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

    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

    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

    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

    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

    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, 2014

    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

    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

    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

    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

    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, 2014

    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 41-45, F 3 Responses Sep 30, 2014

    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

    Related Experiences

    Hello, My name is Mathilda Panzarella i have 17 years old and i'm a french girl so excuse me for my bad english.. I sign up on this social network, because since a long time, i...
    PanzarellaMathilda PanzarellaMathilda 16-17, F Jan 30

    Your Response

    Cancel
    Hello: My daughter has Parkes Weber Syndrome. I'm wondering if anyone in this group is from Ontario?
    Momofgirl Momofgirl 41-45, F Feb 5

    Your Response

    Cancel
    One year ago is when I started getting sick. It's started out as maybe an hour in the morning I would feel extremely nauseous and most of the time I would get sick and then go on...
    kateyrose98 kateyrose98 16-17, F Feb 9

    Your Response

    Cancel
    Asperger's is like a curse to me. I didn't ask to have panic attacks in cluttered noises. I didn't ask to not have a normal social. I CERTAINLY didn't ask to drag my family and...
    msvlogwars msvlogwars 16-17, F 2 Responses Jan 29

    Your Response

    Cancel
    my name is Ciara and I'm 19 and I am currently in the hospital post laminectomy. I have had back pain for about a year now. I had an inflamed SI joint that I recieved 3 steroid...
    cjacobs34 cjacobs34 18-21, F 2 Responses Jan 30

    Your Response

    Cancel
    I have it. Mayve yes or maybe no. I dont know but there are signs. Although I wasnt diagnosed coz going to a psychiatrist or something has a negative stigma in my place. When I was...
    WifeOfVegeta WifeOfVegeta 26-30, F 1 Response Feb 4

    Your Response

    Cancel
    Dear CFS: **** you! I hate not being able to think clearly. I hate not being able to play with my kids Saturday *and* Sunday. Instead, I have to pick one day and then use the...
    LookingForIt987 LookingForIt987 41-45, M 2 Responses Feb 11

    Your Response

    Cancel
    Hi, I'm 21. I slipped a disc in December 2014. I had CES symptoms for 2 weeks before having my disc removed as I was on a cruise ship. I guess I'm lucky as I can walk normally with...
    sdavis313 sdavis313 18-21, F 1 Response Feb 15

    Your Response

    Cancel
    Hi everyone! So I'll be posting my full story later but just wanted to do a short version. I'm 17 and was diagnosed in October 2014, they found out it was BCS after only being...
    Abbyrk Abbyrk 16-17, F 1 Response Feb 15

    Your Response

    Cancel
    I can't say 100% that I have this (just 98%) I wish I knew how to get better because I also have pseudotumor cerebri and the two are going in circles with each other right now...
    lu7998 lu7998 31-35, F Feb 16

    Your Response

    Cancel
    Hi I'm 24 years old and currently being diagnosed with pts. 5 months ago I had my first symptom which came out of no where and was severe! I have had sooo many tests as you would...
    megzeee megzeee 22-25, F 1 Response Feb 18

    Your Response

    Cancel
    As an Aspie, I get very tired having to socialize and talk to people. I'm often accused of being aloof, standoffish, or downright rude. It's not my intention to be mean or...
    Sorgun Sorgun 26-30, M 3 Responses 6 days ago

    Your Response

    Cancel
    I was born weighing two pounds and couldn't eat on my own. I wasn't eating food of any kind and was diagnosed with RSS when i was an infant. At first i was put on a N G tube (a...
    RTKDcarmichael1stdegree RTKDcarmichael1stdegree 18-21, M 1 Response 2 days ago

    Your Response

    Cancel
    Have any of you kept up with news recently? Apparently, there are studies now that show this is a disease and the medical community will start treating it as a disease. Looks like...
    awesomesauce2 awesomesauce2 22-25, M 3 Responses 2 days ago

    Your Response

    Cancel
    Ugh. It's nearly midnight and my legs are still twitching and jumping. I've taken the meds, done all my stretches, taken aspirin, rolled on the foam roller. I'm so sleepy. It...
    Deedle623 Deedle623 51-55, F 3 Responses Jan 29

    Your Response

    Cancel
    Yes, and I've learned many ways about how to adapt to and around NTs. Contact me if you would like. :)
    wuiop wuiop 31-35, M 1 Response Jan 29

    Your Response

    Cancel
    social norms always confuses me. Still normal though. :)
    WifeOfVegeta WifeOfVegeta 26-30, F 1 Response Feb 1

    Your Response

    Cancel
    It's so tough to get exercise. I want to exercise so much...but I can't because it hurts and my joints pop every time i do:(
    Enpfor12 Enpfor12 18-21, F Feb 10

    Your Response

    Cancel
    i am aspie and i am proud of it. it makes me who i am and ucan all say like it makes some things i know i was diagnosed last year with this and high functioning augism and this is...
    prodemonz prodemonz 13-15, M 3 Responses 4 days ago

    Your Response

    Cancel
    My sister does, and I'm that sibling. I have asperger's syndrome, a form of high-functioning autism. When I was younger I would get angry at the littlest things. I remember...
    ftmFreddy ftmFreddy 18-21, T 1 Response Feb 9

    Your Response

    Cancel
    I'm sorry...did I miss something while I was away? Did the profession of "hunting", as you call it, turn into some freaky Jehovah's-witnesses-meets-Girl-Scouts? Because, apparently...
    DeannaJo DeannaJo 26-30, F 5 Responses Jan 31

    Your Response

    Cancel
    Not so much, not anymore. I will be again, someday. As it's a fundamental mechanism of nature, hunting is morally beyond reproach. However, the way people do it now, and the...
    Unbeholden Unbeholden 18-21, M Feb 9

    Your Response

    Cancel
    I am 16 years old and I have poland syndrome. I was diagnosed when I was old enough to sit up by myself, I have coped with this for a long time, I was promised my reconstructive...
    Blondiee137 Blondiee137 16-17, F 2 Responses Feb 1

    Your Response

    Cancel
    Quite a few, actually. Let's see: Velo Cardio Facial Syndrome Asperger's syndrome Depression Obsessive Compulsive Disorder That's me.
    ftmFreddy ftmFreddy 18-21, T 5 Responses Feb 9

    Your Response

    Cancel
    The ever present question, are we being manipulated? If you say, well yeah, duh. Then you ask yourself the next question, who is manipulating us? Welcome to the mind of all tin...
    everydayisagoodone everydayisagoodone 31-35 2 Responses Feb 13

    Your Response

    Cancel
    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 1 Response 1 day ago

    Your Response

    Cancel
    I wish but are there any Australian hunters here?
    tangledweb94 tangledweb94 18-21, M Jan 28

    Your Response

    Cancel
    I am holding back tears. I'm so happy. So many good things happening for me. Lost 15 pounds. Decided to weigh myself yesterday and im 15 pounds lighter from my last weigh in...
    HigherCalling HigherCalling 26-30, F 1 Response Jan 30

    Your Response

    Cancel
    I'm 22years old want to know if someone will teach me how to become an hunter
    DylanMartin21 DylanMartin21 22-25, M 4 Responses Feb 6

    Your Response

    Cancel
    Taking the little guy out on his 1st hunting trip!
    Donna717 Donna717 36-40, F 4 Responses Feb 7

    Your Response

    Cancel
    February is always a bad month for TV sports. Football is gone, basketball is plodding along in the annual midseason doldrums, and baseball is not even mentioned. Hunter S...
    jml2000 jml2000 56-60, M Feb 7

    Your Response

    Cancel
    So I want to become a demon hunter and I have been training myself for a while now. Where should I start and how?
    ItsjustKaite ItsjustKaite 13-15, F Feb 16

    Your Response

    Cancel
    hunting a bigfoot/skinwalker...herd more about in native amer folk lore.. any suggestions on how to take it down?
    winchester52 winchester52 22-25, M 1 Response 5 days ago

    Your Response

    Cancel
    I have been fascinated with the possibility of spirits/ghosts all my life. I am now gathering tools to aid in the hunt. I have gathered a electromagnetic measuring devise...
    4trancefun 4trancefun 56-60, M 2 days ago

    Your Response

    Cancel
    Can I ask some questions to real supernatural hunters?
    Lerione Lerione 18-21, F 18 hrs ago