Amanda’s Story

Amanda shares her experiences about Bell’s palsy in pregnancy and her wish for more awareness.

Before Bell's palsy

Before Bell’s palsy

Having a new baby is supposed to be a magical time between parent and child, and it was for me and my daughter for the first 48 hours. Even though we had to stay in hospital for those first two days due to my daughter needing antibiotics, it was still magical.

We were discharged mid-morning on a Saturday and I enjoyed being at home with the rest of my family.

However, by mid-afternoon I started to notice that I couldn’t taste down one side of my mouth, a bit like a numb feeling but I could still feel my tongue. I contacted my mum to ask if she knew what it was, I even Googled it but couldn’t find anything that made any sense to me. Not once did facial palsy pop up either. I ignored it and put it down to tiredness from giving birth and the stress from trying to adjust to minimal sleep. This was the worst thing I had ever done.

Bell's palsy struck 48 hrs later

Bell’s palsy struck 48 hrs later

I woke up early Monday morning to feed my daughter and I tried talking to her, but I couldn’t talk properly. I couldn’t see my face because I was sat down with her and no one else was awake yet. I tried to smile but I couldn’t, no matter how hard I tried to smile I just couldn’t do it with the right hand side of my face. I was very confused, worried and scared. I heard my husband moving around and I shouted to him that I couldn’t smile. He came running in and said the whole of the right hand side of my face had dropped. I rang NHS 111 and they sent out an ambulance. I was in hospital for ten hours until they finally agreed it was Bell’s palsy and not a stroke. I was alone in hospital as my husband was at home with both of our children. It was a terrifying time for all of us and I was away from my new-born baby.

When I was discharged from hospital I was told to buy eye drops if my eye became dry, and they gave me some gauze padding to tape over my eye. My mother-in-law had in the meantime done some research online and said I needed special tape to ensure my eye stayed closed at night. I mentioned this to the hospital but they said the gauze would be fine. It wasn’t fine, my eye wouldn’t stay closed underneath it. I was sent on my way and told to contact my GP if I hadn’t recovered in a few weeks.

Struggling with Bell's palsy

Struggling with Bell’s palsy

Those early days at home were extremely difficult, my husband had to go back to his job in the Navy so I was coping alone with my older daughter and our new addition to the family. Taping your eye shut at night and then having to untape and retape for the numerous night feeds was difficult. My vision was constantly blurry in the affected eye and I had difficulty doing the day to day tasks associated with having a new baby, such as making up bottles of formula, I couldn’t see the measurement lines on the bottles properly! One time I nearly fell down the stairs while holding my baby, again due to problems with my vision.

Two weeks after being diagnosed I had an appointment with a neurologist and soon after I had an MRI scan which eventually came back clear, although I was waiting several weeks for the results.

Over the next few months it became apparent that no one in a professional capacity that I had spoken to really cared about what I had, apart from the health visitor. I saw my doctor eleven weeks after having my baby but he just looked at me and said you’ll be fine and to go back in a couple of months if I was still the same, even though I told him that the recovery had stopped. I could tell it wasn’t getting better but he chose to ignore me. I wanted to find out if there was anything I could do to improve things and also when I should start worrying about the lack of recovery, but there were no answers.

Early days after diagnosis

Early days after diagnosis

Our family moved to Scotland four months after I was diagnosed with Bell’s palsy as my husband is in the armed forces. I’ve been to see a doctor in Scotland who gave me a referral for a physiotherapist to help me recover but unfortunately I was only the second person in her 35 years of being a physiotherapist that she had seen with Bell’s palsy. She said that she couldn’t help me as she didn’t really know what it was and she didn’t know how to help me recover. She did show me a few facial massages for me to try at home but since then I’ve been on my own with it (apart from speaking to the charity) due to the lack of face-to-face support there is out there for this.

I have been talking to Facial Palsy UK and they have been excellent at making me feel good about myself and helping me understand this better. Unfortunately I’d have to travel to see a facial palsy specialist, and I can’t get there due to the children and not having access to a car. The Facial Palsy UK charity has restored some of the self-esteem that I have lost and they have built my confidence back up.

Facial palsy is a very scary thing to happen to anybody and there isn’t enough research or awareness into this. None of the midwives told me about the possibility of contracting Bell’s palsy after pregnancy or the symptoms of it, even though it’s more common after pregnancy and in the third trimester. If I had the knowledge of the symptoms I wouldn’t have put my tasteless mouth down to stress and tiredness, I would have immediately gone to hospital and the steroids that I was given might have done a better job. My goal in the long term is to try and get every midwife in the country to educate all pregnant women about the Bell’s palsy condition and how to spot the signs early enough and what to do.

It’s been eight months and I still can’t blink or smile properly and all my muscles are slowly tightening up which is making it harder to get my face working properly again. My eye doesn’t close for sleeping but I am learning to adapt. When I close my eye the side of my mouth moves and I have no specialist to ask whether this is normal or not. By looking things up myself I found out this is something called synkinesis. I’m hoping that one day I will be able to fix my face somehow, but my main goal is to make the whole of the UK aware of this. Bell’s palsy is just one of around 30 causes of facial paralysis. Men can get it as well and it can happen to anyone of any age. Too much stress has been associated with it but no one is 100% certain of the cause. So far all we know is that “it just happens”.

Please help me change the “it just happens” to an “it’s happened because…”

Update

Amanda later took part in Facial Palsy Awareness Week 2015 and volunteered for Facial Palsy UK. She is pictured below taking part in a rowing fundraising initiative in Blackpool. We are very grateful for the support Amanda gave us.

Raising awareness

5 March 2015: Blackpool Gazette – Mum tells of battle to get back to health

12 March 2015: Lancashire Telegraph – Darwen woman in challenge to raise awareness of Bell’s palsy

Facial Palsy Awareness Week 2015

Facial Palsy Awareness Week 2015

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Last reviewed: 08-03-2017    ||    Next review due: 08-03-2019