5 days since I woke up: I woke up on Friday... - Facial Palsy UK

Facial Palsy UK

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5 days since I woke up

Bal02 profile image
12 Replies

I woke up on Friday with Bells Palsy. I am so scared and can't stop crying. I am taking steroids and anti viral pills and b12 and vit c. I have convinced myself I will never get better and I look like a monster. I won t let my children see me or my sister and just sit in the house. Can anyone suggest anything to help me. My husband has gone to work so I'm just sitting on my own. Has anyone else fully recovered at age 58?

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Bal02 profile image
Bal02
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Tree75 profile image
Tree75

Hi there. I am now 6 wks into my recovery & slowly improving!! It affected my right side of my face with my eye not blinking at all!!! Now my mouth isn’t so drooped & my speech is so much better. Eye still doesnt blink (does close though) but it’s slowly getting there. A few things I personally did to help myself was buy zinc, B6, B12 vitamin tablets, use eyedrops regularly & tape eye shut at night. I have only just recently stopped taping it at night. I also had quite a few sessions of Acupuncture & am now trying Reiki. This I feel might not help so much on the physical side but it really helps to relax you mentally!! Eat well, drink plenty of water & exercise a bit as well as get plenty of rest!! I hope this info helps you. I know you said you were 58 but just remember it doesn’t matter what age you are it seems everyone’s recovery is different!!! Just remember POSITIVITY goes along way too, don’t give up!!! That’s what I have done!! Good luck with your recovery 🙏🏼

Bal02 profile image
Bal02 in reply to Tree75

Thank you for your reply. I am still very scared and keep crying but everyone just keeps telling me to wait. Can you please tell me what you use to tape your eye up with. The tape I got from the pharmacy is quite sticky and difficult to remove. Also I am having trouble sleeping. This has been the worst thing to ever happen to me and no one really understands unless you have been through it. Are you going out and about and carrying on with your life? I would be very grateful for your reply. Thanks

Tree75 profile image
Tree75 in reply to Bal02

I used Transpore tape bought from the chemist. I did use Melolin pads as well as the tape first too, with micropore tape on sides to hold down. Look on Facial Palsy UK website on eye taping etc very useful.

Yes I am getting on with my life because you have too. I did in the first 2/3 weeks not really venture out, but then had a few social events to go to which I was really anxious about but glad I went as it helped with my confidence. I am off work still but hoping to go back end of the month!! I just try to keep as positive as possible!! I did have trouble sleeping at first but now a lot better. :)

lsully profile image
lsully in reply to Tree75

I am 54 and was diagnosed with Bells Palsy just about 6 months ago. I know exactly how you feel. And I know the feeling of just wishing it would hurry up and go away and that you could return to "normal" and go back to living your life. On top of that there is so much conflicting/contradictory information out there about what to do and not do. I did do accupuncture within the first week which felt really good if you can afford it. That led to 2 sessions of electrical stimulation which I was told later I shouldn't have done. It's true that you just have to wait. A couple things I found helpful: laying my cheek on a heating pad to increase blood flow to the area and decrease pain in my ear, ibuprophen for ear pain. I also took selfies and sent them to my friends (and I don't have the highest self esteem); but making a joke of it and being able to laugh at how terrible I looked was really cathartic. My friends and family completely sympathized and supported me. You also start to hear about their friends and family members that had it (and recovered) and you don't feel nearly as alone and freakish and isolated. I don't work outside the home so I can't speak to how to approach that. When I was at my worst I would preface meetings with "I have Bells Palsy" so people knew and would then just try to move on. With superficial contact with people ie. store clerks, manicurist, etc. I wouldn't say anything. We are our own worst enemies and harshest critics and BP hits us hard where our self esteem lives. 6 months out I am just starting to accept that I will never look exactly like I did before and that is ok. BP is a disease and I caught it. I can' believe I wasted 6 months of my life wishing it hadn't happened to me. Also, there is an online place called something like besteyepatchever that has nice eye patches that fit under glasses. I would recommend them Good luck to you.

Bal02 profile image
Bal02 in reply to Tree75

Hello, can I ask you something. I can feel little tingles in my face around my eye and forehead and nose. Do you think this means anything, could this be a sign that something is happening. Sorry to message you again but everything is so conflicted on the internet. Thank you very much.

lsully profile image
lsully in reply to Bal02

Yes, I think the tingles are a sign that you are healing. I have heard that the middle of your face heals first and that the nerves furthest away, forehead and chin, take the most time to heal because the nerve branches are the longest there. I heave heard that trying to work the muscles of your face at this point is useless and unnecessary. BP is really a nerve problem and not a muscle problem. Apparently it takes a very long time for facial muscles to attrophy so that isn't a concern for you at this time. I didn't know that and was pushing my face into all sorts of positions. Another thing that was recommended was steaming my face over a pot of bowling water. Anything to keep the area warm. Also cover your ear in windy situations.

Edensgma143 profile image
Edensgma143 in reply to Bal02

Do your best not to stress. I know from experience it can make BP worse. Try to keep your mind occupied with other things. God bless you! I know BP is a horrible thing to go through.

MichaelTT profile image
MichaelTT

I was diognosed with BP in 2016 at the age of 50. Totally understand how your feeling it’s quite normal don’t think that you are by yourself were all here to supporting each other even though it’s over 2 years since it happened to me and I’ve fully recovered. It is painful especially at the back of the head behind the ear and often difficult to sleep with comfort though remain positive and don’t get stressed easy to say I know through experience but things will get better and you will get your smile back be patient it just takes time for the nerve to regenerate. I’m a Senior Health & Safety Consultant and still did client visits throughout the time I had BP people are more understanding than you think. Forget the internet it will only make you feel worse, focus on yourself and remember you are an individual and things will get better quicker than you think. Take care. Mike

Bal02 profile image
Bal02 in reply to MichaelTT

Thank you so much for your reply which really helped me. This is day 12 and I am still very scared and nervous. You are right, the internet does make it worse and I get no relief so I will stop. I wonder if you would mind telling me a little about your recovery. What were the first signs you noticed? What sort of things did you do to help yourself and what made you feel better. I keep saying to myself that I will get better but it is so hard to be optimistic when I can't bear to look at myself. Thank you. BW

MichaelTT profile image
MichaelTT in reply to Bal02

Being scared and nervous is normal, the human mind loves focusing on negativity though you have the ability to make this a real positive and focus on what you can do and what good things you have in your life. Truely believe that this condition is only temporary. I believe that with the power of positivity you can achieve anything including acceptance. Remember you are still the same person nothing will ever change that, accept this small short term challenge you will get through. For every negative thought think of two positive thoughts.

After taking my course of Prednisolone, I was aware that many other people used B12 vitimin supplements so I had 1 tablet containing 1000ug of B12 everyday, I understand that its thought to be good at assisting nerve repair/regeneration though I sought advice from my Doctor first before taking just to make sure I was doing the right thing. I had total paralasis on the left side of my face and cound not close my eye but at least no one could stare me out, I won every time.

After about 21 days from my diagnosis I began to see some movement on my eyebrow and nostril and shortly I could start to move my mouth a little and within no time movement returned in the whole of my face. I've must admit that I've never been so excited to see a smile it was great!

Its really important to aid your recovery with plenty of rest, relaxation be stress free and learn to accept and be gentle with yourself, trust me it really helps.

After my recovery I continued with taking B12 suplements still had some residual pain in the back of my head but the pain eventually went.

Be strong you will be a winner.

Carla_M profile image
Carla_M

Hi there. I got Bells Palsy 4 days before my 60th birthday 4 months ago. Like you, I was very scared and thought, being older, I may not recover. Everyone is different and it’s dificult when you read about people being fully recovered at 6 weeks! I too couldn’t face people. I work in a school so I was particularly distressed at how this was going to go with pupils. I was very anxious. I took time off.

I started noticing changes about 5 weeks. My face rose back up and I had very very slight movement in the cheek. The improvements slowly increased. I now 4 months on have a stiff partial smile and that made a great difference psychologically. I still have watery eye that doesn’t shut properly and I’ve started getting synkinesis. But I’m now under a facial physiotherapist who is going to give me a programme of exercises for that. But the movements are all slowly coming back.

As for socialising, as it was my 60th, friends had already organised a posh tea! I felt I couldn’t let them down so one picked me up and I went armed with straws to drink my fine tea! I had to cut up the scones to small pieces to eat. My friends were really supportive and I made jokes about it. I think being made to do an event early on like that helped me so I didn’t avoid it for long. I also had to tell my sons as they were coming home for my 60th the following week. They were shocked to hear obviously but said they read up all about it and were reassured. They were also supportive. Going back to work was the challenge. However I also had a lot of pain in the first 3/4 weeks so there was no way I could work. I also had to make some adjustments to work to ease on and not have too much screen time.

When I did go back I emailed the staff, told them what had happened, explained how far on in recovery I was and made a joke about some aspects . It made it easy for people to come up to me and offed support. Many said they had a relative/ friend etc that had it and I’ve found other friends that had it on the past. Then you have to take with a pinch of salt when done say ‘oh it was all over in 2-3months’. I’ve found others that have said a year to 18 months and think that’s more reAlistic.

Well that’s all I’ll say for now. Just hang in there and get all the help you want. Do use facial.palsy.org. It’s brilliant. Ask for referral to facial physiotherapist when you start getting your movement back. Don’t force exercise. Take care

25clai profile image
25clai

It is a really tough time for you. I had shingles atsame time as Bells and the pain was awful. My husband forced me to go out and face the world when it first kicked off, only short trips to get food etc, but the change of scene did me good and made me face the public. There were 2 reactions to me. Some people would completely shy away, but others asked what was wrong. I found it useful to have an automatic brief reply. I couldn’t speak very well, as I had severe palsy, so I had to convince people I hadn’t had a stroke. As time has gone on,my acceptance of the symptoms has helped me cope better. I make a lot of jokes, when things go wrong eg dribbling, spasms, speech issues, it gets me through. Your family will cope better if you talk to them about it, how it makes you feel. Make them aware of the issues you have. I used to eat very slowly to avoid biting my gums or at least try to. I got more support explaining it all.

My advice is don’t shut the world away ( even though it’s understandable), your family could provide you great support, as can close friends . I’m still recovering 18 months post onset. I recommend transpore tape for your eye at night , every other tape affected my eye. I did 4 months of taping and now have an eye weight to keep my eye shut at night. If your eye is a problem long term, I recommend the eye weight . I tape it on each night , less fiddly than just tape. Hopefully you will get over this quicker than me and not need this.

Good luck

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