This is not something I wanted to write about but as I said in Questing, I’m trying to be more open and share my experiences. I told myself that once this was not a major factor in my life I would write about it.
About 8 weeks ago I had a slight earache. Well, not quite slight. Accompanying it was a very sharp pain spike that would randomly occur. People watching me could see me stiffen up with the spike. Because of my background, I thought of it as a reset pulse and it certainly did cause my thoughts to reset.
I was given some very strong antibiotics and told to give it a few days. After three days the pain was constant and I had a rash down the side of my face that looked like I had taken a major beating to the left side of my face. Time to see a specialist. I think I finally got lucky there.
My doctor looked at me, looked in my ear, asked me to close my eyes, wrinkle my brow, squench my face and then smile. I humored him even though it was almost impossible to smile through the pain. In his most compassionate doctor’s voice he explained that I had a viral infection of the facial nerve or Ramsay Hunt Syndrome. There’s lots of information on the Internet about Ramsay Hunt Syndrome, I don’t need to add to that.
The good side was that the pain would probably go away and I would recover. The bad side was that there were a number of possible side effects that might not go away. Hearing loss, loss of equilibrium, inability to fully close my eyes, facial tics and partial facial paralysis to name a few. To be honest, I only wanted to know the pain would go away. He gave me a prescription for 10 days worth of steroids and antivirals and wanted me back in 2 weeks.
Saying two weeks gave me hope that this would be gone by that time. How wrong I was. By the end of ten days I was still in pain, not near as bad though. My left side of my face was still swollen but the sores were healing. During my second visit, again in his most compassionate voice, my doctor explained that the nerve took a long time to heal and that I was mending, maybe a few more weeks. He also said that studies showed additional steroids or antivirals were ineffective. Next appointment was for a month later.
A short sideline into some of what I experienced here. Normally when I’m sick I spend the day playing video games. If you’re just soloing for experience or coin it doesn’t take much focus. That turned out to be a very bad idea. I came to associate my game with the pain and dreaded logging in. I really liked Tera but will have to overcome my feelings before I can play it again. During the worst of this, I spent a lot of time watching “King of the Hill” on my Amazon Prime. No concentration required, only half an hour and thirteen seasons worth. By then I understood what had happened with Tera and was not worried if I ended up hating Hank Hill. I do.
I’ve lived most of my life in Texas and managed to avoid being stung by scorpions. I don’t know what changed but I got stung twice while I was recovering. The first time the pain lasted about 5 minutes, the second time it lasted about 24 hours. Both times, the pain in my ear disappeared. Apparently I could only concentrate on one pain source at a time. I did consider keeping a few scorpions as pets but realized I was being impractical.
Slowly the pain went down and I was faced with a new sensation. It’s hard to describe but imagine the way a limb tingles as it starting to wake. This was happening to my face and ear. With no warning my face would start tingling and it felt like water was pouring down my face or my ear would start itching like an insect was crawling down it. I have three areas on my face that while not numb, feel like there’s a piece of cloth between them and my razor.
All of this is getting better. My ear seems to be about two weeks behind my face in healing but the pain is now only slight and intermittent. I had my third appointment with my doctor. After seeing the results of my hearing test he feels there is no concern about permanent damage. We both know I’m getting better, it’s just a matter of time.
I was fortunate. The semi-numb blemished areas on the left side of my face that will probably fade with time. I still have minor pain in my ear and a slight amount of ringing in my ear. I’m confident that this will go away too. This could have been far worse and is for many people. The sooner you get treatment started, the better your chances of full recovery are. If you have an earache and with a rash developing on your face, see your doctor quickly.
One last thing. As the pain, goes away my sense of humor seems to be returning. My poor wife must feel like she’s married to Jekyll and Hyde. When the ear is hurting, I’m irritable and cranky. Now when it stops hurting I’m full of mischief and glee. I know balance will come but in the meanwhile, my dearest wife, I apologize.
Update Jan 9: I had a dental cleaning yesterday. The reason that’s important is that it marked 6 months since I was diagnosed with Ramsay Hunt. The pain is gone but my face and ear still itch when I’m stressed or very tired. I’m also seeing some scarring develop on my face. It’s not obvious but I’m surprised it developed after most of the symptoms disappeared.
Update Feb 23, 2015: After almost three years, I revisited this topic to describe the little ways it still affects me, Ramsay Hunt Syndrome, Three Years Later.
© 2012 – 2019, Byron Seastrunk. All rights reserved.
If you’re reading this, and feeling awful, please know You Will Get Better! It is a long road, it took me over 1 year to finally feel whole again. But, I did get better! I had every symptom, except facial droop. My rash did not last long, but the dizziness, the feeling off balance, and just feeling awful lasted for what felt like forever. Over 1 year (14 months). I didn’t feel awful for 14 months, but I was still having days/times that weren’t great. After about 4 months, I felt a bit better (not well/not whole, but better) and just continued to feel better after that. You Will Get Better! You Will!
I’m in my third month of Ramsey Hunt with Bells Palsey my mouth and rR eye are slowly improving, however… I’m having abig problem with my equilibrium and have to,use a walker to,keep from tipping over.. not really dizzy
Though. Still,some itching and sharp pain in my ear
My thoughts and prayers go out to everyone wishing you all a speedy recovery . I hope no one minds I’m posting since I was diagnosed by my neurologist with Bell’s palsy but sometimes I wonder if it’s a combination of Ramsey hunter too .I don’t know My symptoms started with buzzing screeching ,crickets and noises in my ears (both ears) and raining in one,early January after a few weeks not going away I called my doctor who referred me to a ENT checked my ears had hearing test all came out good I did complain of sound sensitivity which was noted in the hearing test as well,ENT told me appears like tinitus even though I never really was exposed to loud music or environment but things happen so I started to accept it, hearing test was early February 10 days later woke up with my left ear red in pain couldn’t touch it no blisters but had a cold sore on my lip my ear looked like it was on fire , also this white noise sound in my ear was constant,I was prescribed antibiotics by my GP , thinking could be ear infection, 3 days after that I noticed the paralysis on my face couldn’t brush my teeth properly and all the other usual symptoms a lot people here posted , was rushed to urgent care was diagnosed with Bell’s palsy I was told my ear inside is fine there is no infection , I didn’t even know what Bell’s palsy is , was given presidone and anti viral Meds for a week , went to a neurologist he confirmed I have Bell’s palsy when I asked him why is my ear red or inflamed he told me it’s the same thing you have on your lip. But inside my ear canal there was never blisters just redness skin may looked little bumpy,I’m in my third week of recovery , my facial expressions or movement are getting better my smile is getting better and regaining more movement my eye is doing good too but one thing that concerns me is my hearing the noises have not gone away although there are times even if it’s for a little while it’s quite and sometimes they are low not as loud , my affected side ear I feel it’s getting better but I feel like something is there I feel so much itch in that area inside especially when I move my jaw sometimes itchiness comes without moving my jaw don’t know if this is a sign of my nerve repairing or something is not right , but the hearing feels better in that ear than it did 2 weeks ago , I’m concerned because all of this started with my ears if I could also have Ramsey hunter , these two conditions bells and Ramsey are so close to each other, I was wondering if anyone else experienced what I have ? All doctors who saw me they told me was caused by virus most likely herpes virus but they too can’t be sure or what virus , it’s really scary not knowing,I’m scared of something happening to my hearing even though the test came out good but still they couldn’t figure out what it was early on without me going paralyzed on my face. Doctors who examined me told me noises in ear will subside as Bell’s palsy gets better and eventually go away Sorry for the typos.
I’m on my second day since I’ve been diagnosed with RHS and, although it’s only the beginning, I consider myself very lucky.
It started 7 days ago with a sore throat and some ear pain. Three days later I noticed my right ear was getting unusually big so I took a picture and decided to see a doctor the next morning if it didn’t improved. Obviously, I went to see a doctor the next morning and was treated for an ear cellulitis with anti-biotic. She made it clear that if I didn’t see any improvements within 3 days or if it would get worse I should come back immediately.
The next morning I started to experience minor facial paralysis on my right side. Couldn’t close my eye property or open my mouth. I immediately went to the hospital and was diagnosed with RHS within the next 2 hours. I’ve left the hospital in the middle of the afternoon after the hearing test revealed that I didn’t have any hearing loss. On a scale from 1 to 6 in which 1 is no paralysis at all and 6 is total paralysis, I was between 1 and 2.
I’m on my next day and already I can already close my eye better, I can move my mouth better and I think the ear pain is going down.
It’s sill very early to know for sure if I’ll recover but I feel my odds are good.
I noticed a really bad pain in my shoulder about a week before Christmas. A couple days later, I started noticing a splotchy rash on my neck. I thought it was hives because I had recently found out that my blood pressure medicine had been causing angioedema, so I figured the two were related.
A couple more days later, the splotches began to sting. Bad! So bad I don’t think sting is the right word. The stinging was because of the blisters. This whole time, my boyfriend had been trying to convince me to go to the emergency room, but I didn’t want to. They’re hives. They’ll go away. I can still breathe. But do hives have blisters?
No, they don’t. So Christmas morning, we went. The ER doctor took one look at me and knew right away it was shingles. Spent 2 weeks in the hospital. During that time, the neurologist came to see me, looked in my ear, and said they go all the way to my eardrum. Affected the 7th cranial nerve, so I can’t smile evenly. I have difficulty closing my eye. Did I mention I’m 33?
I’m not a vain person. I really don’t care if I look good. I just don’t want to look bad, and I feel like I look bad right now. I won’t even look in the mirror. I’m just worried that when the swelling on my face goes away, the paralysis won’t go with it.
I always feel bad for the people starting down this path because none of us know how well you will recover. Between the swelling and the blisters, I looked like I had been in the losing side of a bar fight. Three months later I only had minor scaring on my cheek and chin. I was fortunate enough to avoid all but the slightest of paralysis in my eye and mouth. Those were also gone within months. As you read through the comments here, you can see not everyone is as lucky.
I wish you the best and hope you have a complete recovery. Thank you for sharing your story. Maybe six months from now you’ll come back to let us know how you are.
I know how you feel! I’m 33 as well and was just diagnosed with RHS on the 27th of January. I looks to be about two weeks from when you posted this, I’m wondering how you are now?
Hi Kheele and Audrey,
Let me join the club of being 33 and diagnosed with RHS early this year.
I’m almost 2 weeks in. On the day I was diagnosed I thought it would be a ride in the park. Unfortunately for me, my face became more paralyzed after a few days, even with the proper treatment. I’ve been told it can happen as it can take some time for the medication to really kick in.
The good news is I’m seeing signs of improvements. Muscle on my face that did not move are starting to move. I don’t think it’s noticeable but I certainly can feel it. My eye can also close a little better. I still mumble when I talk but I feel it’s getting better (I also noticed my “P” are better when I put a slight pressure on the paralyzed side on my mouth). The mild vertigo I had are mostly gone. It’s going to take time, but I’ll heal.
Right now the hardest thing for me is to deal with anxiety and I’m pretty sure I’m not alone with this. I have an irrational fear of being paralyzed on the other side as well, even if there are absolutely no signs of this happening.
I’ve also came across a series of videos that really helped me. According to his videos, it took him 14 days to be properly diagnosed with RHS and he made a really good recovery.
https://www.youtube.com/channel/UCYLpvcAsZzem7_UHofBgtmw
Be courageous and take care of yourself.
JP
Hello I am going crazy trying to find anything, and everything on RHS. I was just diagnosed this morning. It started about 5 days ago on Saturday with pain in my left ear. As the days went by the pain became worse, and the pain started radiating to my neck. I started to feel these excruciating bumps in my ear canal. The doctors didn’t have any idea of what I had in my ears. It wasn’t until the afternoon I received a call from my provider that after a discussion with her colleague diagnosed me with RHS. She insisted I start taking 120 mg of Prednisone , and 3000mg of Valtrex. I am afraid that I will wake up with my the left side of my face paralyzed. Any insight would be greatly appreciated.
I know the misery and despair you are feeling and all I can do is sympathise and try to help reassure you. I had RHS following a bout of shingles last year. I was really horrfied when the paralysis appeared on L/H side of my face and my smile was all to the one side, went to doctor the same day and was given high regular dose of prednisolone and told to be being patient for a couple of weeks and my facial paralysis disappeared. This site and others stories also helped me tremendously as there were many people like me who were further on and who gave me hope and reassurance that the paralysis would correct itself, but you must take the high dose of prednisolone and it must be given as soon as RHS apprears. Good Luck and try not to stress as that wont help.
I was just diagnosed as well with RHS. I facial paralysis on my left side. Eye won’t blink and I’m really worried that it will stay this way. My shingles has stopped and I’ve been told by the doctor now we have to wait that it takes time for the nerves to grow back. I’m wondering how long till I start seeing results if any. Would love to know in two weeks I’ll be blinking again. I don’t have any hearing loss and the doctor says that is a positive sign. I sought treatment immediately and got the antiviral and prednisone with 3 days of the symptoms. Just really worried as I have a job with teaching and I can see this affecting it terribly.
Hi Ty,
Sorry to hear that, but looks like the odds are totally on your side since you’ve received the right treatment at the right time. From what I’ve read, the time to recover from can be affected by many factors so there’s is no exact answers. I’ll give you details of my story as a baseline.
In my case when I was first diagnosed with RHS, I was very lightly paralysed. I was able to close my eye (with efforts of course) about 2 days later. However, one week later, even with the meds, I became more paralyzed to the point where my nostril didn’t move anymore, eyebrow didn’t raise, speaking became an issue. At that point, my was was fully paralyzed (except that my face didn’t droop).
From that point, it took about 2-3 week to regain a tiny bit of movement and everything started, slowly to move back. If I remember correctly, about 6 weeks in I was 50-60% recovered with no issues to speak or eat. From that time, life became normal again.
I’m a little less than 3 months in and I’m back to 95%. I’m sure I’ll fully recover as most people do. You’ll soon see something wonderful about the healing process which is, if you’re having a shitty day but see your face made progress, you’ll instantly forget about that day and be happy.
You should join the Ramsay Hunt Facebook group if you have any more questions. However, since most people who get RHS simply heal and move on with their life, remember that most active users on that group may have more serious cases and this may not be a great statistical representation.
Good luck
Hello … i have being reading a lot about RHS
My son of 13years got an “ear infection” a month ago and the GP gave him a set of antibiotics, he was vomiting and also very dizzy, we decided to see the ENT, that straight away after the weekend as his ear was about double of the size and fortunately the ENT thought about the virus and gave him a cortisone injection that made the swollen ear back to normal the next day. We still got to the hospital for a CTscan and also audio check and he has made a full recovery in the following week.
I am now the one so nervous about the possibility of coming back. He is very sporty and next year going for a boarding school.
I am really sorry for people with RHS and hopefully they will find a cure or something that helps to contain it.
Thanks for the site … it is the best answer for my worries
Hi
I just want to reassure everyone that there is hope for a full recovery from RHS. I had shingles in my mouth and left side of my face, followed by paralysis to L/S of my face due to RHS. It required a long period of taking anti virals and steroids and approximately 2 months for all to clear. Good luck to everyone who has been recently diagnosed. Keep positive and de-stress which is important for recovery.
Katy from Antrim
My 87 year old father in law died from complications of RHS on 11/22/16.He only had it 1 month. It’s very dangerous especially if you’re elderly. Take care.
Hi
I am finding this forum quite frightening as I have been googling information on RHS. In my case I began by having blisters on roof of lefthand side of my mouth and very sore head on the left side, within 48 hours of these symptoms went to GP and she immediately diagnosed Shingles and started me on Aciclevir 800mg 5 times per day for 7 days. On the 7th day I wakened to pain in my left ear and numbness on lefthand side of my face, eye and mouth, very scared returned back to GP who thought it was Bells Palsy until my son who was with me had told her googled my condition and it threw up RHS, he said that Bells Palsy and RHS were two different fungal infections. The penny dropped with my GP and she said she hadnt heard of RHS for a few years and started me on 60mg of Prednisolone per day for 5 days and gradually reducing over next 5 days. I am taking these steroids along with another 7 days of Antivirals but in second day of this regime the numbness/paralysis appears to be worse. Most people on this forum have taken RHS without first having had shingles so I am puzzled. Are the two not connected and have I now got a different disease? Any advice and comments would be welcome please and will this facial numbness/paralysis go away as it is making me very stressed which is not good. Oh! and I also have to take an Amytriptolene 10mg at bedtime to ease the pain which I am told is the only pain reliever for nerve pain. I
I’m afraid I can’t be too much help but RHS is not a fungal infection, it’s a viral infection. The way it was explained to me is that RHS is a very specialized former of shingles infecting the facial nerve. I believe that Bells Palsy can be one of the side effects of RHS although the two are not necessarily related. Your doctor should be a better source of information than me.
Thankyou for your reply and apologies it was typo errors, I did know that Shingles and RHS are viral and not fungal. Thats the other thing I find that I am a little forgetfull with all the medication. I ask again if anyone else has had shingles as a precurser to RHS. It appears most people on this forum have not had shingles and had RHS instead. That is why I have started this line of blogging. Has anyone on the forum had to take anti-virals for a full fourteen days as well as the high doses of prednisolone for 10 days. Initially for shingles and then for RHS afterwards. I know you say to ask the doctor well it is so difficult to have a detailed conversation with the GP and I said previously she was did not diagnose that I had RHS until my son brought it up.
I had to take anti-virals for a full fourteen days as well as the high doses of prednisolone for 10 days. Initially for shingles and then for RHS afterwards. Unfortunately, there was no improvement. I lived the worst two months ever. I had severe pain in my ear , itchiness and vertigo too. After four months , my facial paralysis disappeared almost 90 percent and the pain is much better. However I am still suffering from the weight increase especially in the neck and face. I had to put two or three pillows to sleep
I had shingles about 5 years ago. I have had two flare ups of RHS since then – about 2 and 4 years after shingles. Had never heard of RHS before, but it was one of the most painful things I’ve ever been through. It starts with bad headaches, then ear pain, and pain plus sensitivity on side of face. I get painful sores in my mouth, my tastebuds get inflamed, tongue gets scratchy texture to it, and my sense of taste lessons. Just getting over 2nd bout with it, but my tongue is still very rough on surface. I also get ringing in my ears. This comes and goes even when RHS is dormant. I’m beginning to recognize the symptoms now and get on antiviral meds plus steroids ASAP which seem to shorten the length of the episode.
Hi I was told I had rhs 4 years ago, it is caused by the herpes virus ie chicken pox that I had as a kid, as the virus never really leaves the body so I was told when I spent 11 weeks in John Radcliffe hospital in Oxford in 2012/2013. My symtums were the right side of my mouth dropped,I could not close my right eye,I could not eat or drink properly and the ear ache I had gave me tinnitus in my right ear,which I still have,plus i can’t close my right tightly and I still get numbness in the right corner of my mouth,this can cause problems when drinking as if I drink a pint I have to use a straw so I can drink it quicker. Other than that life is not to bad you just have to get on with it or it will drive you mad.
Hi, I was diagnosed with RHS two weeks ago. My experience was that on a Friday I felt like an ear infection was coming on. Friday night I experienced sharp, ice pick like pain deep in my right ear. Saturday it eased up and I felt much better but Saturday night the pain returned, this time just under/below my ear, as in where my ear lobe is. Sunday my face was paralyzed and I went to a walk in clinic. He prescribed antibiotics stating it was an ear infection. By Monday AM (two weeks ago) it was worse so I called my ENT. He immediately diagnosed me and put me on 3000 mg Valtrex (sp?) antiviral a day for seven days, plus 60 mg prednisone for five days, then 40mg for five, then 20 for five and now I’m tapering off for five more days (total of 20 days.) He believes mine was caused by the shingles virus which was re activated in my facial nerve. (Other viruses can cause Bells Palsy.) I never developed a full rash but he stated he saw a couple lesions in my ear, thus the RHS diagnosis. Fortunately for me, I have gone from level 6 (full paralysis) to a level 2-3. My eye closes almost 2/3 in a blink, and my lower lip is about 2/3 recovered too. The other areas are nearly recovered. My ENT explained, and also what I’ve read is that RHS IS shingles, but just in your ear/facial nerve. Hope you are feeling better!
It is as if I am reading my own story. I had the exact symptoms as well, but I haven’t had any paralysis yet. My left eye is just starting to bother me with a burning sensation, or the feeling of exhaustion. I am so afraid to go to sleep, and wake up with my eye drooping. Thanks in advance for any insight.
I feel your pain, as I feel everybody’s pain. Mine started with a terrible earache, followed by extreme vertigo, vomiting, and bells palsy, although no rash. I was hospitalized for 8 days and on intra-venous steroids and antivirals. Sent home with oral medication. I had to go to physical therapy for balance and vestibular exercises. Eventually the symptoms subsided but I am left with hearing loss, balance issues, and horrible vertigo on and off. a team of 3 doctors in the hospital couldn’t figure out the cause – it was not until after discharge that my primary care physician diagnosed it – he had only seen 2 cases in 20 years. It is frightening, and the only advice I can offer is never hesitate to see a doctor for any related symptoms you may have, and be very insistent on having them thoroughly explore your symptoms. I wish everyone the best of luck, and no happy returns – Mary
This is my story with RHS
@1st week It started with severe headache and earache, I went to an eent diagnosed me with ear infection and prescribe me with co-amoxiclav and anti-allergy med.
@2nd week Blisters appeared on my left ear followed by facial droop persistent ear ringing, tonsils and taste sensation that you are eating on tin foil. I panic a lot because i dont know what’s going on with me pain lingers on my ear and numbness of my left side face persist. Went to my second doctor said that it was an ear infection prescribed me with Clindamycin and Cipro.
@3rd week still pain goes on my earache also intensify can’t really move my facial muscles well I still fell that my left eye is not closing well. I thought that nothing is going well for me because i felt pain in both of my left ear and face. I decided to go to another eent finally being diagnosed with RHS prescribed me with aciclovir 800mg 4x(7days) a day and bethamethazone 5mg 3x a day(10days).
@4th week with RHS my follow up visit to my doctor said that i have recovered some of my facial muscle i can now close my left eye, eat, speak and move my face well.
@5th week now with my RHS follow up with my doctor again and said the i have recovered almost all of my facial muscle i can now smile, whistle and puff my mouth also told me to buy vitamin B complex. But i still felt pain inside my ear, fullness, ringing and cracking sound persist. I haven’t gone to an audiologist yet i think that i might have a partial hearing lost. My doctor said that if my hearing doesn’t improve within 1 month from now she will refer me to an audiologist to check my hearing. Facial muscle improve within 4-5 weeks but my ear problem for me is a little late of weeks for improvement and recovery. I’m hoping and believing that it will recover fast because I’m not good at dealing pain. 5th week facial pain subsided. By the way i’m at my 6 weeks of my RHS.
I’ll keep you all posted on my health regarding on RHS also my follow up on the audiologist hope that is not necessary anymore. Hoping and praying that all of us recover 100% from this sickness. Thanks and Godbless us all.
Thanks for sharing your story. While it’s unfortunate that you had to go through this, I’m glad that your recovery seems to be going well. It took a long time for my ear to fully recover but it finally did and we’ll hope that yours does too. Just keep in mind that recovery is not fast. It will take a while.
Hi my name is Coralee, I once had Ramsay Hunt Syndrome too. It’s horrible, no denying that. I woke up one morning with a very bad earache, felt nauseated, and I had a warm sensation and pain on the entire left side of my face. Once I had made it to the rest room and looked in the mirror I was very scared; I knew something was really wrong. My face was swollen as well as my inner ear and under my ear was incredibly red and very itchy. I was 28 yrs old and I was a single mother of a six year old daughter, unfortunately I had a lot going on at that time, I was in the midst of a nasty custody battle, a divorce, and online college courses. To make a long story shorter, my divorce was put off for quite some time, with my families help and extremely understanding teachers I made it through college and graduated as an E.C.E but unfortunately my ex husband at the time sure tried to use my illness to his advantage, to remove my daughter from my care. Due to family and friends, especially my parents, I was able to keep my daughter with me I thank god for that.
I managed to get a friend to get my daughter to school and I took a cab to the hospital, within two hours my face was so swollen and my smile had gone sideways. I was having a lot of issues with drooling and my ears were so incredibly sensitive to any noise. I felt sick and dizzy could barely stand without assistance. At this time I became so emotional and was literally sobbing as people around me were just staring at me. Little did I know at that time, I was going to have to get use to that for some time to come.
Eventually, I had one doctor examine me, followed by another, and soon there were four different doctors examining me. I was so scared. If they didn’t know what was wrong, how was I ever gonna be cured. Before I was sent home much later on that day, I had 6 different diagnosis’s, and it wasn’t until they called in the neurologist that it was finely determined to be Ramsay Hunt Syndrome.
I was angry, emotional, scared, and exhausted.
The first stop after leaving the hospital was to the pharmacy where I had to pick up 15 different medications, and then from there I had to go directly to an optometrist and get eyeglasses made for me that day.
Talk about an expense that I couldn’t prepare for, or afford. Thank god for my family once again.
I spent the rest of the day hurt, confused, angry and wasn’t quite sure what to expect next. Many arrangements had to be made for my daughter, for my schooling and basically my mother, with the exception of her work, was with me a lot. My poor mother and father were doing trips to and from the store getting me medical supplies, food, coming to care for my daughter and myself, and of course spoiling me with flowers and gifts almost daily. I am a very lucky girl in many ways, but not so much in other ways.
Over the next week, I developed other issues. I could barely walk, my neck was in pain daily, and I had severe facial spasm’s that would last a minute or so in length and would happen ten times or more a day. Sometimes the only thing to relieve the pain, was a cold wet compress. I felt fevered, confused, sore all over, and extremely tired all the time. Then more severe issues began to develop. I had little to no memory retention at all. I would leave taps running, cigarettes burning in ashtrays, kettle going on the stove whistling and not even piecing together what the sound was from. I couldn’t remember what pills I had to take or had already taken. That’s when my mother basically moved in with us for a while. She was at our home more than her own by this point. My brother came over as well and tried over and over to get me to study and retain information for my college exams. With the help from my brother and the most compassionate teachers in my college courses, I did eventually graduate.
During the stage of my college exams I developed what they call club hands, and wrote like a child on all of my exams. I as well, developed a completely numb tongue that I choked on daily. I couldn’t feed myself or care for my daughter. My face became very disfigured and my self-confidence was little to nothing. I became very depressed, believing I would never recover. I even begged my long time boyfriend to leave me at that time and to make the most of his life, which he did not follow, and for that I was grateful. My daughter of the age of six became confused and scared and didn’t want to be seen with me and or hug me anymore. She didn’t understand what was happening, but she was always there for me, at a distance.
One of the saddest moments for me, was the day my 16 year old dog Nicki had to be put down. With the 55-60 stairs to my apartment, and the fact that I hadn’t left the house in three months due to sheer embarrassment of my appearance, not to mention the extreme fatigue, I couldn’t be there and hold him in his last moments. To this day, it still eats away at me, but I do know my parents gave him the comfort he deserved at that time, when I couldn’t .
Eventually, I started to see some improvement with walking and I was able to walk with a cane, my face wasn’t as droopy and I was able to control the drooling a bit more. The memory issues and the numb tongue lasted right till the end however. My neurologist later told me, that he wasn’t sure I would have a full recovery, most people don’t recover completely, so I do feel extremely fortunate for this second chance.
A long eleven months passed before I could consider myself almost back to normal. Today, 14 years later, I still have some lingering effects. When I become very tired my face will droop a little to one side, I still have less coordination with my left leg then my right. But what bothers me most of all is the fear that it has left behind. I do not mess around with ear infections with any member of my family, if I hear of one starting, I highly recommend that they visit a doctor as soon as possible. The other effect that is most bothersome to me, is the fuzzy memory I have. Some things are totally missing from my memory, family events, family members, names of people I know. Most of things I have forgotten are from the time period when I was ill. This is the main reason I have shared my story.
Has any other Ramsay Hunt Syndrome victims suffered a partial memory loss? To all that have contracted this horrible illness I wish you well, be persistent in fighting to return to your former self. Have faith, and don’t be afraid to lean on family and friends when you need to. They will help you get through this.
….
This is a story my daughter wrote in school from her perspective of my time with Ramsay Hunt Syndrome. I am very proud of her, and what she wrote for me, and I’d love to share it with you.
….
A Forgotten Miracle
I thought I was going to lose her forever. I didn’t know who I’d be without her.
I was a young girl, barely in my public school years. My mother and I had lived alone after my parents split up two years prior. Together we were a team. Everyday we’d watch cartoons together. She’d cook my food, help me tidy my bedroom and would even walk me to school and pick me up afterwards. She was my whole world. However our world was shattered when my mother believed to be getting a simple ear infection.
I remember it happened fast. First it was an ear infection and quickly spread into something out of a horror movie. Ramsay hunt. That’s what she was diagnosed with. It was a rare virus that affects the sixth and seventh , and possibly eighth cranial nerve. She had lost control of walking, talking, focus, memory and even ended up with the whole left side of her body drooping. It is a horror of my life that I never want to relive.
It wasn’t easy watching the powerful woman I had always looked up to crumble down to nothing. I didn’t think anything could ever take her away so quickly. I would often watch from the shadows of our home, seeing my own grandmother having to feed my mother like an infant. My mother had a dream. All she wanted was a husband and daughter; she wanted to live a happy life like any other woman, but my father crushed that dream by the time I was four. But this is why she was so strong. Despite the heartache my father caused, she pushed through. She became a single mother who was going through schooling to be an ECE teacher and it was going well, until she grew ill.
Despite it all, she still studied, even though she had no memory retention at all. She still wanted to be the mother that I would always look up to, and she was. I was always raised at a more mature state, so I understood what I was watching. My mother is an amazing woman.
I remember though, that a lot changed for my six year old self. I began to learn how to cook for myself, walk myself down town to school and even do my own homework. Not once did I blame her. But I did fear I’d never have my mother back, that I’d get taken away to live with my father, and that wasn’t what I wanted. He left us.
Ramsay Hunt is a virus in stages. The faster you catch it, the better chance you have of overcoming it. Unfortunately for us, we weren’t quick at catching it. Doctors were sure my mother would never be herself again. This news devastated my family..
I remember though that there was another tragedy that plagued our lives. Our sixteen year old dog, Niki, was ill with two different cancers and was suffering greatly. We granted him peace, however my mother could not be with him to say her goodbye’s. It was the hardest time of my childhood. Not even my parents separation was this hard to overcome.
But then we had a shimmer of hope. Because my mother was constantly sitting around, doctors suggested she get full body massages. These massages were like the angels in our lives. As rapidly as I lost her, I was getting her back. She could talk, she could walk and her left side stopped drooping. After eleven painful months, I was with my invincible mother once again.
I can’t say that this scare didn’t come without a price. From time to time we get scares that it may be returning, and we even see signs of things the virus has left behind. But it doesn’t matter. I know that with all the health problems my mother has suffered, that she will always be here for me, because she’s all I have. She was the forgotten miracle.
Thanks for sharing your story. I remember being told that stress was one of the major triggers for Ramsay Hunt and it certainly sounds like you had your share at the time. You’re absolutely right though, you need a strong support group. My wife should have gotten a medal for putting up with my anger while I was going through the pain stage. Glad to see you came out of it without any major issues and it sounds like it brought you and your daughter closer. That’s a memory always worth having.
I got RHS with all of its symptoms. 3-13-16 I had pain in my right ear. Went to my primary care physician and she said I had an ear infection, she gave me ear drops, ciprofloxacin. The pain got quite severe, I called her back 2 days later, she called in a pain reliever.the pain reliever did not work. I went to an instacare 1 1/2 days later, he said it was an ear infection and gave me Amox-clav. The next morning I was in such pain I went to the emergency room. They took me in and it took 2 1/2 hours to get an IV going. They did some blood tests and a cat scan. They all came back negative. They gave me fluids, anti-nauseous, antibiotics, and a painkiller.. Then they sent me home and said come back tomorrow for a follow-up. I started to hallucinate and it was quite scary and when we went back to the hospital They said they figured out that it was that anti-nauseous medicine. I won’t be taking that again. Phenergan. I came back the next day and they gave me IV fluids because, ,I was throwing up a lot., Plus they gave me more IV antibiotics. They said I had tonsillitis and an air infection. And then they were sending me home. But then my husband noticed something behind my ear and along my hairline by my ear. And a red blister in my ear. We called the doctor to come back to my room and they checked it out and said it was Ramsay hunt syndrome and then changed my prescription to prednisone and an antiviral valacyclovir. And then made an appointment for an ear nose and throat doctor for the next morning. When we got up to get ready to go to the ear nose and throat doctor the next morning, my husband looked at my face and everything was all droopy he thought I was having a stroke. So we went back to the emergency room. At that point they did tests for a stroke. It was negative. They said it was bells palsy which comes along with the Ramsay hunt syndrome. We went to the ear nose and throat doctor the next morning he confirmed the diagnosis said that I had all the classic symptoms of that Ramsay hunt and took pictures of me and sent it to the university. He said there was a 14 day window for some people that can get surgery I was not a candidate for that so I got an appointment for a couple days later at the hearing and balance doctor and went there and I did some tests on my face and they said that I have some hearing loss and some nerve damage all on my right side of my face and vertigo. My next appointment with the ear nose and throat doctor was eight weeks later. That seems like an awfully long time to me with nothing else in between. So on my next visit eight weeks later. I showed up at the doctors office in a wheelchair. My vertigo is so bad I can’t hardly walk my husband helps me around the house to walk. At this point my symptoms are ear pain, vertigo, bells palsy, headaches, my taste buds are shot everything tastes terrible and I throw up all the time and I have lost 44 pounds so far, and everything smells bad. My kids have to go downstairs and turn on all the fans and open the doors and shut my door so they can cook dinner which of course I don’t eat because I will just throw up. So then the doctor gave me some other medications which really none of them work that good. I do have some progress on my face in my cheek area. We have spent quite a lot on medication. He sent me t to a physical therapist for my balance and for my hearing but their appointment was also two months out so I haven’t got to go there yet. Then we made another appointment with the ear nose and throat doctor it was nine weeks later. In between that time I was still losing weight I am down 50 pounds. I went to the emergency room because I was dehydrated and got a couple of bags of IV fluids which made me feel pretty good for a few days I couldn’t wait to go to the physical therapist so I found a different one and I have gone there two times so far working on my legs because they are mushy from all the weight I have lost. Ever sense I have gotten Ramsay hunt syndrome, I really didn’t know much about it I seen the ads on TV where one in three people get shingles. I have been to several doctors and a lot of them don’t seem to know much about Ramsay hunt syndrome. I don’t seem to get any time frame on when I can be through with this. It is really quite depressing. My family has been very helpful, one of them stay home with me daily I don’t know what I would do without them. I haven’t been to work since March or drove my car 7-7-16
I can’t express how bad I feel for you. Vertigo is one of the symptoms I was luckly enough to avoid. My doctor had some experience with Ramsay Hunt because he put me on protein shakes. They still tasted horrible but they kept me from losing weight. I’ve been told there is a Facebook group for RHS (I avoid Facebook as a personal preference) and you may find some comfort there. You might also check out http://www.ramsayhunt.org/ They have a lot of case histories and you might get a sense of how long it takes to recover. From the sampling I’ve seen here, everyone is different but you need to think in terms of months for normality to return and years for a full recovery. I’m glad to hear you have a strong support group because your emotional outlook does affect your recovery time. Best wishes for a full recovery and try the protein shakes.
06/01/16: I was getting sharp twitching pain behind my left ear. It was an intense shooting pain, crippling at times. Went to a walk-in medical clinic, Doctor gave me some antibiotics (Clavulan 500). Take 3 times a day.
06/03/16: Still had very sharp, shooting pain behind my left ear that would come and go. Advil/Tylenol wasn’t helping with the pain, Went to Peace Arch Hospital on Friday evening. Doctor thought is was a virus. Told me to stop the antibiotics and gave me a prescription for Naproxen. I was also given a Toradol IV at the hospital for the pain. The sharp pain behind my left ear was now gone.
06/06/16: Went to work in the morning, picked up a coffee and a muffin. Realized I couldn’t swallow. Felt like I had a golf ball stuck in my throat. Also couldn’t taste anything, my tongue felt sore. Went to Burnaby Hospital.
Again, I was told it was viral. Just told to wait it out, virus can take up to two weeks.
06/07/16: Woke up in the morning, had some discharge from my left ear. Went to a walk-in medical clinic in the morning. Doctor told me I had an ear infection, gave me Ciprodex ear drops (use 3 times a day). Also told me to take Advil Sinus & Cold.
06/07/16: Noticed that my left ear was now red, severely swollen and felt hot. Looked like I had a cauliflower ear. Went to Langley Hospital. Showed the doctor the Ciprodex I was prescribed earlier, Told me to keep using the ear drops and I should improve.
06/10/16: Finally got an appointment with my family doctor. Hadn’t seen any improvement with the ear drops. Family doctor did a culture swab on my ear and throat, blood work and sent me for x-rays on the back of my head. Told me to continue using the ear drops (Ciprodex) and gave me some antibiotics (Clavulan)
06/15/16: Followed up with my family doctor as my results came in. She told me I had shingles. I was told to stop using the ear drops (Ciprodex) and antibiotics. At this point the swelling around my left ear was almost gone, blisters had formed and my ear was crusting over. Still had no taste and issues swallowing food.
06/20/16: Went back to my family doctor. On Sunday June 19th it was fathers day. I went and visited my family and they noticed that my left eye wasn’t blinking/closing, my smile was crooked, left side of my face felt heavy/numb. However, my speech was fine. My family doctor told me it was Ramsay Hunt. She had never dealt with this before. Didn’t know what to do. She put my medical information in a envelope and sent me to Burnaby General Hospital. The hospital gave me Valacyclovir 500mg (3 times a day for 7 days) and Prednisone 50 mg (1 tablet for 5 days). They also referred me to a neurologist.
Today (07/06/16): I did some research and started building up my immune system. The product I used was Immune Plus (vitamin C, B12, Zinc, Magnesium). Not sure if this did anything to help. My left ear feels fine, hearing is normal. Sometimes is does feel a bit heavy, but much better. My mouth sores and throat are better as well. I can swallow normally but taste is not fully back. The numbness and pressure on the left side of my face is almost gone. I can fully close my left eye on it’s own, it is still weak and blinking is still off compared to my right eye but making progress everyday. My smile is getting better. Still crooked but not as much as before. I’m making progress but it’s slow. Patience is needed to deal with this. It’s been tough on me emotionally. Feels like I’m on the road to a full recovery. I have an appointment with my neurologist on Aug 11/16.
Just wow! Thank you for sharing your experiences. You have my sympathies and I wish you a speedy full recovery. Your story tells me just how lucky I was to stumble across a doctor in the Dallas Fort Worth area that knew what Ramsay Hunt was. Be patient and maintain your positive outlook, nerve damage heals slowly but full recovery is possible. It’s even better to hear you are starting to get better.
I am fighting Ramsay hunt right now, after having been misdiagnosed for many many months. Needless to say I’m terrified. My question to you is this: I am in a small town but about three hours away from DFW. Used said that you Lucky enough to find someone that understood it. Was this an ENT or did you go to a neurologist? Is there someplace that you would recommend in the DFW area. Dr or a hospital? Thank you, c
My doctor runs an ENT clinic in Cleburne, Dr. Benke. I highly recommend him but your statement about months and months concerns me. My disease ran its course in about four weeks, It was the recovery that took me years. I hope he can help you as much as he did me.
Fourteen and a half years after treatment for Ramsay-Hunt, I still get “ghost” outbreaks – itching and pain (both on the surface and deep to the nerve roots) in my ear and on my scalp. I even get shallow shingle/chicken-pox scabs forming.
This usually happens at times when I am undergoing stress and/or am not sleeping well.
It makes it hard to concentrate, and makes me grumpy and tired.
I had Ramsey Hunt about 7 years ago, started out the same way a lot of others, stabbing ear pain, went to doctor twice, they said I had an ear infection gave me antibiotics. Then one day my ear was itching and I felt something in there, went to doctor, he said I had shingles. He gave me something strong for pain which I threw up, then gabapentin. I have this odd bump on the left side of my head about 2 inches above my ear which I think popped up with the shingles. I have a loss of hearing, a pulling sensation inside my ear. some itching and dizziness. I don’t feel safe driving outside my little neighborhood area. It went away for a few months last year but is back now.
In August 2014 I woke up with my left eye irritated. I assumed an eyelash had gotten in my eye while I was sleeping and caused the redness. I went through the day at work and when I went to bed later that night I put gel eye drops in my eye to help heal it. The next morning I woke up to a very irritated eye and I was not able to focus with both eyes. I promptly made an appointment with my eye doctor and through a dye test he was able to find the herpes virus.
I did not put the pieces together until after he diagnosed me and sent me on my way with a medication to put in my eye to help rid me of the virus. After 4 days my eye cleared up wonderful. But, I looked back and realized the “ragweed” allergy I thought was causing this strange left sided headache above my eye was not allergies.
The ear pain. Wow. Like I thought, I assumed it was my allergies and sinuses causing the ear pain.
My eye doctor pushed for me to get an appointment asap with my primary care physician. I had no idea the extent of this virus. I went and my physician saw the vesicles IN my ear. I was given VALTREX and told to stay home and take care of myself. I am an EMT so I was not permitted to work because of the risk to patients.
It cleared up in 2 weeks or so I thought. My physician gave me the go ahead to go back to work but to take it easy. I did.
Just last week I went to a new primary care physician closer to where I moved and he mentioned Ramsay Hunt Syndrome. I never heard of it so I started doing research.
I’m lucky I had no lasting effects except a little bit of ringing in my ears and an occasional bout of vertigo.
This morning I started realizing that the past 3 days I have that weird left sided headache above my eye again and the ear pain. The left side of my face has bouts of numbness and my bf has been complaining of my eye twitching. I really hope this is not Round 2. I know I have been stressed the past few months and I am praying that relapse is very rare with this syndrome 🙁
My husband was diagnosed RHS! It started with facial paralysis and he was told Bells Palsy! He never had visible blisters near his ear! At first he was given an antibiotic! Then back to the ER for high blood pressure and was given prednisone! This was week 2! He took the prednisone and developed severe vertigo! We went to our primary doctor and was told RHS and given an antiviral and pills for the severe vertigo!! Nothing is helping! He can’t hardly walk around the house! Anyone know how long this lasts? Our next appt. (To far away for me,time wise) is an ENT for the vertigo! Did anyone else have to go to an ENT and did it help? I am scared for him and desperate for answers! Anyone with some insight please comment! Thank you!
Laura,
Your husband has my condolences and sympthy. I had to go to an EMT before I was diagnosed with RHS. By the time he was able to treat me the disease had done most of it’s damage. All he could do was offer me something for the pain and reduce the swelling. I was fortunate that I did not suffer from vertigo. Most of my immediate symptoms disappeared after six weeks. I still had ringing in my ear and a loss of hearning but it was obvious I had turned a corner. Since everybody is affected slightly differently, I’ll hope your husband recovers faster. The major comfort I got from my EMT was he understood what was happening and did what he could to help me.
I’ve been told there is a Facebook group for RHS (I avoid Facebook as a personal preference) and you may find some comfort there. You might also check out http://www.ramsayhunt.org/ Best wishes for a speedy recovery but nerve tissue is slow to heal.
Laura. I developed RHS in september of 2013. Unfortunately for me, the doctors in maine had no idea what they were dealing with. I was misdiagnosed for weeks . after 3 weeks or so i developed right sided facial paralysis. My tongue deviated. To the left, i lost hearing and eyesight on the right side. I also have significant balance issues. I finally went to Boston and was diagnosed with RHS. I underwent a significant amount of testing and it was determined that the RHS had infected my brainstem and caused permanent damage with regard to hearing, eyesight, balance and short term memory issues. In january of 2016 i siffered a relapse. There are many more things i could tell you but bottom line, go to the best doctors you can find and do all the testing they tell you to do. It could prevent more problems down the road.
Hi, I have just come across this site. I have been diagnosed with RHS two weeks ago. My major worry is my eyesight. I have paralysis on the right side,can’t blink etc but because my sight on the left has always been extremely poor I am extremely worried I won’t recover my vision. If anyone can advise I would be very grateful. I am seeing an ophthalmologist who advises to wait and see. Any advice please.
Carmel
Hi Carmel,
I picked up RHS just over 2 years ago, and was completely unable to close my left eye for about 9 months. I kept it ticking along with lots of eye drops, taping my lids shut at night and importantly, *always* wearing sunglasses (or those protective glasses they have for squash players when it wasn’t too sunny) when outdoors, and an eye patch while sleeping. I gradually recovered enough functionality to be able to close it, even after two subsequent attacks.
How much of this was just natural recovery and how much was due to me practicing screwing up my face until the thing closed, I can’t say, but it eventually got there. I still keep eye drops on hand just in case, and there is still a noticeable bag under that eye compared to the other one, but vision is still good (unless I’ve been staring at the computer for hours on end, in which case I need to rest it).
After 2 years, while I still feel some numbness, and smile and say my “O”s crookedly (though nowhere near as bad as for the first 6 months when the left side was completely paralysed), it’s not noticeable to the average person. I even had a new GP say to me that she didn’t notice I had any facial issue until I mentioned it to her the other week.
Good luck!
I am 3 weeks into my RHS. My question has to do with the dizziness. When will it end? I realize everyone is different but I’m looking for some reassurance that ” this too shall pass”. My journey started like everyone else’s. From what I’m reading, the symptoms can last for awhile.
I often wish I was a doctor just so I could give better answers. I was fortunate because there was no dizziness for me. I can tell you that that my ear took about 12 weeks for a 90% recovery and I’m still slowly recovering the last 10%. Anything else I tell you would have to be a guess. You might try at ramsayhunt.org. You have my best wishes and my sincere hope you get better soon.
Hi, Sandy. I am at this stage now, & was wondering how you’ve recovered?
My first episode of Ramsay Hunt Syndrome occurred when I was 44 years old. I am now 63 years old. I felt as if I were trying to give birth of a 15 pound baby through my ear canal while an electrified ccattle prod was inserted. It took three weeks of excruciating, lancinating pain, two visits to worthless ENTs who thought the pain was all in my head before my 7 year old son exclaimed, you have blisters on your eardrum! I had taught him to use my otoscope. I called up the third ENT, a fine otoneurologist and told him. He said, why Merry, you have good old Ramsay Hunt Syndrome. Unfortunately, it has occurred with increasing frequency of every 3-5 weeks. I lost most of my hearing on the affected side, and have a mild facial droop. I start Famvir at the first hint of a headache. I am on Topamax, which as an anti-seizure drug, helps prevent post herpetic neuropathy.
I also use Auralgon ear drops, which contains benzocaine, a local anesthetic to soothe the ear drum. I need narcotics every episode. The first episode was the worst, as I had no physician who understood the pain for three weeks. I unfortunately understood Vincent Van Gogh as I wanted to gouge out my entire ear to the middle core of my brain. I have recurrent RH as I have autoimmune diseases, but have learned how to manage each recurrence. Needless to say, I urge everyone to get the Zostavax vaccine.
WHat a terrible experience you had Merry. Shingles reactions vary so much it is easy to be complacent but my daughter had a similar response although not quite on the scale of what you describe. Our hearing is a gift we don’t value enough until it is threatened. Your pain sounds off the scale. I don’t know how you survived it to tell your story. I think the medical profession need to be alerted to what can happen so that they can respond quickly as well as recommend the vaccine. Thank you for sharing your story.
Merry,
The zostavax vaccine is a game changer. I also urge everyone to get it. It’s a shame that its use for RHS is not recognized.
I am 37 years old and I was diagnosed with RHS about 2 weeks ago. My symptoms started out 3 weeks prior to being diagnosed. I had seen a family doctor who placed me on Antibiotics due to cold like symptoms and cough that was not going away. I then started a having this sharp shooting/stabbing like pain in my left ear and I lost hearing. Weird noises and tinnitus, loss of taste on my left side, tingling and loss of feeling also started but was very mild. I was very worried so I visited 2 Urgent Care centers within one week and was still diagnosed with a cold/flu virus and placed on nasal spray and more antibiotics. One doctor insisted that I use the nasal saline wash while I explained to him that I cannot do it. I then was referred to see an ENT who asked me to keep taking the antibiotics and gave me antibiotic drops for my ear due to the stabbing pain I was experience and the redness in my ear which she described as a hemorrhage near the ear drum. I was only getting worse so I decided to search the internet for Top ENT in my area. I found one doctor with excellent reviews and made an appointment. He immediately after I told him my symptoms said: “not to put any of my colleagues down, but your description of the symptoms ins very obvious and you have RHS, do you know what that is?”
He made my case sound very simple and asked me to stop any antibiotics and start the antiviral meds. The pain started to disappear and my hearing was back about 20%. now 5 weeks into it I am starting to feel the shooting pain again…I feel for all of you but I am so scared 🙁
I will be calling the ENT once more for follow up. I will keep you posted…
I can’t help but feel sorry for you. It’s been over two years and I still cringe in fear with each earache. The pain doesn’t got away immediately and will take time. Make sure you stay in touch with your ENT. Since he recognized it immediately he seems familiar with the progression of the disease. You might also check out the Facebook group for Ramsay Hunt and http://www.ramsayhunt.org/ as another reader suggested.
You have all my best wishes. Just keep telling yourself it takes time. Good luck.
I was diagnosed with RHS nearly one year ago. I thought I was coming down with an ear infection so I went and saw my doctor was was told I had an outer ear infection and put on 10 days worth of anti-biotics. I felt ok enough to go back to work a couple days later before the real pain set in and had to have my wife take me to the ER. I was admitted but not diagnosed until the second day when the ENT came to see me. I was given anti-viral drugs and pain killers. I went home 4 days later but had a long road ahead of me. I ended up missing 6 weeks of work and had to go through 8 weeks of intense balance therapy which really helped me get rid of the vertigo I was suffering, regain my equilibrium, and helped a lot with dizziness. I was given quite a few exercises to do at home as well which I did even after the therapy was finished. I lost 5-10% hearing in my right ear which is believed to be permanent and still have a little numbness right around the opening into my right ear.
Thanks for sharing. Your comments make me very glad I was fortunate enough to avoid the vertigo. I can’t say my hearing is improving but after two years, my ear is still improving. I no longer feel like I’m in a plane doing a fast descent like I used to.
I’m into my 3rd week now and I’ve developed a severe headache (worse I’ve ever had) that will not let up. Has anyone else experienced this as a side effect from the meds or as an additional symptom of RHS? Can the virus spread to other areas or is it restricted to the initial nerve that was attacked?
Best to join the Ramsay Hunt Syndrome Facebook group. There is a community there. Also look at http://www.ramsayhunt.org/ Best of luck.
My question is specifically about the vesicles on my ear lobe and around my ear. Any tricks it get rid of these guys quicker. Mine seem to be lasting weeks into months now. I’m applying Zovirax and taking valtrex twice a day. Some of them seem to dry up but scab and others are still weeping. I am finding that they itch so bad especially at night…any suggestions? I’m ready for these things to be gone! Thanks!
I’m hoping someone else can answer your question because it sounds like your doctor is farther advanced than mine was. Mine proscribed an over the counter lotion mainly to prevent a secondary infection. You have such an upbeat attitude I’m reluctant to tell you the itching will continue far past their disappearance. It was several months before the itching became a stress indicator and not a constant companion. Hope it clears up for you soon.
I used cotton balls dipped in listerine mouthwash and it helped them to dry up quicker plus the antiseptic prevented any infections from getting started.
Thanks for responding so quickly. I was at a loss for that answer.
I am 3 days into my diagnosis. I started with an ear/sinus infection that would NOT go away despite 8 rounds of antibiotics starting in December of 2013. Valentines day my ENT decided that sinuplasty septoplasty (nose broken 2 X) and turbine reduction was the best course to relief the infection. I had a slight improvement but my ear pain never fully diminished. Having a history of severe ear infection that led to mastoiditis requiring a bilateral myringotomy in 2009, I was terrified that the mastoiditis had returned when the ear pain on the left side began to steadily get worse. On May 8, 2014, my ENT did another tube insertion but only on the left side. Hopeful, I thought that this would finally relief the pressure from the fluid that must be causing my pain. Unfortunately, I still did not get relief and it began to feel as if the pain was deep inside and spreading down into my neck. I returned for my post op still in pain and I was also convinced that I had developed oral thrush from the massive amount of antibiotics I had been taking due to the burning of my tongue and lack of appetite. The next week I began to feel sharp stabbing pain along with the constant throbbing as well as a stinging and burning like an electrical zapping sensation from my upper lip to my ear. After a visit to a local after care clinic, the prescribed 800 mg 3X a day of Acyclovir and told me to return immediately to my ENT because it appeared to be Ramsay Hunt Syndrome. My ENT confirmed the diagnosis and I’ve begun 60 mg prednisone for 7 days then to tamper off and hydrocodone 7.5 mg every 6 hours. The tinnutitis is driving me crazy because it is relentless. And the side effects from the Rx are miserable. I have suffered from long term stomach issues (GERD/peptic ulcer/gastritis/hiatal hernia) for years and my poor belly is not handling the medicine very well. Those of you that have already dealt with RHS… How long before you finally started getting relief from the intense pain. I’ve always considered myself as pretty tough but this is taking a toll of me. Thanks for any information and any advise as to what to expect from this.
My pain started to taper off during the third week after I started the medication. By the fourth week I was down to a few aspirin a day. As a side note, I was told make sure I ate before taking my medicine. Like you I had no appetite but my doctor suggested Carnation instant breakfasts, maybe insisted is a better word, and I had little or no stomach problems. Unfortunately the tinnitus will continue for much longer. You have my sympathy and my hopes for a full recovery.
Thank you so much.. Just knowing that there will be relief eventually is a comfort. I’m drinking Special K breakfast shakes with the medication to try to calm my stomach. I also have osteopenia (the precursor to osteoporosis) so I’m trying to consume as much calcium as postsible as advised by my ENT as well as take my weekly Fosamax. So glad you’re on the road to recovery and hopefully my journey will be rapid. I’m not liking being unable to function the way I’d like. I guess I need to learn patience. Thank you so much for your help.
Thanks for your thoughts.
I’ve just hit the 12 week mark with RHS. I had chronic ear pain one day then woke up the next morning with one side of my face paralysed – quite a shock. I was driven to the ER and the on duty doctor diagnosed Bell’s palsy, but gave me steroids and antivirals “just in case”. It was a further 3 weeks before RHS was diagnosed by an ENT specialist.
It took about 6 weeks for the intense ear pain and tinnitus to go away, but since then there has been no improvement in my facial muscles. Friends who see me say I’m looking better, but I’m wondering if that’s simply because I’ve trained my other side of my face to relax more so that everything doesn’t pull to the right. I’ve discovered I can now wiggle my ear very slightly, and my upper eyelid closes, but the lower eyelid, eyebrow and all cheek movements (like smiling) are still AWOL. I’m still using eye drops constantly and walking around outside with sunglasses on, even when it’s dark and stormy, to protect my eye.
Hearing some of the horror stories about hearing and balance loss I can count myself lucky (both were only minor for me), but it’s still a very frustrating condition that is hard to get any information about treatments from doctors in what’s a fairly large, modern city (Melbourne).
I agree with the other posters about the tiredness brought on by the illness. My energy levels have been completely sapped, to the point where I try not to talk to any colleagues at work after about 3pm as I find it difficult to string the words together to form a sentence, and I’ve cut back running and gym workouts down to next to nothing.
Here’s hoping for a smooth an steady recovery.
Thanks again!
I’m always glad to hear from people in the recovering stage. My personal belief is that your friends are right, you are getting better. I know, I haven’t even seen you but I also know recovery is slow. My doctor warned me that it takes time for the nerve to recover. He was right, it takes time. The worst is behind you, just keep moving forward.
Thank you for sharing your experience.
In December 2013 I woke up one morning not able to close my right eye ,the right side of my mouth had dropped. As well as this I could not talk properly or swallow anything and I had an earache. The paramedics came and said they did not think it was a stroke but took me to a & e, as much discussions decided to send me to j r hospital at Oxford. That was the start of a 12 week stay in hospital till they decided that it was r h syndrome. As I could not swallow as it had affected my vocal chords they inserted a stomach tube so I could be fed and watered. The final decision was that the infection had damaged 5 nerves in the right side of my neck given me tinnitus, not being able to smile,wiggle my nose,and close the right eye,to date two and a half years later,I can now eat and drink but have to use a straw as I still do not have proper control of the right side of the mouth, cannot wiggle my nose, or raise the right eyebrow. The tinnitus is bearable but a bit loud at times, but I can live with that. The only other thing is the loss of balance at times, but because your fitness levels drop you have to be careful what you try to do. All I can say is stay with it, life does go on but at a different pace.
Great site. I was recently hospitalized for RHS. I started antivirals and steroids 2 days after my face was paralyzed. I was able to blink within 24 hrs after receiving medication. Im currently on day 6 since the facial paralysis began. My ear pain is better. It seemed to start deep within my ear and is slowly moving outward. My only concern, even more than my face, is the tiredness. I dont know if its the meds or the RHS that causes it, but Im pooped. I went from running 10km a day to sitting around the house tired 24/7….
Thanks for your response. I’m always happy to hear from people recovering from RHS. It helps the people reading this post to know there is hope for the future. As always, I’m not a doctor, so balance whatever I say with advice from your doctor. I was tired but it was because I wasn’t sleeping well and the effort to ignore the pain was exhausting (I’ve never liked pain medication, I was only using aspirin).
I was diagnosed with RHS about 2 months ago. Initially, i thought an earache and went to my general practitioner who prescribed ZPak and a mild steroid. As the pain grew worse, i went to an ENT who prescribed me a more potent anti-biotic. I was developing soars within my ear but they were not visibile, only by touch. It was over a weekend and the pain kicked in and i called the ENT and he prescribed me a 3 weeks dose of Predisnose. At this point, I slowly started developing paralysis on the left side of my face(the eye was first), mouth, nose and within a few days had developed soars in and on my left ear. I went back to ENT and was formally diagnosed and put on Valtrex, 1 month prescription. As i am going on 2 months, i still have paralysis around the left side of my nose. my left eye is much better but still waters and my eyelid just feels weak which causes sensitivity to light. The challenge that I have right now is on certain days just feeling dizzy and fatigued. It just feels like my mind is fuzzy. I was hoping to understand if this is typical and being experienced by others at the 12 week mark.
I start every reply I make in this section with two statements, you have my condolences and I’m not a doctor. Somewhere around two to three months, I had a constant ringing in my ear. From what I read when I was diagnosed, dizziness is common because your inner ear balance can be affected. I was fortunate not to have that experience. Since this affects everyone slightly differently, here’s what I can tell you, you should be getting better. It’s slow, and takes a long time but you should be getting better. If any symptom is getting worse, I would definitely seek the advice of a doctor. Here’s hoping this is a very temporary phase for you.
Agree that this is a great website – others I found were extremely frightening. I am seven days in. Intense ear pain I count as day 1, full facial paralysis day 3, RHS diagnosis and pain meds day 4 (hope that was started in time). Meds are helping the pain, right side of face still not moving and hearing is quite bad. Balance seems OK but I’m not doing much. Anxiety over not knowing what comes next – can it get worse or only better from here. I have a great family to support me which helps.
You have my sympathy. As always, I’m not a doctor. I can only tell you what happened in my case. Judging where you are, the pain did not get worse for me. The next part is almost as bad though. As the nerve started healing, I had constant itching. Several weeks later, there were still times I felt like water was pouring down my face and out my ear. When it became months, I still had some itching. If I got stressed or tired, it got worse. It’s an illusion, don’t let it get to you. Having great support is important. Make sure they know how much you appreciate their support. You will try their patience. My best wishes to you for a full recovery. Unfortunately it won’t be fast.
Great website. I’m a little over 6 weeks out from my diagnosis. Most of my symptoms have improved, but the hearing loss has stayed about the same. An audiogram showed mild to moderate sensineural hearing loss. Has anybody had improvement in the hearing loss? And if so, how long did it take?
I don’t want to give you false hope but at 6 weeks I was still experiencing intermittent tinnitus and partial hearing loss. It took almost a year but my tinnitus is completely gone and my hearing is fairly close to what it used to be. As always, results may vary. Everyone is different.
This web site has be extremeily helpful, my wife came down with RHS about 2 weeks ago. Information from the first 2 or 3 GPs was very limited in as to what to expect. RHS was diagnosed 6 days after she woke-up with total hearing loss and extreme pain in both ears. She was treated for an ear infection up until the face dropped on day 6. The medication has now run out and it is back to the doctor tomorrow, while I am very impressed with some improvement in the facial movement my wife doesn’t share my positive view. Most of the web sites I have read so far have been all dome and gloom yours shows that there is light at the end of the tunnel.
Thank you.
It has been 6 weeks that I developed RHS. The first thing I had was dizziness and nausea and vomiting. Since I had a viral infection only 3 weeks before my brother , an ENT surgeon thought it was vestibular neuronitis and he asked me to start 40 mg prednisolone per day and stemetil to reduce giddiness and nausea. Twelve hours later I developed shooting pain in my right ear. The ear drum was blood red on otoscopy. Antibiotics also were started. Another twelve hours and I developed facial palsy on the right side and then I was put on antivirals also 1gm Valcyclovir three times a day thinking it to be RHS, but there were no vesicles. Twelve hours later a vesicle appeared near the external meatus on the right pinna and the diagnosis RHS got confirmed. The pain subsided to some extent but the giddiness was disabling . The facial weakness increased and proceeded to become total in a week . By the end of the second week facial recovery started but it has been painfully slow . I have recovered only 50 p.c. of the power, though dizziness is much less by the end of the 6th week.
I had a low grade fever all through my 2nd , 3rd and 4 th week , an evening rise to about 99.6 degree F which would subside on its own in about 4 hrs time , though my CRP and CBC were normal. I have developed bagginess under both my eyelids- I hope it disappears when I recover fully esp. with the eye closure. I still have grade II facial weakness . By the end of the day , the weakness seems to be more and also when the air conditioner is on , probably due to muscle spasm. I also found that my right ear was sensitive to noise and cellphone in my right ear sounded louder and intolerable . An audio gram revealed high frequency loss.
It has been tough for me and my family but since recovery has started , I hope and pray that I become as close to as I was 6 weeks earlier.
Thanx
It’s been 12 weeks, 3 of which were spent in the hospital – 3 lumbar punctures, MRI’s, interveneous meds (up to 9 bags hanging at one time).
I still have tinnitus and 95% hearing loss in my left ear. The most alarming symptom is that my equilibrium is no where near better and I feel that this disease is progressing and not resolving. My tounge and hard pallet on my left side is numb and my taste on that side seems to be diminished.
I do have an IGA deficiency and I feel that this may have attributed to my RHS.
Unfortunately, I was not provided Asyclovere within the 72 hours and for that, I feel that I may not ever get my balance back. I am going to seek the help of an Acupuncturist to see if I can resolve some of my facial paralysis.
Time, time will tell.
You make my bout with Ramsay Hunt sound like a walk in a park. I’m not familiar with Asyclovere. It was well over 5 days between first symptoms and my being diagnosed with Ramsay Hunt. At that time I was given an anti-inflammatory and an anti-virus, neither was Asyclovere. I’m not sure there are any miracle drugs for this. I can only wish you good luck and hope you have a full recovery.
I am 8 days into this. my entire right side of my face is paralysed and the head pain is intense. I get quite emotional also, up one min and crying the next! I was wondering how long I will be bed bound with so much head pain? How long will I be out of action for work ect? I am 43 and female.
You have my sympathies. I’ll repeat I’m not a doctor and this affects everyone differently. In my case it was two weeks before the pain was manageable enough to return to work. I had two more weeks of gradually lessening pain and yes, I was very short tempered during that time. All I can do is wish you a speedy recovery.
Very similar to my experience except I had no visible rash. I’m five weeks in and wondering how much longer it will last. Due to the lack of a rash I wasn’t diagnosed for a week so I may have started the anti virals too late to shorten the course of the illness. 8 weeks is a long time to have symptoms but I guess it shows me 5 is not surprising and I could see another month or two of it. Health is so precious.
Oh by the way, have all your symptoms cleared up now and if so how long did it take? I have about the same level of numbness you describe and about 30% hearing in my left hear.
You have my deepest sympathies on having endured Ramsay Hunt. Everything I’ve read and seen suggests that it takes longer in some than others.
To answer your question, at about two months the pain was gone. At four months I was still having periods of intense itching in my ear and face. By six months some scaring started to appear and the itching was only when I was stressed or tired. Around six months the numbness was gone and I started using my left ear again for my cellphone or Bluetooth. Almost a year later, I still feel the itching at times but nowhere as intense. My ear still doesn’t feel quite right, almost like it hasn’t adjusted for air pressure properly. I can tell it’s getting better but very slowly. I was very concerned the first time I had to fly after my recovery but there were no problems.
I wish you a speedy recovery and hope your hearing fully returns. It’s taken a long time in my case but I do see constant, slow, improvement.
Join the Ramsay Hunt group on Face Book.
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 after.) I then went for a 2nd dr to make sure. Then they found it again in spinal tap again. My thing is I can’t take steroids bc it seemed to activate the RHS more. So I was advise to never take steroids again. I felt like all the meds was making it worse on me. I was having way to many seizers on the meds and less off meds. So I have a lot of weakness on my left side of the body. The only time I notice my bells palsy is when I start to stress or go into a seizure. I feel better off all the meds bc I come out of the seizure faster. I had 67 last yr and 17 so far this year. It is a lot better then when I found out in 2008. I have notice nerve spasms more and my spine is dipping in more which causes my spine pain. I know the last time I went to the dr I has sever nerve damage on left side the right but starting to notice the right side spasm now. They put me on Geadone (sp) worked great but $500 a mth with Ins was crazy. My question is if I go to a dr again can they tell me how worse my RHS2 has gotten? I don’t want to be on all that meds if I’m going to sleep my life away. Anything that make my heart race I go into a seizure. I’m 41yrs old now and just don’t know where I stand or If I waited to long. Sorry so much just try not to think about what the out come is going to be. Thank you 🙂
I try to respond to all the responses to this post because I feel so bad for anyone that’s experienced Ramsay Hunt but your response gave me pause. I’m glad to see you’re in the care of a doctor because it sounds like you have a lot more problems than just Ramsay Hunt. Keep in mind, I’m not a doctor. Your doctor knows far better than I do but my doctor described Ramsay Hunt Syndrome as a relatively short term viral infection of the facial nerve. The long term effects are caused by the damage done to the nerve and how well the nerve is able to heal. My doctor could only tell me that cases of the infection re-occurring were very rare. I have to believe that seeing a doctor at this time would be in your best interests. You have my sympathies and my best wishes.
Please note that there are 2 specific forms of Ramsay Hunt, one is much worse than the other. Unfortunately for the lady above, and myself, it would appear she has the worst of the two. I have had several relapses. I have permanent damage in my brainstem as a result. I have severe nerve damage in both legs and arms but have found a wonderful doctor in Boston who is going to be performing surgery on my left leg and then my arms will follow. I too have severe issues with weakness but on the right side of my body. I can tell with a relapse is coming as my eye will not track and the entire right side of my face droops and my tongue deviates to the opposite side which is a direct sign of infection in the brain. Please note that Bell Palsy are two completely separate things and are not related ! Anything that jumps midline, i.e. shingles, is not what it appears to be ! Shingles in and of itself will not jump midline. That is another sign of Ramsay Hunt. Its ability to affect both sides of the body.
My best to you all. I know this ride for me has been far too long !!