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I Have Dysautonomia

for those with the autonomic nervous system disorder 206 People

    My Illness, My Life, My Hope

    My story begins at the tender age of 13. It was then that I began having strange dizzy spells. My family thought it was all a ploy to get attention. Sometimes I thought that too. It's hard to deal with something that's so scary and have no one believe you. My mom just thought it...
    DizzyGirl27 DizzyGirl27 22-25, F 2 Responses Sep 12, 2012

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    Sick Of Misinformed Or Uninformed Doctors!

    Okay so I need to vent a little bit. 2 weeks ago to see a neurologist. I waited 2 months for this appointment. I got there and signed in and everything and sat down. Well the lobby was 69 degrees so I was freezing even though I had a jacket. I was also running fever (as I often...
    DizzyGirl27 DizzyGirl27 22-25, F 1 Response Sep 11, 2012

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    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 16-17, F 3 Responses Mar 5, 2010

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    Dysautonomia

    I have been diagnosed with dysautonomia for almost 3 years. I can remember the day I started feeling different. All of the sudden I couldn't swallow. It felt like there was a lump in my throat. I felt like I couldn't eat or drink anything. Then I started having blurred...
    EMeg EMeg 22-25 7 Responses Oct 16, 2008

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    Thank God L'm Not Nut,s

    I'm 72 year old femail,was just diagnosis with Dysautonomia, First I was told I had MS,.The sad part about this is it took many Doctors and many years to diagnosis this,So much of this could have been avoided, there might of been help for me, I had so many symptons I thought I...
    aminda22 aminda22 66-70, F Nov 24, 2012

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    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 21-25, F 36 Responses Dec 13, 2007

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    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 41-45 1 Response Jul 30, 2009

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    I'm A 45 Y.o. Woman With Dysautonomia W/arrythmias & Anhidrosis.. Need Doctor(s) In Chicago Area Desperately

    Hi - 7 years ago I started having daily arrythmias (PAC's, PVC's) which I can feel & make me feel like I'm going to drop dead, some causing Vasovagal near-syncope; also have stopped sweating completely; recently developed dizziness, spaciness, blurred vision, extreme sensitivity...
    BlahBlahAndBlah BlahBlahAndBlah 41-45 4 Responses Jan 13, 2012

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    "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 61-65, F 1 Response Sep 18, 2013

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    The Invisible Illness.

    There were those days were I would lay down and think "am I crazy? can't they see that I'm sick?" So what's worse than an illness? An invisible one. I was always athletic, raised around male cousins. I could be outside for hours and hours, running around without a problem. But...
    MeliDarling MeliDarling 16-17, F 3 Responses Feb 28, 2011

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    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 18-21 6 Responses Aug 12, 2008

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    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

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    Dysautonomia Part of the Problem

    I have dysautonomia. For me it was caused from Lyme Disease. The Lyme bacteria has attacked nearly every system in my body because it was not caught early, not diagnosed (well, misdiagnosed) for about 10 years. The worst symptom for me though, is the...
    seekfind seekfind 36-40 Feb 13, 2009

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    Dysautonomia, And POTS.

    I've been living with terrible symptoms of POTS for almost two years now. I've joined this to hopefully get some support and answers because I've come to a REALLY depressed point in my journey where I'm not even sure if going on is worth it anymore. I would honestly say that I...
    ohitspotsy ohitspotsy 18-21, F 1 Response Aug 19, 2013

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    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

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    I Wish They Could Understand And Yet I Wouldn't Wish Illness On Anyone.

    "you can be you or you can be ill" This is what someone said about people with illness. What an awful thing to say. I am a person that suffers from multiple chronic illnesses and rise above them. That is who I am. Every experience, every heartache, every struggle makes you...
    DizzyGirl27 DizzyGirl27 22-25, F Sep 13, 2012

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    Invisible

    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 22-25 3 Responses Nov 20, 2013

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    Just Diagnosed With Dysautonomia...

    Hi There, My name is Vanessa I am 31. I was just recently diagnosed with dysautonomia. It started for me when I was very young. I remember my heart racing in the middle of the night, constant anxiety, trouble with my bowels and countless other symptoms. I was labeled as weird...
    meowtattoo meowtattoo 31-35 2 Responses Oct 7, 2010

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    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

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    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

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    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

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    A Lifetime Of Dysautonomia

    I have had syncope off and on since I was a teen. Had migraine headaches in my twenties, but they went away for more than a decade and came back as cluster headaches. I was diagnosed with fibromyalgia in 1989, high blood pressure in the early 90's, overactive bladder in the mid-9...
    Sharli Sharli 56-60 Feb 25, 2011

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    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

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    12 Year Old Daughter Has Dysautonomia

    Hi all, my 12 year old "C" was diagnosed about 9 months ago. She had a mild case because she wasn't actually fainting, but she would have episodes of bad fatigue and tachycardia. A cardiologist did not do a tilt table test but all of her blood work was normal and ultrasound, EKG...
    Shawnita Shawnita 41-45, F 1 Response Nov 15, 2012

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    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 13-15 1 Response Feb 9, 2013

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    Medical Mystery

    In summer of 2012 I started feeling very sick. I was constantly tired, my head hurt extremely bad, heart palpitations(of around 230 beats a minute), and I would get dizzy spells when ever I would stand up, and when I was active for too long. I work on a dairy farm, so I just...
    Imgabbs Imgabbs 16-17, F May 11, 2013

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    My Whole Life

    Diagnosed after a surgery brought on serious problems, but first symptoms appeared when I was 7. Life has been very scary ever since. Been having a lot of trouble with friends and family not understanding, save a few, of whom I am grateful for. Need people to talk to everyday...
    NotKrazyKatt NotKrazyKatt 41-45, F 1 Response Aug 15, 2013

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    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

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    From Healthy To Dysautonomia In 10 Months

    Well around February this year I began having issues with foot pain, after months of treating plantar fasciitis, I had MRI's of both feet. The MRI's showed no issues with my feet and the podiatrist and foot surgeon said my issue was nerve related. Made an appointment with a...
    Iamxitd Iamxitd 41-45, M 2 Responses Oct 18, 2012

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

    and my hands shaking ALL over the place!!! GAH!
    HawaiianPunchz HawaiianPunchz 16-17, F 1 Response Apr 18

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    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 41-45 2 Responses Jan 21, 2011

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    Am I In Heaven?

    When I was 14 years old I was in Catholic Mass with my mom. I fainted in the middle of the service. I thought I died because the priest was standing over me praying when I awoke. I had a battery of tests run on me. Finally they discovered I have Neuro-Cardiogenic Syncope with...
    m0mf1sh m0mf1sh 26-30, F 1 Response Sep 20, 2012

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    Dysautonomia

    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

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    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 16-17, F 1 Response Mar 18

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    I Might Be Helpless Much Of The Time, But I Am Never Hopeless!

    I was diagnosed with POTS about 3 years ago. No reason why, just have it. Don't know how I got it either. I just know that I feel poorly (I'm using nice words) most days. Have GP that is treating me with meds. Other than that, no other real treatment and no Dr.s on the horizon as...
    bebe127 bebe127 41-45, F 1 Response Aug 27, 2012

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    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

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    The Fear Of Losing My Independence.

    Hi.  I am a 44 year old female, single mom of 2 daughters and I have had the unfortunate luck of being diagnosed with Dysautonomia 6 years ago. Mine started very abrubtly...On July 31, 2004 my youngest daughter woke me up in the middle of the night saying she was not feeling...
    bogeybear09 bogeybear09 41-45, F 1 Response Oct 30, 2010

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    Living To Do Your Best With This Strange Experience

    Hi I have P.O.T.S, 2ND degree AV node block, right bundle branch block, etc. I was diagnosed after 3 years of many other diagnosis ie. epilepsy, wolf Parkinson white syndrone, etc. I was just so relieved in the end to have something with a name lol. I thought I was going mad and...
    Bananabrainme Bananabrainme 51-55 1 Response Sep 16, 2010

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    Alex's Dysautonomia Story

    My little brother Alex has just been diagnosed with Dysautonomia at the age of 17. Alex has always been very active in sports and this condition has caused him to become extremely fatigued. He becomes very sluggish and its to a point where we constantly worry about him. We know...
    wotanwolf123 wotanwolf123 18-21 2 Responses Oct 17, 2012

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    Dysautonomia - Mercury Toxic and Reflux

    My problems started about 8 years ago with worsening reflux that led to tachycardia and very strange blood pressure problems. I was eventually diagnosed with dysautonomia. My reflux triggered a severe vagal nerve reaction, heart arrhythmias and sluggish digestion. I subsequently...
    Eudemis Eudemis 46-50 Nov 25, 2008

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    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 13-15, F 2 Responses Jul 12

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    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 16-17, F 1 Response Jul 12

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    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 16-17, F 2 Responses Dec 24, 2011

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    A Lifetime Of Confusion & Misunderstanding

    I will start my story with saying I have not seen a Dr nor have I been diagnosed YET as I have not had insurance. I can say with some certainty that when I do go to the Dr in 2 months he will find that I have Dysautonomia. That said this is my story...I awoke yesterday and got...
    EvyB2013 EvyB2013 41-45, F 1 Response Jun 6, 2013

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    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

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    Dysautonomia My Nightmare

    I was told I have Dysautonomia three and a half years ago It has changed my life to the point of know longer bng able to support myself and I have lost everything I had twice now and am going to loose everything I have again I have lost my husband due to him being a imagrant even...
    knightridertaxi knightridertaxi 51-55 2 Responses Jun 7, 2010

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    Dysautonomia

    Hello my name is bobby iv had dysautonomia since I was a kid I would get sick all the time for a long time dr bounced me around with all the different ideas of what it could be it got to the point were giving up seemed like the only option but 3 years ago I went to chop in...
    Bobbystofko Bobbystofko 18-21, M 1 Response Jul 12, 2013

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    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...
    Submissivekitten1982 Submissivekitten1982 31-35, F 2 Responses Jun 23, 2013

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    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 26-30 2 Responses Nov 25, 2008

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    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 41-45, F Sep 12, 2013

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    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 16-17, F 1 Response May 12

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    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

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    Related Experiences

    Update! There's hope guys - don't settle! Last time I posted it had been only one month since being cheated on - and I was a mess. Only thing I was sure of is that there was no way...
    imatulipinacup imatulipinacup 22-25, F 1 Response 9 hrs ago

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