11 weeks with Bells Palsy: This is my... - Facial Palsy UK

Facial Palsy UK

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11 weeks with Bells Palsy

Leigh35 profile image
11 Replies

This is my eleventh week with Bells Palsy and although I can see a very slight improvement with my mouth (very slight) my eye is not getting better at all. It droops badly and doesn't close at all. I also still have pain in my face and neck. Can anyone tell me how long my eye is likely to stay like this?

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Leigh35 profile image
Leigh35
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11 Replies
RHS2015 profile image
RHS2015

Theoretically you shouldn't have pain with Bells Palsy. Was Ramsay Hunt Syndrome eliminated. Shingles in the inner ear. You need to keep your eye lubricated so your cornea doesn't get dry and wear an eyepatch at night. Get your GP or pharmacist to show you how.

My eye never managed to fully close and I had a platinum weight put in.

À gold weight is another option - very important to see an ophthalmologist.

Good luck. No one really knows how long the paralysis will last. It's so individual

Leigh35 profile image
Leigh35 in reply toRHS2015

Neither the hospital or the GP diagnosed Ramsay Hunt Syndrome or mentioneded anything about it even though I had shingles in my ear and in the side of my tongue. i have had to research everything myself.

I use drops during the day and tape my eye closed at night. How long did you have problems before you had the weight put in? Has the rest of your face recovered?

RHS2015 profile image
RHS2015 in reply toLeigh35

Oh no! That's terrible. I'm a really bad ( and rare) case. I was 90% paralyzed despite getting antivirals and prednisone straight away.

3 months before eye started closing enough not to tape. I'm 2.5 years in and will never recover.

I suggest you join the Ramsay Hunt Syndrome closed group on FB.

You'll get heaps of support and advice and connect with others in the U.K.

I post lots on it and as it is exclusively for RHS sufferers -which youhave! Not Bells Palsy - you'll get heaps of support.

If you can't find the group - repost here and I'll try and help you

25clai profile image
25clai

I've just seen your chat re Ramsey hunt syndrome, rather coincidentally , I've just been told by a neurologist today that I have Ramsey hunt syndrome, not Bells Palsy , as diagnosed by GP. Although it sounds like mine is less severe than your experiences, I cannot close my eye for more than a few seconds after 10 weeks now. I have a few problems with speech , due to the mouth paralysis ,and the pain goes on, of the shingles I had , but less acute now. Can you tell me how to find the Ramsey Hunt group? I can't find it under communities , but I am keen to talk to fellow sufferers. I've been told I need facial physio, and possible cosmetic surgery support, as I've been told there may not be a full recovery . Up to now I always assumed I would eventually get better . ..all a bit demoralising!

Leigh35 profile image
Leigh35 in reply to25clai

My appointment to see the neurologist isn't until middle of September! Im going back to see GP on Thursday to ask to be referred to an ophthalmologist as well.

Just put Ramsay Hunt Syndrome in the search on Facebook and you will find the group. Although it is helpful to hear about others problems it has also made me feel very down, as like you, I expected to fully recover.

I've had some acupuncture which I do feel was helping with the pain but had to take a break because my husband had a heart attack! The stress of this has definitely made the RHS worse!!!

RHS2015 profile image
RHS2015 in reply to25clai

Hi It's on FB - Ramsay Hunt Support

You had the spelling wrong. It's a great group. Very supportive and a wealth of information.

Try again and if no luck - repost and I'll work out a way 👍🏼

Leigh35 profile image
Leigh35 in reply toRHS2015

I'm already on the FB group, thank you

25clai profile image
25clai

I agree re stress making things worse. Had a lot of that recently with my family ( x2 teenage boys) , thank you for the details. But I'm not a Facebook person. I am getting a lot of medical support now. I recommend an eye hospital, as they have been very good for me, plus they are used to seeing cases like ours. I've had an MRI on my head ( normal brain), next is an assessment of facial nerve function to give prognosis. I am under a rheumatologist for other chronic problems and she has been very supportive. Once I had taken the immediate treatment, the Gp attitude was go away and wait for it to get better. ...Neurologist told me to go and get a referral for facial physio from GP, I am going tomorrow ( not holding my breath). It would be nice to touch base with fellow sufferers, but not via Facebook .

Thanks anyway

Leigh35 profile image
Leigh35 in reply to25clai

Have you checked to see whether there is a support group in your area on the facial palsy website? Good luck with your recovery x

25clai profile image
25clai

Good idea, thanks !

BUNLTE profile image
BUNLTE

hey i am also like you its been almost 5 months now but still don't see any change with this bell palsy i went to doctor she only told me its happen and it will soon be over while it was early 1 month and now its 5 months because at first i thought it was a stroke but other doctor gave me medication today and transfer me to physiotherapy maybe they will be a change i cant even sit with people because i am ashamed of my face.

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