Facial Palsy UK
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Fed up !

Hi everyone I'm new to the site,my name is Louise and I got bells palsy nearly 13 months ago.

I literally cry myself to sleep every night still as I am really struggling to cope with this.

I would say I have 60% back,I can close my eye but I don't have my smile back and my eye appears smaller than the other,it also shuts when I eat and smile,I hate myself at the moment.

Would just like to talk to people in my situation as I feel alone.

I am from Reading.

Thanks 👍

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Sorry to hear this...I hope you find the right person to talk to on this site, especially someone who is in a similar position....the symptoms of ‘feeling down’ have a big impact on your life and they seem relatively unstudied and even less understood. I suggest talking to a sympathetic GP about your feelings in case there is some other options for coping with your recovery.

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Thank you for your reply,yes it has made me very depressed which is probably the worse thing about dealing with this awful thing,I think I panic also cause I keep thinking it's going to happen to the other side or I'm never going to go back to normal,I will try talking to my doctor and see if there are any other options,I've done acupuncture and physio x

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I tried acupuncture which did relieve it for a few hours but it came back again. What was good is for the hour it was the topic of conversation and you can at least discuss it with someone who is interested.

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Very true,I found acupuncture very relaxing but my face got to a point it wasn't really improving any further so didn't want to keep spending out on something which wasnt helping anymore,maybe I'll give it another go as I haven't had it done since last summer.Thanks !

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Cheer up though you'll be whistling again very soon.

Its a constant thing though, talk to Lorraine Thurston (Facial Palsy UK) <Lorraine@facialpalsy.org.uk> she's really good and I sure would be able to et you to a local thing. When you go and see some of the others worse than you, you don't feel so bad.

I wake ip every morning and say "supercalafradulisticexpealdocious" if I can do it I'm good to go for another day.....

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Thank you so much,I'm getting there,have good and bad days like everyone,I'm glad I've found this site it deffo helps talking to others in the same situation x

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Hi Louise

I totally empathise and I understand how miserable and sad it makes you feel about yourself. I’ve had a version of Bells Palsy for almost 3 years - I can largely smile but my eye shuts when I move my mouth too and I have a weird dimple on my chin, I’ve mainly come to terms with it but sometimes I get low too, but I’m pretty positive most of the time, it takes a bit of mental work though....

Anyway, I read your message and really really empathised and then saw you were from Reading - me too!

So if you’d like to chat, or meet up and chat, that would be lovely, I’m not saying I’ve got any answers but I know what it’s like xx

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Oh wow yes it would be lovely to meet up and talk sometime? I don't know anyone who has it other than me, if you ever want to chat 😁 we can compare dodgy smiles and squinty eyes haha,are there any groups around the area do you know?

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Cool, I’m afraid I don’t know any groups in Reading or nearby, I think Facial Palsy UK charity organise stuff and I was told about Changing Faces charity but personally didn’t contact them. Cat x

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Hi Louloucookie82

So sorry to read your post.

I was left with a Grade 6 facial palsy (no movement at all)on the left hand side of my face, as a result of having had an Acoustic Neuroma (brain tumour) removed last September. I can relate totally to how it feels to look in the mirror and see someone that's not you reflected back at you.

Have you been to see your GP about feeling depressed? It might be worth also asking if there is a facial physio they could refer you to at your local hospital?

The Facial Palsy UK website is very useful. It has all sorts of information and might just point you in the right direction to finding someone who lives close to you who you can chat to for support. They hold meetings too.

My local Support group meeting was in November, but I chickened out of going as I would have had to catch a train on my own and then walk into a room full of strangers!

Facial Palsy UK also have a Facebook page (it's a closed group) which might be worth signing up for?

Best of luck with it all. xx

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Hi KCW I had palsy after an operation to remove an acoustic neuroma - a "schwaroma from the left pontianacle angle canal" - the spelling is guess work! I lost my balance, and found walking up a tiny gradient like assailing Everest. My eye would not shut and swallowing was problematic - but I was alive. Look at the suggestions I gave Louise perhaps they may help. Norman

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Hello Norman

Thank you so much for your message! It was very interesting indeed.

I actually had facial reanimation surgery in July last year (I had my AN removed on 29 September 2015 - I made a mistake in my original post. My brain refuses to work properly these days!), as my AN was badly spidered around my facial nerve and it was badly damaged as a result. My Facial Reanimation consultant is lovely and used another nerve from my throat to graft onto my facial nerve. I was told that it could take anywhere from 3 months to 2 years for it to work, if at all. I'm beginning to feel a sensation at the top of my ear when I touch my throat and jawline, so something is happening hopefully! I've been taking really high doses of Vitamin B12 as this is good for nerve repair.

I'm just waiting for an appointment from an Oculoplasty Surgeon to have a weight put into my eyelid which will enable me to blink. Apparently, even if the facial nerve graft takes, the best result I can hope for is for my palsy to get to a Grade 3. But the facial nerve graft wouldn't restore my blink as apparently they're both on different 'circuits'!

I've considered acupuncture, as I am a huge fan of it, but unfortunately, at the moment, it's beyond my price range and is not available on the NHS.

I've been referred to another hospital by my facial reanimation consultant so that I can get referred to a lady who is a specialist facial physio, so again that's another step in the right direction.

The road to recovery is rather a long one and I think you have done stupendously well! You're an inspiration. x

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The trouble with the Chinese remedies is that they are so strange, an important part is believing, mine was a modest cost - but he was a friend. You can get the electronic stimulators from the NHS - some years ago it was for free. I did not go for the weighted implant, I personally thought the lying down on my side and blinking exercises was very good, and actually helped - no medical justification whatsoever. I lost one side of balance and had a zimmer to start. Enforced walking the dog helped, Abbey gave me little choice. As a result have climbed my first Munro, and have no problems in the dark. I must sing the praises of the team at the Western General in Edinburgh for their skill care and compassion. It is the first time I have put it into words my gratitude to them [apart from biscuits and a card at New Year] and my gratitude to my pet Abbey

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Thank you for your reply!! Best of luck with your journey too x

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Louise, perhaps it is little reassurance that others have gone through a similar experience, after all that is them and not you. The important thing is not to give up and try and adopt a regime that is going to help you and give you some sense that you are getting somewhere.

I had facial palsy after major "brain surgery", it was many years ago, My eye would not shut and my throat muscles were affected yet I have made a recovery - I find it hard to judge how good, but I look at myself in the mirror, and no longer really spot much difference between the two sides of my face except when I smile and you can see a difference, a slight droop on one side, and I swallow without choking.

Despite this I still seek to continue my recovery. The medical profession talk about recovery plateauing out, well to me I think you continue to recover [if you keep trying] it is just that the improvements get harder to spot. Like climbing a hill, you think you are reaching the top and there is another peak.

For me I wanted to be doing something, and following medical advice was one. However I adopted my own personal strategies which helped give me a better sense of actually doing something, so because eye lid closure was a problem I started by blinking twenty times in the morning and at night while lying in bed. I found it easier to blink lying flat and wonder if gravity affected the eye differently. This was because I had a severe problem with my eye.

I also enjoyed sessions of gently repeatedly tapping or slapping my face. Absolutely no medical evidence to support this method, it is just that I enjoyed it, gave me a sense of doing something, and as time progressed I sensed changes in how I sensed the taps, from nothing to a sense of numbness was the biggest.

. I tried the electrical stimulator. My neighbour is a Chinese medical practitioner trained in China Looking at the diagrams on how to place the pads for the stimulator it reminded me of acupuncture points. I had a consultation with him and he recommended two treatments - acupuncture and moxibustion. First time around I asked him when was he going to start putting the needles in and stop tapping my face? - intact he had put the needles in. With acupuncture the locations seem so precise unlike the large dots on the stimulator.

Fortunately I trusted my neighbour, as the second method seems bizarre to westerners and to me. Using the heat from the glowing tip of a cigar like object, he massaged my face the tip never touching me just the heat.

The result was I began to feel sensations flowing across my face. Everyone is different and Chinese medicine is holistic and centred on the individual, so you might get different advice even for the same symptoms. Never despair but keep trying, indeed in my case the act of trying helped me feel better [the facial palsy was only one of a number of issues I had to overcome] Try a new regime in the New Year. Norman

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Thank you for your reply you have been very helpful,good luck with your journey also x

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I am still on the journey after ten years, do not forget you are going somewhere too. Funnily enough I now end e-mails with the phrase keep smiling, even though mine is still lopsided a bit. So keep smiling Louise.

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PS From Norman. At my first session the Chinese Practitioner asked me to take off my shoes and socks. I desperately tried to remember if I had cleaned my feet and if there were holes in my socks! I wondered what did feet have to do with my face. He placed a needle between my big toe and the next one and stimulated it. He explained afterwards that I had reported fatigue and he was treating that as well. It was like a light bulb. I had walked slowly across for the appointment afterwards I felt like vaulting the hedge, so there may be additional benefits from the holistic approach

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The reason your eye is moving with your mouth now is because you have synkinesis. Have a look at facialpalsy.org.uk they are a brilliant organisation and will be able to point you in the direction of any help groups in your area. The website has some good exercise and massage videos on there as well. I found a great consultant through them. I actually have Ramsay Hunt Syndrome caused by shingles in my ear. Take care and make sure you are getting plenty of rest x

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Thank you for your reply,I will deffo check the website out,you poor thing how are you finding things?

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Most days I can just get on with things but some days I am very sad. The worst is when I visit the hairdresser and have to look at myself in the mirror for a couple of hours. I also hate it when people tell me how much better I look. I know I have improvement but I’m still not “better”. I’ve recently had Botox around my eye and inner cheek. This has definitely helped with the pain. Just know you are not on your own and that we’re here to listen xx

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Ahh yes the hairdresser visit,I know it well !! Was looking at old pictures today with my kids,I wanted to cry as I miss my old face but I know I have to stay positive,I'm still alive and Everything else in my life is good so I guess I gotta feel grateful.

Let's hope things improve rapidly for both of us hey x

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louloucokie feeling the same with me i am 5 moths with bell palsy but still not each i am not even sure if this gonna end

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Hi Bunlte

It will get better and we all have days where it really gets to you,I'm having a bad day today as I'm stressed out at work so it really does affect my face.

I've had mine over a year now and everyone apart from me can really see a massive improvement,if your like me your constantly looking in the mirror?

Have you had any physio etc?

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