Matt’s Story

Matt was misdiagnosed with Bell’s palsy when in fact he had Ramsay Hunt syndrome. Here he shares his story.

Matt before RHS

Before Ramsay Hunt syndrome

My symptoms started on 3rd August 2017 with what I thought were ulcers at the back of my tongue, I also had a slight sore throat but at no point did I feel unwell. I went to the chemist and got some ulcer treatment. For the next couple of days I still had the ulcers and had a horrible taste in the back of my mouth. On 5th August at 7:30 pm an intense stabbing pain started behind my right ear. I have had ear, nose and throat (ENT) problems all my life and I am all too familiar with inner ear infections, but this was different. Rather than an ache this was a strong stabbing pain and in a different place to usual. I took paracetamol and ibuprofen but it had almost no effect on the pain.

While driving home from work that evening at about 11:30 pm the right hand side of my face started to feel unusual. There was no pain, other than the earache, but something just didn’t feel right. I put this down to being tired and the earache. When I got home an hour later I was brushing my teeth and noticed that my face was feeling stiff, but again thought I just needed some rest.

In the morning I woke up with noticeably reduced movement on the right-hand side of my face. I went straight to the emergency out of hours GP who diagnosed Bell’s palsy but due to my age and previous ENT history she was unable to prescribe steroids herself. She arranged an emergency ENT referral for me that morning so I went straight to the hospital. After blood tests being taken, ear examinations and physical examination of my face I was diagnosed with Bell’s palsy. They prescribed a course of steroids to be started the following morning. This was because the pharmacist said it was too late in the day to take the first dose, as it wouldn’t leave enough time to continue with the morning dose the next day.

Facial paralysis struck

Facial paralysis struck

This all happened on the Sunday and by the end of the day I had lost a lot movement, I was now unable to close my eye fully and my mouth movement was much more restricted. By the time I woke up on Monday I had lost all movement on that side of my face, I was now unable to close my eye at all or move any part of the right-hand side of my face. Monday was a day of rest at home and I was due to go out for a colleague’s leaving meal in the evening. Originally I wasn’t going to go as I felt too self-conscious, in the end I did go and I’m glad I did because it gave me a small confidence boost. It wasn’t easy eating, I had to push food back into my mouth that was building up between my gums and my cheek and I had to drink through a straw but I managed.

Tuesday was when things took a different turn. I had been told by the hospital that I didn’t need to take any time off work so after a day of rest Monday I decided to go back into the office on Tuesday. While I was walking through the shopping centre to the train station I came over funny. It all happened very quickly, one minute I felt fine then the next minute the room started spinning, everything seemed loud, I was hot, my heart was racing and I had pain up my left arm. I was obviously very scared about what was happening and approached the security guards who called an ambulance for me. When the paramedics arrived they carried out some tests including an ECG and found that my heart was rapid but there was no sign of anything of serious concern so they took me in for further tests. I was thoroughly examined, it was suggested that I had experienced vertigo and in turn an anxiety attack. The doctor in A&E was very thorough and patient and went through my full history and re-diagnosed my case as Ramsey Hunt syndrome. This was due to the ulcers in my mouth, which were likely shingles blisters, the earache, sensitivity to sound and vertigo. Unfortunately it was now too late for antivirals to be prescribed so all that could be done was to refer me back to ENT for further check ups and an MRI was arranged to rule out any more serious causes.

Over the next few weeks I became a lot more self-conscious and aware of my face. I had to adjust to always carrying sunglasses to protect my eye not only from the sun but from even the lightest of breezes. I had to adapt to eating and drinking, and at times I was also lisping when I spoke. Every doctor I saw gave me the same time-frame for recovery which was, “we can’t say”. After two months I started to get movement back, initially small movements but over a couple of days most of my movement came back. I am now six months after the symptoms started and I have most of my movement back however I still experience stiffness on my right side, my face often aches and I get twitches. I also have strange movements from where the nerves have grown back wrong, for example when I close my left eye my right eyebrow goes up and if I smile as wide as I can my right eye closes.

Six months later

Six months later

It has been a long process and I am still waiting for physiotherapy to be arranged to help with the tight muscles on my face but I am starting to feel back to my normal self. My smile is still not as even as it was but it is certainly not as noticeable as when I was first diagnosed.

For me by far the worst part of my facial palsy was not being able to close my eye and having to tape it closed at night and use eye drops every hour, sometimes more. I found this to be the most restrictive of all my symptoms as I had to carefully plan social activities around being able to administer drops but also making sure I was avoiding dusty environments or prolonged exposure to bright sunlight.

From my experience there is very little awareness of Ramsey Hunt syndrome, or even Bell’s palsy and although doctors were very friendly and supportive I did find that the most helpful resources for me were online, in particular Facial Palsy UK. I sat reading article after article and watching videos on how to tape my eye correctly and thanks to the advice of others and the information from Facial Palsy UK I felt less isolated and more informed of the journey ahead.

Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.

Last reviewed: 21-02-2018    ||    Next review due: 21-02-2021