Deborah’s Story

Before Ramsay Hunt syndrome

Before Ramsay Hunt syndrome

Deborah describes what happened to her as her breakdown in her face, here she shares her story.

It was early summer 2013 and I’d just turned 33. I had my own business (a dance school) and loved teaching. I started having migraines which after a few days developed into a chronic earache. I went to my GP and told him about the pain I was in. I thought I was getting an ear infection but my GP said my ear was clear. He gave me some stronger painkillers and I returned home. That afternoon my face went tingly and numb and the following day it dropped on the left side. I thought I had had a Stroke. I couldn’t close my eye, my mouth felt all numb and I couldn’t control my dribble. I went straight to A&E, my face completely unmoving on one side and in chronic pain. At A&E they diagnosed Bell’s palsy and sent me home with a low dose of steroids. They said they would make me an appointment with ENT for a follow-up 12 days later. My GP has been brilliant and he upped my steroids because he knew the dose was too low considering how much pain I was in. A few days after my face dropped, a rash developed on the left side of my face.

Ramsay Hunt syndrome

Ramsay Hunt syndrome struck

At the follow-up ENT appointment they increased my steroids and also gave me a prescription for antivirals. They didn’t write it out properly though, the ENT clinic wrote how I was meant to take the drugs instead of what the drugs were. I was backwards and forwards trying to get this prescription made up while in a lot of pain, my GP had to intervene. I was then discharged after a couple of months even though I was still having problems. All they could say was ‘that’s just the way it is’. I went back to my GP and he put me on antidepressants. A month later I was referred to a different ENT clinic at another hospital. The ENT specialist there changed my diagnosis to Ramsay Hunt syndrome, a complication of shingles. The right treatment for this condition was antivirals and steroids within 72 hours. I had been given too low a dose of steroids and I didn’t get the antivirals until 12 days later. It is really frustrating and I don’t know why I wasn’t given them earlier. They should have realised it wasn’t Bell’s palsy because I was in chronic pain.

My GP also referred me for physiotherapy. I had a couple of sessions at a different hospital but they didn’t really know what they were doing. They wanted me to use electrical stimulation on my face but I couldn’t use it because I was in so much pain.

Six months later my GP referred me back to ENT because I was still having problems. I had an MRI scan to rule out other causes, which came back normal. I was referred by the consultant there to a Facial Function clinic in central London. I now receive Botox injections to help with the pain in my face and the synkinesis. This helps to relax the affected side and ease the pain although it does hurt having it done! This is funded automatically by the NHS and I didn’t have to make a special request for it. I still haven’t received any psychological support for my condition other than from my GP. I wasn’t given any real information about my condition other than I was told to look it up.

Struggling to close eye

Struggling to close eye

I describe what happened to me as my breakdown, my breakdown was in my face. Physically there is no synchronicity in my face, one eye is smaller than the other and I still don’t have much movement on one side. It’s numb and stiff. I still dribble on that side and I can’t eat properly. I can’t smile properly so I stand on one side in photos to smile. My face feels constantly tight on the paralysed side. It is like your skin has been pulled tight all the time. If I get tired or run down my face starts twitching and I still suffer with headaches.

I’m nowhere near as sociable as I used to be. I had to give up work as I was no longer able to teach dance and I closed the business I had built over 13 years. I tried to keep it going for a couple of years after I became ill but I struggled to be around the kids. I taught children from the age of two upwards. I used to do all the work myself so I had to get a couple of staff in to help when I first became ill but long term it wasn’t going to work. Before this happened I was an extremely expressive person. I struggled to be around the kids because I felt so bad. I felt I wasn’t doing a good enough job because I had changed so much. A very good friend of mine said to me the other day, “Your birthday is coming up and you haven’t done anything for a couple of years for your birthday.” I said, “Do you know what? We haven’t done anything for nearly five years.” The reason is because it happened just after my birthday and I associate it with it now. I will go out and celebrate other people’s birthdays although I do hide away, but I haven’t celebrated my own birthday in nearly five years. I am very conscious of people looking at me the whole time.

Deborah now

Deborah now

I’m married and I have two children. Ramsay Hunt syndrome has had an impact on them too. Sometimes I don’t want to go out, especially if I am very tired or low. I just go to sleep and have a rest. My eldest has Autism spectrum disorder (ASD) so life isn’t easy. It’s been nearly five years and I am still on antidepressants and I cannot work, both a direct result of Ramsay Hunt syndrome.

I am 38 in April and still every time I get a headache I panic, in case it is coming back. Before I got this condition I had no other health issues.

If I had had the antivirals faster and the right amount of steroids then I might not be as bad as I am now. I was in so much pain that someone should have realised it wasn’t Bell’s palsy. I don’t want to ever see any of my friends or family go through this so there needs to be more awareness. It has stopped me from doing things that I loved doing. I know this is down to my mental health as well, but mental health is very important. On a more positive note, I’ve got no wrinkles on that side!

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.