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I Have Episodic Ataxia Syndrome

A Episodic Ataxia Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Episodic Ataxia Syndrome. You're not alone. 17 People

    What Made Me Who I Am Today

    I found love to quick and became wounded to the point where now im broken, I feel like there is always that empty space inside me. I didn't always feel this way. I found love early...To early. My first love broke my heart and ever since Ive been dieing on the inside a little more...
    DeborahFox DeborahFox 16-17, F Mar 12, 2012

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    Growing up with episodic ataxia

    Hi, I started getting dizzy spells when I was about 12, like many children I was unable to really explain my symptoms. After years of seeing specialists I had been diagnosed with epilepsy and in the end migraines. I decided to try again when I was mid twenties as my attacks were...
    Samspade78 Samspade78 31-35, M 2 Responses Dec 8, 2012

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    Trying to Find Someone Who Understands...

    About 4 years ago I started getting episodes of slurred speach and gait. Meeting new people was so exhausting, trying to explain to them what was wrong. "Hey are you having a stroke, a seizure? Whats wrong with you?" I was so exhausted just from what was...
    sailing286 sailing286 26-30 2 Responses Nov 20, 2008

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    Daily Struggle

    Hi every1 my name is leighton,im 28. I would like to share my story. I started with episodic ataxia when I were 11 years old but no doctors or specialist could find what were wrong with me. SORRY FOR MY BAD GRAMMA AND SPELLIN Now I will start my story. When I were 11 years...
    lwilky83 lwilky83 26-30 6 Responses Jan 22, 2012

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    Ellumsomeyearsago

     Hi,My Name is Michael I'm 57 yrs old.I had a stroke of the left cerebellum some years ago. It left me with Episodic Ataxia and I been dealing with it since. I've been taken out of the work force. I'm home mostly all day.My legs and hips are getting weaker and weaker so...
    bones100 bones100 56-60, M 2 Responses Sep 22, 2009

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    Invitation to Join Internaf

    Hi, My name is Michel Beaudet, I'm 47, have FA and live in Quebec, Canada. I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and there's also a website full of info at http://internaf.org   International Network...
    data2 data2 46-50 Dec 17, 2008

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    Related Experiences

    I have Kleine Levin Syndrome, but I prefer calling it the sleeping beauty syndrome, it makes me more comfortable. I live in a very small town where no one knows about this...
    briannanicolex briannanicolex 18-21, F Mar 13

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    I was known as the "Weirdo" during school. I have never had any real friends in my whole life until freshman year. Kids never wanted to play with me and called me "stupid" and...
    lollipopchick lollipopchick 22-25, F 7 Responses Mar 10

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    Hi my name is Edward, I was diagnosed with Russell Silver Syndrome when I was every young. I'm 18 now and about to go off to college. My whole life I have known about my...
    EdwardLayman EdwardLayman 18-21, M Mar 17

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    not me but my youngest son. we adopted him and his birth parents were drug and alcohol addicted. I am only just learning about this syndrome and the problems that my son will have...
    RobertaSunset RobertaSunset 36-40, F 22 hrs ago

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    I don't know if because of the other medications I HAVE to take or what but I use Restasis every day twice a day like the frickin commercial says. I also take Fish Oil and...
    steverick steverick 56-60, M 1 Response Mar 3

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    Not sure what to think, 20 years old, for almost two years, I will wake up in the early hours with this intense pain, sweating, and know that I need to get to the toilet. I will...
    Ashlearyan Ashlearyan 18-21, F Mar 7

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    I'm seeing a specialist soon as they suspect i have ehlers-danlos hypermobility type. I just wondered if everyone who has it has the stretchy skin as i only have it mildly on my...
    bloodandfire91 bloodandfire91 22-25, F Mar 18

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    and I was wondering how else did? What are some tics you have and how do you manage them?
    zodiac1888 zodiac1888 18-21, M 6 days ago

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    When I was a kid I basically thought I was an alien because I felt so different the first language i learned was german but i was going to school with children whose mother...
    loafemon1 loafemon1 18-21, F 2 Responses 2 days ago

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    All through my short life I have experienced the troubles of being an outcast, being told to simply "get involved" but that's not at all easy. Well not for me anyway. I can do...
    thedimone thedimone 13-15, F 2 Responses 20 hrs ago

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    Every couple of weeks I vomit atleast once every ten to twenty minutes for no less than a week at a time. Its totally debilitating. Any one else? I Would like to talk to someone...
    salcla salcla 26-30, F 1 hr ago

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    Indeedly--makes effective communication a ***** I gotta say. And then there's the difficulty to quickly adapt, and sometimes people say stuff in a way that you just don't get and...
    Cryx Cryx 16-17, F 1 Response Feb 28

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    Pues aquí estoy, me acaban de diagnosticar esto, y fue como una gran patada... llevo ya mucho tiempo con cosas: depresión, crónica, cansancio,fatiga, herpes zozter, problemas en...
    AleCogh AleCogh 51-55, F Mar 10

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    People say "oh your lucky, I wish I could stay at home and not work" and I just want to slap them. Id give anything to be able to work again. Yes I'm home but I can't even help...
    Besillybeyou Besillybeyou 26-30, F 2 Responses Mar 17

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    This is true, one thing about it is an immense obsession with limited things, I was diagnosed a LONG time ago, most likely after preschool. My obsession is mental disorders, Two...
    deanratzloff deanratzloff 13-15 2 Responses Mar 19

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    anyone here from the Uk who has it? finding the nhs not that helpful ty
    mysmugcat mysmugcat 41-45, F 22 hrs ago

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    I have polycystic ovary syndrome. It mean my ovaries produce little and irregular eggs. This also means I miscarry, a lot. I’ve lost 7 babies and I am 21. You want to know why I...
    dakota4oneday dakota4oneday 18-21, F 5 Responses 5 days ago

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    My cousin, who is a doctor, talked to me a few days ago about my constant tiredness. The thing is I go to bed before midnight, I don't even remember when was the last time I made...
    delusi0nal delusi0nal 18-21, F 2 days ago

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    I am Hispanic, female, 49 years old. On September 2012 started with progressive serious problems in my health. Weakness on my extremities, drastic loss of weight , foot drop...
    Matty65 Matty65 46-50, F 5 hrs ago

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    Hi call me Sean. I'm 21 years of age and I have Poland syndrome. I am missing my left pec muscle and it haunts me practically everyday. I feel as if I have I've become alittle bit...
    Life1sinteresting Life1sinteresting 18-21, M 2 Responses Feb 28

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    Don't give up; there is hope. I'm 19 and when I was 16, I got my first symptoms of rumination syndrome. Like a lot of others, I thought it was a 24 hour sick bug but it just...
    alexxblanch alexxblanch 18-21, F Mar 4

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    Hi I am a 20 year old girl in the uk. I was diagnosed with mosaic turners when I was born but I've never even thought about the condition that I have, it's never really effected me...
    MissLisac MissLisac 18-21, F 3 Responses Feb 27

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    just wondering about others experiences with POTS syndrome. I have lost all strength in my legs and im in a nursing home. Therapist says ill be in a wheelchair for a month. was in...
    Jzimo Jzimo 22-25, M Mar 1

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    Pretty much self explanatory. Additional info for the clueless: http://www.urbandictionary.com/define.php?term=White+Knight+Syndrome
    aberrations aberrations 22-25, M Mar 1

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    i first found out i have turner syndrome when i was a babe my ma discovered i was on injection to help my growth i attend hospital evey six months but they have me in a adults...
    Atale Atale 18-21, F Mar 4

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    As a 16 year old girl, it's been a struggle to be a girl with polands syndrome, but luckily have had a great support system (both family and friends). Recently I have gotten my...
    hp6688 hp6688 18-21, F 1 Response Mar 7

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    Husband has Aspergers, delusional worthlessness syndrome, anxiety, and major depression disorder. Any suggestions?
    enoughrollercoaster enoughrollercoaster 41-45, F 3 Responses Mar 10

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    I have Poland syndrome since I was born. I'm missing my right pec. I Struggled though school and when I left I sighed strait up for the army. I have found out that it is much...
    benheggarty benheggarty 16-17, M Mar 15

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    I strongly suspect that I have 47,XXY Kleinfelter Syndrome. I was diagnosed with Hypogonadism two weeks ago. I'm 38. Previously I thought my issues were solely due to varicoceles...
    mjxxy mjxxy 36-40, M Mar 15

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    I got diagnosed with Asperger Syndrome in grade 7.
    SithLordofCanada97 SithLordofCanada97 16-17, M Mar 18

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    I am 13 years old. I have been sick for around 10 months. It started as what appeared to be a stomach bug but has continued for months and months. They removed my gallbladder and...
    deleted deleted 26-30 3 days ago

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    I am 31 years old female and was diagnosed Guillain-Barré syndrome. I felt tingling weakness in my right leg and in few hours it started spreading to lower limbs and I realised...
    amishah154 amishah154 31-35, F 3 days ago

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    im self diagnosed i truly feel that i have it
    TomboyBeth TomboyBeth 13-15, F 2 Responses Mar 1

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    I'm looking for a little insight on Pica. I myself do not believe I have Pica but I believe my three year-old daughter does. Literally EVERYTHING she touches she tries to eat and...
    kasirae3192 kasirae3192 22-25, F 1 Response Mar 2

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    I have just ran across DSPS today in researching and trying to find out what exactly has been wrong with me for most of my life. I've classified myself as a night owl since I was...
    CrowWoman CrowWoman 51-55, F 2 Responses Mar 2

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    I work in customer service (phone and email). I have been told before that I put too much pressure on myself, and I agree that I do. But I just don't know how NOT to. Well...