Diagnosed with BP this week; pain increasing despite steroids

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Diagnosed with Acoustic neuroma in 1997; 24hr tinnitus began in 2006 (after MRI) Tumour was monitored and surgery in 2009 followed after few months by labrynthitis and then loss of hearing on right side. Now have BP right side - assume same virus. Got onto prednisilone within 35 hours - slight improvement of eye symptoms now (not blinking but eye is not painful as it was) after 5 days but  with very sore area at angle of jaw. Hosp was very busy and was so relieved it wasn't a stroke that I didn't ask enough questions about what I could expect. No improvement to mouth control or forehead lifting. Can speak and smile by gently pulling the right side, giving the left side something to pull against. Am taking Vit B and ibuprofen - what else can I do. Can't even try doc until Tuesday because it's easter!

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  • Posted

    Hi Woody

    Feel your pain.

    Main thing is protect your eye.  I was told to do it and did but made two errors that have now have bad onsequencews.  First I used cellufresh to stop the eye going dry.   It was the wrong stuff - it didnt stay in long enough to be effective - I should have been using the lubricating ointment that stays in a long time even thouh it makes your vision go blurry.  Second thing is I thought my eye was closing when I slept - it really wasnt and the cornea was exposed.  I should have been really gooping it up with the ointment before going to bed and using a sleep mask.  I now do all those things after seeing an opthomogist who unfortuneately found a corneal ulcer.  The ulcer resolved but left some resiual thinning that seemed to worry him.  Seeing him Thursday for a checkup.  So I cant over emphasise - use the eye ointment especially at night and wear a sleeping mask then see an opthomologist.  He may change you to somthing not as strong as the oitment that blurs vision - but better to be safe than sorry - as I now know only too well. 

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    • Posted

      Hi Billoldboy

      Thanks for your reply. I didn't reply immediately as I had an appt with the eye specialist and wanted to see the result. Fortunately I have no damage to the eye and will take your advice on board, for sure.

      Unfortunately, it is nearly five weeks now and almost no improvement made to blinking or drinking. Getting used to eating differently and am able to have short conversations, though lack of saliva doesn't help.  Have difficulty breathing at night as nasal passage closes - have tried those strips but they won't stick! So have to change and sleep sitting up.

      How did your appt go?  I hope you got better news on your eye ... 

      When did your BP start? How are your other symptoms getting on?

       

       

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    • Posted

      Hi Woody

      A scar formed where the ulcer was and the thinning is still there but it hasnt got any worse - I will see him in 3 months.

      My actual Bells is following a bog standard course - I am at about 10 weeks (it started Feb 9). I am about 80% - at three months I will likely be pretty well fixed - at 6 months 100%. 

      Since you have no eye damage you can use the Genteel gel during the day (the doctor switched me to that) and the lube at night.  Get a contoured mask to wear at night.  No need to tape it shut if you do that.  

      Thanks

      Bill  

       

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    • Posted

      Hi Bill

      I have been trying to find out what the 'bog standard' course is!  I have almost no input from the GP and the minimum from others - they have done the tests and just said it will 'probably get better in time' - which I have found very frustrating. 

      I have trouble sleeping as have narrow sinuses - when I turn onto the non-affected side the nostril collapses and I wake up. I have tried those strips but they don't stick!  the best thing has been a straw stuck up my nose but it won't stay there!! Any ideas?

      Woody

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    • Posted

      Hi Again Woody

      Can't help you with the sinus thing - didnt have that problem.

      The standard course is you get some inprovement in 3 weeks and it is pretty much all gone in 3 months.  I think yours is a bit worse than normal.

      The person I am seeing that is helping a lot is a neuro-psychiatrist who has explained a otincluding its normal to be tired.  If you are like me and worry a lot they help with that as well.  You might like to ask for a referral to one.

      Thanks

      Bill

      Thanks

      Bill

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    • Posted

      Hi Bill

      Past the 5 week mark now and have noticed my face looks more normal first thing - relaxing the muscles on the good side at night helps I'm sure.

      Interestingly, I finally got my appointment with the physio (for my frozen shoulder) I explained how the hospital had poo-pooed the idea that the steroid injection would have had any input to the Bell's - then she said they always told people to be sure to avoid anyone with Chicken Pox for 48 hours after the injection, as the steroids can suppress the immune system.  I am on the edge of labrynthitis much of the time, and it seems too much of a coincidence to me.

      Anyway I do feel a bit better in myself at last - not quite so tired - and think (HOPE) I'm on the 'b' of the blink ...

      Today I've had a lot of pain around my temple - hope it's part of healing but it feels awful! Watched the Alex Lewis programme last night and felt ashamed I wasn't as utterly cheerful as him! What courage!

      Your input has been a  great help and encouragement - I hope other people add their stories too, as we are all different and it's brilliant when you realise you are not alone.

      Are you able to blink and smile now?

      'speak' soon

      Woody confused

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  • Posted

    Hi Woody

    Yes - can smile and blink - but not at 100% strength - but it's gettintg better.

    Thanks

    Bill

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    • Posted

      Hi Bill

      Almost 14 weeks now and though others tell me my face looks more 'normal' !!!!! I still can't blink, breathe right or smile - however I have been lifting my lower lid with a steristrip and my upperlid does get to the 'bl' of the blink which is a little progress.  The eye specialist has said he will arrange for a stitch to be put in so I'm looking forward to that.  I can also drink a litle better though sometimes forget to be careful and end up with pouring out!

      Everyone you meet seems to know someone who has had it - and is getting better - so am resigned to being as patient as I can.

      You were improving too - has that continued? I hope so. Can you actually raise your eyebrows or screw your face up yet?

      Glad it's summer so dark glasses don't look out of place!

      bfn

      Woody

       

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