I Have Pots Syndrome

Personal Stories, Advice, and Support 177 People

    POTS !! I believe I can help.

    My daughter was diagnosed April 2015. UCLA medical center is rated top 100 Hospital on the West Coast. They could not help. We got a new second opinion from an infectious disease doctor. Dr. John Chia in Torrance California. He is treating us with gamma globulin IV IG. We're on...
    Neyda7 Neyda7
    36-40, F
    Nov 1, 2015

    I was diagnosed with POTS

    when I was around ten. I have been on fludrocortisone (florinef) and atenelol ever since. My husband and I are wanting to get pregnant, and my cardiologist just informed me that if we are trying to get pregnant I have to go off my medications IMMEDIATELY. This is very worrisome...
    kdav12 kdav12
    22-25, F
    2 Responses Dec 27, 2014

    I've missed 17 days this semester already

    and am very behind in school. Does anyone else have a really hard time keeping up? My mom says I can start homeschooling but not until I finish this school year.
    TavynKeylee TavynKeylee
    4 Responses Feb 10, 2015

    Can'T Sleep

    Waking up crying in pain is like a usual thing for me now :/ it sucks I wish it could all be over
    Gabycastellano Gabycastellano
    18-21, F
    1 Response Oct 1, 2013

    The Doctors

    November 5th, 2013: Well, today i go back to the doctor. They are supposed to run another EKG on me. This is going to be the 6th one ive had sense ive developed POTS. Everytime i go to the cardiologist or any doctor appointment they never really do anything but switch medications...
    HarlieCox97 HarlieCox97
    18-21, F
    4 Responses Nov 5, 2013
    LivingwithPOTS20 LivingwithPOTS20
    22-25, F
    1 Response Apr 9, 2014

    Going in an ambulance from the community

    hospital to children's. Forget POTS ;(
    december789 december789
    18-21, F
    2 Responses Sep 23, 2014
    december789 december789
    18-21, F
    4 Responses Nov 10, 2014
    december789 december789
    18-21, F
    May 18, 2015

    I have pots syndrome

    and I just got out of the er from it and I feel like my life stops when I have bad episodes
    jolefy101 jolefy101
    18-21, F
    1 Response Jan 31, 2014

    I'm a newbie! My daughter

    who is 17 has been diagnosed with POTS. Can anyone give me any pointers? She has been on the couch in headache pain and faints often...
    jbusard jbusard
    41-45, F
    2 Responses Mar 30, 2015

    I Have Always Felt Isolated With Pots

    I was diagnosed with pots at age 13. I could barely stand because of dizziness and my legs were black. I was in and out of hospitals who promptly told me I must be allergic to my detergent. *sigh*. Finally when I was weak to the point where I could not stand and my Dr had to come...
    wendyw05 wendyw05
    26-30, F
    3 Responses Oct 11, 2013
    clairepots clairepots
    16-17, F
    2 Responses Dec 16, 2015

    I recently have been diagnosed with POTS.

    I'm fifteen years old. I have not yet started treatment but I hope to soon. Some days its really hard to get out of bed, go to school, stay awake, talk to people. I wish I could go back to before I got symptoms. I was able to go to sports games, go out with friends, attend full...
    kater837 kater837
    18-21, F
    3 Responses Mar 5, 2015

    Does anyone with POTS,

    get muscle twitching, fatigue or panic attacks/anxiety?
    faithhopelove13 faithhopelove13
    5 Responses Jun 17, 2014

    I Have POTS

    I have always been an active, healthy teenager. I have always been involved with sports and I never really had any medical issues. At the start of my senior year I would occasionally have some heart palpitations and I always thought it was stress. As the palpitations increased...
    cassidybute cassidybute
    18-21, F
    4 Responses Nov 14, 2013

    Until February 22, i was an elite athlete on an

    extremely competitive soccer team, and also played tennis, piano, and did well in school. Then, i got sick. we thought it was just a virus or mono, i had cold and flu symptoms and a fever and extreme fatigue (to the point where sometimes it was hard to even lift an arm or...
    battlingpots battlingpots
    18-21, F
    1 Response Aug 4, 2015

    I had my follow up appt at mayo clinic

    and they concluded my diagnosis. Read about it at potsisthepits.com I promise my blog isn't boring
    cassidybute cassidybute
    18-21, F
    Aug 11, 2014

    31 years old just diagnose with pots.

    I wouldn't care if I had gotten it a the age of 20-30 because that age your are just figuring things out. Im at the age where I should be married, should have kids, should have a career. Now this thing where ever the hell it came from has stopped me from even showering like a...
    jazmintl jazmintl
    31-35, F
    4 Responses Jun 29, 2015

    Calling all POTsies! Follow my POTs story to

    see how i have coped and have found my remedies. I am sure it is helpful! check it out. www.potsisthepits.com
    cassidybute cassidybute
    18-21, F
    Jun 29, 2014

    In January I was finally diagnosed with POTS.

    For the past three years I have been being misdiagnosed with depression, migraines, and other stuff. It was really hard because my family didn't know what was wrong with me and/or if I was making it all up. I'm 16 years old and I'm supposed to be a junior in high school...
    babyhunnybunny babyhunnybunny
    18-21, F
    3 Responses Aug 17, 2014

    I have had POTS as a definite diagnosis

    for two years now, however I have had it for many years. I am 18 now, an have recently graduated May 24, 2014. During my junior year of highschool I became very ill with my POTS and missed almost three whole months of school. Every morning I would have an episode, and I slept 23...
    TheForestChild TheForestChild
    18-21, F
    4 Responses Jul 29, 2014

    Has anyone ever been to POTS Treatment Center

    in Dallas, TX? We have been saving up for me to go there and I was wondering if it helps at all.
    TavynKeylee TavynKeylee
    1 Response Aug 18, 2015

    In April 2012 I was officially diagnosed w/POTS

    Syndrome after several months of symptoms of worsening symptoms. I was one of the fortunate few who came across a neurologist at the hospital during the first time I was admitted that took notice of my heart rate increasing dramatically every time I sat up or stood up and...
    Jill73 Jill73
    41-45, F
    2 Responses Aug 6, 2014

    Im Julia, I was diagnosed with POTS 3 years ago.

    I went to the mayo clinic pain rehabilitation center last year. They tell you that you shouldn't talk about your pain because it can worsen chronic pain. Today I am in so much pain. I can't talk to my mom about it because she will take phone. I can't talk to my friends about it...
    imafluffyunicorn imafluffyunicorn
    18-21, F
    5 Responses Mar 15, 2015

    I was a normal teen and in July of 2010 I

    passed out and was unresponsive for 45 minutes they called Ems and they took me to the we and my heart rate was 270 and my blood pressure was 82/40 they kept me for 3 weeks and air lifted me to Duke university were I stayed for 4 more weeks and on that time when I got strong...
    pots2011 pots2011
    22-25, F
    1 Response Jul 19, 2015

    I HATE myself. today is a horrible day

    for POTS. Laying down my heart rate is at 130 bpm. I'm extremely exhausted there's just something wrong. I keep getting that cross eyed feeling and it feels like my legs were bleeding everywhere and were numb. I can't with the chest pain. It goes straight through my back. Does...
    december789 december789
    18-21, F
    2 Responses May 31, 2014

    I was diagnosed with Postural Orthostatic

    Tachycardia Syndrome on October 30th 2015. It's suspected that I was born with this and whatever is causing it. I am 16 years old and a Junior in high school. I've always struggled with school, especially gym. I've never been able to focus properly, I couldn't wake up in the...
    xMayesx xMayesx
    18-21, M
    1 Response Nov 20, 2015

    I've been getting dizzy

    for ten years now... just found out it was pots a few months ago.. and now I'm pregnant and I feel like its getting worse
    steph1994 steph1994
    22-25, F
    May 30, 2015

    i wanted to know about getting a possible

    service dog for my POTS. it has been progressively getting worse and now it prevents daily functions. i dont have a feeding or breathing tube but i feel a dog could seriously help me. Anyone have any suggestions?
    sierraboo214 sierraboo214
    18-21, F
    Dec 7, 2015

    I was diagnosed with pots 3 months ago my life

    has been turned upside down and that's putting it politely. I struggle almost on a daily basis I rarely have a good day. I just keep praying this will get better this all started last summer with mild dizziness and it just kept getting worse I was misdiagnosed and told it was...
    angela1985 angela1985
    31-35, F
    1 Response May 12, 2014

    My name is Kate. I live in Oscar,

    Louisiana. I started experiencing symptoms in November of 2012 while pitching in a softball game. It all started with right shoulder pain. I was sent to an Orthopedic doctor and went through therapy. Then, I began to feel tingle-ness and numbness that would travel from my...
    Katedebetaz Katedebetaz
    16-17, F
    2 Responses Aug 24, 2014

    It's gotten bad enough

    where it effects how I go to school I miss so much now and I can't make it all up I'm stressed enough I will fall and have a episode and doctors can't tell me if I'm ever going to get better
    jolefy101 jolefy101
    18-21, F
    2 Responses Jan 31, 2014

    I have a tilt table test

    and a head MRI scheduled for next week. They are trying to completely diagnose with POTS even though I have already been diagnosed. With my severe anxiety, I am curious if any of you have experienced either of these tests? If so, I am curious to know the procedures and how it...
    cassidybute cassidybute
    18-21, F
    4 Responses Jun 28, 2014

    through out my whole life I have suffered from

    daily headaches, dizziness when I stand up, nausea/ stomach upset and constant fatigue I have been to multiple doctors and specialist have MRIs endoscopy and colonoscopys and blood draws and they could never figure out what was wrong they would tell me to desk with it it's been...
    kristykaz121 kristykaz121
    22-25, F
    Mar 10, 2015

    Hi everyone, my name is Lindee

    and I am now 24-years-old going on my 6th year of having POTS syndrome. Aside from the dizzy spells, fatigue, anxiety, brain fog, confusion and multiple other issues; instead, I wanted to come on here and raise just a little bit of awareness that POTS seems to be heavily...
    shultm1 shultm1
    26-30, F
    1 Response May 15, 2015

    I'm afraid to go to my boyfriend's house

    tomorrow. His parents make me nervous and I will have to be bracing against him to keep my balance.... I'm meeting one of his siblings for the first time and I don't want to faint and ruin the whole day...
    xMayesx xMayesx
    18-21, M
    2 Responses Nov 20, 2015

    Ugh the struggle of stairs.

    With my hyperventilation I feel like Hazel Grace when she makes it to the top of the Anna Frank in the Fault in Our Stars movie. Literally one flight = Mount Everest! Just like Hazel we have to keep pushing with each step we will get stronger! #staystrong
    kelizabeth13 kelizabeth13
    18-21, F
    Jun 25, 2014

    CALLING ALL POTSIES and anyone

    who suffers from any form of Dysautonomia...there is a national conference AND lobby day being held in Washington, DC July 11th-14th!!!!! It is so important that we all try to go and raise awareness, get educated about our afflictions, lobby for more research to be done...but...
    Ktglisson87 Ktglisson87
    26-30, F
    Jun 1, 2014
    faithhopelove13 faithhopelove13
    2 Responses Jun 8, 2014

    I started having symptoms at age twelve

    but I had a complete brake down my junior year of high school. I was trying to balance high school, cosmetology school, and my pots symptoms. It was so difficult that my parent were worried because I started to really struggle just to take care of myself and they pulled me out...
    alyssaanna alyssaanna
    18-21, F
    Nov 13, 2014

    I am going through a divorce from a Laser Spine

    Surgeon, Mark Flood. I am VERY ill with POTS, gastroparesis, sjogren's syndrome and dermatomyositis. I was diagnosed with POTS at Vanderbilt University. I am being called a faker in my divorce by my husband's attorney David Maney from Tampa, Florida. Maney told the court that I...
    MsBlakeHasPOTS MsBlakeHasPOTS
    56-60, F
    1 Response Oct 19, 2015

    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
    18-21, F
    1 Response Jul 22, 2015

    I have just gotten my pots diagnosis.

    it's hard realizing this is not going away any time soon. they think I have had it since I was little but as I have gotten older it's gotten worse. I hate this
    kristykaz121 kristykaz121
    22-25, F
    3 Responses May 31, 2015

    For 4 years I was misdiagnosed!

    ! Then, FINALLY, I was diagnosed with POTS..let me tell you.. I hate it. One day, out of no where, I had a POTS "attack." My ears were constantly ringing, my neck was stiff, my vision was blurry, and I kept blacking out. On top of that, I started to hyperventilate and I had to go...
    gg819 gg819
    18-21, F
    1 Response Feb 24, 2016

    I have only known I have had pots

    for about 7 months now. I will be a sophomore in high school. I really wanted to letter in volleyball but I don't see that happening. :( I have had a bad week almost all of it feeling horrible while in bed. I need some encouragment. I don't want this week to end bad
    99lynn 99lynn
    16-17, F
    3 Responses Aug 14, 2015

    Hi I am 17 and i was diagnosed January 2015

    with POTS but we were almost certain for several months before. I am a junior in high school and I try not to let my condition keep me out of school, but some days it just isn't that simple. I really know any one else with pots so I thought I would share my story here.
    mermaidmixi mermaidmixi
    18-21, F
    Feb 5, 2016

    I have been diagnosed with POTS

    and misdiagnosed with various other things for 6 years now. I've learned that the most frustrating part about POTS is that it's an "invisible" illness. Other people don't see how crappy you feel on the inside, how hard it is to get out of bed somedays, or how hard it is to just...
    LivingwithPOTS20 LivingwithPOTS20
    22-25, F
    2 Responses Apr 8, 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
    18-21, F
    1 Response Apr 12, 2015

    I had my gallbladder removed on April 27th

    after months of feeling nauseas and my doc thinking it could have been related to my gallbladder having issues. It's a good thing that they did take it out because it turns out, even though the tests didnt show it that it was chronically inflammed so could have ruptured at any...
    tgleiker tgleiker
    41-45, F
    2 Responses Jul 15, 2015
    december789 december789
    18-21, F
    2 Responses Oct 25, 2014
    emilysorrell emilysorrell
    18-21, F
    1 Response Feb 7, 2015

    Its been about 5 months

    since I was diagnosed with POTS. I have been suffering every single day and I just want to feel healthy again. My anxiety and depression has become so severe that they have me in counseling, put me on an anxiety med, and referred me to a shrink. I am so sick of just crying and...
    cassidybute cassidybute
    18-21, F
    4 Responses Mar 8, 2014
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