Triggers & Tips: How to Live Better with Trigeminal Neuralgia

I bought a chest-of-drawers recently, from a local op shop (thrift shop/charity shop). The wood was in pretty good nick – sturdy and solid. But it had a sad, tired paint job – chipped, peeling, and the wrong colour scheme for our bedroom. The other day I got busy in the garage with the sandpaper, and today the paint came out. The frame of the chest has now gone from a battered and dirty looking white, to a sleek, pale grey. Tomorrow, I’ll start on the drawers, transforming them from a dark bluey-grey to a deep pohutukawa red. It’s a colour scheme I love – the calm, soft tones of grey a nice contrast with the cheerful warmth of the red.

Each coat of paint took about five minutes with a roller, and another five minutes with a brush to reach the tricky corners and skinny edges. I love rescuing old, unloved pieces of furniture and giving them a make-over, but in the past I hated waiting for each coat of paint to dry, because I’m impatient to see the finished product. These days though, a short burst of painting, and a long drag of paint drying suits me perfectly – thanks to my various health conditions, pacing any activity is essential.

By the time I was putting the top coat on, the chest was already starting to lose its tired look and become a spruce, new thing. When the painting is finished, I’m going to mosaic a design on the top. that will take another week or two though, because mosaic work is a lot more demanding than painting – cutting and nipping the tiles is hard on my joints. But when the whole thing is finished, it’ll be a very flash piece of furniture for our bedroom.

It’s tempting, when you have chronic illnesses, to wish there was a makeover available that would transform you from sore and tired to sleek and spruce. But, just like sometimes the furniture I see in op-shops is beyond my skill level to renovate, some illnesses have no definitive cure, and wishing for a make-over is a depressing waste of energy. I’ve written before about treatments, and surgeries for trigeminal neuralgia, and about pain management techniques for chronic pain. Here I want to look at different ways of managing some typical triggers of trigeminal neuralgia – a make-things-the-best-you-can approach.

Sometimes, making even minor changes to your life pays dividends in helping you to reduce frequency and severity of attacks.

General suggestions

Carry an emergency bag of tricks with you, and at home have one in reach of your bed, and where you like to sit. Keep any emergency medications in there, heat/ice packs, any creams/sprays/CBD oils etc you find help, and alert cards

Heat, cold, or a combination of both are often effective in reducing the pain of an attack. There are a few options you can use:

– gel heat packs
– electric heat pads
– microwave wheatbags
– hot water bottle
– hot, damp facecloths
– gel ice packs
– freezable ice packs
– instant icepacks (click and use)
– bag of frozen peas
– cold, damp facecloths

Triggers and tips

Temperature and weather

Cold and/or heat, especially at the low and high ends of the spectrum, and wind (especially cold wind) and snow or rain on your face are common triggers.

Cold

• Get a selection of bandannas, scarves, hats you can wear all year round. I like infinity scarves and have a few ranging from lightweight cotton ones for the summer, and thick, woolly ones for the winter.
• Keep the temperature in your house at an even heat – I find anywhere between 18 to 22 degrees is the best for me, but use a thermometer to measure the most comfortable heat for you
• Keep your bedroom warm overnight – on those sultry, summer nights the temperature plummeting around 3am is a relief, but the rest of the year, it’s more likely to wake me up with those familiar stabbing pains, and hiding my face under the blankets isn’t as effective as a properly heated room. If you don’t have a heat source in your bedroom, hats and scarves come in handy here too
• Get a ski mask, and a coat with a big hood for autumn/winter
• Check your house for draughts, and seal any gaps in window and door frames
• Avoid the breeze from air-conditioning or fans
• In your car, keep the blower vents turned away from your face when the air-conditioning is on
• In public places, avoid sitting near exterior doors or open windows – the blasts of cold air every time someone comes or goes are no fun for your face

Heat

• Keep your house cool – air conditioning, windows open etc.
• You may still find wind triggers attacks, so direct fans away from your face, and wear a light scarf outside
• Use ice packs
• Stay in the shade
• Turn down the water temperature when you shower/bath
• drink plenty of water
  

Eating and drinking

Biting, chewing and swallowing often trigger attacks, and it’s not uncommon for people to stop eating during attacks. But eating a healthy diet and drinking plenty of water keeps you healthy and makes your body better able to cope with pain.

• Avoid hard, crunchy or chewy foods like steak or crisps/chips or salads
• Strong flavours like citrus or spice overstimulate the trigeminal nerve, so you may need to avoid hot curries etc.
• Caffeine, fizzy drinks and sugar often trigger attacks, so try fruit teas, smoothies, and artificial sweeteners rather than coffee, tea and sugar
• Heat and cold can be an issue with food too – avoid eating anything straight out of the oven or fridge/freezer and don’t put ice in drinks
• If opening your mouth wide is difficult, try using smaller sized cutlery and chop food into small pieces so you don’t have to bite it
• Drinking can be easier with a straw
• Find a range of recipes for a soft-food diet – you don’t have to rely on apple-sauce and yoghurt. Soups, stews, slow-cooked casseroles, pasta and sauce dishes, risottos, eggs, etc are easier to eat than food that needs a lot of chewing
  

Touch

The trigeminal nerve reacts to any touch on the face. So any action that involves touch may trigger an attack. Here’s a list of some more common triggers:

Kissing

• if your neuralgia is only one side of your face, ask people to kiss you on the opposite side.
• do the same if you need your temperature taken, or a nasal swab or any other medical intervention
• bilateral TN is trickier. Sometimes you might need to air-kiss, or pick a spot that doesn’t hurt, or take a rain-check

Communicating

Talking, smiling and laughing are typical triggers

• explain to people who need to know that sometimes this kind of shared communication is difficult and painful for you.
• You’re not being rude if you stop talking or don’t laugh. Carry an alert card, or have a photo on your phone explaining it, which you can show to people if necessary. Something simple like “Can’t respond – face spasm. Give me a minute”
• try talking quieter and slower and smiling or laughing gently so your face moves less
• if you have to communicate with someone at a distance, e-mail or text rather than phone
• if you have to phone, use speaker-phone as the phone against your ear can trigger attacks
  

Personal Hygiene

Washing

• wash with warm rather than hot or cold water
• turn your back on the spray in the shower if the water hitting your face hurts
• direct the shower spray at your shoulders and lower, not your head/face
• use sponges or the softest facecloths and towels you can get
• use face wipes or baby wipes
• use unscented washing products
• be gentle – dab, don’t rub or scrub or splash

Cleaning Teeth

• clean your teeth with a soft, small brush, or a child’s brush
• clean your teeth with warm water
• use a soft silcone brush, or your finger, if even a child’s brush is too painful
• don’t rinse, just spit
• use mouthwash if flossing is too painful
• if you use a waterpick for your teeth, fill it with warm water
• avoid strong minty toothpastes

Hair Care

• use soft brushes or wide-toothed combs to groom your hair
• use tangle-free shampoos and/or conditioner for washing your hair
• use dry shampoo to reduce amount of touching
• keep your hair shorter so it’s easier to manage
• too sore to wash your hair – cover it up with scarves/hats/headbands or pin it up

Shaving

• shave straight after a bath or shower when your skin is softer
• use coconut oil hair conditioner instead of shaving foam
• use shaver on number one setting
• grow a beard and keep it trim with clippers

Physical Fitness

Keeping fit and active is good for our mental and physical health, but it can be difficult to achieve when certain positions and activities trigger neuralgia attacks

Movement

Bending your neck or turning your head is a typical trigger

• get a grabstick so you don’t have to bend down to pick things up
• if you do bend, bend at the knees and keep your head straight
• use a stool or step-ladder to reach things from high shelves rather than stretch
• turn your whole body if you need to look at something to your side
• slow your movements down so you become more aware of your body and any awkward head/neck postures and movements
• do you clench your teeth? this is a common reaction to pain, but increases TN pain. Rest the tip of your tongue on the back of your front top teeth to keep from clenching and to relax your jaw

Exercise

Getting those endorphins flowing increases positive feelings and reduces the brain’s perception of pain. So many people find exercise fantastic for pain management. But depending on your specific triggers, you may need to amend your exercise habits.

• if you run or cycle, and the wind on your face is a trigger, wear face-coverings like bandannas or ski masks, or get a treadmill and/or static bike so you can exercise indoors
• try tai chi or yoga for gentler exercise – just be careful with bending
• swimming is problematic if the water is too cold, or the air-conditioning and noise of a public pool is a trigger. See if you can find a hydrotherapy pool in your area, or a friend with a pool at home!
• keep a diary of your pain after exercise – is half an hour of vigorous exercise fine, but an hour too much? Is gentle exercise fine, but vigorous exercise too much? Know your limits and adapt your exercise needs around them
• if you are already hurting, but the pain is not too debilitating, get up and do something active to get those endorphins working – even a gentle walk

Light and sound

Bright lights and loud, sharp noises are often problematic for people with trigeminal neuralgia.

Light

• wear dark glasses in bright places like malls etc
• replace any incandescent or fluorescent lights in your home or work space with renewable energy, lower wattage bulbs. These give off softer light.
• Install dimmer switches so you can adjust the light to a comfortable level for you

Sound

• go to public places like malls, supermarkets, swimming pools at their least busy times
• wear ear-protectors, if you can
• play music at a lower volume
• in restaurants etc. ask the manager to turn the volume down on the music
• don’t listen to music through headphones
• wear ear plugs when doing noisy tasks like vacuuming – or delegate the task to someone else, and leave the room

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The key thing with triggers is finding out what yours are and how much you can tolerate before needing to change the way you do things. I was out in the garage, painting the first coat of red on the drawers. Around four o’clock, as the sun went down, it felt like any warmth had been sucked out of the air. I probably should have come indoors to get my infinity scarf to wrap round my face, but I only had one drawer left to paint, and I didn’t want to interrupt my flow! I know, from experience, that a few minutes in the cold air may cause a few burning and aching sensations in my face afterwards, but generally now nothing a heatpad can’t fix. So I kept going. If it had been blowing a gale, though, I’d have got my scarf – one gust from a southerly blast is enough to trigger hours of extreme pain.

Keep a pain diary for a few weeks to help you figure out what and how bad your triggers are, and you’ll be able to work out what adaptations from this list, or others you think of, will help you.

We can’t cure trigeminal neuralgia, but we can make it less trigger-happy. Please comment below with ways you’ve found that work for you.