Roma developed Ramsay Hunt syndrome about twelve years ago and describes how she benefited from specialist care.
My name is Roma, I work as an Administrator and live near Whitstable Kent with my husband. My hobbies include travel, gardening, swimming, my family and grandchildren. After working really hard at work and doing a lot of decorating in our house at weekends, I thought I had a sinus or ear infection because I kept having a pain under my right ear. I went to ask my doctor if I needed antibiotics and I think he gave me some. I went to bed and when I woke up in the morning and looked in the mirror I thought my face looked a bit strange. I went to work and one of my colleagues said my right eyelid wasn’t blinking and didn’t look right and I should go to the doctors – I said I had already been to the doctors but made another appointment that day and saw a doctor who said he thought I had Bell’s palsy. Because my right eyelid wouldn’t close he told me to tape my eye closed when I went to bed at night. Within a short while the right side of my face dropped badly and I looked as though I had had a stroke. I started to feel very unwell and found it very difficult to eat or drink as the inside of my mouth on the right side was really painful. I remember my daughter coming to see me and when I showed her my tongue she said at once that I should go to the doctors as the right side of my tongue had blisters on it and my mouth looked awful.
I made a doctor’s appointment and saw a young doctor who looked inside my mouth and said “Oh my word you have got shingles in your mouth it is called Ramsey Hunt”. I didn’t know you could get shingles in your mouth as most people have it on their body or even their eye. I asked if my face would go back to normal and he said it was unlikely to heal completely. He gave me antiviral pills and said I should rest – he did contact the local hospital to see if I should be given steroids but was told it wasn’t necessary. Apparently, I had missed the crucial first three days when I should have been given these pills. I was actually off work for four weeks and during this time the pain at night under my ear was excruciating and I didn’t know how to deal with it. I went to see another doctor and she said I needed to manage the pain by taking paracetamol and then after two hours could take ibuprofen. I ended up writing the hourly time down when I took the pills so I didn’t take too many. During this time I found it very difficult to drink from a cup, and felt as though I was dribbling, my eye watered continuously and was worse when I ate. I lost all sense of taste or feeling on the right side of my tongue which has never recovered.
I have had rheumatoid arthritis for the last 25 years and was on immunosuppressant drugs and injected myself every two weeks with Humira, an anti TNF drug that helped my arthritis a lot. Because these drugs suppressed my immune system I was advised not to take them for a while. Strangely enough my arthritis went into complete remission and my Rheumatoid Consultant said it was probably because my body found it hard to deal with two things at once. After six months my right eyelid started to close again and strangely my rheumatoid came back and fortunately I was able to go back on my medication.
At the time I was working for a language school as a Welfare and Accommodation officer and had been there for over 20 years. Part of my job was greeting and talking to students, teachers, business people on a Monday who had come to the school to learn English. I said to my Manager that I didn’t feel comfortable talking to these people because my face looked so awful and I felt that I needed to explain to them what had happened to my face but when these people didn’t understand English it was very hard. I was allowed to do this for about three weeks but then he insisted I go and talk to the students which I found extremely embarrassing.
I had an optician’s appointment and told the optician how difficult I was finding everything and she said she would write to my G.P. suggesting I get referred to the Maxillofacial unit at the local hospital. I did get a referral and the consultant there referred me to a hospital with a specialist facial palsy clinic. When my appointment came through I saw the consultant who led the clinic and some members of his facial palsy team. The consultant performed a blephoplasty on my eyelids and arranged for me to have physio on my face. The physio team taught me how to stretch the muscles in my face that had tightened and I also had Botox injections which relaxed some of the muscles. I have been doing my facial exercises every night now for years and feel guilty if I don’t do them as the team at the specialist clinic do so much for me. I had videos and photographs taken at the hospital so they could see how it looked initially, and how the physio and Botox improved things. During this time I found saying words beginning with the letter p (Peter) and b such as (Blueberry) very difficult especially if I had to tell people my surname which begins with ‘B’. Even now, my eye waters when I eat so I have to keep dabbing it – again it is something that in a restaurant I feel very aware of. A few months ago I had a brow lift as the eyelid on my right eye had drooped and it felt like a dark hand was pressing down on it impairing my vision. The surgery worked so well that now I only need three Botox injections every four to five months on the good side to relax my smile so when I do smile it looks even.
Compared with how I used to look I now feel more comfortable with my face although the other day I met someone I hadn’t seen for years and noticed that instead of looking me in the eye she was looking at my mouth which made me feel uncomfortable. Sometimes if I am tired my husband will say I look as though I am talking out the side of my mouth.
If you think you have facial palsy ask your G.P. to refer you to a specialist clinic. Even now I believe there are some G.P. surgeries that are not aware of all the help people can receive.
March 2022 Update
A month or so ago I had a call from Facial Palsy/Eye clinic regarding watering of eyes. About 12 years ago I got Ramsey Hunt, shingles in my mouth on the right hand side and was referred to Facial Palsy Clinic, East Grinstead where I was helped with physio, Botox and eye surgery. Fortunately I am still able to attend Facial Palsy and the Eye Clinic and see a specialist who has performed two lots of eyelid surgery and now puts a Botox injection in the gland next to my right eye. This is because when I eat I always have to remember to have a tissue with me to mop up the “crocodile tears” that trickle out of my eye. If I’m in a restaurant I’m always aware that people might think I am crying. If something upsets me, tears only come out of my left eye and none out of my right eye.
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.