Donna’s story

After a serene holiday in Turkey in October 2023, I was misdiagnosed with Bell’s palsy instead of Ramsay Hunt Syndrome.

In retrospect, I was already run down before the holiday, suffering from a mouth full of ulcers and what turned out to be two boils.

Two days after returning home, I fell ill. I had severe head and ear pain and felt dreadful. Assuming I had COVID – since I had never had it before – I took a test, but it came back negative. I spent most of my time in bed, in pain but unable to sleep. Painkillers were ineffective. On the fourth day, my tinnitus became unbearable, so I had a telephone appointment with my GP. I requested stronger medication, thinking it was a Ménière’s flare-up, something I had experienced on and off for 30 years. The medication was to be collected the next day. By then, I was vomiting and experiencing terrible vertigo.

I had moved into the spare bedroom, and during the night, I became so distressed that my husband heard me. When he saw me, he noticed that my mouth looked strange. We called 111, and they sent an ambulance immediately, suspecting I was having a stroke.

During the initial examination, I mentioned a rash on my chin, but they said they couldn’t see it. In the ambulance, I was asked if I had ever had shingles before. I replied that I had – three times – and mentioned that my chin felt like it had shingles. However, nothing was examined or noted.

Before developing Facial Palsy

At the hospital, I was assessed for a stroke. My arm and leg movements were fine, so I was diagnosed with Bell’s palsy. I mentioned the rash on my face again but was ignored. A nurse patched my eye shut and gave me additional dressings. I had to ask why, as I hadn’t realised my eye couldn’t close or move. I was given steroids but no further information about Bell’s palsy or follow-up appointments.

Desperate for guidance, I found the Facial Palsy UK website, which helped me manage my eye issues.

About a week later, I was called in by my GP and referred to the ENT department at the hospital. My GP suggested I take two months off work, which shocked me – mainly because of my unclear speech and the nature of my job. I requested an information sheet on Bell’s palsy.

At the hospital, the noise around me was unbearable. When I saw the specialist, the first thing he said was, “What’s that rash on your face?” He held his head in his hands. I told him I had mentioned it several times when I was first brought in. He sighed and said, “You don’t have Bell’s palsy – you have Ramsay Hunt Syndrome. We’ll need to run tests and check for brain damage.”

It was too late for antivirals. I underwent three hours of tests, including various hearing and facial examinations. I was given five facial exercises to do 100 times daily and told to wait for a brain scan. After two weeks, I had to chase up the appointment. When the scan was finally completed, thankfully, it showed nothing concerning.

I was also tested for Lyme disease, as I had been bitten during my holiday.

Over the next three months, I received no further check-ups regarding my facial recovery or hearing improvement.

It wasn’t until January that I was seen by the eye clinic, where they found no visible damage. However, an optician’s appointment revealed a decade’s worth of deterioration in my vision, which both the optician and doctors attributed to the steroids.

Donna in February 2024

For my own mental health, I began a phased return to work in January 2024. Everyone was incredibly supportive, ensuring I didn’t overdo it and helping with things like carrying my bags. By June 2024, I was back to full-time work. While I can manage my job, anything beyond that is exhausting. Partially because of this, I have decided to take early retirement this year.

I was discharged from the hospital in June. At that appointment, they asked if I would be willing to help train doctors in Nottingham about Ramsay Hunt Syndrome, which I agreed to, but they never followed up. When I asked if I would need to continue the facial exercises indefinitely, they simply said, “Yes.” I was initially graded as a level 5 on the RHS scale and discharged at a level 1–2.

Symptoms I Experienced with Ramsay Hunt Syndrome:

• Wheezing when breathing
• Dry mouth and lips
• Droopy eyelashes
• Aching eye
• Sensitivity to light and dust—I sometimes had to work in sunglasses
• Tinnitus—up to three different noises at once. At first, I couldn’t hear my car’s engine properly. In the kitchen, I heard metallic and boiling sounds, and passing cars made a whirling noise.
• Weakened immunity
• Difficulty eating – food went everywhere. I had to drink from a straw for a month, as any liquid on my teeth was excruciating.
• Fatigue
• Panic attacks as I recovered
• Hardening of the left side of my face
• Inability to smile for two months
• Nerve pain and headaches
• Nausea and faintness
• Blurry vision
• Weakness and pain in my left leg – I could only walk a few steps and sometimes couldn’t stand. The cause remains unclear; the physiotherapist believes it was connected to RHS, while one doctor suspected it was due to my weakened immune system at the time.
• Strange dreams

Symptoms I Still Experience:

• Cold weather triggers pain behind my ear and in my jaw.
• My eye constantly feels dry, requiring drops day and night. Sometimes, my eyelid droops further. Since August, I’ve had floaters in my eye due to parts of my retina breaking off.
• My lips remain dry.
• I experience intermittent facial twitches.
• My face feels stiffer on some days than others.
• Occasionally, I miss my mouth when eating or drinking.
• My speech deteriorates when I’m tired.
• Walking becomes difficult if I overexert myself.

Donna now (2025)

I’ve had shingles again despite receiving the vaccine.

I can no longer tolerate facials. Makeup sometimes irritates my skin, so I wear less than before. The leg weakness means I can’t wear killer heels for too long.

My family has been wonderful – though they’ve teased me at times. My granddaughter even compared me to a pirate!

My friends have been incredibly supportive.

I have laughed and cried.

I count my blessings – I know I’ve been fortunate.

I would say I’m about 90% back to normal – but I’m still not me.