Don’t Blink and You’ll Miss It

March 1, 2017

How ironic that the words blink and blinking are used in British English in a negative way. If something is said to be on the blink then it means it’s not working properly, or something might be described as a ‘blinking nuisance’ as a way of expressing annoyance. Yet blinking is one of the most underrated functions of the human body.

Blinking hard work

The cornea found at the front of the eye is one of the most sensitive surfaces of the body due to its high concentration of nerve endings. We all know how it feels to get a piece of grit in your eye but when you can blink the pain is often short-lived. The blinking mechanism is similar to window wipers on a car, helping to clean the eye as the lid sweeps across the eyeball whilst spreading a thin layer of tears (the human equivalent of screen wash) evenly across the surface.

According to scientists the average person blinks 15-20 times per minute, that equates to approximately 28,800 times per day. Blinking is essential to eye health and the average person will spend about 10 percent of their waking hours with their eyes closed.

So what happens when you can’t blink?

People with a facial nerve palsy are unable to blink with one or both eyes depending on whether just one or both of the facial nerves are affected. Born with facial palsy, I’ve had my own fair share of eye issues. When the charity moved into its first offices in May 2015 I checked with the landlord whether there was air-conditioning. They apologised that there was none and looked at me strangely when I said I was delighted about this. So many times I have been to watch a movie at the cinema or a play at the theatre and my evening has been spoilt by the relentless air-con making my unblinking left eye painful. Some people with facial palsy have no sensation in the eye which obviously takes away the immediate pain, but if you don’t have pain then you have no warning signs that your eye is becoming too dry. In this case the person’s eyesight is in danger of deteriorating. A friend with facial palsy who has no sensation in his affected eye works under machinery and has to be particularly cautious because he wouldn’t feel if something dropped into his unblinking eye.

The weather has been cold this winter and I have been working long hours on the computer moving content over to our new website, so my eye has suffered considerably. I’ve resorted to taping my eye closed again for sleep. Taping itself is not as easy as it sounds, with the best instructions in the world I often have to remove it and start all over again because it’s too uncomfortable.

When we’ve lived with facial palsy for a long time we tend to stop thinking about all the things we have to do to take care of our paralysed eye(s) and I decided to ask our community via Facebook about all the ways non-blinking eye(s) affects their everyday life. Unsurprisingly there were many comments.

Weather

Many people talked about the weather. I personally believe here in the UK that September is the kindest month for people with facial palsy; no central heating, no bright sunshine, cooler temperatures and no hay fever. To have one month partial respite out of 12 is not great though.

Lorraine said “The weather is my biggest problem, not being able to squint in bright sunlight, or high winds and rain. Air conditioning is your enemy.”

Karen R said “Having full facial paralysis since birth I have come to view most issues as just part of my life, or just a nuisance, some I haven’t even related to the facial paralysis. I am in my fifties now, eye dryness is so much worse with increased tearing, and sunshine – I just can’t bear it. Even with sun glasses with Polaroid over glasses, I can’t stand the sunshine.”

Victoria said “The wind is the worst, though I’m lucky I now have a platinum weight in my eye lid which has helped.”

Ian also mentioned sunlight and how ordinarily in this kind of weather you would naturally close your eyes and furrow your brow.

Clare said “Dealing with the weather is always a challenge. I have to wear sunglasses to filter bright sunlight. Without them I am completely blind. Wind dries the eye out and I am always afraid of something grazing the eye. Air conditioning dries the eye as well. Lacri-lube constantly leaks out of the eye so I always feel as if I am crying. The lubricant really seems to bother a lot of people who want me to constantly clean it off my face!!”

Clare’s comments were particularly insightful about human nature and how people respond to the face. I know when eating sometimes I lose a bit of food from the paralysed side. My husband likes to tell me so I can wipe it. But I do know it’s there, it’s just if I had to rush to clean up every little bit of food I would be constantly worrying. I always tell him I know it’s there and I am coming back to it. It’s my face, it’s up to me.

Animals

Many people are animal lovers and animals can get facial palsy too. A neighbour was telling me about her West Highland Terrier (Alfie) who has been left with facial palsy after a nasty ear infection. They are having to put regular drops in Alfie’s eye, I can empathise with him. And he won’t be able to tell his owner whether the drops are working for him so how will they know whether to change to another brand? We are lucky that we can easily communicate whether a course of treatment is working for us.

On the subject of pets, Nicola described how giving kisses and cuddles to a family pet when unable to close the eye can result in fluff or fur getting into it which is very uncomfortable. Lorraine said that she has lost count of the number of times one of her dogs has licked her eyeball! She said that not having the ability to close the eye instinctively against foreign objects can be a hassle. I know this all too well, my cat clawed me in the white of my eye when I was 14. It didn’t really hurt and I think the Bell’s phenomenon saved my cornea. The Bell’s phenomenon is a normal defence mechanism present in about 75% of the general population, resulting in an upward and outward movement of the eye, when an attempt is made to close the eyes. You just see it more in people with facial palsy because their eyelid doesn’t come down. I wish I had understood this better as a child. It would have been nice to tell all the other children that their eyes mostly did this too.

Children and more

On the topic of children, Lisa said “My left eye was so dry and my vision was impaired that I struggled to breastfeed my new-born baby on that side.”

Amanda who had Bell’s palsy just two days after giving birth whose story is on our website said “My vision was constantly blurry in the affected eye and I had difficulty doing the day to day tasks associated with having a new baby, such as making up bottles of formula, I couldn’t see the measurement lines on the bottles properly! One time I nearly fell down the stairs while holding my baby, again due to problems with my vision.”

As women in the last trimester of pregnancy are at higher risk of developing Bell’s palsy, this is a tricky combination for them to cope with, a new baby and a face that isn’t working properly. I don’t think people always appreciate how difficult this is.

Catherine who was born with facial palsy said “When your kids tell you to close your eyes because they want to surprise you!! And you can only close one, so you have to hold the other shut!! Lol”

Lat added “It is difficult to monkey around, e.g. during birthdays where people shove a piece of cake on your face. Icing in the eye is NOT fun!”

I know every time my children have suggested getting the Pie Face game I have tried to change the subject! If someone invites me to play don’t be surprised if I turn up in industrial goggles.

Nicola also said how when holding children or if they are playing and waving their arms around, you risk being scratched in the eye.

As a child I remember my mother putting sunglasses on me to protect against sand but I don’t remember being afraid of the sand. Like any other child I just loved the beach. As a parent it’s been very different, I don’t like being around children playing with sand and I prefer beaches where there are no dogs running around. Yes sand does hurt if it gets in your eyes but actually I think I could learn a thing or two from younger me, who managed to relax about the situation. Zoe also mentioned how being in a sandy or dusty place when it is windy can be really difficult.

Another one I panic about is when I see a bubble machine in the town centre, I’m hyper-vigilant in case one pops in my eye. It’s another one of those things though where the fear and worry is probably affecting my life more than if a bubble did actually burst in my eye. Another lesson to learn from my junior self. I also worry about cooking with hot fat, I am scared some will spit in my eye, I think it’s probably a good idea to keep being cautious about that one though!

Swimming

Some people with facial palsy find swimming an issue and others not so much. Joanne who has bilateral facial palsy said about swimming, “Splashing – there is a definite fear of getting the chlorine water in my eyes.” For me personally I also hate getting the water in my eye but then I’m not a huge fan of swimming either. Again I think it’s a case of if you want to do something badly enough you will find a way to do it with as little discomfort as possible. When you have facial palsy, swimming goggles are your best friend.

Personal care

Personal care and makeup is always a hot topic of conversation for people with facial palsy with the simplest things like washing your face being difficult for those newly diagnosed, although eventually we all adjust. Elizabeth said “When you have facial palsy, putting eye makeup on is the hardest thing to do, and the simplest thing to do when your eye is working properly.”

Joanne described how she finds it difficult to put makeup on because the powder can get in your eyes. She also said how she is ultra-sensitive around the hairdresser when she cuts her fringe to make sure the stray bits don’t go in her eye or that the colour doesn’t drip down her forehead.

Zoe said it can be tricky getting a fake tan at the beauticians because they have to spray your face.

Andrea said “Spraying hair spray! Ouch.” Janien described how she accidentally brushed into her eye with her hairbrush once, another ouch!

Scarlet admitted “I’ve just given up on putting on makeup at this point.”

Susan added “Not being able to close your eyes in the shower and when washing your hair is really annoying, as shampoo seems to sting all the more in the affected side.”

Nicola also mentioned how hair blowing in your eye can be painful. One thing I wish I had realised years ago is that not having a fringe, for me, is so much less painful. It has also made the visits to the hairdresser easier as I’m not having the hair near my eye trimmed.

Joanne who has bilateral facial palsy due to NF2 added that putting clothes on with a tight neck can sometimes be a challenge!

Personally I have avoided Hen weekends that include spa days in the past because I don’t want anyone touching my face. I think what worried me more was the anxiety of having to explain if I didn’t want a certain treatment done. You just feel that people won’t understand and will think you are making a fuss about nothing. It’s been easier to talk about it since Facial Palsy UK was launched in 2012 though, it’s validated my feelings and people seem more accepting generally.

Jeanette can totally empathise with all the comments made by others. She said “Lack of full eye closure and reduced blinking causes dry eye. Apart from the pain and constantly using drops, ointment or gel, this also means my eye produces tears – especially in extremes of weather. Simply shopping with a streaming eye (can’t see where you are going!) is a potential hazard, not to mention the discomfort or pain. Eye examinations are the worst experience with sensitive eyes and need to be done more frequently. Eye make-up aggravates the issue and exacerbates the dryness in the long term so now I only wear it on special days which also impacts on my self-esteem and confidence.”

Synkinesis

Synkinesis only affects some people with facial palsy, often those who have had Bell’s palsy or Ramsay Hunt syndrome. This is where the nerves have mapped to the wrong areas of the face on healing, resulting in symptoms such as: when smiling the eye closes, when eating the eye waters, and facial pain. People with synkinesis in certain areas of the country are not receiving any medical treatment as it is considered to be a cosmetic problem and not enough research has been done into treatment of the symptoms. I think what the general public need to remember is that it’s not always what ‘they’ can see that is the issue. With those who challenge how upsetting synkinesis is, I try to remind them how they feel when they get a twitch in their eye, something most of us have experienced from time to time. It feels like everyone can see it and distracts you if it happens when you are trying to converse with someone, yet the other person would most likely not notice it. If the general public magnified those feelings and lived with the knowledge that the problem was not going to go away, they may begin to understand.

Atima said “Problems include constant twitching of the eye causing eyesight issues. Also I have developed dry eye syndrome that has developed into blepharitis causing constant inflammation on the eye lid. I have a streaming eye when the weather is cold and it’s hard to protect the affected eye in summer without wearing sunglasses all the time.”

Susan describes how tears come out of her Bell’s palsy eye when she eats or chews and she has to wipe it constantly.

Driving

Driving with an eye or eyes that don’t blink or squint can be tricky especially when the sun is low in the sky. I find myself tilting my head back so that I can look downwards towards the traffic, giving my eyes a little more cover from the eyelids. It’s funny the little things you do without even thinking to adjust to a difficult situation.

Sheila and Zoe mentioned the problems with glaring bright lights from other cars and Marina described how difficult it is when you can’t squint the one eye. The option for some relief being to try and close both eyes which isn’t good when driving.

The Dentist

Dental visits also pose some interesting problems, laying back in the chair with a glaring light in your face isn’t much fun.

Nicola said “The dentist can be a challenge. Wearing safety glasses and staring into a bright light can be awful.”

Personally my problem with the safety glasses from the dentist is that my face has become much shallower due to lack of muscle tone on the paralysed side and sometimes I find the plastic presses directly into my eye on that side when you are flat on your back. It is really uncomfortable.

Sleeping

Sleeping is probably the one thing that our loved ones understand is difficult when you have facial palsy. Alex who has bilateral facial palsy due to Moebius syndrome said he finds sleeping difficult because both eyes don’t close.

Margaret said “My right eye does not close. I was persuaded by the Ophthalmologist to purchase a pair of goggles joined by a triangle of silk. The goggles are filled with silicon. As they are not available on NHS I had to order from America. They cost over £50 then £14 for post. I put this on at night but find it on the pillow in the morning. I do not know if I take it off while sleeping or if it slips off.”

Claire said “Sleeping is a problem – I load the eye with lubricant but it smears all over pillow cases.”

Sara said “Sleeping was a big problem, I couldn’t tape my eye shut and using an eye patch didn’t help either, now my eye is permanently closed, I have synkinesis and my eyebrow doesn’t move at all.”

Someone who wishes to remain anonymous said “I am a Ramsay Hunt syndrome survivor, I have recovered just 60% in the last 7 years. It felt like I was in hell when I was not able to close my eye on the paralysed side but at the same time I felt special or gifted because I was different from others, as I could sleep with my eye open (spying world).”

Further comments

Some really interesting comments came out of the Facebook discussion about how not being able to blink has affected people. Janien from New Zealand described when a big red stinging ant fluttered down from a tree, landed on her eyeball and proceeded to bite it. Jo mentioned how when exercising the sweat goes straight into one eye but she shared a tip she’d learned, to put vaseline round the eyebrow to stop it rolling in. Ellie mentioned glitter from Christmas decorations as another enemy of the unblinking eye. Judie explained how when she has a cold her eye constantly waters, an issue not resolved by the gold weight in her eyelid to help it close.

Eye lubrication is needed by most people to help keep the eye healthy but this in itself brings a new set of problems. Alexis described how having eye lubricant in all the time would blur her vision.

Lorraine said “Blurry vision from over production of tears is the opposite problem – but it can affect depth of vision, resulting in a messy kitchen at times.”

Being unable to close your eye can also make you feel very self-conscious. Marina said “My eye tears a lot in certain weather and causes one to be extra self-conscious especially when out and about and around new people.”

Zoe mentioned sleeping on public transport or around people because you don’t want them to see.

Personally I have memories of travelling overnight to Belgium in a car with some people I didn’t know very well. I was desperately trying not to sleep, because I didn’t want them to see my eye. Working for the charity full time this would not bother me now, but years ago I didn’t talk to anyone about my feelings about facial palsy and tried to hide it.

One of the most important things we have to remember is to blink. If we can’t do it automatically by reflex then we have to do it manually. Lorraine said “Anything where prolonged concentration is required can be a struggle; eye-blinking has to be thought about, rather than a reflex action, so when driving, or studying, or watching a lecture, dry eye quickly follows.”

Infographic

This infographic can also be downloaded from our Infographic Library as a pdf.

What help is available for those who cannot blink?

I hope this has given some insight into all the different ways being unable to blink can affect a person. This information is by no means exhaustive.

 

Karen Johnson

Deputy CEO

Facial Palsy UK

Published during Facial Palsy Awareness Week 2017

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