Helena has some useful tips for others newly diagnosed with Bell’s palsy.
Helena before Bell’s palsy.
My Bell’s palsy began at the beginning of June 2024. My first symptom was intense earache which lasted all weekend, and then on the Monday morning I realised my lips and eye felt strange – I couldn’t mouthwash without spitting it out, and I couldn’t drink my tea like normal, as well as not being able to shut my eye while applying make-up.
After the earache I thought maybe it’s an ear infection but managed to get a doctor’s appointment that morning as I was worried about the facial weakness. I almost got sent on my way with an “ear infection” but insisted to the doctor that it was mainly the facial weakness I was concerned about – not the ear pain. Only then did they do further tests on my face, and said I had Bell’s palsy, I then received a 10-day course of steroids and antivirals. I had never even heard of it before, and didn’t really understand the long-term implications at the time, so went to work as usual.
A week after Bell’s palsy diagnosis
Throughout the day my face dropped more and more until I could no longer blink, smile, talk or eat normally and my face was fully paralysed on the left side. I went back to the doctor a week later, and I had so many questions, but was rushed out the door. I asked what would happen if it still wasn’t better after a month, and if I should come back, and was told “well there’s nothing else we can really do.”
After four months with little progress, I consulted the Facial Palsy UK website and realised I should try and see a specialist as there were in fact things that could be done to help. I fortunately was able to go privately through health insurance and saw a specialist neurologist who immediately sent me for an MRI, referred me to physiotherapy and sent me for EMG nerve testing. The difference in care was amazing and I felt so regretful that I hadn’t gone to see a specialist to begin with.
Almost nine months later, I still have synkinesis with my left eye closing when I smile, and my smile is still stiff and crooked. I am learning how to smile in a different way, and have taken a huge knock in confidence, and really miss how I used to look and my big toothy grin. I am still doing physiotherapy and some neuro exercises to try and retrain the synkinesis.
Helena now has synkinesis.
Advice I would give to others –
Try and not shy away from going out and doing things – I know I certainly didn’t enjoy social events while my Bell’s palsy was at its worst, but going away on a trip to Norway out in nature was incredibly healing for me and forced me to carry on doing things I enjoy. Even just a trip to a nearby park, or a weekend away in the countryside will help take your mind off your changing face, and particularly time outside and in nature is a great distraction. It’s so easy to get into the unwell/sick mentality – the first week of Bell’s palsy, I would stay in bed most of the day, and rarely leave the flat, but it was actually getting out and doing things that made me feel better – especially as my body felt fine, just my face wasn’t!
Helena has adjusted her smile due to synkinesis.
Some other advice would be to celebrate the small bits of progress or improvement in recovery – I tried to see minute changes in my smile/blinking as a positive sign of recovery, rather than a frustrating reminder of just how slow recovery can be.
I would also say to advocate for yourself with the doctors, and where possible try and see a specialist. The acknowledgement of my Bell’s palsy, treatment and general care, was a completely different experience when seeing a specialist neurologist, as opposed to a GP. I regret not going back sooner when I hadn’t achieved full recovery after three months and wish I had persisted earlier on to see a specialist.
Lastly – try and not shy away from photos! I know even now I find it difficult seeing photos of myself and navigating this new smile I have had to adapt to, but I’m so glad I still have photos from the past year, as at the end of the day they are still memories.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.