Bells palsy pain

[Cam1520]

Hi there,

I'm new here and to Bell's Palsy. Im 12 days from onset and finished my steriods on Saturday just gone. But the pain i now have is unbearable and its making me really worried. I had pain in my ear and neck (like where my gland is) the night before it started and that pain carried on,including down my jaw and up the back of my head, but it was bearable. I'm wondering if the steriods were helping to dampen it because my first day of not taking them and the pain in those areas is horrendous. Nothing I've read though mentions this or if its a bad sign in terms of recovery. I havent had any changes at all in my facial movement, my right side remains completely "switched off". I feel scared and worried at the moment. Ive contacted the gp who said it wouldn't be a stretch of the imagination to have some nerve pain. But he couldn't reassure me it was "normal" either. Has anyone else had this level of pain and how did you cope? Also I'm assuming that 12 days in is a little early to start panicking that I haven't had any change or signs of improvement yet?

Any advice is gratefully received. I've never felt so alone.

Xx

[Hidden]

Hi there,

I do feel for you !

I had no pain on onset 3 years ago but when the steroids stopped I had pain in my head like I have never felt in my long (75yr) life. I was given specific tablets for nerve pain at that point but they were of little help. It did subside and disappear after some time.About a week I think.

I can’t reassure you about how long the Bell’s will last as it is so different for everyone . I am still getting some Botox for mine. However I know of people who have recovered very rapidly within weeks. I do hope you are one of those. Meanwhile I believe the best advice is rest, rest ,rest !

Do hope the pain subsides soon 🤞

[Diesel41]

Hi sorry your having the pain issues. The problem with Bells is it effects us all slightly differently although we can relate to how your feeling but I found the doctors seem to know very little on the issues we face including pain , mental health , self consciousness, fatigue etc .

I am over a year since I first got bells and woke up like most devastated when I looked in the mirror to go to work.

Couldn’t see properly couldn’t speak or eat and drink properly and felt so tired and was just starting a new job which meant I could not take time off just had to go in and face the people I met at interview as a totally different person.

The doctors can never understand the mental effect this has on someone and 16 months on I’m still having issues although my face has mostly gone back to normal.

My eyes get really tired still at the end of the day and my mouth goes numb and makes me feel like I’m not speaking clearly even though people can’t see this I can feel it and it makes me scared my bells is coming back.

Then a month ago I got a second nerve palsy in my left eye nerve which caused double vision and balance problems and again this happened overnight just as I was starting a new job again .

This time I was in hospital for five days so had to be signed off sick and because I also had balance issues I was off for a month .

I’ve just gone back to work even though I’m not recovered as I think if I stay off longer they will just end my contract but now once again I’m having issues with Managers thinking because they can’t see my problems they don’t exist.

My manage actually did my probation monthly review even though I’ve not been in the office and she said things where ok but I needed to smile more and be more confident lol

That’s my point to you really no one knows what your face is doing to you or your nerves or how painful it is but please don’t suffer tell your GP , don’t let them fob you off ask for pain relief and probably time off work if your working.

I wish I hadn’t gone back to work so soon as I’m sure it’s making my bells worse having to worry about what people think of me etc it’s exhausting at any time never mind with fighting this Illness that no one really seems to take seriously

[Lovern in reply to Diesel41]

Hi, I feel for you. I have not have Bell's Palsy, but my husband had. It started in 2015 with all the symptoms you mentioned. He had four attacks in 2 years. Been basically ' holidaying' at Moore Fields Hospital plus others as his vision, hearing and speech is affected. The steroid worked amazingly the first two attacks, but nothing since. What I have done to assist him is to make sure his nutritional health is as good as can be, that's when he's willing to cooperate. I had given him vitamin B complex, especially B12, D3 &Magnesium. I gently massage his face with magnesium oil, which helps to calm the nerve down. Its now 5 years on, his facial appearance has improved, he had weight placed in his eyelid to help keep it closed.

I have come to the conclusion that daily distress plays a major role. He gets tightness and tingling when he's stressed, but he gets back to the routine. We are dealing with it as it comes and have simplified our lives massively.

As he could not work, I eventually got him on benefit, as he's has been diagnosed as severely sight impaired.

Hopefully our experience could help you to keep positive, educate others and not give up. God's blessings. Isaiah 33:24

[Buttercup00]

Hi,

Sorry to hear you are going through this. I was diagnosed with BP on march 1st this year while I was 8 months pregnant. i had extreme pain and went for a MRI to rule out anything worse, and thankfully there wasn't. however I was prescribed gabapentin and it took away the pain in a week. I still have have bells palsy but the pain did subside so just know there is hope!!

[Bal02]

Hi there. Yes pain is a normal part of BP. I found microwave wheat bags really helped, strong pain killers and plenty of rest. Try and keep positive, and I'm sure you will soon be on the mend. Good luck!

[Hanz139]

Hi,

I also had pain in the few weeks/days of the onset. I’m month 7th of BP and my eyes improved but my mouth hasn’t (2nd time with bp, my first time I improved by the second month and was back to normal more or less other than synkensis)

I was told to take ibruprofen as opposed to paracetamol for the pain.

Honestly try and get help from your GP/physio ASAP I felt the second time I was fobbed off by my Gp which I believe has contributed to my slower recovery

[Vane91]

I had bad pains. I would cry myself to sleep. You are barely a couple of weeks in I hope you have seen some improvement!!!

[Serendipity56]

Hi

I had BP for the first time in February this year.

Looking back I think my case was a mild one after reading about others experiences. When I look at before and after pics I think otherwise.

After finishing my course of steroids I too experienced a lot of neck pain.....and wondered if the medication was masking my pain.

I find if I get cold it is worse and some days my collar bones ache badly.Some days are worse than others.

8 months on I still don’t have my taste back properly...I have a slight lisp which I can feel but other people say they don’t notice it.

I get tired more quickly and still have constant pain in neck..shoulders and arms. I feel weaker than I did before I had BP. I take anti inflammatorys and use a heated wheat bag most days.

Hope it never comes back and hope the aches subside soon.

[Cam1520]

Just wanted to give an update to the original post, and thank everyone for their replies.

Its just after 3 and a half months since onset and I think I've been really lucky as things have improved a lot. I'd say i look about 90% better and it feels about 70% better. Most people now don't notice anything wrong but I can feel the difference in my face so to me, without looking in a mirror, i still feel self conscious. The affected side of my face feels much weaker and i get funny sensations running along what im assuming is the nerve pathways in my cheek and around my eye. My eye closes and blinks now, thank god...that part was so miserable! My affected eye still looks bigger/more open than the other one but can't really work out why. Its only cosmetic really i know but I'm still really hoping that goes back to normal.

On the whole though I'm very grateful for the recovery I've made so far and wanted to give an update in case it helps others. I know it affects everyone differently and that recoveries will be individual and vary, but it definitely helped me to read of different people's experiences and to understand a bit more, plus not feel so alone.

The pain i mentioned in the original post, lasted about a week and a half and got better gradually over that time. Initially it was horrific, I've never had pain like it. I took cocodamol and ibuprofen at regular intervals and managed to take them less and less until i didnt need them by the end of the 10th ish day. In hindsight i think the steriods were having an anti inflammatory effect and stopping them cold turkey when i finished my course meant a sudden surge of pain that was a bit of a shock. Thankfully though it did go. The sensations i get now aren't painful, just weird, unless i get particularly tired and it can feel more like an ache. Vision wise my affected eye has gone back to normal. It was very blurred from where i couldnt blink and it was getting dry. All i can say for that is use the eye gels and drops regularly and drink plenty of water.

I did see a homeopath practitioner about a month or so in. I felt i didnt have anything to lose and there wasnt anything else a doctor could give me except tell me to be patient, which isnt my strong point! I'll never know whether it helped me recover more quickly/fully than if I hadn't used this type of therapy, but based on my experience if i went back in time i would do it again.

My mouth, like the rest of my face now, looks normal and i have full range of movement and function. As i say its just how it feels and it still feels unlevel when i talk or laugh...to look at it it looks normal though so this is more a sensation than what is actually happening. My guess is that all of this is a sign the nerves are still healing. My speech is also back to normal although when i get tired i feel like i have to make a more conscious effort to form words properly. Again no one else notices but i do.

For anyone else reading this, wherever you are in your recovery I hope things are still improving for you. Or if you are at the start of onset please know the people here know how you feel.. its really scary. But have faith, it will get better and even though a week feels like a year your body is working hard to recover. If i have any advice its rest rest rest, don't watch the days tick by obsessing over your fave like i did! If it helps take a picture then dont take another one for a week. ..you sometimes see more difference in the photo than you do in the mirror. Don't even bother doing any of this for the firsr 3 weeks coz its soul destroying...it took around 3 weeks for me before i saw any change at all which seemed like a lifetime, but i really didn't see any change at all til i was into the 4th week. People who hadn't seen me for a week or so in between would notice a huge difference whereas i didnt think i was improving at all but thats because i was looking every day and not noticing the subtle but significant improvements. Thats why i think a photo can sometimes help but definitely only take a pic once a week minimum, you'll drive yourself crazy any more than that.

I'll be honest there are times i panick its coming back or its going to happen again. I dont know if there would be any way of stopping it, other than try to keep stress levels down and health up. The stress levels part is a bit harder in the middle of a pandemic and all the repercussions that go with that but i will try!

Most importantly be kind to yourself. Listen to your body and rest when you need to. And reach out here if you're feeling alone or have questions coz everyone here understands.

Xx