Kay has had Bell’s palsy twice, on different sides of her face, here she describes the impact this has had on her life.
My story begins in April 2003. I’d never heard of Bell’s palsy at that point in my life, and certainly had no idea of the effects and impact of such an illness. I wasn’t too concerned about the symptoms I had begun to experience: a severe pain behind my ear and neck that had kept me awake for a lot of the night – I just thought I’d slept awkwardly; the twitch under my right eye – incredibly annoying and embarrassing if nothing else or the magnification of sounds which was intermittent. I didn’t particularly feel unwell, a little tired and stressed – yes, but then that was understandable as I had been having quite a difficult time of late.
It was the Thursday before Easter when I first noticed the symptoms and I sought medical advice immediately, and was told to go to hospital. After a 3½ hour wait I was told that it was probably a trapped nerve in the neck and was given some ibuprofen and sent home. By Saturday morning the right hand side of my face was completely paralysed. It was on the Sunday afternoon that my mother insisted on calling the emergency doctor and it was he who diagnosed my condition as Bell’s palsy. I was told to visit my doctor the following day, which I did, and was from there referred back to the hospital I had attended on the Friday evening. It was the Wednesday afternoon before I was finally prescribed the steroid treatment for Bell’s palsy, prednisolone, well outside of the recommended 72 hour window. When I asked how long it usually took to recover from Bell’s palsy, I was told that he didn’t know, it could take weeks or months, and in some instances people never recover. His closing statement was “all you can really do now is go home and pray!”
My face remained totally paralysed for 4½ months. It was terrifying. The problems which came along with this condition were so debilitating:
Just prior to the onset of the condition I was awakened in the night with an excruciating pain which ran up the side of my neck and into the back of the ear. It was a pain like no other and continued for several months.
Along with this pain came the intermittent over exaggeration and magnification of sound in the right ear. I couldn’t bear to listen to music because the beat was unbearable. Using a telephone proved difficult too as the sound would suddenly become unbearably loud, without warning, and then fade back to a normal level.
My eyelid didn’t move either and so I was unable to blink, or close my eye to go to sleep. I had to tape it closed every night to prevent it from drying out or getting damaged during the night. It was difficult going outside; I was unable to protect my eye from the elements and so the sun, wind and rain all proved problematic. It was awful, especially when it rained because the rain water would run into my eye and sting like mad.
My face itself felt swollen and sore; it felt bruised and I couldn’t bear to touch it. It felt like it was no longer a part of me, like it was about to ‘fall off’!
I struggled to eat as my mouth didn’t work at all on that side and I found it difficult to eat. I tried most of the time to eat on the other side of my mouth; I couldn’t count the number of times I bit through my cheek on the affected side.
Every morning when I awoke the first thing I would do is go to the mirror to see if a miracle had happened over night and my face had begun to move. Every morning I would be disappointed. As the days and months progressed, I became less and less confident that I would recover. I had no-one to talk to about it, I didn’t know anyone who had had the condition, and the medical profession seemed to have very little knowledge about it either.
I continued to have regular visits to see the consultant at the hospital, but each visit ended the same; they really didn’t know if I was ever going to recover. After a couple of months my consultant referred me to an NHS physiotherapist. I went there for a few weeks, but my face remained paralysed. I was given a sheet of exercises to follow which comprised of things like: holding the corner of the mouth up on the paralysed side with a cotton bud to create a complete smile. Then, concentrate to try to keep the smile in place when the cotton bud was removed. I had similar exercises for my eyebrow (keeping the brow raised) and for my eye (keeping the eye closed). They gave me a small machine with little electrodes attached to it. I had to position the electrodes on various parts of my face and switch the machine on so that it emitted small electric type shocks to the muscles. I had to do this several times a day for a few weeks. I was told that I could only have it for a limited time as there were only three available for use for the whole area.
Eventually, after about 4 ½ months the corner of my mouth began to move. Very tiny movements at first, but little by little over the next few months my condition improved. I never really regained full movement again, my smile always looked a little uneven and I was left with twitches and uncontrollable movements on that side of the face, which I have since learned is called synkinesis.
I pretty much got on with life after that, even though I was conscious that my face didn’t look, or feel, symmetrical, it didn’t affect me too much. The residuals left by this episode weren’t too dramatic; my smile wasn’t quite as beaming on the damaged side as it had been prior to the attack, and my eye wasn’t as open, but on the whole it wasn’t bad enough to prevent me from doing anything, including having photos taken.
Then in October 2012 the unthinkable happened. I was hit for a second time with Bell’s palsy, this time on the left hand side of my face. This time I knew exactly what I needed to do and managed to get a prescription for prednisolone from my GP within 48 hours. That was all the medical intervention I had this time; my doctor told me that as I’d had the virus before I probably knew better than any doctor what to do. And that was it. I was given the steroid treatment and off I went to deal with the problem alone. I had wrongly assumed that once I had started the steroid treatment that the condition would not worsen and the damage would be stopped at that point. My condition continued to worsen over the following few days and by the fifth day the left side of my face was completely paralysed.
This time I didn’t experience the pain in the side of my neck, or the magnification of sound in the ear, but I have experienced other problems with my ear. Whenever I moved my mouth, e.g. to speak or eat, I would hear a clicking noise. I have later found out that this is the muscle around the eardrum pulling and can be corrected with a minor, very simple operation. I truly believed that as I had had it before that I could make a difference to the speed of my recovery and so I decided to tackle the problem head on. I spent hours trawling the internet for miracle cures and suggestions on how to make a full recovery. I read that a lack of certain vitamins could contribute to the condition and so I spent a fortune on the ones they suggested were to blame. I also made a conscious effort to only put highly nutritious foods into my body; lot of fresh fruit and vegetables. This time eating was more difficult than before because the right side of my face had not fully recovered from my previous attack. The easiest way to eat was to purify the food I ate so that I didn’t have to chew it. I was determined it wasn’t going to beat me and that I was going to make a full recovery.
Unfortunately, Bell’s palsy doesn’t work like that. Again, it took months for recovery to start and this time was very slow. It’s now almost 4 ½ years since the onset of the second attack and recovery isn’t anywhere as near as good as it was the first time around. I don’t know if I’m more conscious of the problems because I now have it on both sides, or whether it’s because all of the muscles in my face are now weakened, but I am much more aware of the problems.
The residual problems associated with this attack of Bell’s palsy are almost identical to the first attack. However, the most debilitating problem I have been left with is the pulling of the muscle around my eardrum on the left side of my face. I am waiting to be contacted by the consultant in relation to this and have to date been waiting for over 18 months. Recovery on this side of my face has not been as successful as the right hand side – my face feels like two halves, instead of a whole.
So in brief those were my experiences of encountering Bell’s palsy, the illness. But you see there is so much more to facial paralysis than that, and what I’d really like to focus my story on is the other difficulties I experienced as a Bell’s palsy sufferer.
It is difficult for people to understand when they have not come across it before, and to be honest it must be quite disturbing to see someone for the first time with a face paralysed on one side. I experienced on many occasions, reactions from people which were upsetting and hurtful. Some people assumed that because I was unable to speak clearly because my mouth didn’t move properly, that I had limited capability. On one occasion a young sales assistant tried desperately not to laugh as I paid for my goods. It wasn’t her fault, she had no idea what it was, how it felt, or the pain I was experiencing. Had she known, maybe her reaction would have been different.
To wake up one morning with such a visual condition is life changing in many ways. I lost my confidence, particularly the second time around. The need to explain why I look the way I do, why I smile the way I do or why I feel uneasy about eating a meal in public is still there. I have made excuses for why I look and feel different from everyone else. Often I get the reply that they hadn’t noticed, or that I look fine. But that often doesn’t help as I don’t feel fine. My face always feels stiff and tight, even when I am alone and relaxed, I am conscious of the tightness in my face, and it takes a conscious effort for me to ‘relax’ the muscles. This kind of facial tightness (contracture) can lead to facial disfigurement such as the eye becoming smaller, the cheek becoming more bulky, or the line between the nose and the mouth becoming deeper. All of which have affected the appearance of my face.
Then there are the involuntary movements which occur underneath the eyes whenever I speak or eat. These movements are often referred to as ‘twitching’ movements, and to be honest they are really unpleasant. I am very conscious when I’m speaking to someone that I have no control over these movements and I although I try really hard to control them, I find it difficult and embarrassing. When I eat, it is constant, causing my eyes to flicker and water.
Apart from being very much aware of the change in the appearance of my face, tiredness takes its toll too. After a long day at work, or if I’m involved in long conversations or meetings, the muscles in my face weaken and ache. So much so that on occasions the only way I can ease the stiffness, pain and tightness is to completely rest for a few hours afterwards.
So you see Bell’s palsy is with me every minute of every day. It still affects how I look, how I feel, decisions I make and how I view my future.
In April 2014 I came across the website for Facial Palsy UK and saw that they held support groups for sufferers with the condition. I have been lucky enough to be able to attend the charity’s support group in Manchester as it is within travelling distance for me. It has been lovely to meet people who understand the difficulties that this condition brings. We have shared our stories about the difficulties we have experienced in getting the right treatment; treatments denied because they are simply often seen as cosmetic.
It was because of this that I wanted to get involved with the charity. I realised that not many people knew about this condition, and that whilst people were so unaware of the problems associated with it, treatment would continue to be seen as cosmetic. I believe that everyone should have access to the correct treatment, without having to jump through hoops to get it. People should know about the condition and understand it, that way they won’t feel isolated, frightened or alone should they too find themselves affected by it.
Facial Palsy Awareness Week is about raising that awareness and I believe that as we do so, the professionals will no longer see the treatment for this condition as cosmetic; they will realise the problems this condition brings; the emotional, psychological, physical and social problems. The right treatment, at the right time can alleviate those problems; and for the patient, knowing that something is being done goes a long way to giving them hope and positivity for the future.
Facial Palsy UK Update
It was Kay who first suggested to the charity that we should launch a global Facial Palsy Awareness Week in 2015. We are very grateful for Kay’s input and we know having an awareness week has made a difference to many people across the world.
Last reviewed: 25-02-2017 || Next review due: 25-02-2019