bells palsy

[leslizmac]

i was diagnosed a week ago with Bells palsy and I am struggling with the pain , mainly at night. I have been back to the doctors today for stronger pain killers and have fingers and toes crossed they will work tonight. I think the most worrying thing about this awful condition is the not knowing... how long it will last and will I ever recover. my life just sees to have turned on its head , struggling to eat, drink, read, sleep plus the low self esteem of seeing my face droop. Any help or reassurance from anyone going through this or recovering I feel may help me or just to chat to someone going through it. My friends and family have been brilliant but they don't really understand what I am feeling and I feel I have to put on a brave face ... please feel free to chat x

[Hidden]

Hi

I was diagnosed with Bells Palsy four years ago and from what I can remember the pain lasted about three weeks Nerve damage does take a long time to repair so unfortunately there is no way of knowing how long it will take for you to recover Try and rest as much as possible and ask your GP to get you physiotherapy or acupuncture to help loosen the muscles

Facial Palsy UK is a good organisation to contact and they have support groups around the country that you can go to and meet others with similar problems

Wishing you all the best with your recovery

Karen

[leslizmac in reply to Hidden]

Hi Karen

thanks for your reply, it does help knowing others are going through the same as me and you totally understand all the feelings , I have some lovely responses on this site already and that has been comforting , yes a couple of other people have recommended physio , I am back at the hospital nest wed so I will have a chat with the doctor,

lhope you have a good day today

Lesley x

[Catpin]

Hello

I am four weeks into Ramsay Hunt - a form of Bell's palsy - and I recognise everything you say - it's such a shock. I'm a portrait painter and have tried to look at it from an analytical point of view, but it does challenge your sense of self, but I have found that talking to lots of people, suffers and friends, forums like this, have really helped that you are not alone. I've found things start to get easier as you develop coping strategies, eating gets easier, vary your mouthfuls, take it slowly, be disciplined about keeping your eye moist, I use preservative free drops during the day and lacri-lube eye ointment at night. Wear an eye patch when you put your drops in so you don't have to read through a blur. Rest and sleep if you can.

I hope the pain killers work - see if you can get a specialist referral, my dr was next to useless, take ownership of your health and find out what you can do, this is what has worked for me, I know everyone is different, but I have felt the crippling lack of self esteem, the desire to hide, the horror of eating out for the first time, the stares, the comments, but it gets better, talk to experts but from what I've investigated recovery is good, and I've started seeing improvements already, which is becoming exciting and you'll be surprised how normal you start to feel again with just the smallest improvement.

The best advice I received, and I've repeated a couple of times on here - you are poorly, be kind to yourself xxx

Happy to chat more

[leslizmac in reply to Catpin]

Hi ,

thank you for your reply , it certainly helps reading that others like yourself totally understand what I am going through and it filled me with hope hearing you are finding a slight improvement. Thankfully last night the new pain killers worked and I slept for 6 hours , pain free !!! I have got up today trying to stay positive , put a bit of lipstick on to try and feel normal and styled my hair.... sounds pathetic in the grand scheme of things but I already have a low self esteem about my looks.

and you are right I do feel poorly , my limbs are aching today and I was wondering if that ties in with symptoms ?

hope you have a good day , and thanks again for your reply

Lesley x

[Catpin in reply to leslizmac]

Hi Lesley, glad you got good sleep - get as much as you can, it's so healing. Whether it's Bells or Ramsey Hunt I believe the underlining cause is a virus, so your body will be fighting it, so get rest. I ached everywhere, had terrible neck aches, and found I had really low energy despite being on steriods, which normally peps me up. So rest, eat well and do things that make you happy.

I don't know how to put this without sounding a bit hippy, but you start to realise what makes you you, I'm pretty vain I guess and this has made me realise you are who you are regardless of your face - I thought people would act differently, I thought they did to begin with, but I was projecting misery and fear, hunching my shoulders up, trying to be invisible - then I realised - I'm not a different me, stand up straight, be happy and myself, and honestly, your personality just shines through. Been a massive lesson for me, and the people who know and love you will tell you your face is getting back to normal/that they don't see the palsy - because I honestly think that they just see you coming through, not the lines and shapes and marks that make your physical face. I don't mean to go off on one - but as an artist I find that painting a physical likeness never guarantees actually capturing the person.

Be positive, allow yourself to cry and be vulnerable sometimes, but know all things pass x

Cat

[leslizmac in reply to Catpin]

Hi Cat

You sound a very positive philosophical person and very inspiring, the thing I have realised today from all the replies I have had is how through these awful tough times in life you can come across the most amazing people.

I have been looking around online for support groups that meet up but cant find any in my area ( southport) north west England , every one seems to have known someone who has had this but this is a first for me.

My eldest daughter is coming home for a few days this evening so that is making me happy , keep in touch

Lesley x

[Catpin in reply to leslizmac]

Shame, I'm South, the support I've had online from here has been brilliant too. Good luck with your recovery, keep positive and keep in touch too x

[Lauraov]

Hi I had bells 3 yrs ago this month and it was awful I had problem with my eye that and not being able to speak properly I had to take nearly 3 months off work a my job was taking calls from customers.i did find that about a few weeks later my face started to get better but it was a slow process everyone is different some people recover within 6 weeks but with me my face has never fully recovered and hoping to see a plastic surgeon to see if there is anything they can do my friends are always telling me they do not notice it but I do and feel I want to get help but don't let this worry you because 80% fully recover hope this helps as it is very common to as I found out when it happened if ever u want to talk get in touch all the best Laura

[leslizmac in reply to Lauraov]

Hi Laura , oh poor you having to go through plastic surgery, and for 3 years!! I feel beside myself after just over a week so god know how you must feel, I work n a children's nursery and caught the chicken pox virus which caused it, I am off for Easter at the moment but feel I couldn't face going back to work as I have to talk with parents and children all day and like you my voice sounds really odd. It has really helped me knowing that others like you totally understand what I am going through, its such a horrid thing to happen to anyone isn't it ? I would love to hear how you get on with the surgeon , my doctor told me yesterday as I am in a lot of pain it would suggest nerve damage and it may be something I will have to consider in the future.

I would like to keep in touch , even if to have a rant about it , is so hard trying to be brave in front of friends and family , they don't really understand how we feel

have a good day

Lesley x

[Neige]

Hi Lesley, thank you for writing your symptoms and thoughts out on this site. I feel very reluctant to share as it has only been three days since I've been diagnosed with Bell's Palsy. 

I would like to share my experience, as I can't stop crying and everyone around me keeps say the same thing or pretending that that can't see a difference. Or if they do it comes with a quick joke. Which is funny, but increasing annoying. Half smiling is exactly what keeps humour active. 

I woke up not able to blink. My family around me just said that I must of slept badly..."go and use the optrex in the bathroom". I reluctantly go and stare at my lazy eye, at this point I do but don't want to notice that half my mouth is not moving with the rest of my expression. I put this down to assignment stress and tiredness. 

Ok, I ask again does anyone notice a change in my non-blinking eye. I get the same optrex response. Feeling more frustrated I cry and wipe away the tears as quickly as they begin. My family leave for an afternoon flight and I finally chill on the sofa with my iPad. My energy levels deteriate and I can barely switch it on. I see my reflection on the dark screen and question myself again. At this point, I understand I must take control and call the doctor. I mention I think I might be having a stroke as it runs in the family.

I manage to get an emergency appointment at the end of the doctors day, only to be seen by a locum. This locum doc is using a doctor dictionary to check what she thinks it is and how many steroids to prescribe. The young doc shows me pictures of others and mentions this does happen... as if it's a typical spring day...as if it was something I forgot I ordered. I understand the emergency que of patients outside, feeling stupid that I didn't know Bell's Palsy exists! I gain the prescription hiding my face under shades and jog on. I leave believing after taking a few pills (like antibiotics) all will be fine and returning to 'normal' after a couple of days. 

Now after reading your response and the lovely replies I feel a bit better, that I acted as soon as I felt and notice the change. I have started yoga again, which has helped centre my over baring thoughts. Although I return straight home, as I don't feel comfortable outside. 

I cry because I shouldn't use my bike, as I'm unable to blink out the dust that may fly in. I cry because it's awkward to drink water without making a mess. (I'm adapting fast and squirting small amounts of water instead now.) 

Not knowing the time frame is what is getting me down. One of the replies "be kind to yourself, you're poorly". This also makes me cry. I need to get a grip, confidence leaving me more quickly then I can cope with. Weakness at is best hey.  

I'm three days in and feel isolated. I love my own company but love the outdoors.

My positive tips are to set alarms as I need to take five tablets a day...this has already helped in maintaining a better routine. (Using the eye drops at the same time too.) the alarms remind me how many tablets I've consumed as I don't want to over do it or forget.

Thank you again for all those who have shared their experience, apologies on writing more than a paragraph. I feel a bit better in sharing and I'm unable to cut it down anymorethan I have. I hope it helps somebody else.

I have many questions, but the most necessary one for me right now, is Bell's Palsy contagious?

Kind wishes,

Neige

[leslizmac in reply to Neige]

Hi Neige

So sorry to hear you are suffering with this horrid illness, I am on day 18 now and still have no movement. I went to see a consultant yesterday and he said I have a grade 6 paralysis which is the worst apparently. He gave me some anti depressants which are supposed to help with the pain. My pain is worse at night and can very often become unbearable . Like you I am fed up with not going out I am such a busy person usually but its right we are all ill and need time to rest and recover. Its the not knowing if you are going to be someone who heals quickly or long term which is the hardest thing. I think about all the people who have this and send out positive vibes to you all for a speedy recovery. You would not wish this on anyone but it is reassuring that others know how you really feel, no one knows unless you have it. Talking on here helps for sure and so please keep in touch even if its to have a good old rant about how youre feeling , I understand

best wishes

Lesley x

[Neige in reply to leslizmac]

Hi Lesley, thank you for replying so soon. It is reassuring just before I finally go to bed. 

I am sorry that you're on day 18 and have had no facial developments. Did your doctor refer you to a consultant? I BP pray that we all get to understand better and prevent others from gaining this.

Day three and I'm lost. Part of me would like to investigate and research (as I do with most things I have no clue about) and the other part is still wishfully thinking... oh well, it will blow over. All will return back to normal in a mo...(denial or too much hope.)

May I ask your age?

I have recently turned 30. 

I've read that BP is typically triggered between 10-40.

Also, I managed to get my usual doc to call me back and she mentioned to up my steroids dose from 60mg to 80mg in the first five days then decrease by 10mg after. 

Do you recall how many mg's steroids you were taking. I know every case is different and doctors will prescribe in ocordance to your age/weight and symptoms.

I would like to know. 

I asked my doc if I'm contagious, she mentioned not necessarily. Although she could not be sure. There is limited information our doctors know regarding BP and it is ridiculously scary. 

Trying to stay positive and on point, hopefully shake my eye/mouth/face into action. I'm a beginner in most things and have randomly  started  yoga (I had a class booked the same day I noticed a my lazy eye aka BP). It has been the only positive way I'm coping. Otherwise I think I would have just stayed in bed and cried. Oh and my speech has changed my mouth has become more lob sided. 

I keep asking myself what did I do?...did I not wash my hands well, did I eat something bad.  I recently had a root canal and then a filling and this numb feeling from three weeks ago has not completely evaporated so I feel in my case the dentist may have  hit a friggin nerve. 

Good night for now, and I will be sure to keep you posted with any new BP developments. 

Much BP solution wishes 

Neige.xX

[leslizmac in reply to Neige]

Good morning Neige I hope you had a good nights sleep. I actually managed to sleep for 6 hours last night which was a miracle ! In answer to your questions, I am 48 and I am an assistant manager in a childrens nursery school. Several of the children have had chicken pox the last few weeks and the doctors seem to think that is how I contracted a virus. One doctor thought I had ramsay hunts syndrome but when I saw the specialist on Wednesday he said I don't have any rashes or spots and thinks it is BP. I started with an earache and the doctor gave me anti biotics the two days later my face drooped and the second doctor said as she was not sure I should take myself to hospital which is what I did. The doctor at the hospital said BP an gave me 11 days worth of steroids 40mg a day. The hospital set up the app with the consultant not my own gp and to be honest the consultant said gp's don't know enough about bp to make a proper diagnosis.I have to go back to the hospital in 6 weeks and if there is no improvement he is sending me for a scan to assess the nerve damage and then take it from there. He did say that some people take up to a year to recover (not what you want to hear) When you said you wondered what you had done to allow yourself to get bp , I felt the same . I am very fit and play regular sports and was at my happiest I have been for a long time( some doctors say it is stressed related) I had been through a painful divorce and lost both my parents in the last few years but felt more recently really happy. Then this horrid thing hit me ! I have started taking vitamns b6 b12 E and omega 3 as I read somewhere they are good for nerve regeneration. I am also on anti virals Aciclovir for a week plus gabapentin - this is a slow release build up neuro pain killer, naproxen anti inflammatory, omeprazole - to help line the stomach, paracetamol and codeine for the pain. I have actually been really poorly with bp and have not been able to go out. I have never been on any medication all my life as never had any illnesses other the usual common cold! I don't think there is any rhyme or reason as to why we have got bp its just life! I have asked around to see if there are any support groups where people meet up but they are all down south, I live near Southport on the northwest coast. On a nice note my house looks like a florists as I have had so many flowers delivered , which is lovely , I have had a lot of support from my friends and family but inside you just want to cry all the time... I hope you have a nice day today the sun is out and I am going to sit in the garden Lesley xx

[Neige]

Hi Lesley 

I hope you're feeling all flowery and bright. It's a nice image, imagining you at home filled with flowers and good wishes. Inspired to share more with my friends, as I have been slightly intimidated and selective. Suppose I just need to build on this strength before  I melt down with the constant explaining/educating.

Day 6/7

I'm finding this journey a little bit better to handle due to this site. Your comment really has been food for my many obsessive thoughts. 

I feel I have had a similar experience, working with kids and also studying. Also someone very important passing away. Stress and anxiety at its nerve damage best. I too rarely take tablets even a paracetamol. Let alone have a prescription of anything. I cycle most places, play active games with the kids and have been very active. Although I had complained regarding a tooth pain, they couldn't find a problem and mentioned it was me having terrible flash backs over another unfortunate situation...which apparently meant I was grinding  my teeth at night. This was not the case, although 'they' made me invest in a gum-shield. Some time ago I went in for a filling and then it became an emergency root-canal. The following two weeks I had another filling. I believe in my case the injection hit my last nerve! 

Understanding that patience is the game. And I (we) must take time for our immune and nerve system to catch up with all that has been lost or hiding.

[I'm learning fast, that one should not waste no time investigating the best possible out come for YOU, pushing the medics/professionals  into pursuit for 'our' very best well being.]

I want to shout at my dentist I want to scream at my doctors. Yet that will only hurt my already sensitive soul into an unhealthy negative. 

Yoga and breathing exercises is my new mantra. Good music and singing, albeit I have no singing voice. My brothers laugh at me and this helps me laugh at myself again. 

Anxiety can cause more harm too. I cannot believe how dangerous thinking too much can be. Thank you very much for responding, I feel less weighted with frustration and staying as calm as I can be. In this first virginal week.

Much love and BP knock out!

Neige.xX

[leslizmac in reply to Neige]

Hi Neige , just wondering how you are getting on ?Have you had any movement yet? I am on day 25 and feeling a bit low this morning as still no movement. I know through reading your messages you have had the courage to go out to yoga, which I think is brilliant and very brave. I haven't been anywhere other than the doctors or hospital yet as I feel so self conscious. On the plus side my house is gleaming as I have scrubbed every room and cupboard within an inch of its life haha. I also need to rein in the eating , I have put 7 pounds on in the last few weeks, people keep bringing me chocolate !!! and I think oh go on I deserve it yikes !!! I went to the doctors on Monday and he has signed me off work for another two weeks. I think the problem I have had is the pain that has come with it, I am on so many painkillers its as though I have been on the vino all night!! Have you had any pain? I don't remember reading that you had and if its any consolation the doctor said to me that usually if you don't have pain you heal quicker. I hope that is the case for you Any way I would love to hear how you are getting on , sending you positive thoughts, Lesley x