Paul from Bungay would like to see more awareness amongst doctors, particularly in A&E, as he felt he could have been offered better information and support during the crucial first few hours of Bell’s palsy.
On the 15th January 2018 I was going off to work and the only thing I noticed different as I ate my toast as usual that morning was that it didn’t taste quite right. I thought the butter was off! I went off to work and had an earache but put it down to cold wind as I do tree work and was outside all day. I got home that evening and my wife Adele immediately said I looked very tired. The next day I went off to work and my friend said my eye looked a bit strange, I hadn’t noticed, but didn’t feel too good. I stopped for lunch and the farmer I was working for invited us in, he commented that my eye looked strange and I went in his bathroom and had a bit of a shock when I saw my face.
Worried I was having a stroke I drove home, but couldn’t get a doctor’s appointment, so I phoned 111 and they said someone would phone me back. By this time one whole side of my face looked odd. I waited and waited and two and a half hours later someone rang me back and advised me to go to A&E.
By this stage my eyelid was very droopy, and I didn’t know to put drops in. My wife drove me to A&E as we were worried, still thinking it was a stroke. It was evening by now and they were quite busy so it took a little while before someone came over and asked me to do some exercises, touch my nose, put my hands up etc. She told me not to worry and said she was certain I wasn’t having a stroke. She said: “I think it’s something called Bell’s palsy”, which meant nothing to me as I’d never heard of it. She told me I’d have to wait for the doctor to confirm. Four and a half hours later, after midnight the doctor finally saw me. He spent five minutes with me, said: “It’s Bell’s palsy and here’s some steroids”. He also told me to buy some eye drops over the counter and start putting them in at least every hour, but didn’t say anything about sleeping, or ointment. I wasn’t given much in the way of information at all.
I’m a great believer in holistic medicine and prefer not to take prescription drugs unless they are absolutely necessary, I’ve probably taken painkillers about once in the last 10 years, so I was very wary and wasn’t very keen on taking them, especially when he said take 10 a day! Because I’d been given so little information about Bell’s palsy I went online and spent ages researching. I got the overall impression that the steroids were only of benefit if taken within 72 hours and by this time it was about 72 hours, so I decided not to take them but to do exercises instead.
I also read about acupuncture and was inspired by Angelina Jolie’s story – she said that she got over Bell’s palsy in a matter of weeks through acupuncture….
Ten days later there was no improvement and my eye was really painful and inflamed and I couldn’t sleep. I went to see my doctor and she made me an urgent appointment at the eye clinic at the local hospital. Within three hours I was up there and they asked me if I had been prescribed proper eye drops and ointment, I hadn’t so they said they would do that now and explained to me how to put the ointment in before I went to bed at night and to tape up my eye. I could hardly see out of the eye at all by that point.
I’d stopped driving by this time and being self-employed it was difficult. I had another appointment about three weeks later at the eye clinic and they also referred me to the neurology department who were very curt and just said there’s nothing wrong with you and didn’t offer me a scan of any sort. Parallel to the medical stuff I was in touch with Facial Palsy UK who were absolutely brilliant. I had had some electrical stimulation and the lady at Facial Palsy UK told me to be very cautious about that as some facial therapists believe it can cause synkinesis.
Meanwhile, a friend who’s involved with Shiatsu said she knew someone with Bell’s palsy who had a course of Shiatsu which had really helped them. On my initial appointment she didn’t make any guarantees or anything like that, but I immediately felt better and made another appointment where I felt better again, mentally better. In the end I had five sessions and each one definitely did have a positive effect, I had more energy. My face seemed to incrementally get slightly better which may have been a coincidence.
There is an amazing local physiotherapist who has taken a specialised interest in patients with facial palsy. I still haven’t to this day managed to get a referral to see her. I’ve spoken to her several times and found her extremely helpful. She’s said to me over and over: “Get yourself referred”, and I’ve tried and I’ve failed. I get fobbed off, the doctor won’t refer me, or the hospital, and each tells me the other needs to do the referral.
My GP was very happy to give me an appointment at the eye clinic but looking back I think one of the mistakes I made was when they suggested a small bit of facial surgery which involved lifting the lower eyelid. It was only three months in, so I said I wanted to wait until at least six months. So, I got taken off the system. I got the distinct impression that I could then have been referred to the physiotherapist, but once I’d refused the surgery I seemed to be out of the system.
I went back to work really before I should have done, after two months. Financially it was difficult as I didn’t get any benefits, I waited weeks and weeks for universal credits then to be told my application wasn’t accepted. When I went back to work, tree work creates a lot of dust, especially when chain sawing and I had to be a lot more careful. I had to turn work down because of the eye. Even now I’m not back to what I was before the palsy – I have to be aware that even though my eye blinks now it’s not as strong.
After about six months I remember I looked in the mirror and noticed it was starting to recover. From then on, it’s been very gradual. The only real downside is that once you’ve started to recover people assumed it’s all alright again, but it wasn’t. People say: “How are you?” and you say: “Fine” and then it’s: “Oh good, you don’t need my sympathy anymore!” Well actually I’m not a hundred percent! My energy levels have definitely been affected, I used to work full time and then go out in the evening and enjoy myself and now I have to be much more cautious.
I think there should be more research into the reasons facial palsy occurs. I’m sure it’s linked to stress and low immunity because it happened to me at a time when I was really low and stressed. I’ve talked to many people who have been through something stressful like a bereavement or divorce and within a few weeks they’ve gone down with facial palsy.
I’m not totally back to normal yet, but I’ve got no complaints at all now, it’s such a relief.
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.
Last reviewed: 28-02-2019 || Next review due: 28-02-2022