Bells palsy and synkinesis year 3! - Facial Palsy UK

Facial Palsy UK

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Bells palsy and synkinesis year 3!

persante profile image
4 Replies

I literally dont know what to do! GP is telling me that there is nothing they can do because it's only cosmetic and not medical. Feeling so down, I can't do eye contact, I don't let take pictures, I can't imagine myself to work where I would like to because I don't want to be seen by others , I don't want to meet people and I just sit at home and sometimes find hard to go out even to the supermarket. Any tips please what could i do? are the doctors really going to let me suffer like this for the rest of my life? any experience?

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persante profile image
persante
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Karen-FPUK profile image
Karen-FPUKPartner

Please can you contact Facial Palsy UK on 0300 030 9333 or email support@facialpalsy.org.uk and we will do our best to help you.

Shazza1966 profile image
Shazza1966

Hi I've had Bell's palsy for 2half years it's the most horrible thing ever .every morning first thing I do is look in mirror to see if my face is ok I know that it will never go back 100%people say it looks back to normal but I don't feel it I fought for a year and half to get physio through my doctor he finally gave in I see a lady called Claire it helps so much she shown me how to do exercises and massages when my face goes tight ect please don't give up bug your doctor till he/she gets you help ,in the end I sat and went on Internet and found out every possible thing about Bell's palsy and synkinessis 3xA4sheets of paper full took it to doctors and said read that because I can see you no nothing about Bells he took it home to read and rang me next day to tell me he had read it and it was an eye opener for him because he had herd of it but didn't no any think about it so he sorted all physio out for me After that he was brilliant xafter that my friends little girl who is 4yrs old got bells I told her to push for physio straight away she got it with in a week and what a difference and back to normal x so please don't give up the physio helps so much it's knowing what to do when your face tightens eyes watering elvis lip lol ect even after 3yrs it will help you so much xgood luck x

Seeujimmy profile image
Seeujimmy

I had palsy after a brain tumour was removed. My neighbour had trained in China and is a qualified practitioner. They adopt a holistic approach and asked me a whole host of questions - that to me seemed irrelevant. The end result he decided on a course of acupuncture and moxibustion [ I can never spell that one!]. I had tried various suggestions like the electronic stimulator but I did not feel progress. With my neighbour I went from no sensations to a feeling of numbness to looking in the mirror again. Importantly I had complete faith in him [I think a necessity] the moxibustion was like a cigar , and he used the heat of the cigar to massage my face [it never touched]. Sounds very alien to us westerners. I began to feel sensations running across my face after a while.

Personally it is important to never to give up - my own personal treatment regime is entirely self designed and completely without a degree of medical knowledge. I slap my face gently in traffic jams [plenty in Edinburgh! I got weird looks from bus passengers once] and if I have time to myself. Also when I wake up in the morning lying in bed I try to open an shut my eye a couple of dozen times. Perhaps because you are horizontal gravity has less effect?

The my self help techniques were good for morale - it felt like I was doing something rather than waiting for something to happen. It was like climbing a hill, you think you reach the top but there is always a higher summit to aim for. I did not give up but the incremental improvements got smaller and smaller - you had to just look harder to spot them. I never believe there is a plateau of recovery - there is always room for improvement. Even now when the facial palsy is negligible, I still try to improve. I went to the film Dunkirk to see my dad's war and still cannot cry from that eye. Norman

hje23 profile image
hje23

Don't give up! There is help out there, you may have to fight for it. I've had bell's palsy for 17 years and currently recovering from attack number four. I was lucky, after my second attack I saw an ent specialist who knew about a facial palsy team not far from me and my doctor then referred me. They have been brilliant. But get in touch with the facial palsy charity they can help. They also have support groups. I go to my local one run by my physio and it has been a great help. I hope you get the support you need.

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