14 months with Bell's palsy!

[laurajd]

Hi my names Laura and I've had Bell's palsy for 14 months now. I remember it like yesterday, I'd been out in the morning, got home and went to drink from a bottle and it spilt all down my face, I thought I'd just missed my mouth so went to do it again and the same happened. My tongue felt funny and I looked in the mirror and my face had dropped on one side I couldn't smile and I honestly thought I had a stroke. I went to the doctors who prescribed me some steroids and told me I had Bell's palsy and would be back to normal in a few weeks. The next day it got worse so I returned to the doctors to be given a stronger dose than I was originally prescribed. I've had physiotherapy on my face, acupuncture, and caci facials all really to no avail. I even started drinking aloe Vera after a friend recommended it to me. So here I am 14 months later, my eye blinks but not as well as my good eye so that looks like I overblink, can't smile properly, raise my eyebrow or pout my lips without my face looking strange. Synkinesis is a big issue for me too. Feel really quite down and unsupported, and not sure what to do next. Is there anyone in the Derbyshire area or know of any clinics in this area? X

[FPUK]

Hi Laura, are you able to travel to Sheffield? We are launching a new support group there on 28 March. It's a really good opportunity to find out more about treatments available and meet others affected by the condition. Here's the link: facialpalsy.org.uk/advice/s.... If you email us on [e-mail] we'll see if we can find out what other services are available nearby.

[laurajd in reply to FPUK]

Hi yes I could travel but it's about 50 miles away from where I live but would be really good to find out about other treatments and meet people in the same position as me thank you

[Lucy_84]

Hi Laura,

I am also in a similar position. I have had bells palsy for 12 months now, it started a week after I had my second baby. It sounds like I'm at a similar stage to you. I have a slightly slower blinking eye, my eyebrow doesn't move, I can look a bit like I'm smiling if my mouth is shut but if I laugh or do a big smile it looks wonky. I am still seeing physio but not sure how useful it is, I have electronic face stimulator machine that I use but im not sure if it is doing any good.

I have been coping ok with it but I have yet to meet anyone who is in my situation but everyone seems to know someone who has had it. Do you feel like yours is still improving? Im stil hoping mine will keep getting better but it is so hard to tell at this stage.

It's nice to hear im not alone in this

Lucy

[laurajd in reply to Lucy_84]

Hi Lucy, it's nice to talk to someone who understands what it's like, we do sound like we are in similar stages. I am under a consultant at a local hospital and my next appointment is next month but I wouldn't of been seen for 6 months. I'm not sure whether to go back to the doctors and see if they can refer me for more Physio or to a specialist facial palsy clinic. Glad your coping ok, I struggle some days, just want to look like the old me, miss my smile more than anything. I'm not sure if I'm still improving or not, it's difficult at this stage I think as the improvements seem to be less noticeable, but I'm still hopeful that I will continue to improve or there will be another type of treatment to try. Thank you for replying to my post it's really nice to talk to someone in the same place as me

Laura

[Lucy_84 in reply to laurajd]

Yep im exactly the same as you. I don't really know where to turn for advice now. I see Ear nose and throat specialist about every 6 months and they just say give it time. The physio and my doctor has now recommended I see plastic surgery department for further advice but I definately don't want anything so intrusive. That was quite disheartening. Im thinking of trying acupuncture or bowens therapy or at least asking someone who does these treatments for advice. Like you the worse thing is missing my smile.

I would go to the Sheffield support group but I can't make that date which is a shame cos it would have been useful.

Lucy

[laurajd in reply to Lucy_84]

No I don't really know where to turn for advice now either, I've tried acupuncture which I think did help a little but I haven't had it for months as i had more appointments than I should of on my referral from the doctors. I haven't tried bowens therapy im thinking of looking into that. I'm not keen on plastic surgery either, have been thinking about having a gold weight in my eyelid as my eye has been getting quite dry and sore recently but again I'm not sure. I'm going to try to go to the Sheffield support group if I can as would like to see what advice/information they could give me and will happily let you know what they say, it's a shame you can't make it. Whereabouts are you in the uk if you don't mind me asking?

[Hamjack]

Hi laurajd,

So sorry to hear your story. This is a horrible illness and people just don't understand how it impacts on everything.

I am 3 months with RHS and have started using Bowen Therapy to help me. I find it helps my face feel more relaxed and helps me feel more relaxed as well. I have started to get some very slight movement back in my face and can't say whether this is attributable to Bowen Therapy for sure but I think it is and the movement coincides with when I started the treatment. It's worth a shot and is a really gentle relaxing therapy.

I know it's hard but stay strong, stay positive and focus on your health.

Take cares

Hamjack

[laurajd in reply to Hamjack]

Hi hamjack

It's not nice and people who haven't had it don't really understand so it's nice to talk to people in the same situation. I'm so glad your seeing improvements, it's still early days but it sounds like Bowen therapy is working for you, I might look into this for myself. Thank you for your kind words and I hope you continue to see improvements over the next few months.

Laura

[Hidden]

Hi Laura my name's Karen I had Bells Palsy 4 years ago I found the GP and the surgery useless He gave me Steroids immediately after diagnosing it and told me it would all be back to normal after a few weeks That was it I had to sort out other treatments myself Got physio which didn't help that much I've had acupuncture I would recommend it but it's not a permanent remedy It only lasts a few months I have a gold weight in the eyelid that helps me blink

My family and friends have been very supportive but they have no idea what it's like to live with the problems the BP has left me with

I went to a new support group through the Facial Palsy UK charity and it was so nice to talk to others with similar problems so do try and get to one

[laurajd in reply to Hidden]

Hi Karen, yes I think at my surgery they just don't know enough about Bell's palsy to recommend or send me to the right place. I'm so glad I came across the facial palsy uk charity as its so nice to talk to other people who know exactly how you feel. I'm hopefully going to the Sheffield support group at the end of March. Which support group did u go to? My friends and family have been supportive but like you they don't really understand how it can make you feel. Can you tell me abit more about the gold weight as I'm considering having this done at the moment, how did they do it etc?

Thank you

Laura

[Hidden]

The support group was a new one set up for Birmingham and the Midlands It was in Birmingham but the next one at the end of April is in Coventry

I had the gold weight done privately as I have insurance through work It was done under sedation but it can be done with a local anaesthetic No way did I want to know what was happening! It has helped a lot as I wasn't able to blink and had to push my eyelid down manually to clear the tears I can't feel it at all You can see it under the lid of you look closely but nobody notices unless I point it out I wear glasses so it can't be seen at all I would recommend having it fitted if you can

My main problem that I've had since the day the Bells Palsy started is that when I look at something and concentrate for a while especially small print my vision blurs as the eye folks with tears that won't drain This has caused a lot of problems as I struggle to read look at computer screens etc My vision is blurring now as I type this on my phone I use a Kindle to read books as I can make the typeface bigger and fortunately I don't have a job that requires using a computer This is something I will have to live with as no one seems to have a clue how to rectify it

Do try to get to the support group

Karen

[laurajd in reply to Hidden]

Hi Karen, Coventry is probably closer to me than Sheffield so might take a look at that support group. How were you after you had the gold weight inserted was it sore, did you have to keep your eye closed or anything? Sorry if they seem daft questions just want to know more. I only seem to struggle when I eat sometimes my eye get really watery and I can't clear it with my blink. I'm really hoping more money will be put into research for this as its so disheartening when they have no answers or suggestions to help . Will definately go to a support group as I think it will really help to meet others like myself

Laura

[Hidden in reply to laurajd]

I had very little discomfort when the weight was put in Just took paracetamol for a few days and put cream on to prevent infection It was only sore if I knocked my eye by accidentI think the stiches were dissolving ones so no problems Even with the weight I do occasionally have to manually push my eyelid down to clear the tears but I would say it's well worth having put in if you can

The support group has been named Midlands Facial Group the meeting in Coventry is on 25th April

If you are interested you need to contact the Facial Palsy UK co ordinator to let him know you are going Its Dr Karan Singh Arora

[e-mail]

[laurajd in reply to Hidden]

I think I'm going to have to have the procedure as my blink does not go all the way down and it's getting very sore recently. thank you for your advice it's nice to talk to someone like me. Thank you for the details on the support group I am definitely going to go along.

Laura

[Hidden in reply to laurajd]

Good Look forward to meeting you there

Karen

[laurajd in reply to Hidden]

Great will be nice to kind of know someone there, Laura

[Lolitabendita]

Laura, Im so sorry this happen to us. I pray for all our sakes that God is merciful to us and heals us. Im so devestated and frustraded. Why me why me?

[Mex1]

I understand how u feel I get down and miss the old me when I look in mirror not being able smile properly, eye closes when I yawn, or chewing food don't think it's ever going to improve, I live west wales don't think any support groups here, gp only saw me 2 - 3 times it's get on with it attitude here, x

[iaingraham]

You poor thing, I have it too just for the last few weeks but its difficult to get the movement back. I am trying to find someone who has it too just to learn a bit more about it.

Lonely old thing to suffer on your own, isn't it?

[jon2010]

Hi laura, just read your post, and noticed it was posted 3 years ago. How are things now for you? Could you offer us new comers to this situation any insight. Love to hear from you.

[Bawa786]

Just read your post .How are u now? Are u recovered fully????

[jon2010 in reply to Bawa786]

Quick update. I'm into my third week BP. Completed the course of prednisolone, as prescribed on day 2 BP, and have movement coming back slowly but surely. Eye site slowly returning back to normal, hearing as well. Blood test came back negative for Lyme's disease and no signs of Herpes Zoster. I did take the week off work, and just calmly took the meds and stayed indoors. For my son's, my back has given out, but they assure me there is no connection to BP. I've been reading up on some alternative theory's that suggest this could be psychology related. I.E. deep emotions. Not sure how to look into that further. So for now, I would suggest catch it quick, do the meds, and a nice calm environment to recover in. Hope this helps.

[jon2010 in reply to jon2010]

Sorry. Not my son's........ My sins.

[diamante]

keep doing excerise a lot it would help your eyes. Close- open techniques.

I had the same years ago but i dont remember taken other meds than painkillers.