(Left side June 2021)
You can see the down turned mouth on the affected side when I smile.
You don't often see someone get Bell's palsy on both sides of the face. In fact, the ER doctor exclaimed, "I heard this could happen, I've just never seen it before."
Having been in the medical field for 21 years, I knew what happened when the first side went down. I also knew the doctors basically say, "see you in 3 months, just rest and reduce stress. It heals on its own."
It wasn't until 2 months later when the right side went down, that I ended up in the ER, as this situation was unheard of.
I was given antivirals and offered steroids, but having heard my blood sugar was elevated, I opted for no steroids. I slinked back home and proceeded to sleep on the sofa for two weeks on and off all day and night. I had to patch both eyes at night and ended up on a liquid diet and then a soft diet as I kept biting my limp lips.
Bell's palsy begins with a set of circumstances:
A virus either active or latent is most common. It could even be Lyme disease, but most often Epstein-Barre, chicken pox/varicella, herpes simplex 1/cold sore, or the flu. It can even be an infection from a tooth or ear.
But, the immune system is compromised by either pregnancy, diabetes, autoimmune disorder, or recent vaccination. (In fact, my first side went down after the C-19 shot on the left arm. Then the right side went down and the second vaccine was on that arm). Within 24 hours of a cold sore on the left lip, that side went down. Then two months later, a cold sore on the right and it went down. I never get cold sores, so it was alarming. But, with a weakened system, the latent virus was activated. Any vaccine can be the straw that broke the camel's back for a weakened immune system.
The topper for the catalyst is stress. Extreme stress. Prolonged stress.
When this set of circumstances happens, the outlet of the facial nerves from the brain becomes inflamed. You can often feel a very painful headache at the base of your skull on that side, spreading to the ear. This usually occurs within a week and may last a couple weeks. I found cold wet towels helped, and trying to sleep through it. I compare it to having a sprained ankle and the inflammation hurts. This being nerves, it hurts a LOT. But, it only lasts during the inflamed time and then tapers off.
The facial nerves jut out from in front of the ear and across the face and neck. This inflammation causes paralysis of the facial muscles on that side as they aren't getting signals. The eye won't close or blink. Eating and drinking, speaking are all awkward.
People often suspect it's a stroke, but there are some common ways the doctors in the ER check. The #1 way to tell it's BP is that if the patient tries to raise that eyebrow on the affected side, the forehead is flat and smooth, won't wrinkle. That's a classic BP sign.
In the case of a stroke, word finding or speech may be affected, the strength on that side of the body (arm and leg) is flaccid or weak, and if you stick the tongue out, it juts to one side.
A smart doctor orders a complete viral panel to see if there is anything actively going berserk. He/she should also do a CAT scan to look for inflammatory culprits.
For 80% of the folks, they recover within weeks, doing nothing at all.
For the other 20%, after 3 months with it, it becomes a situation called sykinesis where the eye muscles and mouth muscles seem to think they work together. If you chew to eat, the eye will close. You look like a dog trying to eat peanut butter. The smile is miore like a snarl. The subtle emotions do not show on the face. It's like botox real housewives nightmare in full force.
As I've been in this for almost 3 years, I have some advice and tips -
You are going to get depressed and may develop anxiety issues going out in public. Your face wasn't a vanity, it was a communication device. You don't know who you are anymore, you look angry, people tell you to smile, you avoid photos, you avoid speeches because you might lisp your "P" letter as the lips don't work.
It really takes a few months into it before you relent and rejoin life and quit telling people right away that you have Bell's palsy so they understand your expressions. You may not seem like quite the same person you were before the condition. You're more shy, less flamboyant, perhaps quiet.
It may take a year or more before you feel confident in a restaurant eating without covering your mouth or looking down so folks don't see your face contort.
I'm almost three years into it and I still will only eat out with closest friends or family. Otherwise, I decline as the eye and face contorting when eating is really a miserable thing. As the lips don't press together tightly, I often have to hold a napkin in front of my mouth so food doesn't fall out. If I drink from a straw, my lips won't seal, so I have to hold the straw tightly with my hand to hold it in place. I generally order soft foods I can eat in small bites, no big burgers or salads or even soup as the lips don't seal around the spoon well.
My best advice is to relearn this face. If you are massaging and stretching and utilizing oils or lotion (I used coconut oil), your skin is better and by doing some exercises, you are building intended muscles instead of the ones that just happened from making unconscious expressions. So, all in all, you probably look younger.
You will have one eye that seems smaller than the other. I didn't think mine would EVER even out, but lots of massaging, especially the outer eyebrow area with stretches, and looking up and to the right (weak side) when I chewed and slowly my eye moved less and less with the mouth and the size seemed normal again.
The key is to eat small bites very slowly and gently. It goes against the American way of shoveling and gulping and not chewing fully, but it has a few side benefits like you have lots of time to register you're full. I was down to eating a half a sandwich and putting the other half in the fridge. I found that fries or chips weren't necessary with a burger or sandwich because they were more than enough. I lost 37 pounds in 2 months.
Try and find the upside, whether it's that you say no to commitments, rest more, lost weight, have a great skin, are paying attention to your health, or simplified your oversheduled life.
I also found that with vanity injured, I pretty much focused more on my worth in other arenas. I started taking classes, asserting myself in my career, visiting new places, daring to explore and photograph, paint, renovate, and pile a stack of screenplays for my career. I was more daring with my clothes choices, snubbing the standard wear and going for my own particular look. I did things with my hair. I actually went out without makeup sometimes (unheard of before).
I made a lot of new friends on the Bells Palsy Facial Paralysis support group on Facebook. I counseled others going through it, especially in the early days when folks often aren't educated on what it is or what it means.
Doctors do a piss poor job in general of preparing folks for this disorder. Mine never mentioned taping or patching the eye, eye drops, eye ointment, wearing sunglasses as I couldn't squint, that I would get extreme headaches as the inflammation is rising and then abating, that my balance might be off, my vision may go down the crapper with the muscles not working together, I might bite my lip when I chew, I may cry a lot. In fact, they don't at all broach the subject of depression and anxiety.
If you find it hard to function in daily life doing your necessary activities like watching children, keeping the house clean, going to work, etc., you need to talk to your doctor about a course of antidepressants as a possible solution, or some natural solution like cognitive behavioral therapy to clear up your thoughts and assumptions to get back to rational thinking and rational feelings, or nature's alternatives like indica cannabis or St. John's Wort. Counseling can help, but of course you have to make the shifts in how you view the condition and what it means to you. If you believe you must be perfect and now you aren't, or you think everyone sees you as defective, or you're a loser, then you will have overwhelming illogical feelings from these illogical assumptions.
Ironically, I used to run an anxiety disorder self-help group. I know my stuff! I have been recovered completely since 1990!
Reduce your stress at all costs. A lurking bad marriage, a nagging boss, too many commitments, too many responsibilties - do what you must. Honestly, this is like a giant wakeup call that you couldn't maintain the way you were doing things before.
I realized I could not stay where I was and expect stress relief. I needed relief right now. I wanted to go on disability because I wasn't functioning, but instead I sold my house and greatly downsized my life. fI moved into extended stay hotel just so I could have some months of rehab, rest, and focus on any and all treatments that might help me heal more. The minute I started getting proper sleep and no financial weights hanging over my head, my face began to improve at a faster pace.
What I did right with the first side was to not do anything - no manipulation, no exercises, no massage, just reduce stress dramatically. What I did wrong was not going to the ER because I had the underlying pre-diabetes I didn't know was lurking and so two months later my immune system was still stressed.
What I did wrong with the second side was panic. I began to immediately use a TENS unit to stimulate, massaged heavily, did exercises before signals were working and muscles could move. I would get so angry, I'd smile super big trying to force the flaccid side to cooperate. This was a HUGE NO NO. I paid for it with sykinesis.
The top pictures are smiling before Bell's palsy and now. The bottom pictures are straight face before and now.
I learned to wear a softer makeup without any harsh lines that might draw attention to areas. The bottom photo you can see my eyeliner before and that I'm not lining the top lid.
At this point, I struggle to get a tooth smile - it's very very tight. I also cannot puff out my cheeks. I can whistle if I lick my lips. I can't even begin to bear my teeth. The lips are quite paralyzed for the most part. The first side that healed well cannot get past what the weak side does, so it pulls back the lips to smile like it used to, but the other side exhausts it so it weakens a bit if I hold the smile as it's trying to help the other side.
I've been testing lots of options like acupunture, red light therapy, tapping, visualization, massage, stretching, meditation, but the thing that is helping the most is this -
1. I DO NOT PUSH MUSCLES. If someone asks you to smile, you might feel yourself pulling very tightly, making the whole face contort. Do the smile gently, slowly, concentrating only on the mouth, not the whole face jumping in and putting its full strength in it. Let your smile bloom and creep. If you feel your whole face contorting, pull back. That over exaggerated muscle use is what usually puts one into sykinesis. Back down. Go mild. Go slow. Let it build over time. One of the worst things I did when the second side went down was to overexaggerate and engage every muscle to the max - this drove me into synkinesis.
2. MIRROR EXPRESSIONS. This one has caused me much faster gains. A baby looks at mom smiling and repeats it. Take old photos of you before BP and imitate the feeling, the expression. Watch movies and imitate actor's expressions. Don't be afraid to use a mirror and look at yourself. You need to learn what this face is doing right and wrong. Don't be afraid to take selfies. I took them every 2 weeks just to see the progress. When you're in it, you don't realize the gains you're making but the photos show it. As well, taking selfies helps you to really look at your face and see what it's doing rather than just feel what it's doing.
3. WATCH YOUR MUSCLES AND TOUCH THEM. Pull back your hair, look in the mirror. Pay special attention to your neck muscles. You may not realize it, but they are critical to work with the facial muscles. There is an apron muscle in front of the other neck muscles. This runs down both sides of the front of the neck and when it's tight, it affects the motion of the musles beneath.
Stretch those muscles by putting your fingers below your collarbone firmly and then looking up at the ceiling, tilting head back. Tilt slightly to right. Tilt slightly to left. Hold 20 seconds. There is an apron muscle in front of all those muscles and it gets tight. If you don't stretch it, the muscles beneath get suppressed.
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