Bells Palsy neck pain.: I was diagnosed with... - Facial Palsy UK

Facial Palsy UK

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Bells Palsy neck pain.

jon2010 profile image
15 Replies

I was diagnosed with bells palsy yesterday, after waking up to all the usual symptoms, and now find myself with neck pain on the bells side(right) on the upper neck and behind the ear. my doc put me on Prednisolon 20mg, and was wondering if anyone has had any results over a 1 week course. Can anyone recommend any other solutions? would appreciate somwe feedback. Many thanks. Jon.

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jon2010 profile image
jon2010
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15 Replies
Chantev profile image
Chantev

So sorry to hear that you have Bell's palsy, fortunately your GP is on the case a prompt treatment of prednisone is a good way to go about it. Now you have to take it easy and be patient. Don't undertake any facial treatment for at least six weeks to give your nerves a chance to recover. Lots of rest is recommended and keep away from the cold. Patience, patience and patience for the time being. Also get yourself a referral to physio to help with facial exercises.

Good luck

Mrs_B_at_home profile image
Mrs_B_at_home

Sorry to hear about your BP. I am also recently diagnosed...21 days ago... I found the pain post steriods almost harder to deal with than the palsy... neck, face, ear pain included. I have been taking regular ibuprofen which is helping a little...but am going back to GP tomorrow ( if appt available!) to ask about more pain relief and symptomatic control... a friend of mine who had Bell’s recommended this as a plan of action.

I use the NICE guidance as my go to...cks.nice.org.uk/bells-palsy...

But unfortunately it doesn’t seem to go into as much detail as i think ‘sufferers’ need to aid medical understanding of those in the profession perhaps do not have as much experience of this.

Mrs_B_at_home profile image
Mrs_B_at_home in reply to Mrs_B_at_home

I have actually had more understaning and support from this forum!

jon2010 profile image
jon2010 in reply to Mrs_B_at_home

hi Mrs B. i read your post on leaving the house and falling down, and wanted to tell you "chin up". Mental health is a very important part of the healing proses. and I would also like to thank Chantev for the words of wisdom. It is, if anything, a comforting feeling knowing that there are other people out there struggling with the same thing. on a lighter note....had some blood taken yesterday, and I asked the nurse to take as much as possible. of course she asked me why, so I explained the situ. and asked if they were going to test for HERPES as well as for lymes disease. Well, her face was a picture. I think she was looking for a second pair of gloves.:-) Going to look into some alternative medicines. will keep you all posted. Many thanks again.

ceasarcarcus profile image
ceasarcarcus

I was diagnosed with Bell's Palsy in March 2018. One day I was at dinner with a friend eating salmon dip and shrimp skewers. immediately I noticed my lips going numb. it was the same feeling I've gotten at the doctor's office with novicain. I mentioned it to my friend, stopped eating the salmon dip but continued with the shrimp skewers. my tingling and numbness progressed. by the time I appetizers were over, my mouth was so numb that food was falling out as I chewed. very embarrassing.

however, I assumed it was a seafood allergy. the next morning, I woke up to half my face paralyzed. I didn't know if it was so allergic reaction or stroke. so I did internet research and became afraid of stroke signs.

after emergency room visit, I was diagnosed with Bell's Palsy. I was disappointed. my face paralysis lasted about 3 months. visually it is not noticeable anymore. but underneath the surface, I have a constant sharp pain in my left cheek, still to this day. if I smile or touch my cheek, I get this tinder sore spot in the same location on my left cheek, right underneath my cheekbone -- still to this day.

additional pain includes my neck. every single night I have trouble sleeping. I'm up typing this and reading online because I cannot sleep.

my personal theory, is that the muscles in my face that were initially paralyzed are connected to other muscle in my neck. after my diagnosis, I believe that my neck muscles begin to weaken due to inactivity. it's almost as if my neck is no longer strong enough to support my head.

I have neck pains on both sides. I honestly have not had a nights rest, or nap without pain in my neck. sometimes the muscles in my neck ache and harden that I need to massage it to be facilitate relief. every doctor visits prove very dismissive. they each tell me that no pain is associated with Bell's Palsy. but I know that I've never had this issue until after Bell's Palsy.

does anyone else has subsequent aches and pains after Bell's Palsy diagnosis?

Aroora profile image
Aroora in reply to ceasarcarcus

Hi

I had my first symptoms before 18 months ..the pain in my neck behind the ear was destroying me .. now i am fine my face returns to normal withen 3 months except for the eye it still a little heavy but the pain in the neck is never disapper it only in the side with pulsy not both sides and the doctor say it is not related to my condition ... well i do not trust his opinion because the pain is still there.

My advice to you to worm the area with a sack of hot water it helps me alot and i hope this will help you too

Jazzmanstar profile image
Jazzmanstar in reply to ceasarcarcus

I've had Bell's palsy13 times the first time I was nine years old and that was 1969. The last time I had it was 2012 , and it is not true you do to have pain in your neck behind your ear and till this day I cannot lay on that side because of the tenderness of the pain behind my ear and in my head and if I do press on either side of my face because I've had it on both sides it's very tender it never goes away the pain. and I've been left with paralysis on both sides of my face because of this. in 1969 they really didn't know too much about this unfortunate illness so I was put through quite a bit of unpleasant procedures. I would have electrical shocks up and down the side of my neck where the main nerve is I would have 8 steroid shots put in my head they would poke at my eyeball they just did so much to me it was sad and they just didn't understand why I'm 9 year old will get it that we do. And then they say one in a million gets it I've had it 13 times so I can outdo that one. But the symptoms it might be not noticeable to people but underneath you still do have the pain and doctors that have not had this they should not say that we do not have pain because it is terrible pain when you are going through the symptoms at the time feels like you're being stabbed behind the ear with an ice pick it's terrible my heart goes out to you and everyone who does get this cuz it does destroy a person's life in the confidence in their self

Jesska85 profile image
Jesska85

I was diagnosed with Bell’s palsy 5 weeks ago and every time I lay down I feel my neck tighten (feels the same as if you’ve slept in an awkward position throughout the night or the pillows are two high). The pain on either side of my neck wakes me up continuously throughout the night and I have to swap sides not that it makes any difference! My doctor has also been pretty unsupportive with the various pains I’ve had from having Bell’s palsy again saying that I shouldn’t have any pain from it.

Jazzmanstar profile image
Jazzmanstar in reply to Jesska85

DOCTORS THAT HAVE NOT HAD THE SYMPTOMS TO ME JUST DO NOT UNDERSTAND. I DON'T KNOW WHERE THEY COME OFF STATING THAT WE AS IN PEOPLE WHO DO GET BELL'S PALSY DOES NOT EXPERIENCE PAIN. THE PAIN THAT WE GET FROM THIS AS I CALL IT AN UNFORTUNATE ILLNESS SINCE THEY DON'T WANT TO CALL IT A DISEASE AND DON'T KNOW WHY WE GET IT. THE PAIN FEELS LIKE YOU'RE BEING STABBED WITH AN ICE PICK IF YOU CAN IMAGINE THAT AND THEN THE VIBRATION OF THE PAIN GOES THROUGH THAT SIDE OF YOUR HEAD I'VE HAD THIS 13 TIMES FIRST TIME WAS IN 1969 WHEN I WAS 9 YEARS OLD AND I AM A 58 YEAR OLD WOMAN NOW I'VE HAD IT 13 TIMES AND I HAVE PARALYSIS LAST TIME I HAD IT WAS IN 2012 OR 13 THE PAIN NEVER GOES AWAY IT'S ALWAYS THERE AND YOUR FACE MUSCLES ARE LEFT TINDER DOCTORS DON'T KNOW WHAT THEY'RE TALKING ABOUT THEY NEED TO REALLY DO A LOT OF RESEARCH ON THIS BECAUSE I DON'T THINK THAT THEY DEVOTE ENOUGH TIME TO FIGURE OUT WHY THIS HAPPENS TO A PERSON MY HEART GOES OUT TO YOU AND I WILL PRAY FOR YOU AND THE THING THAT I DID WHAT WAS BEST SINCE I'VE HAD IT SINCE I WAS A CHILD I WAS TOLD BUY A VERY GOOD DOCTOR THAT DID TRY TO HELP ME. KEEP YOUR NECK WARM TRY TO STAY OUT OF THE COLD WEATHER AND WHEN THE PAIN GETS TOO UNBEARABLE PUT A HEATING PAD ON IT IT WILL HELP YOU

2skr profile image
2skr

Hi I'm only two weeks in and just coming off first meds. Will ask GP about vitamin B12 shots as this is apparently good for the nerves. The neck, back and shoulder is I think how you try and compensate for lack of eye or face movement. Went had had Swedish back, shoulder neck massager. It was great and this seems to be putting me back on track.

WHAT type of exercise do people get adviced?

I've just try to massage face and force parts to move. Not much does but sure that a wrinkle is appearing.

Jazzmanstar profile image
Jazzmanstar in reply to 2skr

The best exercises for this unfortunate illness is saying

I o u as in the alphabet and you do it very hardly as aggressively as you can even if the pain on the side that you are having the symptoms hurts you got to stretch the muscles and loosen up the nerve please I know this for I've had it 13 times since I was a 9 year old in 1969 and when the pain gets too unbearable like I expressed earlier in someone's comment get a heating pad and put it on the site that is infected with the Bell's palsy and please try to stay out of the cold weather this also aggravates the nerve

2skr profile image
2skr in reply to Jazzmanstar

Thanks for the tip, my son also told me to have some gum which also helps.

Jazzmanstar profile image
Jazzmanstar in reply to 2skr

Your son's absolutely right this was one of the exercises that they had me do when I first was diagnosed with this as a child just remember when you're doing your AIOU PUT AS MUCH INTO IT AS YOU CAN TO STRETCH THOSE MUSCLES AND GET THEM WORKING AGAIN THEY ALSO HAD ME SQUINCHING MY FACE REAL HARD BUT I REALLY DIDN'T LIKE THAT ONE BECAUSE THE SIDE THAT WAS PARALYZED IT WILL TIGHTEN UP AND IT HURT THEN YOU WOULD HAVE TO MASSAGE IT TO UNTIGHTEN IT'LL BE LIKE ANOTHER CHARLIE HORSE IN YOUR NECK AND IT HURT THAT I DID IT AND I HAD TO DO IT. IT'S A TERRIBLE THING WHEN YOU'RE 9 YEARS OLD AND YOU KNOW THAT YOU HAVE TO GO TO SCHOOL AND THE CHILDREN ARE CALLING YOU A PIRATE AND LAUGHING AT YOU BECAUSE THE FIRST TIME I WAS BLESSED WITH THIS I SHOULDN'T SAY THAT WAS SARCASTIC MY I WOULD NOT SHUT AT ALL AND AT NIGHT TIME MAMA HAD TO TAKE A PIECE OF TAPE AND SHUT IT BUT YES I HAD TO WEAR AN EYEPATCH BECAUSE PARTICLES FLYING AROUND AND THAT REALLY DID A NUMBER ON MY SELF-CONFIDENCE AS A CHILD AND IT DID LEAVE VERY NOTICEABLE PARALYSIS ON THAT SIDE. IT'S JUST SUCH A SAD THING FOR SOMEONE TO GO THROUGH YOU'RE OKAY ONE MINUTE AND THEN THE NEXT I'M SORRY BUT YOUR WORLD SEEMS LIKE IT'S DESTROYED THE 13 TIMES THAT I'VE HAD IT IT WAS DEVASTATING DIFFERENT TIMES IN MY LIFE DIFFERENT SITUATIONS THAT I WAS GOING THROUGH AND THEN I HAD THIS AND IT WAS JUST TERRIBLE. BUT I'M A BELIEVER THAT GOD HAS A REASON FOR EVERYTHING AND ONE DAY I'LL FIND OUT. IT JUST EXERCISES MUSCLES AND PLEASE KEEP YOUR NECK WARM AND AVOID STRESS AND MAY THE LORD BE WITH YOU AND I PRAY THAT YOU NEW YEAR'S STARTS OFF TO BE WONDERFUL WHEN YOU START HEALING. AND I PRAY THAT THIS MAKES SENSE BECAUSE I TEXT TALK AND I'M TIRED AND DON'T WANT TO FIX IT I'M SO SORRY. MY THOUGHTS GO OUT TO EVERYONE THAT HAS THIS .MY PRAYERS ARE WITH YOU.

iaingraham profile image
iaingraham

I have had BP for nearly two years and get neck pain and slight headaches.

No much shifts it I.m afraid apart from muscle relaxation extending the neck (tryint to be as tall as you can) then release quickly, wait 1 min and do it again. Worked for me.

Pain killing gel on the neck once and a while helped too. Doc said OK.

jon2010 profile image
jon2010

Thanks to all of you for your posts, and sharing your experiences. A little heads up. My palsy cleared up after 2_3 weeks. It looks I caught it, and treated it with the steroids in time. However. Just this week I got that funny taste in my mouth, you know the one. It's the taste like you get after the dentist s novacain. Well, I panicked a little because my lip was a bit twitchy and my eyebrow as well. This was all on the right side of my face, so I was convinced I would wake up the next day looking like I had suffered a stroke, again. So when I got home I popped an ibuprofen straight away, then couple hours later a stronger pain killer and a couple of strong muscle relaxents. Granted, I was a wobilly mess, but sure as fate , I woke up and the taste had gone, my head was no longer tight and painful and the twiching had stopped. Now, I do not condone popping pills Willy nilly' but it seems to have reduced any inflammation and relaxed the nerve and muscles around the nerve to avoid a second episode. Of course, I was constantly stretching the neck muscles and shoulders to try and release any tension as well. I wonder if the combination of drugs and exercise prevent an attack if caught in time. For me, it was the taste in my mouth that warned me. I hope this will help some of you who suffer multiple attacks. Good luck, and s very Merry Christmas to you all.

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