I Have Dysautonomia

for those with the autonomic nervous system disorder 249 People

    I am a 22 year old female.

    I was first diagnosed when I was a sophomore in Highschool. But the whole year and a half before that the doctors had no clue what was wrong. From reading others stories that's quite common. But I have been healthy and off medications for about two years now. Then, about a...
    jordan53211 jordan53211
    22-25, F
    1 Response Sep 3, 2014

    I worked for 7 hours,

    running around playing with children. Does anyone know if a 'headache' is a symptom of Dysautonomia? It's an odd feeling, right about my ear, where glasses would rest. It's hard to deal with because I work at a bouncy house place, and running around is sort of a must in that job...
    HawaiianPunchz HawaiianPunchz
    18-21, F
    Jul 12, 2014
    devinmarieb devinmarieb
    46-50, F
    May 3, 2015


    I've had symptoms of dysautonomia since puberty. I have odd food intolerances that come and go; for example, if I have lactose between ~4:00 a.m. and 7:00 a.m. it will give me nausea, but I can have all the milk and ice cream I want the rest of the day and will be fine. I have an...
    RecklessWrecker RecklessWrecker
    3 Responses Nov 20, 2013

    Need to vent: I'm ALWAYS tired,

    constipated, and light headed. I feel like Dysautonomia is taking over my life as it does effect my daily life and relationship :(
    mo93 mo93
    22-25, F
    Feb 21, 2016

    Does anyone else wake up feel nauseous?

    I have anxiety, and I can't figure out if it's my dysautonomia, or my anxiety. I know that dysautonomia also causes anxiety... So....
    HawaiianPunchz HawaiianPunchz
    18-21, F
    May 12, 2014

    It wasn't until recently

    that I was diagnosed with this hell. Living with anxiety was enough, and now I have to go through this. Getting up every morning is hard, and I feel exhausted. My temperature changes at random times, causing me to sweat when it's icy cold outside! I'm in High School, and just...
    HawaiianPunchz HawaiianPunchz
    18-21, F
    2 Responses Mar 18, 2014

    This last summer I have finally been diagnosed,

    but when the diagnoses is something you have never heard of its kinda scary. The doctor said "You have something called dysautonomia." I kinda freaked out. So I did a lot of research. It all made since! Lately it has just gotten a lot worse. For all of April and May I was stuck...
    TheDizzyDiaries TheDizzyDiaries
    18-21, F
    1 Response Sep 2, 2015

    Red Band Society. For people

    who dont have health problems, I hope this show is an eye opener. We struggle everyday to do things they can do with little to no effort at all. I have nothing against them, nor will I ever, I just wish for one day I could be normal like them. One quote from the show that really...
    BrittMari BrittMari
    18-21, F
    Sep 21, 2014

    From Healthy To Dysautonomia In One Moment.

    I'm 15 and my Dysautonomia started 2 years ago in the middle of the year,I went to gym and afterwards I noticed I had some really bad chest pain.I had lunch next so I just waited to see if it would work out but eventually about 30 minutes after finishing Gym I went to the nurse...
    MedicallyBroken MedicallyBroken
    1 Response Feb 9, 2013

    I Know I Can't Be the Only One ...

    I was diagnosed with dysautonomia about two years ago.  Anyone who joins this group will know the story, but since it seems no one does yet, I'm going to explain the illness.  Dysautonomia is caused by malfunctioning of the the autonomic nervous system (which controls...
    brandnew brandnew
    22-25, F
    37 Responses Dec 13, 2007

    So it's 3 am and I can't sleep

    yet again. My eyes are heavy and I try so desperately to fall asleep. However, sleep doesn't come for hours. I have a medicine that helps me sleep, but I almost never take it because I feel as if I am a zombie the next day. Tonight I'm up think about how I haven't been to school...
    TheDizzyDiaries TheDizzyDiaries
    18-21, F
    1 Response Oct 11, 2015

    Having Dysautonomia is like screaming in a

    sound proofed room. The doctors see you and they nod their head, yet as as the words tumble out of your mouth you might as well be talking to a brick wall. Our disease a tricky one you see. It toys with us in the most cruel ways, taking away the little things we used to enjoy...
    BrittMari BrittMari
    18-21, F
    2 Responses Sep 20, 2014

    It took two years of not being able to get out

    of bed to figure this out. I can't do this for the rest of my life. I can't live like this. I hate having dysautonomia
    Jlie Jlie
    16-17, F
    2 Responses Jul 12, 2014

    just once I would like to be invited to things

    like normal :/ this is my senior year and no one even knows I exist anymore thanks to my illness ;(
    tacomacountrygirl tacomacountrygirl
    18-21, F
    Jan 8, 2015

    Part One: Hey people!

    It's been a while since my last post and I have do confess that I even forgot about this site existence 'till last week when a user texted me. I was around 15 in my last experience, I guess, and as you all can see I was extremely depressed and all of that sadness was all I...
    Mari028 Mari028
    13-15, F
    Dec 2, 2015

    Daughter With Possible Dysautonomia (baroreflex Failure)

    My 15 year old daughter has been suffering with hyper and hypo tension for over 3 years. Her BP is episodic and some days she is fine and other days her bp can go up and down all day long. Her Blood Pressure highs go up to 280(systolic) / 230(diastolic) and her lows to 60/40. She...
    tamsma tamsma
    2 Responses Jan 21, 2011

    Part Two: I used to felt a lot of pity of my

    self, I admit it. But the day I realized that I had to focus on somenthing else, my life got nothing but so much better! You guys know what I have done these last few years? I discovered real love for reading and writing! I improved my english (I hope hahaha) because I started...
    Mari028 Mari028
    13-15, F
    Dec 2, 2015

    I struggle with it everyday.

    My mom thought this might help. Im trying new things so here goes nothing. I dont want to be defined by my disease, but everything i do is impacted by it. From the moment I wake up to the moment I got to bed. My Migraines were skull splitting until my new medicine, now they are...
    BrittMari BrittMari
    18-21, F
    3 Responses Sep 12, 2014

    Monday night I wound up in the hospital.

    .Tuesday I went to see my PCP who put me on medical leave until yesterday..I went back yesterday and was told to stay off today and have an MRI..my mother has bitched at me non stop since she walked in my hospital room Monday night about me missing work..I've gotten excuses to...
    katelynchildress katelynchildress
    18-21, F
    Jul 25, 2014

    People Look At Me As If I'm Perfectly Healthy

    I'm so sick of people looking at me as if I'm perfectly healthy. Here's a perfect example today I'm not having a great day so I used my disability handicap parking and was verbally attacked for using it. I wish that what's going on on the inside of my body to be shown on the...
    taetaeld taetaeld
    26-30, F
    1 Response Oct 10, 2012

    Dysautonomia Diva

    I am Aaron, I am a 15 year old who has dysautonomia , POTS and on Tuesday I am having surgery to determine if I have a heart condition called SVT. I am just a normal girl, a freshman, who wants to hang out wit her friends, go to movies, go shopping. But my illness has made my...
    DysautonomiaDiva DysautonomiaDiva
    13-15, F
    3 Responses Nov 24, 2012

    Such a pain. When I'm trying to paint my nails

    and my hands shaking ALL over the place!!! GAH!
    HawaiianPunchz HawaiianPunchz
    18-21, F
    1 Response Apr 18, 2014

    Not a Fun Rollercoaster, I Tell You.

    So yeah... I have dysautonomia.  For those who aren't familiar with it (that would be, you know, just about everyone), it's basically a disregulation between your sympathetic and parasympathetic nervous systems.  The basic function of the sympathetic nervous system is...
    deleted deleted
    2 Responses Nov 25, 2008

    Unknowingly Having Dysautonomia For Five Years

    so i have been sick for five years. im 17 now and have been sick since i was twelve. it started off as just being light headed and very tolerable but then when i got to my junior year in high school i could'nt do it and had to quit this cosmotology program i was doing and be...
    brirehab brirehab
    18-21, F
    3 Responses Mar 5, 2010


    My name is Carol and I am 41-years-young. I was diagnosed with dysautonomia on December 23, 2010. I remember it so vividly. At the time, it was a blessing to finally know what I had. I finally had a name to everything I was going through. But the hard part has yet to come. Or...
    carollynd carollynd
    41-45, F
    2 Responses Feb 13, 2012

    Trying To Live A Normal Life

    I was diagnosed with Dysautonomia, POTS, Ehlers-danlos hypermoblity syndrome all in this past winter. I am 17 years old but have been suffering with the symptoms of all of these since I was 12. I have missed so much of highschool and have missed more than half of my senior year...
    findingmyway94 findingmyway94
    18-21, F
    1 Response May 2, 2012

    Today during class, nursing school I felt like

    passing out so I tried to get it under control but I ended up not getting any better got presyncopal and had to be wherchaired to my moms car. I hate it so embarrassing, good news I got a 100 on my test, just wish I didn't have these stupid issues flare up
    submissivenurse submissivenurse
    31-35, F
    Jun 24, 2015

    So, I tought that sharing what I have with

    people who actually understand what is to have it might help me. Or at least, somebody would understand. A year ago or so, I was diagnosed with dysautonomia. I knew by the time a little about it, since my older brother has it too, but in my case is more complicated than his...
    kattarb kattarb
    18-21, F
    4 Responses Sep 28, 2015

    What Is Dysautonomia?

    You are the person who's afraid that you're going to have a heart attack every time you feel a flutter.  You're the person who has been to every type of "ologist" there is; cardiologist, gastroenterologist, neurologist, psychologist, etc., only to get little help from any of...
    needtobefree3333 needtobefree3333
    46-50, F
    1 Response Jun 5, 2012

    Has anyone gotten IV saline therapy

    for POTS??? Has it helped??
    december789 december789
    18-21, F
    1 Response Oct 22, 2014

    Now Isn't It Ironic?

    I have always had a life plan. For the past three years I have planned, dedicated, and lived my life with the sole purpose of preparing the perfect everything for graduate school to study Immunology. Barely five feet tall and almost 100 pounds I was determined and confident that...
    sleeplessnite sleeplessnite
    22-25, F
    1 Response Nov 11, 2011

    Really Better

    So guys, I was really bad and depressed last year. But I don't know, I going to the Church these last months and I am feel that I never been so good since I discovered the illness. And I think you should try too. I won a peace of mind that I can't describe and I don't feel...
    Mari028 Mari028
    13-15, F
    Mar 25, 2012

    Part Three: But let me explain: I didn't

    joined the running club just because I'm rebel! hahaha I did it because I always enjoyed the ideia of running, last year I even developed the habit of going out for a walk everytime I was feeling blue or stressed or about to kill someone (it helped a lot!). Anyway, I did it...
    Mari028 Mari028
    13-15, F
    Dec 2, 2015

    Passing Out All The Time For A Year No Diagnosis Thought I Was Going Crazy!

    Its been about a year since I began passing out cold with no explanation. I have scared my friends family and coworkers been in and out of emergency rooms had every test imaginable. It started last June and progressively got worse I am 30 years old in good shape I work full...
    deleted deleted
    2 Responses Jun 23, 2013

    I Am What Invisible Looks Like By: Breanne

    Camerlin Here I sit wondering when this nightmare will end. Each morning waking up, not knowing what will happen. Will I make it to school? Or even get out of bed? Will I fever and have fog in my head? My illness will never define me, and I?ll never give up the fight. I may...
    tacomacountrygirl tacomacountrygirl
    18-21, F
    Dec 31, 2014

    A Little About Me

    Since a child I was diagnosed with Autoimmune Disease. It has flip-flopped I guess depending on which DR. Wanted to diagnose me. At a real young age I learned mind over matter..... Walk it off.... Get back up..... - made me who I grew up to be. A tomboy, a ***** or a hard...
    mattersovermind mattersovermind
    46-50, F
    Sep 12, 2013

    Dyautonomic Heartbeat

    I have a stethoscope because I'm a geek. I was listening to my resting heartbeat after waking up this morning. I decided to do a little experiment and see what my hb would be standing up. Most people with dysautonomia have a rapid heart beat upon standing, it's part of what...
    AshlynnKate AshlynnKate
    18-21, F
    2 Responses Dec 24, 2011

    Dysatonomia: My Journey My Battle My Victory My Life

     I don't know when my dysautonomia began.  My specialist suggests that I've had it most if not all of my life due to my medical history.  What I do know is that I'm a 28 year old wife and mother of 2 beautiful little girls.  I know that each day I live with...
    mirandapowell mirandapowell
    26-30, F
    1 Response Nov 1, 2009

    Went to the Vascular Surgeon last week

    after suffering DAILY for two years now. However, I have suffered since my teens. It was not as bad until an autoimmune disease revved it up I guess... He thinks this is what I have and referred me back to a Neurologist. I guess so begins the quest to finding more answers (more...
    euphoricvoyage euphoricvoyage
    31-35, F
    May 27, 2015

    Remitting Relpasing Dysautonomia

     I have shared my story here: http://foamyglass.blogs.experienceproject.com/152777.html with some tips on what has been helpful for me in my efforts to recover....
    foamyglass foamyglass
    1 Response Jul 30, 2009

    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

    Tomorrow Is My First Appointment With The Neurologist.

    I was diagnosed this summer with Dysautonomia by my cardiologist. With time he has kind of said it is something that you are going to have to live with. To me, that is honestly no answer. I talked with my referring physician and told him how I really believe we need to get a...
    teresahashope teresahashope
    31-35, F
    1 Response Sep 18, 2013

    Not Diagnosed Yet....

    But I have all the symptoms except POTS that I know of. I used to pass out all the time when I was younger and just recently diagnosed with IST. I always had a very rapid heart rate, as long as I can remember. I know some of the symptoms have gotten worse since I have gained 100...
    caelanga caelanga
    41-45, F
    1 Response Oct 28, 2013

    Possibly Pots

    When I was 17 I started having weird medical problems, I was going to the washroom ALOT and was having weird anxiety, my heart would palpitate really weirdly, blurred vision, weakness, fatigue, feeling faint disoriented. I went to my doctor and i had tons of tests done and they...
    smm12 smm12
    6 Responses Aug 12, 2008

    "Living With Dysautonomia"..Searching For A Cure♥

    I am a 63 yr. ( young) female! I have lived my life the best way I know how. I was diagnosed with Dysautonomia about 15 yrs ago. I went through many yrs.of hospital visits, stays & many test. Being mis-diagnosed with Chronic Fatigue Syndrome,Lupus, and many others, before getting...
    spinlady spinlady
    66-70, F
    Sep 18, 2013

    Does anyone know if metallic taste

    after drinking water is a symptom?
    HawaiianPunchz HawaiianPunchz
    18-21, F
    Sep 3, 2014
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