Nicola’s Story

Nicola is no stranger to Bell’s palsy, having experienced the condition four times in just over twenty years.

Nicola before Bell’s palsy

I remember my first experience of Bell’s palsy very well; it hit me the day before my 18th Birthday. I had been suffering for several days with a really annoying twitch around my right eye; I thought it was just a nerve due to tiredness at first, as I was a bit of a party animal around that time. Then I noticed half my tongue was feeling odd, kind of numb and tingly, and my eye was starting to blur. The rest of the paralysis followed over a very short period of time, along with the most awful pain across my brow, behind my ear and down my neck. It was scary!

I saw my GP as soon as I could, I can still see his face to this day, for he was in shock. He had been practising for many years without seeing anyone suffering from Bell’s palsy, yet in that week alone, I was the second patient from the village to walk in with it! The other patient was male, so, my doctor instinctively asked if I had a local boyfriend because of the coincidence and the lack of knowledge that surrounded this condition, he thought it might be contagious!

I was sent away with a job lot of steroids, advised to rest and told my symptoms would slowly subside. Approximately three weeks later, my face had pretty much recovered.

My second episode is a little foggy. I was 23 years old and juggling two jobs. I do remember the return of the eye twitch, this time over a shorter period of time. Then my face went on strike once more, along with all the normal symptoms as before, and swelling.

Nicola after Bell’s palsy

Again, the GP couldn’t understand what the swelling part was; it was a total mystery and remained one. This time I wasn’t prescribed any medication, steroids or other.

As this was the second time I’d had Bell’s palsy, I was sent for an MRI (which confirmed I had a brain), and a VERY thorough physical examination where they confirmed I was ‘normal’… apparently.

Months passed, my face improved a little, but I was left with some weakness, confused nerves and a very watery eye, resulting in a face that I couldn’t call my own anymore. Just to add to it all, I got chickenpox really badly, which left stunning scars on the ‘good’ side of my face!

The following year, I felt there was little improvement and it was still really upsetting me. I turned to my GP for further help and he referred me to a physiotherapist.

Facial palsy seemed to be a new thing to my physiotherapist, even though she was the main ring leader! She was very good though and eventually worked out which exercises may help strengthen the right side of my face. When my sessions came to an end, I was left to continue my eyebrow lifts and wide smirks, in hope that someday I would be able to control my face properly again.

Third time unlucky. I was 36, I was having a horrible time at work and trying to recover from an absolutely evil nasal infection.

I’d been with my boyfriend (at the time) for several months, he was my world, and then ‘it’ struck again, this time without warning.

Nicola has been left with synkinesis

It was during a Saturday when my son and I were visiting my boyfriend’s place. We’d been out and about during the day when I could feel the right side of my face slowly tightening and moving less and less as the hours passed. I realised my Bell’s palsy was back. I completely and utterly fell apart. My other half had no idea how to react.

As before, my GP questioned my swollen face and this time put me on antiviral tablets, explaining these were the new steroids. He said that steroids had been proven to have little or no use, therefore were no longer prescribed. I’m not sure of the reasoning for this because I have since found out steroids are still recommended for people with Bell’s palsy.

I was sent back to the hospital for more tests and another MRI. A neurologist suggested I continue to take antidepressants to help stimulate the nerves (I had been taking these for some time though, so I merely continued with my dose, as before). I was given the all clear and signed off, which was great, I was healthy. However, part of me wished they would find ‘something’ so I had an answer as to why this Bell’s palsy kept returning.

This time, it was not only me finding the whole situation upsetting; I had a 9 year old son to worry about, too. He also found it REALLY hard. I remember he would often say, “Mummy, I can’t remember what you look like!” It hurt so, so much.

Nicola in February 2015

Eventually I was able to blink again; it was a slow process, but a good one. At aged 40 my face remained very weak and confused (the nerves cause unsightly wrinkling). If it’s cold weather or I’m not well, it appeared worse, and I was still experiencing some pain, a sore watery eye and weakness on one side of my mouth.

At this stage I knew my facial palsy would never truly go away, but I felt lucky for the movement I had. I continued to miss my ‘old smile’ though.

Having had Bell’s palsy three times already, I had always joked about getting it a fourth time, little did I know that this would actually happen, again following a very stressful period in my life. Now, aged 42, I am determined to deal with it in a more positive way!

February 2015: Bell’s palsy number 4

Initial symptoms were different during onset on this occasion, I had problems with headaches and my eyesight for a month or more before the tell tale pain of Bell’s palsy kicked in. I even phoned the optician to ask when I was due an eye test; they told me I’d only had one six months earlier. Then, the evening of that phone call, the familiar excruciating pain behind my ear and such like raised its ugly head and I knew then, it was the ‘Number Four’ that I had always joked about!

My son, now 15 and at a very body conscious age, reacted in a very stand offish way. He wasn’t able to look at me and seemed generally nervous around me. All very different to how he dealt with the condition when he was 9. After having a chat with him, I learnt that he was concerned that it may be hereditary, which is not true. With support from Facial Palsy UK, I managed to reassure him and he is now at ease around me again.

As the right side of my face is completely frozen yet again, I am rediscovering the joys of a sore eye that doesn’t blink, a mouth that makes the oddest noises at the most inconvenient of times, continuous pain and the difficulties of eating, drinking and speaking in general, to name just a few issues that come with the condition.

Nicola at Facial Palsy UK’s AGM Oct 2016

The last three times I may have hid from the world, but since those times, thanks to Facial Palsy UK, I have learnt much about the help and support that is available for people with palsy and I shall grab all offered. Unlike previous times, I was simply left to get on with my life with a face I couldn’t call my own, because GPs and Neurologists said I was otherwise fit and healthy!

Since working alongside the charity, I have met many wonderful people who understand how hard it is living with a face that doesn’t work. I no longer feel alone, as I did before. Therefore, I have chosen NOT to hide my unique face from strangers; in fact, I am probably putting myself out there more to try and educate people and encourage others to do the same!