Doctors struggled to diagnose Claudine with Ramsay Hunt syndrome due to the absence of a rash. There isn’t always a rash with Ramsay Hunt syndrome, here Claudine shares her difficult journey.
It started with a really bad earache. A month before I’d had a fungal ear infection from swimming which I thought had come back. It was acutely painful. My GP checked my ear and said all looked perfectly normal. I knew it wasn’t, it simply hurt too much.
A couple of days later I was at the Transport Museum with my husband and daughter and started having problems walking. I was off balance, it was like being drunk. I went to urgent care at the hospital where the doctor diagnosed water behind my ear and told me to take an inhalation. The next day my walking was worse and my earache intensified. My own GP prescribed a nose spray for water behind my ear. I knew it was much more serious so that afternoon went to a private ear, nose and throat (ENT) consultant as I felt no one was taking me seriously. I could hardly walk. He said it was viral labyrinthitis, prescribed Valium and booked an MRI for the following morning.
I woke at 3.00 am with a profound earache. I tried to drink a glass of water but I couldn’t, my face had dropped. I phoned 111, failed the FAST test and was rushed to hospital with a suspected stroke. It was my daughters 12th birthday.
The hospital soon realised it wasn’t a stroke. I failed many of the neurological tests and had bad nystagmus, when your eye jumps from side to side. One doctor surmised I might have a tumour. Six hours of worry before my MRI results came back and confirmed it wasn’t. If she didn’t know she shouldn’t have told me!
My husband phoned the ENT consultant with the symptoms. He said it sounded like Ramsay Hunt syndrome (RHS). Hospital doctors couldn’t see any vesicles or blisters. One was found on the roof of my mouth much later. It is a misconception that you need vesicles for Ramsay Hunt syndrome, although rare, you can get it without. Much later that evening they did a spinal tap, the results confirmed I had Ramsay Hunt syndrome and viral meningitis. I had masses of VZV (the shingles virus) in my spinal fluid. By this time my whole brain had swollen up. It took a day for me to start antivirals and steroids after my face dropped and it took two weeks to get a confirmed diagnosis. I was lucky I had drugs within the 72 hours.
I stayed in hospital for four days on steroids and intravenous antivirals. I was in intense pain. Everything tasted metallic and my mouth just wouldn’t work. I asked for yoghurt and pureed meals as I couldn’t swallow anything else. I asked to be put on a fluid drip because I couldn’t swallow enough water. My eye wouldn’t shut and no one seemed bothered. The doctor asked the nurse to get me eye drops and tape the eye but even though he asked three times it wasn’t done. My husband went outside the hospital to a chemist to get some eye drops which he put in for me. He complained and eventually they started taping my eye. No one showed me how to do it. I learnt that much later watching a video on the Facial Palsy UK website. That website also informed me about ‘Transpore’ tape which was a life saver in the early days.
The headaches were excruciatingly painful. I was on morphine, codeine and Panadol. One doctor I hated seemed in an incredible rush to get me out of the hospital and after four days discharged me even though I was still in incredible pain. I was on the steroids for five days and continued on the antiviral tablets for another week. It was Christmas and I’d wake up crying in the night as the morphine wore off.
Gradually the pain reduced but my face was still paralysed. I needed eye drops every two to three minutes as my eye was so irritated. I wore a big bit of white gauze over my eye which helped a lot. When I wasn’t wearing that I taped it with the Transpore tape and wore a ‘pirate’ eye patch. My kids didn’t like that so much, they preferred the gauze. My daughter still says she misses my smile.
My other big problem was walking. My vestibular system had been decimated. By early January I realised I couldn’t walk and when I tried I became very nauseous. Soon I started vomiting almost continually and got vertigo. The anti-nausea tablets were not lasting long enough and I went back to A&E because I wasn’t coping. They re-admitted me and it ended up being a nine day stay.
Three weeks in I was vomiting in full force, couldn’t walk and was losing the hearing in my left ear. I knew this was the Ramsay Hunt syndrome but the same doctor who forced an early discharge tried to tell me it was labyrinthitis and that she knew what it was like, as she had had it before – she had no idea. People need to realise that vomiting and vertigo are as much a part of Ramsay Hunt syndrome as the facial paralysis. The neurologists were fantastic though – one in particular. She told them she was sure it was still the Ramsay Hunt syndrome and started me on a second dose of intravenous acyclovir. She also arranged transport to the ear hospital to get my hearing assessed.
That was the worst day of all. There was a tube strike so the traffic in London was at a standstill. I was taken off the drip and a taxi driver (hospital transport) came to pick me up. I had to walk through the hospital with the taxi driver to his car. I could barely walk and the car was parked some distance from the hospital. No one accompanied me. It was raining and I felt like vomiting every second. We were stuck in traffic for hours. At the ear hospital they had no record of my appointment. The taxi driver just dumped me at the door and left. I staggered around the hospital trying not to throw up, trying to find out where I was meant to be and trying not to cry.
Eventually someone tested my hearing but it was at the wrong section of the hospital. Just as I was about to leave someone realised where I was meant to be and took me to urgent care. I was told I had lost my hearing in my left ear and was started on a second dose of steroids. On the journey back I was again dumped about 100 metres from the front door. My eye wasn’t taped, it was raining and I couldn’t walk. I had to hold my sick bowl, wipe my eye and stagger up the road, through the hospital, along the ward and to my bed alone. When I got there I collapsed and sobbed my heart out, it was the worst day. The doctor wrote an incident report when she found out what had happened.
Eventually the vomiting slowed and I went home with antiemetics. Thankfully the vertigo did not last that long. If I got tired, I would vomit, especially in the evening, so I started to go to bed really early. I would take an anti-nausea tablet and a sleeping tablet and try to beat the clock on the nausea. It mostly worked and after a couple of weeks I stopped throwing up entirely.
I still couldn’t really walk. I rang my GP to ask for a wheelchair and he referred me to someone in Camden who finally referred me to the stroke and neurology team. An amazing physiotherapist came to my home three times a week for three months and vestibular physio got me walking again. This was not a service that was offered to me but a service I had to request. . I couldn’t have managed without the interim help. Unfortunately, in the middle of this I herniated a disk in my back because my walking was so wonky – another setback!
The referral for facial physiotherapy also took about six months and I was worried this would affect my outcome so saw someone privately in the interim who gave me some stretches to do. She recommended an eye surgeon who could insert a weight into my eyelid as the eye hospital seemed in no hurry to do anything. My cornea was bone dry and my eye not closing so the eye surgeon booked me in for a platinum weight in March. My walking, which had been improving with the Camden stroke team, suddenly decompensated and the headaches came back with a vengeance as did the earache. I was purchasing our house at the time, it wasn’t a great time to do something so stressful but it couldn’t be helped.
I called an after-hours doctor on the weekend and he was 100% convinced the Ramsay Hunt syndrome had come back. My GP referred me to the tropical diseases team at the hospital and I got the horrible doctor again who told me you couldn’t get Ramsay Hunt syndrome twice and I couldn’t have it again as I didn’t have any vesicles (I hardly had any the first time). She was wrong on both counts and thankfully the consultant put me on another dose of acyclovir and steroids. She said because I had had it twice I could stay on low dose acyclovir for six months.
I had the eye surgery whilst tapering off on the steroids. The great news was that I could now shut my eye at night, but it didn’t look the same as the other and it still didn’t blink so it wasn’t quite what I thought it would be. I am used to it now though and had a second surgery to fix the fact that my eyelid was inverting as a result of the paralysis. It looks a bit more natural but it’s not the same. It waters quite a lot because of the synkinesis but I like that, as it means I don’t need to use drops. I was offered Botox to stop it watering but chickened out as I didn’t want to use drops again. I am glad I did as over time it has stopped watering so much.
I insisted on seeing a neurologist again as I didn’t entirely trust the tropical diseases team. He agreed that I’d had the Ramsay Hunt syndrome twice and said I could stay on acyclovir for two years. I don’t want to stop the acyclovir as I am terrified it will come back.
I finally got the vestibular therapy at the neurological hospital. I wish I had got this sooner when I really needed it. I wouldn’t have coped if I hadn’t organised the Camden team.
I am also seen at an NHS facial function clinic. Both the clinic and facial therapist are spectacular and I am exceptionally lucky to be under them. I know a lot of people are not so lucky.
Overall I think I have been lucky. I don’t have that unbearable pain anymore and it’s not a tumour. On the down side my face is still quite paralysed. A year and a half later I have a lot of synkinesis. My lip goes up when my eye shuts for example. The neurologists have been fantastic, tropical diseases not so much.
When I hear other stories about people with Ramsay Hunt syndrome I am just happy to be where I am, getting the help I am getting. Sometimes I get cross that I still have to do exercises every day, facial, vestibular and back. Sometimes I go on strike, have a glass of wine or two and don’t do them.
It has been much easier to accept where I am than hope for something better. I am the one who has to live with my face. If I wake up every day and say ‘this is the best this is going to be, deal with it’ I can live with that. If I wake up and say ‘maybe this is the day it gets better’ I have to live with the fact that at the end of the day it hasn’t. I prefer not to be constantly disappointed. So don’t tell me it will get better or be positive.
It is really hard getting unwarranted, unasked for, and unscientific medical advice. Once, on a bus journey (the same journey!), I was told by three different people what to do. Hypnotherapy, rub garlic and castor oil on my face and keep my body alkaline and drink apple cider vinegar. I was polite to them all because I know they were trying to help, but it really annoyed me. My uncle said I should eat the garlic, drink the vinegar and rub castor oil on my face then I would smell so bad no one would sit next to me or talk to me on the bus!
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: 25-02-2018 || Next review due: 25-02-2021