Vhari is a nurse and keen runner with her own online cosmetic business. She had just turned 40 when Ramsay Hunt syndrome turned her life upside down.
I’m a wife and mum of two and I work as a cardiology nurse. I also run an online cosmetic business and I love running. I am generally a positive person who loves life.
It was summer 2018 and I was in the midst of training for my fourth marathon. I had unfortunately had three recent deaths that were all very close to me and I had just celebrated my 40th Birthday. There was a lot going on. My business was going great but very busy, which is only a good thing, and my work as a nurse was hectic. I was being called on for emergencies and doing extra hours at work to cover short-staffed shifts.
In August 2018 I developed a sore throat. I kept running and working, and took regular painkillers, but they didn’t help. My throat only felt sore on the right hand side but this continued for a week. On the Thursday I looked in my mouth on my lunch break and I could see one blister on the roof of my mouth and my throat looked red. I took more painkillers but it didn’t improve.
On my way home from work that evening I was drinking a can of Irn Bru (so stereotypical being Scottish) and it didn’t taste right, it was like the flavour was missing. I got home and sorted everything out for my overnight on call and went to bed around 10pm. I didn’t get called out overnight and my alarm went off at 5:45am. That’s when I realised something was wrong. My face felt weird, I couldn’t move the right side of my face and my right eye was so irritated. I took a video and shared it with my friends privately on Facebook messenger (see video below). I was in shock as I honestly had no idea what was wrong. So I decided to get dressed and go into work. I made a coffee as I always do. I couldn’t apply my makeup because my right eye was so irritated and it wouldn’t stop running. Half an hour later I was in the car on my way to work and had decided if my face wasn’t any better I would pop to A&E to get checked over. As I was driving into work I kept trying to drink my coffee from my travel mug, however the coffee was running out of my mouth and I couldn’t control it. My face was getting worse and I thought I was having a stroke! I was petrified.
At 7am I went down to A&E where I was seen straightaway. They took bloods and a full history, and did an ECG. By now I couldn’t speak properly. The stroke team were informed and they saw me within 15 minutes, I was sent for an urgent CT scan. By now I was thinking… OMG what is happening to me? My bloods came back normal, my ECG was normal, my vital signs were normal. I was normally fit, well and healthy. My CT scan also came back normal, much to my relief. The stroke team then referred me to the neurology team. They took my history and examined me and then finally diagnosed me with Ramsay Hunt syndrome. I had no idea what this was.
I was given an eye patch, eye drops, steroids, antivirals, painkillers and sent home. I was given a follow up appointment with ENT four days later. I went home and it was a complete blur. I cried for what seemed like days. I couldn’t talk, taste or swallow. I somehow had to swallow 16 tablets! I had to tape my eye down. I couldn’t concentrate or focus. I took to my bed for pretty much four weeks. It was the end of the school holidays but I couldn’t look after my children. I couldn’t stay awake, I was dizzy and had a permanent headache above my right eye that lasted four months. I refused to see anyone but I knew that I would raise awareness in time so I took pictures and the odd video. I saw a registrar at my outpatient appointment with ENT. She couldn’t tell me what I needed to hear. I asked “will I ever smile again?” She couldn’t say. I broke down. My husband was there to support me, he was my rock! I had a hearing test that day also. My hearing was hypersensitive (which is great when you live with two noisy children).
I went home and cried and cried and cried. I ran my own makeup business. How would I ever show my face again? I hid from everyone for weeks. I hated the way I looked plus I was beyond exhausted. I’d just sleep and sleep and sleep, I couldn’t read or focus as my eye was so irritated. Socially I was a mess. I couldn’t handle any noise or most social situations. Even though I was always the life and soul of any party. I didn’t feel like me anymore.
Eventually, things improved. I saw the ENT specialist at my next appointment which was six weeks later. He said I had made a remarkable recovery, going from a stage 6 paralysis to a stage 1. He told me what I had dreamed of hearing, he said I would recover, it would just take time. I was started on Gabapentin as by now the neuralgia facial pain was almost unbearable. I still couldn’t smile but my taste buds were returning. Life was improving slowly. It took a lot of medication tweaking to get my pain and dizziness under control.
I started walking with a friend as I became so tired and had lost all confidence, plus if it was windy I couldn’t close my eye. I ended up being off my work as a nurse for five months. The headaches, facial pain and dizziness were unbearable at times. But with the love and support of my family and friends I was getting better.
I finally came off all medication in January 2019 and returned to work on a phased return for four weeks. I am back at work doing my normal duties now and I feel nothing but gratitude towards all the care and treatment I received.
Today I still get tired, I still can’t close my right eye fully, which I don’t think will ever return. But I can smile again (even though I lost a tooth to an abscess I couldn’t feel). I’m back running, not a lot in comparison to what I was doing. Being so poorly and having enforced rest by my body meant I had time to reflect. Things had to change so I didn’t get poorly again. I now say no to things. I take time out for me. I don’t overwork myself and I’ll now ask for help.
If I hadn’t had the treatment so promptly, my outcome could have been so different. I am now on a mission to help raise awareness to help others.
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: 24-04-2019 || Next review due: 24-04-2023