Helen’s Story

Helen is 53 and has had recurring Bell’s palsy for the last 13 years, three times on the left side and four times on the right. This time she has been told it is permanent and she tells her story of her quest to find out why it happened.

Before Bell’s palsy

The first time it happened, I woke up one morning and my husband looked at me with shock as my face looked like I had had a stroke, no movement and drooling – completely out of the blue. I was half asleep and wasn’t sure what was happening, as his shock was the first indicator of the severity of the paralysis. I went to my GP and was prescribed antivirals and steroids immediately, however I think the other things that really helped me heal were cranial osteopathy and acupuncture. Within about five weeks my face went back to normal every time – except this last time.

This time around it’s been awful, one of the worse. It’s been nearly three years and it hasn’t gone back to normal, it’s progressed to synkinesis (the result from miswiring of nerves after trauma). What happens is involuntary muscular movements happen at the same time as voluntary movements, for example, when I smile I get an involuntary contraction of the eye muscles causing my eye to squint. This last incident happened after a gynae operation using general anaesthetic and one of the theories is that I’m allergic to general anaesthetic and another theory was that it could be related to me not having proper pain relief.

I’ve had lots of different tests and one of the things that came up is a marker for sarcoidosis, which my father had when I was a child. I saw a specialist who did lots of blood tests and he thought this was a contributory factor. I also think that stress is a contributory factor as I’ve been stressed prior to every bout of facial palsy I’ve had. I also think another strong link could be hormonal change.

I have all sorts of theories, but the psychologist who assessed me thought it was unprocessed trauma. I was involved in a bomb scare when I was 17 where I came out of the building from a side door two minutes before the bomb went off. I was running up a big main road in Belfast city centre with a soldier almost dragging me along, and then we had to get down in the recovery position and he lay on top of me and my face was against the road and the bomb went off. One of the thoughts was that this was something that I hadn’t properly processed and that I had PTSD (Post-traumatic stress disorder). With the help of an amazing psychotherapist at a specialist facial palsy clinic, we did EMDR (Eye movement desensitization and reprocessing) which is a specific psychological therapy technique. It was amazing because during the treatment my face would go absolutely loopy, it was going into spasms, I could feel it going up and down and up and down and then it would just settle, so there’s definitely something linked to a psychological event.

Bell’s palsy struck again in 2016

I have found that people around me got used to how I looked very quickly, but the thing about facial palsy is how it feels. My mouth doesn’t work like it used to, my face doesn’t work how it used to, my teeth don’t work like they used to, I can’t chew on the right side. My nostril runs, I drool, my eye waters, my eye didn’t close for 18 months. When I am in a deep sleep my eye randomly opens in the middle of the night and I wake myself up by my eye opening, so I haven’t had proper sleep for all of this time which is really wearing. It’s exhausting, and also one of the worst things it’s done has knocked my confidence totally because I’m not old and I used to be quite an attractive person.

When I look in the mirror now, I have all sorts of lines and movements that occur, and a numb face. Everything I do goes on the left side. Now I am told it’s permanent. They have given me a series of exercises to do. I see a physio who gives me the latest techniques to try which are all based on myofascial release, which I’m qualified to do myself.

I work as a holistic therapist and when this first happened, I took two years off because I didn’t feel like I could promote wellbeing when I didn’t look or feel right. Now, one of the worst things people can say to me is: “If you hadn’t told me I wouldn’t have noticed” or: “Your face looks great at the minute”.

2016 – trying to close eyes

Although I might look better on the outside, it still feels the same on the inside. It affects every single aspect of my life, I can’t kiss properly, and my mouth doesn’t pucker. It’s changed my hearing, my eyesight, my memory, it affects all sorts of physical aspects like eating, I can’t chew, I get food stuck in that side of my jaw, I don’t think the world realises that. I hate eating in front of people.

When I am tired my face gets worse. I start off talking to someone then as I’m having a conversation I can see in their eyes that they’ve noticed that things are starting to twist and kind of contort and I know they’re struggling to read my facial expressions and they think that maybe I’m angry, or I’m frowning.

My son is a teenager now, he’s 17, and he’s gone through his formative teen years not being able to tell what my facial expression is which has caused a massive problem. He always thinks I’m angry or I’m glaring because my eye that doesn’t shut is wide open when it’s really bad, so it does look like I’m glaring.

I notice people staring, thinking, “What’s going on here?”. I’ve been in a public place where people have asked to ring an ambulance because they think I’m having a stroke. My speech sometimes becomes more slurred and my face is beginning to slump a bit more, and then I have to explain what’s wrong. Then when I explain, I get upset, and then when I cry I feel like I just look like an absolute lunatic. This happens a lot and I think that’s another thing that the world doesn’t realise, how it affects all the tiny things that the world takes for granted – it affects everything. When I can’t do those ordinary things, and I’m looked at weirdly, I feel like a freak, but when I tell people what’s wrong, they just think I am obsessed with it or I’m not well.

One of the worst things is getting to know new people. Very dear friends that I knew before all this notice a difference, I’m not the same person, I don’t have the same level of confidence, and also, before I had my son I used to teach, but there’s just no way I would stand up in front of a class now. I didn’t go out for about seven months this time around, it was really awful, and the only place I went was to hospital appointments.

Helen now

I’m getting Botox treatment where they think it will help, in my head and down the side of my neck, but the problem is that it wears off before my next appointment. My eye stops closing, I start drooling and I can actually feel my face ‘melting’. Then the powerful headache that comes with this whole thing comes back and that is excruciating. I’m really lucky though that I have an amazing consultant who has agreed to see me again in 10 weeks this time, instead of four months.

What people with facial palsy need and I really, really, can’t stress this enough, is psychological and emotional support and I was very lucky because under the umbrella of the specialist hospital one of the things they gave me was EMDR after I was diagnosed with PTSD. I also have regular acupuncture that seems to have a profound effect upon my appearance and my headaches. My acupuncturist puts needles in the non-palsy side of my face and my palsy side lifts. It is quite incredible.

It is always improving and I believe one day, with the letting go of trauma, I will look like ‘myself’ again.

2021 Update

I am a great advocate for a holistic approach and have had great results with acupuncture, myofascial release, EMDR and supplements. I had nerve conduction tests done before the pandemic and was told that with this and the retraining of my face that I have been doing for almost five years unusually I have turned around synkinesis. Although I look better and have better function my face still doesn’t ‘feel’ the same as the non-palsy side, but it’s better than it was nearly five years ago and I am better with my confidence now too. It’s been a long road back and I could not have done it without support like FP UK or FP OZ, the emotional support has been essential!