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

    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

    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

    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

    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 41-45, F 3 Responses Sep 30, 2014

    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, 2014

    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

    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

    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

    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.

    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

    Related Experiences

    Ok so this is important for anyone who has CFS or anything like it. I have had this illness for 4 1/2 years now, and I've been to a fair number of doctors. But it took awhile to...
    Invisibleninja12 Invisibleninja12 18-21, F 1 Response Jan 14

    Your Response

    Cancel
    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 6 hrs ago

    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 1 Response 13 hrs ago

    Your Response

    Cancel
    I'm a 21 year old female with possible hypermobility syndrome/EDS Type 3 or fibromyalgia. My mum has hypermobile joints but hasn't been diagnosed with HMS/EDS but has been...
    Kari9349 Kari9349 18-21, F Jan 1

    Your Response

    Cancel
    A new information website has been developed for stiff-person syndrome to educate, empower, and advocate. www.thetinman.org
    TheTinManOrg TheTinManOrg 51-55 Jan 2

    Your Response

    Cancel
    My partner was diagnosed with Stiff Person Syndrome in July 2014. Due to my own ignorance about the illness and my own selfish needs of refusing to accept her sudden disability, i...
    GeekyGirl82 GeekyGirl82 31-35, F Jan 12

    Your Response

    Cancel
    Hello there! I'm currently making some researches about Maladaptive Daydreaming Disorder. A disorder in which the person uses daydreaming as a defense mechanisme to escape from...
    RichardAndon RichardAndon 22-25, M 6 Responses Jan 20

    Your Response

    Cancel
    Can someone please tell me they're symptoms of polycistic ovarian syndrome x
    iwantababy111 iwantababy111 16-17, F Jan 21

    Your Response

    Cancel
    I have it. My favorite symptom is that people with it prefer nonfiction over fiction which I do.
    bobherry bobherry 16-17, M 1 Response Jan 6

    Your Response

    Cancel
    Having more problems with my right bicept, I guess I'll talk to my doctor about it, Still under stress from an unsuccessful consult about my neck injury, Doctors seem to judge me...
    JEM404 JEM404 41-45, M Jan 17

    Your Response

    Cancel
    I had my diagnosis at 19, I have several other medical problems which have resulted in very limited mobility. I have good bouts where I can move much more easily but I have 'flare...
    noonespecial44 noonespecial44 26-30, F Jan 19

    Your Response

    Cancel
    Post diagnosis things went sour, my carefully constructed world started collapsing around me. Everything I had done to cope with a condition I didn't realise I had became...
    Teab Teab 41-45, M Jan 20

    Your Response

    Cancel
    When you have this it's easy to become absolutely obsessed with things, and that's not easy to deal with, even when I became devastated after finishing a book series that there are...
    Dakurti99 Dakurti99 13-15, M 4 days ago

    Your Response

    Cancel
    how do people react when you tell them you have aspergers? I am always so nervous to tell people!
    kristykaz121 kristykaz121 18-21, F 11 Responses 3 days ago

    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 19 hrs ago

    Your Response

    Cancel
    Got in trouble at school so many times because of it. Its ruining my life to be honest.
    idfwuu idfwuu 13-15, M 4 Responses Jan 1

    Your Response

    Cancel
    How do you guys manage CFS? Seems like I can't live a normal life like I used to.
    awesomesauce2 awesomesauce2 22-25, M 4 Responses Jan 8

    Your Response

    Cancel
    This is an oddly specific group
    Gabbi97 Gabbi97 18-21, F 2 Responses Jan 12

    Your Response

    Cancel
    Which explains why everybody hates me. :D
    Symbiopsychotaxiplasm Symbiopsychotaxiplasm 26-30, F 4 Responses Jan 16

    Your Response

    Cancel
    Found a very good read! Check it out http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure#Explanation_of_the_Fatigue_Problems_in_CFS_Patients
    awesomesauce2 awesomesauce2 22-25, M Jan 18

    Your Response

    Cancel
    Asperger's symdrome is something thats gives me a lot and takes a lot too, I can recite 100 digits of pi easily, dolve a rubix cube in 1 min 13 seconds, and tell you anything about...
    Kringle95 Kringle95 18-21, F 2 Responses Jan 20

    Your Response

    Cancel
    I always wanted to meet someone with aspergers like me wish I knew someone near :(
    kittyanthony kittyanthony 22-25, M 3 Responses Jan 20

    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 1 day ago

    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 1 day ago

    Your Response

    Cancel
    I have Asperger's Syndrome and am depressive as well, I would love new friends
    deanratzloff deanratzloff 13-15 1 Response a week ago

    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 22-25, F 12 hrs ago

    Your Response

    Cancel
    It's a little inconvenient and lonely, because when people come home from work, I'm just going to start my 'day' lol ;) the offices close, the shops/cafes closed at night so I...
    rainyrainsky rainyrainsky 26-30, F 1 Response 5 hrs ago

    Your Response

    Cancel
    Hello, Im a 15 year old boy and live in Finland, since i havent told anyone ever about my duane's syndrome type 1 i tought it would be a good idea to share my story here. I was...
    thundercoolmint thundercoolmint 13-15, M Jan 11

    Your Response

    Cancel
    I am not a hunter. But I have worked with them. I am a mercenary. I was bait for one while he was hunting a werewolf. I have the soul of a beast so he thought I could hold my own...
    jvisgar45 jvisgar45 22-25, M 2 Responses Dec 30, 2014

    Your Response

    Cancel
    Listen up guys please because I have a little bit to say. I really want to become a hunter. Please don't think I'm just some bored stupid kid or some crazy guy. I am not either of...
    CypherLost CypherLost 16-17, M 2 Responses 5 days ago

    Your Response

    Cancel
    Is there any REAL ghost hunters here? If so please message me and make sure you tell me your a ghost hunter so I can tell you the problem
    RainbowWolf13 RainbowWolf13 13-15, F Jan 4

    Your Response

    Cancel
    No I'm not..Demon Hunter? Where does one hunt for demons? I have a few in my soul..which I've learned to live with:-).
    Stephanie2211 Stephanie2211 41-45, F 4 Responses Jan 8

    Your Response

    Cancel
    My name is Warren. I am a Sif Wolf. I defend young children from Hunger Demons, Night Stalkers, Nightmare Demons, and demons who are evil in pure. At day I appear as a boy. I hunt...
    MauiSadness MauiSadness 13-15, M 4 Responses Jan 8

    Your Response

    Cancel
    It's the last weekend of deer season where I live as I sit in my favorite stand watching day break. I killed a really nice buck here on Nov. 22nd. I hate when deer season ends...
    shortysammie shortysammie 41-45, M Jan 10

    Your Response

    Cancel
    Ya like seriously what the heck hunters should leave them alone. What if that was you. I bet you wouldn't like it if someone was hunting you. So put the gun down and back off will...
    Wolfy14 Wolfy14 13-15, F 5 days ago