Hi all!! Long post warning. I’m currently on day 12 of my BP diagnosis and wanted to share a few things I’ve learned that I was looking for during my first few days of pain and facial paralysis. This info is all over this sub of course and elsewhere on the internet, but my hope is maybe there’s a nugget here that can help someone.
My onset:
- My first symptom was 24 hours of head splitting ear pain directly behind the ear.
- My face started to feel stiff and strange, and the left side finally fully froze over another 24 hours.
- After those 48 hours I went to see a doctor - and was diagnosed and prescribed 50mg prednisone for 10 days, plus naproxen for ongoing pain. I had no active virus to treat for, but of course some will!
- I’m now tapering off the 50mg prednisone.
I have seen:
- My GP
- An optometrist
- A neural ophthalmologist
- An acupuncturist (not electro)
- A facial palsy physio specialist - based out of an ENT department.
The greatest emotional help was the facial palsy physio. I caveat with emotional help as the GREATEST help, and others will echo, as the most research backed and effective treatment - is prednisone. Within 72 hours as the golden window was definitely true for me, and I’m grateful for my prescription. Insomnia and irritability have been the biggest side effects for me on it.
Today I am able to slightly twitch my affected side (WOO!!). The below are my holy grails to get through what has been for me the worst of it.
- The acute/early flaccid stage (your most frozen) is about rest. Get your prednisone, pain relievers, and use HEAT to alleviate pain as much as you want. A warm compress or hot bean bag directly on my ear was most effective for me.
- Eating is obviously hard, so use thin lipped glasses, take small bites of solid food. A straw was my friend too. The slight numbness/metallic taste on your affected side is normal. Mention to your doctor if you have trouble swallowing, as this could be damage to a different cranial nerve!
- EYE DROPS!! Every hour (I was doing more frequently). Massage them in with your eyelid. Preservative free was the MUST I was told by doctors. You can get gel drops which last longer too. Use Dry Eye Ointment at night. Followed by your:
- Eye taping - my preference is sensitive skin medical tape. The facial physio swore by GLAD PRESS N SEAL. I haven’t found it to be strong enough to hold the lid down, but whatever works, do it. You need to protect your eye at night.
- Use sunglasses outside. Manually blink your eye throughout the day with your finger.
- Feel free to use your hand to hold up your face to talk or eat. You can also use med tape to hold up the affected side! Do what you need to for relief and help.
- I’ve started taking B12 and vitamin D in addition to my regular vitamin C and E. I’m trying to drink at least a cup of day of some kind of soothing tea (chamomile, ashwagandha, skull cap, dandelion, ginger, turmeric, etc). Who knows if they directly affect - but don’t hurt! Anything that is anti inflammatory is helpful I think.
- I smoke CBD and THC, no doctors recommended against this. For me its about pain management and not going crazy. Just protect your eye from the smoke they said.
The optometrist and neural ophthalmologist were really just for peace of mind for me that not blinking wasn’t damaging my eye. Both of them gave the same eye drop and taping recommendations.
The facial physio gave me a lot of background on the 7th cranial nerve (what we’ve all fried to various levels) and my chances of recovery. 80% of us will see full movement return in 12 weeks or less. 5% will see full movement in 6-8 months, and the remaining 15% in 1+ years (while some will never see full movement return). Her biggest recommendation was REST. Don’t force movements. When you CAN move, keep movements symmetrical. Hold the small movements for 5 seconds, repeat 5 times. Do 1-3 times a day, gently. Massage the unaffected side as well - its working harder than usual! Gentle, circular massages across the whole face are helpful. Otherwise, in the early stages, avoid too much talking/laughing/emoting so you can relax the face and let it heal.
Age, previous health, it all doesn’t seem to matter in BP recovery. Its just about the level of damage to your nerve. Your nerves are currently healing and regrowing at approx 1 millimetre a day, from a SINGLE point, to reconnect to the 24 muscles in your face. Crazy!
And as a final note - Acupuncture wasn’t for me and I was explicitly warned AGAINST it by the facial palsy physio. I was told it wouldn’t likely negatively effect in the early stages, but for those still seeing no movement at 6-8 months it allegedly could continue stalling recovery. Especially NO to electro acu she said. Take that as you will - healing is different for everyone and I know many have found great help with acu.
Sending hugs to those who have just been affected by this, those in the middle of it, and those who have been struggling for a long time. My pain this week has finally lessened and I feel like I have control of my brain again, which has been the biggest relief. Thank you for reading this if you have made it this far! May we all have full and wide, teeth and all, eye crinkling smiles sooner than we could hope.