Bell's Palsy- what do you wish you knew when you first got diagnosed?

[Amy9713]

Hey,

So I'm aware for many Bell's Palsy is something that can come as a shock and you suddenly have to adapt quickly to many things such as eating, drinking as well as how your hearing and eyesight can be affected.

But I'd love to know which things you weren't told by a doctor that you wish you knew.

These could be practical things such as:

-wear sunglasses outside when windy/cold to block out the wind but also the bright light.

Or they could be about what is actually happening such as:

-The nerve that is affected is near your ear so you are likely to get pain in your ear.

Anything that you think people who are diagnosed with Bell's Palsy would love to know or things that would help in the first few days when you are trying to adjust and often are feeling alone.

I'm hoping to feed this back to help update the Facial Palsy website with some practical things but also to encourage people that they aren't alone. I've felt so supported since finding this site and others on social media, but I didn't find any until I was about 7-9 days in.

[Jazzmanstar]

To keep your neck warm and not do not let it be exposed to cold weather this makes it worse always keep it warm. Use a heating pad on the side that's affected when your experience the awful pain behind your ear it eases the pain some.

[Audreysews]

I wished they had been a qualified doctor who understood what we were going through......

[Amy9713 in reply to Audreysews]

I think we all wish this! I still do now.

[25clai]

Keep dental hygiene thorough , and if sores in mouth develop use salt water rinses ASAP. (No one told me how BP can affect mouth/ teeth ,especially a risk in early stages)

[Amy9713 in reply to 25clai]

ooo This is a good one! I remember how difficult it was to brush my teeth when it first started and I'd get really annoyed at it, but I'm definitely glad I did after hearing how much it can affect them.

[AwStrom]

I took vitamins religiously - B12, L-Lysine, and Fish Oil. I also a huge batch of freshly ground turmeric and ginger tea. It was super concentrated, so I refrigerated and would mix w/water, heat up, add honey and voila: anti-inflammatory tea.

No one really understands how deeply frightening this condition is. It’s ok to cry it out. It’s scary.

That said, I found that I began to recognize kindness and love on a completely different level. I was grateful for that and tried to focus on that. Remember: mind, body work. It is difficult, but makes it all a bit easier.

[Amy9713 in reply to AwStrom]

Love the advice about crying about it. I didn't feel that I could cry and didn't until about 16 days in when something went wrong and I just broke down in tears in the middle of a coffee shop.

[Hidden]

Rest.......

I was told to go home and carry on with everything as normal and couldn't understand why I was so tired and listless. I tried to fight it but now realise that rest is so important in the early stages.

[Amy9713 in reply to Hidden]

Yeah, I kind of feel that I haven't rested well enough to start with and am now feeling the after effects of it.

[jj1953 in reply to Amy9713]

Rest is definitely part of the recovery and I don’t think many doctors understand this if you don’t rest it’ll take longer to recover and certainly no stress. It’s already stressful without people giving you extra stress so rest as much as possible.

[Maxk2356]

Keep face relaxed as much as possible ie: put it into neutral, let jaw go slack. This would have helped early on when nerves were firing up to stop some synkinesis which crept in. All best for recovery.

[Amy9713 in reply to Maxk2356]

I never thought of that, but makes so much sense!

[sofiaO]

I wish they told me to taper off the steroids. Even after a 10 day course, I was left with terrible steroid acne to the point I have permanent scarring now. I honestly think if the BP comes back I wouldn't take steroids again.

[Amy9713 in reply to sofiaO]

Good advice!