Need help please - Newbie with left facial palsy

[QueenC3060]

Hi guys,

Thanks in advance for reading my post and if you reply I really appreciate it 💗

I'm just wondering if anyone can give me some advice please? I have had my facial palsy since 2012 but over the last couple of months I keep getting alot of facial, neck and ear pain and headache on the affected side. Also my affected side keeps swelling.

Can anyone tell me if this is normal or if it's something you have experienced please? Feel like I'm going a bit mad to be honest.

Stay safe and well

[Mrs_Ballroom]

I’m new to this forum and have received great information just by reading through other’s conversations. I’m so sorry to hear that you’re experiencing this pain. I have neck pain too & ear discomfort but have only had Bell’s for 8mo so I’m new to this condition... many others on this forum spoke about the center for facial recovery in Maryland being very helpful. I reached out right away and made a televisit. Maybe they would be a good recourse for you: Facialrecovery.com

I would love to hear how it goes. Best of luck!

[QueenC3060 in reply to Mrs_Ballroom]

Hi hunny thank you so much for reading my post and reaching out to me I really appreciate it.

I hope that your pain stops soon and that you make a full recovery. Because I have had this for so many years now I think I am pretty much resigned to the fact that I will be stuck like this forever

Stay safe and well xx

[FLNJFL in reply to QueenC3060]

Hello QueenC3060, I understand how hard this can be. I had my first attack (right side) back in 2004. My recovery was slightly delayed (about 4 months) but I made a near full recovery. I only a few lingering issues like my eye would "cry" when I ate. Then 2 years later I got it on my other side (left side), but this time it was 100% gone in about a month. Then 13 years later I got it again on my left side. This last time has been the difficult one. But what I can say about my experience is that the body can do amazing things so don't give up hope. One example.....the issue I had for years with my eye "crying" when I ate, the issue from 2004, went away over the years. I noticed around 2015 it had stopped. That was over a decade after my injury.

From my own experience I have seen myself get better whenever I go through a period of lower stress so I would say do whatever you can to bring stress down. Also, I've been a bit of guinea pig to find things that help me. Infrared light therapy, massage, and stretching have helped a lot. Also, whole-body wellness has helped me like regular exercise, saunas, inversion table, and also meditation and journaling have been great for stress relief.

And I second Mrs Ballroom's suggestion of contacting the center for facial recovery. I've had several televisits with them and improved from about 65% recovered to about 80-85% recovered. I plan to go there in person soon to see if I can closer to full recovery.

I truly believe that improvement can happen even many years after injury so don't give up.

[Craftylucyloo]

This is really interesting and what I was looking for. 2 years ago I was diagnosed with Bells Palsy but they got it within 72 hours and had the steroids and it pretty much cleared up. Now and again I get a tingling in my lips but recently I have been getting a tender, sensitive face on the same side as the bells was. I am wondering if it could be connected. It feels like I have been slapped in the face it sort of feels hot and sensitive when I lightly touch it. Has anyone else experienced this? Also interesting to see the response that someone has had it more than once as I thought that couldn’t happen. Thanks for reading.

[QueenC3060 in reply to Craftylucyloo]

Hi hunny thanks for your reply. Mine originally started 2 months after I had my son, they gave me steroids, it got slightly better but didn't completely go. Then every time after that it happened again steroids and they sent me to hospital where the stroke team were waiting for me, all they ever told me was that I had hearing damage in the side of the palsy. The steroids didn't do anything after that and my face kept "going" as everyone called it. At one point my eye wouldn't shut and they wanted to sew it closed but I refused. I kept questioning whether it was Bell's Palsy after it had happened about 15 times, never got an answer then about 5 years ago a neurologist said it was a left facial Palsy and I wasn't told anything else after that.

Now it is a constant thing, speech is slurred alot, I get almost constant headaches, ear ache, face and neck pain, face feeling like it's on fire, I have started drooling badly in my sleep, my sleep apnoea is worse, my partner constantly wakes me up because of how loud I have started snoring. I get the tingling in my lips and also across my nose too, sometimes separate, sometimes at the same time.

I am so sick of it all the time. When it's really bad me and my partner have to use hand signals or I have to write it down for him to understand.

I am just at my wit's end with it to be honest. It has a massive impact on my mental health and anxiety

Hope you are doing ok. You can always message me if you need a chat xxx