Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Have Ramsay Hunt Syndrome

A Ramsay Hunt Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Ramsay Hunt Syndrome. You're not alone. 29 People

    A Year On And Finally Diagnosed Any Advice!

    I am a 22 year old student who has now been 'officially' diagnosed with Ramsay Hunt Syndrome and I don't really know where to start or how to start moving forward. About a year ago I was at the time diagnosed with Bell's Palsy however I kept having more and more symptoms that...
    LittleContender LittleContender 22-25, F 5 Responses May 12, 2013

    Your Response

    Cancel

    Ramsay Hunt Syndrome Life

    I've had what is finally diagnosed as Chronic Ramsay Hunt Syndrome (ll) for 22 years. Maybe more. It is a very challenging disease. Not many people have ever heard of it...Doctors included. It is painful and debilitating.
    windrivermaiden windrivermaiden 41-45 5 Responses Mar 9, 2011

    Your Response

    Cancel

    Recently Diagonosed Rhs..any Advice...i'm Miserable!!!

    I went to the Emergency Room back in January and was misdiagnosed with an ear infection...I was able to somewhat function, Drive, work, etc untill very recently I went to my GP and she told me I Have RHS. She found shingles in my ear, prescribed me steriods, anti virals and...
    monicanivens monicanivens 26-30 Mar 2, 2012

    Your Response

    Cancel

    The worse thing is the paralysis

    and not being able to be expressive anymore with my face. I used to have a lovely smile and now it's gone. I hope that it's temporary...It's been about a week and the paralysis is worse.
    istajam istajam 36-40, F 3 Responses Sep 30

    Your Response

    Cancel

    Secuelas Del Síndrome De Ramsay-hunt

    Hola a todos: Primero les pido disculpas por escribir en español, pueden usar Google Translator para entender. Les cuento que en el año 2005 fui diagnosticado con una Bruselosis, que me dejó a muy mal traer, perdí la audición de mi oído derecho totalmente y el 96% de mi o...
    sladordrav sladordrav 41-45, M 1 Response Dec 24, 2012

    Your Response

    Cancel

    Ramsey Hunt Cougar

    i am shocked at my doctors who have told me its nothing it will get better,  there is nothing wrong with your tongue.  thanks to an aquaintance i was told of this disease and did a lot of reading and ready to go and rip my doctors head off i can tell you.    i live in Orbost...
    lorrainerobertson2 lorrainerobertson2 51-55 3 Responses Jun 5, 2011

    Your Response

    Cancel

    Ramsay Hunt Syndrome.

    Abouth three months ago I had a lot of pain in my mouth, I came out off the Night shift, went to bed and woke up a few hour later with halve my face paralised. At first it was diagnosed as Bells Palsy, but now it is Ramsay Hunt. It changes my way of life. I still have to work for...
    renzey renzey 61-65, M 2 Responses Oct 27, 2011

    Your Response

    Cancel

    The Rhs Rollercoaster

    A healthy 27 year old I'd just moved to London from Australia. I was working long hours at a pub, partying a little too hard and took a one week nanny job in Switzerland even though I was pretty run down and tired. I went swimming in the Rhine river and on my return to London had...
    cjuk2010 cjuk2010 26-30 3 Responses Apr 10, 2012

    Your Response

    Cancel

    Newley Diagnosed Rhs

    ...so I'm 24 and feel awful. I was diagnosed with shingles lastweek, and then started to experience lots of things I thought I was making up. Tingling scalp, one side of my throat was "not there" hard to swallow. Pain in my ear neck and jaw all on the left side. Eye dryness and...
    Emmarawlings46 Emmarawlings46 22-25 4 Responses Jun 26, 2011

    Your Response

    Cancel

    WOW.... Reading this about RHS2 is

    so me. I was 34yrs old when I was diagnosed. I did a steroid pack for my allergies and by the 3rd day bells palsy took the face. Then by the 4th day it took the left side of the body. They found it through my spinal tap. (I was 8yrs old with my 1st case of palsy and 3x's again...
    Tonya73 Tonya73 41-45, F May 2

    Your Response

    Cancel

    Aimee's Ramsey Hunt Story

    In February 2012, I really started not to feel myself, just feeling abit down and couldn't seem to snap out of it! This was really not like me, I kept brushing it off but I just couldn't seem to shift it. Eventually I got an ear infection so I nipped off to the doctors and got...
    Aimeemee28 Aimeemee28 26-30, F 1 Response Nov 13, 2013

    Your Response

    Cancel

    It has been seven weeks

    since I woke with severe ear pain. I had a few weeks of dizziness and what seem to feel like water in my ear before that. I went to ER later that day because my jaw area went numb, and my left eye felt heavy and tired. The ER doctor asked about bumps on my ear, and never knowing...
    ksrooney ksrooney 56-60, F 2 Responses Jul 1

    Your Response

    Cancel

    Related Experiences

    I'm so glad I found this. Many of your stories are so similar to mine. I've seen twenty six doctors, having been diagnosed with fibromyalga, chronic migraines, osteoarthritis and...
    jsxburt jsxburt 46-50, F 2 days ago

    Your Response

    Cancel
    Hey All, I'm a 28 year old female with what I think is CVS. Every few months I am awoken in the middle of the night with the worst stomach ache in the centre of my abdomen and I...
    starjj starjj 26-30, F 1 Response Dec 7

    Your Response

    Cancel
    I was diagnosed with HAS a few days ago - The initial cause was that I am experiencing eye issues and saw an ophthalmologist who then referred me to a neurologist who made the...
    barbarasayshi barbarasayshi 41-45, F 1 Response Dec 13

    Your Response

    Cancel
    So many people without it have no idea of the pain it brings along. Today, I'm meeting with the Lender for our new house, and I can't control the neck tics and I'm hurting on a 8...
    jeepers92 jeepers92 41-45, M 2 Responses Nov 22

    Your Response

    Cancel
    I think I have Aspergers, I love arts so much I think it's the only life where I want to be, I love seeing great murals an architect designs, I can get obsessed and lost when I...
    perennialsorrows perennialsorrows 31-35, F 4 Responses Nov 27

    Your Response

    Cancel
    I can't meet people's gazes. I have single minded focus on certain things. I am clumsy (found a way to help that.) I usually end a conversation just because I can't continue it, I...
    Ditum Ditum 18-21, M Nov 28

    Your Response

    Cancel
    I thought I needed a good vent so here goes. Sorry if there is TMI. Every since I started my period when I was 11 I would be in excruciating pain, I would have to have time off...
    xxkerry1990xx xxkerry1990xx 22-25, F 1 Response Dec 2

    Your Response

    Cancel
    A few years ago, I moved from the east coast of the United States to the southwest to go back to university after taking a year long break from school, and I didn't know a single...
    uglyhands uglyhands 22-25, F Dec 4

    Your Response

    Cancel
    I was finally diagnosed as being on the spectrum on November 2nd, 2014. The test used was the Gilliam Asperger's Disorder Scale and it was a three hour test done over three visits...
    lyricalongings lyricalongings 31-35, F 1 Response Dec 7

    Your Response

    Cancel
    The doctor finally told me I have it a year ago but so far no one believes it. Looking to meet others who would like to talk about it.
    keravon keravon 51-55, M 1 Response Dec 8

    Your Response

    Cancel
    I've tried to use it to my advantage. I'm gifted with writing and I believe Aspergers along with an abusive home environment help to give me that as well as other skills. Being...
    KnaisGuy KnaisGuy 22-25, M 3 Responses Dec 8

    Your Response

    Cancel
    This **** is no joke. The pain is pretty severe. I plan on having surgery, but I have to wait till after Christmas.
    Xplictt Xplictt 22-25, M Dec 11

    Your Response

    Cancel
    I've struggled all my life socially. I never made a single friend until I turned 14. I was always "that weird, quiet girl." People were cruel to me and I could never figure out why...
    SecretGaygent SecretGaygent 22-25, F 5 Responses a week ago

    Your Response

    Cancel
    My daughter has BCS. She's 6yrs old now. She was diagnosed when she was 18 months old. Her body was shunting itself when I was pregnant with her. She's currently on Coumadin. She...
    annagracesmom annagracesmom 41-45, F Nov 30

    Your Response

    Cancel
    Has anyone else read the Michael Vey series of books. Kind of Awesome that TS has a champion. :)
    jeepers92 jeepers92 41-45, M Dec 10

    Your Response

    Cancel
    The last time I was in hospital I remember a man being seen by a physician, the man was covered in blood. He had an entire roll of loo paper resting under his nose that was blood...
    heyitsabike heyitsabike 31-35, F 1 Response 5 hrs ago

    Your Response

    Cancel
    I have a twin brother that survived Guillain-Barré Syndrome or GBS. He was diagnosed at the age of six and it took a year for him to get treatment and get over the disorder. GBS...
    tinytornado95 tinytornado95 18-21, F 1 Response Nov 26

    Your Response

    Cancel
    so this is from the end of my freshman year, it was part of an assignment, but its all mine. my creativity. so here it is: As Juliet sees her body lying on the ground lifeless...
    LawrenceGirl16 LawrenceGirl16 16-17, F Nov 28

    Your Response

    Cancel
    I got diagnosed when I was 3 and I have it in both eyes. Just a few months before that I had a brain tumor. I can not begin to image what kind of stress this put my parents under...
    macyl macyl 18-21, F Nov 30

    Your Response

    Cancel
    I have Hypermobility Ehlers Danlos Syndrome (EDS). I also have Postural Orthostatic Tachycardia Syndrome/dysautonomia (POTS). Ehlers Danlos syndrome is a connective tissue...
    jahoz jahoz 41-45 a week ago

    Your Response

    Cancel
    Hunters are growing in my area. I don't know why; me and my pack don't kill people (Hunters included) and nobody has Shifted in front of civilians. I'm terrified; they know my name...
    Chaos42249 Chaos42249 13-15 1 Response Nov 24

    Your Response

    Cancel
    My name is, well, I'll spare real names for the sake of anonymity. We'll call me A. This guy, who I've known for a while but haven't been in contact with much, suddenly wanted to...
    bootsandbooks bootsandbooks 22-25 a week ago

    Your Response

    Cancel
    Well I wouldn't say mighty but it is the only " I am a hunter experience I could find" anyway hunting has been a big part in my family's life. We hunt for the meat so we can make...
    Zoekosmopoulos Zoekosmopoulos 18-21, F 1 Response 1 day ago

    Your Response

    Cancel
    I hunt Deer Hogs Pigs Bears I never hunt rabbits I luv them too much And I will NEVER EVER hunt wolves The pic is my first deer I ever killed
    RainbowWolf13 RainbowWolf13 13-15, F 6 Responses Nov 22

    Your Response

    Cancel
    I am well acquainted with how disruptive motherhood can be to a woman's personal and professional autonomy. I will not be waxing poetic about it either (today of all days). I too...
    Tannasheart Tannasheart 46-50, F 2 Responses 4 days ago

    Your Response

    Cancel
    I've lived in many lives...and every time I lived for the hunt...by my hand many have fallen...im just here to offer advice for new hunters and maybe even hunt with a few
    SirAbelardVanHelsing SirAbelardVanHelsing 18-21, M Dec 2

    Your Response

    Cancel
    I was diagnosed with Duane Syndrome in my right eye when I was just a baby, when my Dad noticed I couldn't move my eye. From a very early age I remember being in the hospital...
    baaraah baaraah 18-21, F Dec 5

    Your Response

    Cancel
    I found out I had Duane Syndrome in both of my eyes when I was around 6 years old but it only started to seriously impact my life when I was 12. From what I remember my vision used...
    Ashleyc97 Ashleyc97 16-17, M Dec 12

    Your Response

    Cancel
    Hi there. Since I was born I have been diagnosed with marfan syndrome. Little did I know, being an infant, I was on the verge of having many issues in life. They may not have been...
    ChrisSFTY ChrisSFTY 18-21, M 6 days ago

    Your Response

    Cancel
    i think Asperger Syndrome is very similar to Obssesive Compulsive Personality Disorder...
    Hanahbee Hanahbee 31-35, F 2 Responses 6 days ago

    Your Response

    Cancel
    Yea, just as it says, I have Aspergers Syndrome. It's tough at times. Yea, I have a great understanding of logic but the fact I don't understand emotions. Nor do I understand and...
    Tnert357 Tnert357 18-21, M 2 Responses 1 day ago

    Your Response

    Cancel
    Hello my name is johnny.......i was born with goldenhar syndrome.......i was born in mexico city where doctors their said that theirs nothing they can do.....so my lovely mother...
    johnnycash4814 johnnycash4814 26-30, M 1 Response 15 hrs ago

    Your Response

    Cancel
    Does any one else have that friend who thinks killing deer or any other game is wrong bc i hunt to put food on my table
    Youngguy14 Youngguy14 13-15, M Nov 22

    Your Response

    Cancel
    I've Never Been But I'd Love To Go Hunting Some Day.
    IWufflesDemi IWufflesDemi 13-15, F Nov 24

    Your Response

    Cancel
    Me and my friend are about to go hunting and I've never been before. He taught me how to shoot for a month or so and I've been waiting to go with him for a while.
    SarahTWD SarahTWD 13-15, F Nov 29