Kevin’s Story

Sleeping With One Eye Open

On November 29th, 2016, I was diagnosed with Bell’s Palsy on the right side of my face. Below is my best attempt to write the most complete walk-through for this as possible, because I couldn’t find one anywhere else. If you have any questions or need clarification, I’ll do my best to provide!

How it started

The days leading up to this were full of severe neck pain and very little sleep. Maybe it’s not like that for everyone, but it was for me. My face honestly felt fine! No indication it was something Tylenol couldn’t fix.

After dragging myself out of bed, I plopped onto the couch and took a post-sleep nap. I awoke an hour later, the pain mostly gone, but the side of my tongue felt funny. It wasn’t until I later tried spitting out my toothpaste that I realized something was amiss with my face. I’m usually a very neat, very contained toothpaste spitter… But not that time.

The progression

It began with my lower lip. You know the feeling when you come from the dentist after getting a filling? When the Novocaine is beginning to fade away? That’s what it felt like. It wasn’t totally numb, just not quite all there.

Slowly, over the course of the day, the rest of my face succumbed.

First my lower lip.

Then my tongue.

Then my eyelid.

Then my upper lip.

At least I could twitch my cheek a bit. However, on day two, I lost that, as well. After three days, none of the right side of my head was spared. No wiggling my ear or flaring my nostril.

The hospital visit

I called my mom and we went to the ER. “Stroke” was the word on everyone’s mind, but the word never came out.
After a physical exam and two brain scans, they determined it was Bell’s palsy. I had never heard of it until that point! The doctor ordered blood tests for Lyme and put me on Prednisone and Doxycycline. He also gave me Gentak for my right eye. The blood tests eventually came back negative for Lyme, but I finished the Doxycycline anyway. Always finish your prescribed meds, unless your doctor says otherwise!

The doctor said that on average people with Bell’s get worse within the first few days. Most see slight signs of recovery at the two week mark, and full recovery in 6–8 months. There are a lot variables, and not everyone heals at the same rate.

He also recommended physical therapy and facial massages, but only after I saw signs of my body healing itself. Otherwise, I could do permanent damage. Which is a thing I do not want.

My healing timeline

Everyone will experience and heal from Bell’s differently, so do not be discouraged if your body doesn’t heal along this same timeline.

I was horribly dizzy for the first four days, but it steadily faded. Fatigue was an issue, and odds are that was partly psychological. I talk about that below.

My mouth became very dry, so drinking plenty of water is important. Tea can be therapeutic and relaxing, both of which I wanted a lot of! Lip balm helped with the dry lips.

➤ After 7 days, my face had a constant dull ache. My neck and behind my right ear also ached a lot. My face was also very sensitive to touch. The vision in my right eye became blurred, most likely because I wasn’t able to blink. It’s very important to manually blink whenever you think of it! Using eye drops helped so much, after I figured out how to apply them without having a panic attack.

My hearing became very sensitive to loud sounds, to the point of hurting. Even certain tones bothered me, regardless of volume.
I became exhausted more quickly during physical activity. I was all-over more tired all the time.

A blog by another person with Bell’s talked about vitamin B12, which supports nerve health. Apparently it’s good for all-over brain function as well, which I could use more of anyway, so I picked up a bottle of 5000 mcg tablets. Cherry flavor, yummy… Mixed Berry was more expensive for some insane reason I can’t comprehend.

➤ After 9 days, I felt safe enough to drive again, but refrained from doing so more than necessary.

➤ After 11 days, the aching had subsided for the most part, and wasn’t spread over as much of my face. My hearing was still sensitive, but not quite as much.

Most importantly, by this time I had come to terms with what I had, and was much more at ease going into public! Much of this was mental and emotional, so having a strong support system made a world of difference. The best medicine is people you love and who love you!

➤ After 13 days, I noticed I could just barely, but voluntarily, twitch my lower eyelid! It was so slight, but such a huge encouragement! Could the B12 factor in here?

➤ After 14 days, I could twitch my cheek a bit if I really focused. Another encouraging sign! Loud sounds were still painful in my right ear.

➤ After 15 days, I had more cheek movement, but it got pretty sore from showing off to my family.

➤ From 16 to 24 days, I had passed the three week mark! Every day I saw very subtle improvements, while the barely noticeable ache slowly crept from one part of my face to another. A healing ache, I assume! My eye closed itself at night, but not tightly, and I still couldn’t quite shut it during the day.

➤ After 4 weeks, I had totally gotten over any mental obstacles! Back to work and enjoying it, and my face isn’t killing me at the end of the day. My smile has improved, but not by a whole lot. I was pleased to see I was able to wrinkle my entire forehead by this point. Also, slight nostril flare-age visible. Now it was just a matter of time watching my face improve!

➤ After 7 weeks, complete eyebrow movement had returned, and my face looked relatively normal as long as my expressions weren’t too extreme. I could brush my teeth with very few issues! Only very small areas of my face were still sore, and only when pressed on or rubbed too hard. My hearing was still pretty sensitive. Loud sounds (even specific tones) caused a quaking sensation in my head, it was very weird!

➤ After 14 weeks, when I began feeling stressed, I got awful pain in my face and neck. Based on other accounts I’ve read about, that may be continuing thing for me. Not a big deal, I simply need to relax more. What a curse!

Still some sensitivity to pressure, but in small spots. My smile was 95% back to normal! I was on the last leg of this journey.

Specific challenges

Below I’ll talk about the specifics of things I had to deal with, and what made them easier for me.

Work

I’m a photographer and part time graphic designer, so I use my eyes a lot. Between hours of driving, shooting, and staring at a laptop all day, there are plenty of ways to make dizziness and dry eye even worse. Take your pick!

I returned to work nine days after I was diagnosed, and I feel it was too soon. By the end of the day, I was pretty worn out and my face was sore from talking to people all day. Thank goodness I was able to take more time off to begin healing, both physically and otherwise. My boss was understanding. If you’re able to do so, I strongly suggest it.

Four weeks into Bell’s, I returned to work. There were still some challenges, however. Until I could close my eye, I needed to use eye drops at least every half hour or so. What’s more, all the smiling for customers flexed my facial muscles, and, although a bit sore, possibly helped the nerves recover. If nothing else it reminded the muscles that they can’t be lazy bums forever. Smile, darn it!

Eating and drinking

It took me nearly two weeks to get the hang of this, but there are some tricks.

Stick with soft food for a while! Things like mashed potatoes, yogurt, and applesauce are fantastic. If you must eat solid food, treat yourself like a toddler and cut it into tiny bites. Don’t even try cereal for at least a week, you’ll end up with milk all over your shirt. It also helps to chew on the good side of your mouth, unless you like biting your tongue and lip a lot.

Tilting your head to your good side while you chew is a way to keep food where you want it. Silly looking? Yes. Effective? Also yes.

For drinking, simply use a straw! It makes a world of difference. Thankfully, I’m a straw hoarder, so I have a ton at home. Just in case.

Beyond the four week mark, I was confident enough to drink without a straw! It’s also possible I had simply adapted to drinking with a lassitudinous starboard facial hemisphere.

I began chewing food more often on my right side as well to flex the muscles. Keep moving your face as much as you can, but don’t overdo it, especially early on.

Showering

Considering I couldn’t shut my eye, I had to keep an eye open for splashing water droplets. Also, I’m bald. However, if I weren’t, I’d have had to be very careful not to get shampoo in my eye. Or you could shave your head like I do, and not have to worry about that!
I found that letting the hot water run over my face relieved the aching a bit. It also made me feel very dramatic, like in movies when someone is standing in the shower just having war flashbacks or something.

Oh, and try not to whip yourself in the eye with the corner of your towel while drying off.

Tooth brushing

There is no good way to do this. Nonetheless, it’s extremely important that you brush your teeth while you have Bell’s! Food can get stuck on your dead side, which can cause a lot of issues if you don’t get it out. Brush your teeth. The best way I found to spit is to just let it fall from your mouth, take some water, then let it pour again. No shame. Swishing is a great way to embarrass yourself.

Get your mouth as clean as you can with whatever ability you have!

Sleeping

One of the biggest challenges.

I started out by applying Gentak to my right eye, using gauze and medical tape to keep it shut, and putting an awesome pirate eye patch over that. It was very difficult to keep the eye shut, and I tried many different arrangements of gauze, cotton balls, tissues, and tape… Eventually I found that one cotton ball placed near the inner corner of the eye, then taped down, from eyebrow to cheek, works best for me. Use what you need until you feel safe enough to sleep without it

There were a few nights I chose to use only the Gentak with the pirate patch. That did not keep the eye shut, but seemed to keep it (my apologies for using this next word) moist enough for the night.

After two weeks, I decided to stop using the Gentak, and only use the cotton/tape/patch. I didn’t like how it blurred my vision so much in the morning, and I wanted to give my eye a chance to lubricate itself.

A few other blogs mention eye patches with a sealed edge, to keep natural moisture in. I never got my hands on one, but that might be the way to go! Theoretically, you wouldn’t need to bother with cotton or tape.

Leaving the house

If you must go outside, bring your eye drops with you! Storing the bottle in your pocket keeps them warmer, which makes applying them less stressful. The easiest way I found to apply them was to gently pull my lower eyelid out a bit, forming a pouch, and put a few drops in. Nasty sounding, yes, but less stressful than the usual method! Obviously, this is easier with a mirror. Don’t forget to manually blink as often as you think to.

If it’s cold outside, wearing a scarf and hood kept my face more comfortable.

The psychological side of things

The mental and emotional aspects of having Bell’s palsy are as real as the physical, and just as important to focus on.

At first, I couldn’t help but laugh about what happened to me. It’s such a weird, oddly specific condition to have! Isn’t Bell’s palsy for older, frail people? I shouldn’t have this. No one should. This curious condition is no respecter of persons, and I am certainly as likely to get it as anyone else.

After my initial reaction of amusement, feelings of isolation crept in, despite my supportive family surrounding me. This is normal for anyone experiencing any restrictive conditions. Expressing yourself is a huge aspect of healing. Even writing this helped me a lot!

Inevitably guilt will come in to play. I mean, how can I complain when there are others out there experiencing so much worse? The fact is yes, there are people going through things we can’t even imagine. It’s also a fact that becoming the best version of yourself requires taking care of yourself, mentally and physically. Without taking time for yourself, it’s impossible to contribute to the world to the best of your abilities.

Prayer and thankfulness are vital. You will always have something to be grateful for, even if it’s simply waking up under a roof each morning. To nature, nothing and no one is off limits. Nature is neutral. The unexpected happens, then we choose how to respond. That’s it. We either choose to wallow in self-pity, or learn, grow, and ultimately be better for having gone through our challenges.

Since my diagnoses, I’ve become more sympathetic of others. I see other’s pain in ways I couldn’t before. Everyone is fighting a personal battle: physical, emotional, spiritual… It’s impossible to know what someone might be going through. Fighting my own, small-scale battle against my silly little facial nerve has made me more aware of others. But I’m still growing! I’ll always be evolving and becoming a new-improved version of myself.

Read this great article by Claire Moses. She writes about the mindset of someone with Bell’s palsy.
https://www.buzzfeed.com/clairemoses/heres-what-its-like-to-have-your-face-paralyzed?

Feel free to share this with some you know who is facing Bell’s palsy.

Pun intended.

The original version of this article was posted on Medium in March 2017 and shared with permission of the author.