try to reset to normal time, it only lasts a...
    Pozadam Pozadam 46-50, M 1 Response Mar 19