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

    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

    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

    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

    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

    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

    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

    Related Experiences

    My attacks started 6yrs ago,woke up one morning and felt really sick,like a virus but it kept coming back every other day. I feel it was triggered by stress and a tender tum as I...
    SoothingSoozie SoothingSoozie
    41-45, F
    1 Response Apr 19
    My 3rd grader has struggled in school from Headstart up to this very point. I noticed delays in his speech right before two years old. I expressed my concerns to his pediatrician...
    Vette601 Vette601
    36-40, F
    Apr 19
    Well my story is a lot like some of yours, I started young on comet and sometimes dirt from my backyard... I like to eat things with gritty texture for most of my childhood and...
    BadMomKira BadMomKira
    22-25, F
    1 Response Apr 19
    Hey.. My name is Thomas and i have Poland's syndome. I was born in 1970 and didn't know what it even was til i was around 28. I had a really hard time growing up. Kids can be very...
    tommymac70 tommymac70
    41-45, M
    Apr 17
    My symptoms of WPW started about the time that I was in the fifth grade. One day I was home and I felt really dizzy, to the point that I had turned white all over and felt as if I...
    adrienleigh adrienleigh
    13-15, F
    Apr 17
    Hi, I was just diagnosed with SMA Syndrome after 10 years of my stomach being sick and multiple hospitalizations for being unable to eat or drink. I currently have a j tube after...
    jaclynleigh6 jaclynleigh6
    22-25, F
    Apr 17
    I am a 23 year old female who suffers from Poland's Syndrome. It's actually good to know there are some people out there who can relate to all the daily problems PS creates. We...
    uocgreece uocgreece
    22-25, F
    Apr 17
    I am 19 now, almost 20... I haven't been on here for a few years, but I think I'll give it a go. My parents and I thought I had Chronic Fatigue Syndrome for 4 years before...
    Invisibleninja12 Invisibleninja12
    18-21, F
    Apr 17
    A description of today's episode: I went home from work vomiting today. This time I was actually driving and puking at one point on my way home. Thanks to 'Murica for plastic...
    Doomflower Doomflower
    31-35, F
    3 Responses Apr 16
    Hello I'm Michelle but call me kris.I am from the USA.I suffer from bipolar as well as anxiety.
    deleted deleted
    26-30
    2 Responses Apr 14
    Hi my name is Sherrie and i was diagnosed as a teenager. I am 58 years old now and i have whst i would call a good life. I am married for 30 years and we have adopted 3 children...
    Sherrie50 Sherrie50
    56-60
    Apr 13
    I'm pretty sure being aspie has.it has its ups and downs.It messes up relationships so badly for me.
    deleted deleted
    26-30
    3 Responses Apr 11
    This is my story. It is long, but I hope you all can relate to it. A year ago I went on a catholic retreat called Kairos and I gave a speech on my ideals and how to find them and...
    cmom96 cmom96
    18-21, F
    Apr 9
    So... I make straight A's, never get in trouble, win school awards and awards in general. I'm on a scholarship team and I'm eligible for many other ones... I do all the house work...
    deleted deleted
    26-30
    1 Response Apr 9
    I'm so hurt that I can't even read all the experiences because my tears are in the way
    deleted deleted
    26-30
    2 Responses Apr 8
    My boyfriend hasn't been diagnosed or anything, but I was watching a programme about Asberger's and something resonated with me. If he does have it, I'm sure it's only mild, but it...
    anniechan anniechan
    18-21, F
    2 Responses Apr 7
    I was born with PruneBelly Syndrome (lack of abdominal muscles) I had some corrective surgery at age three and the dr cut through and removed my navel, so I don't really remember...
    Jmacaroon Jmacaroon
    51-55, F
    Apr 7
    30 reasons i love my Aspie (or just a individual person wich i was lucky to met) This is my story, and Just mine. U dont need to relate. Because every person is different, with...
    deleted deleted
    26-30
    Apr 6
    i hate that i can't communicate effectively. i know that my husband gets frustrated to the point of disgust. i just assume not talk to anyone. i have chronic pain and fatigue to...
    LITVET LITVET
    41-45, F
    1 Response Apr 5
    I am 50 years old and completely paralysed by my fear of v*. My husband and I went to a party last week and by the evening after, 10 of us that went were sick. Some virus must...
    Whitelilyrose Whitelilyrose
    46-50
    1 Response Apr 3
    Armen Berjikly could have had the decency to make sure his brainchild (ep) didn't decay & drip through the floorboard.... even a rock solid foundation has gaps
    deleted deleted
    26-30
    1 Response Apr 3
    Does anyone else constantly try to hide their trich? I feel like no one understands and my parents don't believe it's a real disorder. I have basically no eyelashes and I buy eye...
    kellyu22 kellyu22
    13-15, F
    2 Responses Apr 3
    I don't have any anymore thank God. I used to have them as a kid and they were scary to me that I thought it would happen in real life. I had them for weeks about my neighbor...
    Niceguy890 Niceguy890
    26-30, M
    Apr 3
    Does anyone have all these symptoms for 3 week? And only one week of feeling normal? Pain areas: in the breast, abdomen, back, joints, muscles, pelvis Gastrointestinal...
    mnutz mnutz
    36-40, F
    Apr 3
    I have a 13-year-old girl with thick curly hair. I still brush her hair because it always gets in knots. For a long time, she has wanted to just cut it off. But I don't want to let...
    imAddison imAddison
    13-15, F
    Apr 3
    Well somi have put on more than just a few pounds apparentlyI think I am overweight but not sure.someone message me im soooo bored 
    kendallmiller kendallmiller
    18-21, F
    2 Responses Apr 3
    Does anyone have anxiety while driving? Can you tell me what you do to calm yourself while driving. I have a long drive to do. so anything will help.
    JustWantBeauty JustWantBeauty
    18-21, F
    6 Responses Apr 2
    EP is ending, sadly. But I want to "celebrate" having 720+ experiences, 35400+ profile views and 10,000+ Circle friends. Yes, I'm one of few maybe many who cares about these...
    LeahLovee LeahLovee
    70+, F
    9 Responses Apr 2
    My sister who is only 16 has come out to my family as gender fluid a few months ago, and has recently told my mom that in the future she wants to take hormones to become a man. She...
    G1121 G1121
    22-25, F
    Apr 2
    I have updated my blog! See more in the comments below:
    dWizz808 dWizz808
    41-45, M
    2 Responses Apr 2
    Does anyone else have imaginary friends? :) If so, kick me and join my new group for girls with imaginary friends :) But here are the rules: - you have to be a Christian -you can...
    ImaginaryFriends4Ever ImaginaryFriends4Ever
    16-17, F
    1 Response Apr 2
    I have updated my blog! See more in the comments below:
    dWizz808 dWizz808
    41-45, M
    1 Response Apr 2
    So this "Experience Again" website is counting down until it goes live. I entered my email address and it kind of seems like its a new version of EP but I can't tell for sure. I...
    SRayne SRayne
    51-55, M
    7 Responses Apr 2
    i have been scared of holes since primary school it was a film i watched where the man gets lots of holes in his hands eversince my insides feel utterly revolted and just completly...
    sarah1084 sarah1084
    31-35, F
    Apr 2
    so I am writing for my book chronicles of sam volume 2. it is a compilation of short stories based on paranormal experiances that my family and I have had in our life when all of a...
    Sorellana Sorellana
    26-30
    2 Responses Apr 2
    For my story, I was always a bit bigger than everyone around me. My family is all pretty fat, but I'm the largest kid (despite being the youngest) and I outweigh my mom. I broke my...
    oliviayay oliviayay
    18-21, F
    Apr 2
    46. Ever since I said I wanted to be friends. I haven't heard from him. Not a "hi".. Nothing. I'm a little hurt to be honest. But I know he's speaking to 5-10 other girls. I don't...
    UnicornsOfHope UnicornsOfHope
    26-30
    1 Response Apr 2
    a lot of guys are so willing to have sex with you when they are drunk but wouldn't give you the time of day if they are sober
    margie215 margie215
    46-50, F
    10 Responses Apr 2
    Okay so am I crazy for this? Well I'm a person who's quiet, I do have a temper on me. Yet I'm still trying to find myself. I have a big imagination especially when I'm trying to...
    bchfdj bchfdj
    16-17, F
    Apr 2
    My life has been full of painful experiences. No one understands me. Every single day is like I am holding lot's of burden which is out of my capacity. I don't understand how to...
    Realkitty Realkitty
    22-25, F
    Apr 2
    Courage isn't having the strength to go on - it is going on when you don't have strength.
    Wantsfortomorrow Wantsfortomorrow
    41-45, F
    2 Responses Apr 2
    We were split up after mum died; sent to different foster homes. We both had bad experiences with our mother's partner so had to be. I continued to get abused, but my sister was...
    Ejoyh97 Ejoyh97
    18-21, F
    1 Response Apr 2
    I thought I was one of the few at 19, but I enjoy reading how many others share my condition. It is interesting to digest the spread of feelings on the matter. Some are keeping it...
    9minute 9minute
    18-21, M
    4 Responses Apr 2
    Well I went to Reno and bowled in the USBC Open Championships; actually just rolled the ball down the lane. The was one of the few times that I did not drink while bowling; trying...
    deleted deleted
    26-30
    1 Response Apr 2
    That's the main reason why I don't really have thousands of followers on my Instagram, Twitter, Facebook or anything else. It is not because I am a fake user. No! Not at all!I only...
    CoffeeTimeNow CoffeeTimeNow
    22-25, F
    Apr 2
    DON'T RESPOND WITHOUT READING THE WHOLE THING!!!!!! I wish I had at least one friend, outside of online friends, that I could talk to about personal things. I don't know where I...
    DexieAnderson DexieAnderson
    16-17, M
    1 Response Apr 2
    Fighting personality- Sapphire Naughty personality- Jade Protective personality- Jackson Depressed personality- Red Dark personality- Dal Funny personality- Chester Small...
    wolftherianGrace wolftherianGrace
    13-15, F
    Apr 2
    I have a crush on someone who's waaaaayy out of my league. And here I'm going to call him Quil. I've never even met him before. When I think about him, I picture him out with the...
    yoonAlexandra yoonAlexandra
    18-21, F
    1 Response Apr 2
    I'm going to miss this website. This site was a part of my personal growth. For example, I learned how to describe myself by browsing and joining groups. I've learned a lot...
    RoyalTeee RoyalTeee
    26-30, F
    1 Response Apr 2
    So tempted to message you tonight babe, but what's the use? I know there is no way you'll even think of talking to me. And based on current circumstances, who could blame you? In...
    jackflash3300 jackflash3300
    36-40, M
    1 Response Apr 2
    So I haven't been on this app for a while and I just wanted to thank all of the people who were here for me during my tough times, things are starting to get better for me, I still...
    Alicolette Alicolette
    16-17, F
    Apr 2
    ... like, what the hell is WRONG with people who KNOW the rules of the site they're on, INSIST on breaking those rules, and then COMPLAIN about it when their photo or story is...
    BSTisapain BSTisapain
    46-50, F
    1 Response Apr 2
    Especially when my best friend is over a year younger than me and married, it's disappointing to be nearly 26 and the closest I've come to girls is in school dance classes in PE...
    Nexile90 Nexile90
    22-25, M
    Apr 2
    Yesterday I almost ruined my friendship with my best friend. But we patched it all up. But I feel like he's still really hurt. A lot of ppl have been hurting him recently and I...
    ThatWeirdGayKid ThatWeirdGayKid
    22-25, M
    1 Response Apr 2
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