Linda’s Story

I first reached out to the FPUK charity after I’d read some articles about Ramsay Hunt Syndrome, which received quite a lot of publicity after Justin Bieber publicly announced that he was suffering from it. My first experience of RHS was about 20 years ago when, unfortunately for me, very few doctors appeared to have heard of it. It certainly wasn’t diagnosed as RHS during the many painful days that I spent in hospital, completely unable to blink or swallow or move one side of my face at all.

It was only two or so years after having RHS that I found out what had actually happened to me. I think that at that time RHS was on the list of rare diseases. I’ve really struggled to get a diagnosis all this time and do think that proper treatment in the first instance would have saved a lot of pain and difficulty associated with RHS not to mention the episodes of recurrence I’ve had since. Because of the way I was treated by the medical profession at the time, it makes me feel quite angry now that after a celebrity has it then everyone seems to know about it. I do appreciate that it has raised awareness though, and I hope that no-one else has to suffer the way I did. Presumably, the RHS isn’t reflected in my medical notes as every time I’ve had a recurrence, I have to go through all the same questions about weakness down one side to ensure that I haven’t suffered a stroke.

Back when I first had RHS (as it turned out), I’d absolutely no idea whatsoever what had happened to me. There wasn’t even a mention of Bell’s palsy never mind RHS. I’ve just had to piece it together myself and it’s only now that I know that RHS is connected to the Shingles virus. It started off with very sharp pain on the left side of my face and head and painkillers just would not touch the pain. On day three of having the horrendous pain I went to a walk-in centre but they weren’t able to tell me what was happening or offer advice. By day four it was still really bad. I went to try and drink some water and choked. I thought I maybe just had a really bad sore throat. The pain got so bad that I had to leave work early and I went to the doctors. The doctor examined me, said that there was no sign of any throat infection but there could be an infection further down so I was prescribed a course of liquid antibiotics, which of course I wasn’t able to swallow. I went home then feeling very low and confused about what was happening to me.

I remember that day that my husband was out but my daughter called round and the first thing she said to me was, “Oh my God Mum, what’s happened to your face?” She looked shocked. I went to the mirror to see for myself and saw that my left side had dropped completely and I couldn’t smile. By day five, I’d completely lost the power of speech and my husband took me to A&E and we suspected I may have had a stroke. I was told I would need an MRI scan on the evening I was admitted but then was back on the ward by the following morning. I wasn’t offered any pain relief despite the searing pain that I was experiencing. I was also incredibly hungry and thirsty as I’d not been able to eat or drink for so many days. There was no drip offered or provided either. At one point a consultant was on a routine ward visit with his entourage and he stopped by my bed and simply said, “You do know you might stay like this, don’t you?” It was so upsetting and really quite scary. I had no idea what was happening to me. I still couldn’t swallow and could barely speak.

I asked for something to help with the pain and was offered a pessary only. I was so desperate to reduce the pain at that stage. A speech therapist did come to see me and explained that the flap that covers the airways in my throat was paralysed so food would be able to go into my lungs and that was why I was choking and unable to swallow. I was so hungry at this point but there was still no drip. Everyone else on the ward was eating normally at mealtimes which was very difficult to watch and endure. I’d been in hospital for around five days then. By the time Friday came around I really was in a complete state. It was awful. Nothing had been explained to me and there was still no sign of an MRI happening. I was told I would have to wait for the following week for a scan. There was still nothing even approaching a diagnosis.

At that my husband and I agreed that I’d be better off at home. When the hospital discharged me they suggested I call in to my family doctors on the way home. The family doctor said that I might have a brain tumour! You can imagine how distressing that was after the awful experience I’d had in A&E.

There was no further immediate help from the medics after that. Back home I realised that I was gradually able to ingest food if it was pureed to around the thickness of tomato soup and initially, I could only manage a small teaspoon at a time. It took around six months for me to eat normally again. I also needed to patch my eye up to try and prevent any damage to the eye itself as the lower lid wasn’t working at all and my eye was constantly dry and exposed.

Eventually, I managed to see a neurologist and he told me that there was no sign of anything on scans that had been carried out. He asked had I ever had chicken pox and I said yes, as a child and he said oh then it will just have been the Herpes virus. My face still hadn’t recovered and some of my friends were literally starting to cry when they saw me.

My husband had some private medical insurance and we used that to get in touch with a Bell’s palsy clinic in the north of England. My husband drove me to an appointment there and I met a really lovely and supportive lady who was able to tell me that I definitely had not suffered from Bell’s palsy because it doesn’t affect the swallow. She told me to go back to the doctor to try and get more information and an actual diagnosis.

The next time I sought help from the medical profession, I went to see a private neurologist in a London clinic. My face had started to show some improvement at this stage. The neurologist said to me, “What is it that you have in your head that’s wrong with you?” It was terribly upsetting that he thought it was all in my head and there was nothing actually wrong with me; that I was just a middle-aged lady with too much time on her hands to worry about her appearance. After that appointment I told my husband that I didn’t want to see any other doctors at all. I’d lost all faith in the medical profession.

It was two or three years after that I saw an ENT specialist and he said that I must have had RHS. I googled my symptoms then and there they all were, in black and white. It was the first I’d ever heard of it.

Seven years later to the month I had a recurrence. This time when I went for treatment I had a totally different experience. I was given a bed immediately and a drip was inserted. By the evening of the day I was admitted, I’d seen about three or four different consultants. They had to check my symptoms and rule out other possible conditions. This time I was not dehydrated because of the drip. I was put in a side room so I wouldn’t have to watch the other patients eating their meals when I couldn’t eat. The hospital staff could not have been better. The neurologist said that if at any stage I felt that I might be able to manage some food then I could call down to the kitchen and ask for some food to be brought to me. I was in hospital that time for around three or four days. They discharged me saying that I would know better how to recover from this than they did. I was offered different supplements and drinks to try and aid the recovery process. They kept in touch with me and told me to let them know if there was anything that I needed. It could not have been more different from the first time around.

Since then, I’ve been hospitalised twice with the same symptoms. I have also had a referral to an eye clinic. I am approaching seventy now and the last recurrence was about six weeks ago. Before that there was an episode around three years ago. Recently, it’s just been my mouth and swallow that have been affected and not my eye. I do still need to keep my eye taped at night though as the lower lid exposes the bottom part of my left eye. My blink was paralysed and I’m still treated as an outpatient in the eye clinic. I did also have a referral to a plastic surgeon with a specialism in eye surgery. In terms of eating this time around, I can do it but just very slowly and carefully as my tongue was paralysed.

Asides from all the physical symptoms I’ve been very depressed sometimes too. You do see people looking at you and I’d much rather that they asked me about my appearance and what happened instead of staring. I am a hairdresser and I’m lucky that people didn’t seem to notice too much at work until I told them what I’d been through and drew attention to it.

It still grieves me that I got so little acknowledgement or treatment that first time I had RHS. So many people out there with this condition never get the answers that they’re looking for though. It’s really helped me lately to spend time with my young grandson and I’ve felt more confident about raising awareness of the condition. Hopefully, my experiences will help other sufferers out there if they have been through the same thing.