Patient Comments: Ramsay Hunt Syndrome - Symptoms

Question:

What were the symptoms associated with Ramsay Hunt syndrome in you or someone you know? Submit Your Comment

Comment from: JenB, 45-54 Female (Patient) Published: November 19

I was diagnosed with Ramsay Hunt syndrome (RHS) 5 years ago while undergoing chemotherapy. I lost hearing in one ear and still have some slight paralysis on one side. I still have extreme fatigue and dizziness. I have had 4 re-occurrences that seem to only manifest with vertigo, dizziness, ear pain and overall feeling terrible. I start with the antiviral medicine and steroid right away and recovery time is several weeks to get back to my baseline, which will never be the same as before the RHS. Wonder if anyone else experienced this.

Comment from: Dalia, 19-24 Female (Patient) Published: January 12

I was diagnosed with Ramsay Hunt syndrome (RMH) 10 months ago. I woke up one day and felt that my face was dropping, I ran to the mirror to see that the left side of my face was paralyzed, I couldn't smile, speak or close my eyes properly. At the emergency room a doctor diagnosed me with Bell's palsy, prescribed some corticosteroids for me, and physiotherapy. Each day my symptoms were developing quickly, I could no longer taste food on the left side of my tongue, I couldn't open my mouth properly to take a bite of a burger, the paralysis got even worse, and the pain! The pain was the worst pain I have ever experienced in my whole life; ear and neck pain. After a month I went to another doctor, and he finally diagnosed me with RHS. And basically, unlike Bell's palsy, the prognosis for RHS gets worse every day you're diagnosed late, full recovery is guaranteed 72 hours after onset. Well, I was late for a whole month. I'm much better now, the pain is gone, I can taste food again, but my face isn't okay. I can’t smile properly, and my eyebrows are unleveled. My family and friends are very supportive and they say I look so much better now, but at the end of the day, I know I will never be the same again. But I'm trying not to think about it, and that's the hardest part. Good luck.

Comment from: Clarice, 65-74 Female (Patient) Published: December 27

I had an on an off severe earache since the first of December. After about two weeks of this, I woke and the pain was so severe I could not stand to touch my face from my chin to ear, and across my head to midline, all pain on the left. I called my doctor and was seen right away. He started me on an antibiotic and gave me a steroid injection. The next morning I woke with an itchy rash around my ear, down my neck and around my neck to chin. I called him again and was seen quickly. Diagnosis was shingles and I was given Famvir and Lyrica. Now two weeks later, here it is Christmas Eve. I still cannot turn my head, cannot stand anything touching my ear or any part of the left side of face, neck and to chin. I can barely stand to brush my hair. The rash is all but gone, but the itch worsens daily. I can only hear ringing and buzzing in left ear. My balance is way off when I stand, sitting is fine, but when I stand, I wobble or list to the left. I am slightly slurring my words, face feels tight to the ear from the edge of mouth, eyes itch, and I caught myself closing my left eye when I am reading. I can't taste anything, it all tastes the same. I typed in my symptoms yesterday, and found this site and Ramsay Hunt syndrome. Thanks to you all, I don't guess I am dying after all. I will be calling my doctor on Tuesday morning. He gave me some hydrocodone for pain, but I do need the valium because I am a nervous wreck.

Comment from: MCLAIREM2, 55-64 Female (Patient) Published: April 19

I came down with Ramsay Hunt syndrome in October 2015. Today I still have a 40 percent hearing loss in my left ear and my balance is so bad I can't walk across my bedroom. No driving, no shopping. I am convinced I will not recover anymore then I have. Very sad!

Comment from: Bud, 55-64 Male (Patient) Published: April 18

Onset of the virus took about 5 or 6 days, starting with soreness in the ear canal and tiny blistering on my tongue. Over the next several days the ear pain increased and my right eye began to blink less often (more obvious in hindsight). Overnight on the fifth day blisters appeared in the ear canal and on the side of my head, my right eye would not close and facially paralysis advanced quickly from forehead to my lower jaw area. Fortunately the local urgent care center had a doctor on staff who was familiar with the symptoms of Ramsay Hunt syndrome and immediately wrote prescriptions for anti-inflammatory drugs and anti-viral medications. Four months later I am about 80 to 90 percent recovered with a few remaining conditions or challenges. A frustrating condition is the loss of taste and or a burning feeling on the top surface of the lead section of my tongue. Food and drinks taste different or not very good. A perfect example is red wine. Now almost all red wines taste sour, as if it is passed its date. I do not have any idea how to minimize this or if I just need to accept this going forward.

Comment from: Marcelina, 45-54 Female (Patient) Published: December 13

I got Ramsay Hunt syndrome after I got diagnosed with shingles in my head. It’s been one year and my right eye is weak, I can close it but it shows half closed when I open my eyes. My mouth is 90 percent better. I wonder if vitamin B12 helps even after a year, or coconut oil and oregano oil.

Comment from: JackieM, 45-54 Female (Patient) Published: March 21

I was diagnosed with Ramsay Hunt syndrome a few weeks ago. My ear and throat were affected, my eyes were not, luckily. I have made a great recovery except I have no balance anymore. I can't drive, exert myself, and can't work. I am going to have an MRI and balance testing to see where things are at and I will start physical therapy. I want to go back to work; am too young to retire. I wonder if anyone got their balance back enough to drive and work.

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Comment from: Geri, 45-54 Female (Patient) Published: August 30

I was diagnosed with Ramsay Hunt syndrome while on vacation. It was brought on by the immunosuppressants I was taking for neuromyelitis optica. I was hospitalized for three days with IV antiviral drugs. Frustrated that the recovery is taking so long. Ear infection and a hole in my eardrum have made things worse. I am still experiencing vertigo, nerve pain and numbness; a little concerned after reading all the responses who share that these symptoms could last a long time. I want my old, boring life back! Hoping for relief on a daily basis.

Comment from: Elvi, 65-74 Female (Patient) Published: June 06

I had Ramsay Hunt syndrome 2 years ago. I had terrible pain in my throat for a week. The doctor thought it was tonsillitis and gave antibiotics, no good. After a week the right side of my face was paralyzed. I was taken to the hospital and given 12 steroids a day, as well as calcium tablets and stomach liners. I lost 1 1/2 stone in 4 weeks. Steroids soon did their work and my face was better in about 2 weeks. Everything recovered except I am left permanently with vertigo and a dodgy throat. All in all very lucky to be able to carry on as normal.

Comment from: contractor, 35-44 Male (Patient) Published: May 13

I had complete paralysis on one side of my face due to Ramsay Hunt syndrome. No taste on one side and my eye on same side will not close. I was numb, but that has gone. Taste is back and some feeling in my lips. I wonder if I can expect any more recovery.

Comment from: japke, 55-64 Female (Caregiver) Published: March 10

I'm a Swiss doctor in Africa. Six days ago I saw a child with chickenpox and said to myself, fortunately I've had chickenpox as a child. Within days Ramsay Hunt syndrome symptoms began; irritated right ear from glasses, a small area with blisters on the right side of my neck, pain attacks in neck and right ear, and since 10 hours facial paralysis (yesterday I drove for several hours with all 4 windows open). I treat it with MMS drops.

Comment from: Jette, 55-64 Female (Patient) Published: February 02

It is now 5 years ago since I developed Ramsay Hunt syndrome RHS). I was rushed to hospital with seizures and severe vertigo. Within 2 days I developed facial paralysis down one side of my face affecting speech, hearing, ability to eat and drink, my eye sight, and my eye would not close. Anti-viral and other medications ensured that after a week I was able to get out of bed. My hearing improved. I was not given any support other than pain killers. After 5 months I returned to work as a teacher. The ignorance of my employer (I was then disabled) meant that I was eventually unable to work and my health deteriorated to being suicidal. I had CBT (cognitive behavioral therapy), and gradually began to improve. I also paid for electro-nerve stimulation and exercises at a private clinic. Over time this has greatly improved my facial nerve. Exercise has improved my balance and confidence, and I now volunteer and make every effort to get my life back. People still question and think I have had a stroke and I tell them it is RHS. Of course they have never heard of it. Every day is still a challenge.

Comment from: sandy, 55-64 Female (Patient) Published: October 31

I was diagnosed with Ramsay Hunt syndrome (RHS) when I was 27 and I am now 63. I had typical symptoms of blisters in my throat and facial paralysis on my right side. I was admitted to hospital with an excruciating headache and operated on to relieve the pressure on my facial nerve. I was in hospital for 2 weeks. At the time there wasn't a lot of information about the condition. I started to get a little movement in my face exactly six months later but have never fully regained the movement of the right side of my face. I hope these days there's a lot more that can be done for people who are struck with this dreadful condition.

Comment from: TJBord, 35-44 Female (Patient) Published: October 23

I have had Ramsay Hunt syndrome for about a month now. I am starting to get more movement on the left side of my face but I am still suffering from quite a bit of ear pain and now have pain down the left side of my neck. I can't seem to get enough sleep either. I appreciate hearing everyone's stories. I feel like I don't get good prognosis from the doctors, as to how long I am going to have to live with this, so it helps hearing everyone's different situations.

Comment from: Kirk, 45-54 Male (Patient) Published: August 11

I was first diagnosed with Ramsay Hunt syndrome almost two years ago. It started with a severe rash and pain in my ear which quickly spread over the right side of my face from the mid-line on my chin to about an inch behind my ear. I experienced intense pain and numbness that centered on my ear that also included a burning sensation on my tongue and cheek. The pain has subsided but it continues to be significant and now includes a major tooth ache in the molars on that side of my face. Gabapentin or Lyrica have been used to lessen the pain but they only help diminish the pain. Pain and numbness are a part of life now.

Comment from: Jo, 35-44 Female (Patient) Published: May 09

The crack of my ear was extremely itchy for about 4 days. I went to the doctors on the Monday and they said it was infected so gave me 500 mg flucloxacillin and also cream to put on it. The following Friday I had to go back to the doctors and it had got worse and all round my head was a strange sensation and I saw a different doctor and he knew straight away that it was Ramsay Hunt syndrome. He has prescribed me with acyclovir dispersible tablets 800 mg. I have been taking these for just over 3 days and the strange feelings have gone round my head and the blisters have scabbed over. I’m so relieved.

Comment from: Dave, 45-54 Male (Patient) Published: April 16

My symptoms were nearly identical to Julie, but different progression: Day 1 - Constant bitter taste, bad right ear ache, tactile pain on and under the ear (antibiotic treatment). Day 3 - Malaise and nausea. Day 4 - Sudden right facial paralysis. Day 6 - Blister breakout in/on ear. I started acyclovir. It was not until I found this site that I went to the emergency room (ER) on a late Friday and told ER doctors what I had, and they prescribed antiviral. So far, two days later no improvement.

Comment from: barney, 45-54 Male (Patient) Published: February 10

Just over a year ago I went to the doctors to be told I had Bell’s palsy. It all started with an ear infection in my right ear, I was in agony for over a week and took pain killers just to numb the pain. A few days later I came home from nightshift freezing cold and shivering I went to bed. I woke up in the afternoon and my face didn’t feel right. I looked in the mirror, couldn't believe my eyes; my face dropped down the right side. I thought to myself not a stroke, wrong side. I went to the doctor’s first thing she said was Bell’s palsy and she explained and gave me steroids for 2 weeks. She also made an appointment for the hospital. When I got my appointment through that's when the doctor explained I had RHS (Ramsay Hunt syndrome). I had treatment for 6 months. I no longer have the facial distortion but my right ear still hurts on the outside and my facial muscles on the right still don't feel as if they have recovered yet. I was going to go back to the doctors but I don't know if they could prescribe anything as this seem pretty permanent.

Comment from: Beebeenc, 35-44 Female (Patient) Published: January 23

I have outbreaks of Ramsay Hunt quite often, due to an immune issue. My early symptoms include: beginning approximately 3 to 5 days before outbreak I feel extremely tired and have a flu like feeling without congestion. The feeling of my body is like constantly walking in chin high water. I have sensitivity spots on my head (the smallest breeze hurts) and stinging on my head and same side of face (like when you get water up your nose). My inner ear will start feeling like I'm about to get an inner ear infection, with, vertigo and shooting pains and burning. My eye starts to feel irritated and waters. Foods and drinks taste lousy and my throat starts to feel scratchy. Sometimes I will start a small drooping of my mouth. Finally, I will have a burning feeling of the ear affected and, within hours, I will have blisters form and my outer ear will be red, swollen and burn as though a hot iron left second degree burns.

Comment from: Bella, 65-74 Female (Patient) Published: June 13

I have had Ramsay Hunt syndrome for one year. My initial symptoms were a black ear with blisters. I had paralysis on the right side in a couple of days. The condition was not identified immediately as I was with an HMO and my primary doctor didn't know what it was. I did not get Zovirax but I had two antibacterials and prednisone. I had two prescriptions of prednisone and then was seen by an ENT. He doubled the prednisone. I had what felt like electrical shocks that would last a minute until I got the stronger prednisone. I slept most of the first two months. The MRI showed damage to the seventh and eighth nerves. I have lost most of my hearing in my right ear and have pain in the ear almost constantly as well as in the side of my head. I can blink and my face is looking almost normal. My mouth does not close normally on the right, and I have trouble drinking and eating certain things. I take gabapentin three times a day for pain. I still need far more sleep than normal. I am still using ointment at night and drops in my eye for dry eye. One specialist is suggesting cosmetic surgery, fillers, or Botox. I will see him again this month. Also I have an appointment with my neurologist. I was told that my ear pain is phantom pain and could last years or a lifetime.

Comment from: Stevefrommarple, 55-64 Male (Patient) Published: November 21

I too was diagnosed with tonsillitis for the first week and ended up in Accident and Emergency. I took the proper medication for Ramsay Hunt syndrome a week late but now after 3 years I am still unable to work due to vertigo. The ENT specialist told me not to drive but the Department for Work and Pensions (DWP) said I was ok to. I listened to the latter as they pay your benefit. I am now my wife's care giver. I don't think I will ever go back to how I was before. Good news is that I got my illness at 55 and being a former civil servant I could have retired at that age. My older sister has Parkinson's disease but they say there is no connection.

Comment from: glo, 75 or over Female (Patient) Published: February 26

Six years ago I was hospitalized for one week with Ramsay Hunt syndrome and cellulitis in my right ear as well. It left me with loss of hearing in my right ear and extreme vertigo. My physical therapist was a lifesaver as he helped me with my balance issues. He made it clear from the beginning that (although he couldn't cure me) his job was to help me recover my balance if I felt I was about to fall. After this very snowy winter of being housebound I am going to continue treatments.

Comment from: ladinred26, 45-54 Female (Patient) Published: October 15

I have had Ramsay Hunt syndrome for just over two months now. I can barely close my eye when I squeeze very hard and I have no movement on the right side of my face.

Comment from: Angel, 55-64 Male (Caregiver) Published: February 09

My family member had severe Ramsay Hunt syndrome.

Comment from: surfdoggy1, 55-64 Male (Patient) Published: October 09

I got Ramsay Hunt syndrome (RHS) a month and a half ago now. I guess that I'm lucky, it’s not near has bad has some of these that I have read. My biggest problem is staying focused and trying to keep the nerves calm. I am making a lot of mistakes at work do to this and really need to find a cure.

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