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My MS Symptom - Trigeminal Neuralgia

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Thursday October 05 2017 11:00 AM

This week Willeke Van Eeckhoutte talks about Trigeminal Neuralgia and the implications it has for her daily life.

Bear with me, please. I need to get something off my chest.

Or rather, my face.

I bet we can all remember the first time we went to the dentist.

I know, not the nicest of memories.

The needle. The pain. The sound of the drill.

The rubbery feeling in your chin or cheek afterwards.

Now, multiply the latter sensation times, let’s say, by 100. 

Welcome to the other side of trigeminal neuralgia (TN). The side where stabbing, shooting pain is not present, yet the numb, dull, throbbing sensation are.

It is also burning like fire. 

TN sounds like a mouthful. It turns out; it is a mouthful.

You can’t talk without sounding like you’re drunk on two bottles of whiskey. You also can’t talk during severe attacks, often making you yelp between words. Added to this, forget about not spilling at least half your cup of coffee, or worse, your other favourite drink: milk.

As it turns out, the rubber sensation is perhaps not as painful as the stabbing version of trigeminal neuralgia, but it is enough to keep you awake just as much. 

Oh, the joys of facial pain. Thank you, multiple sclerosis. I wish you would just bugger off and let me have my sleep. The last time I slept like a baby was 13 years ago. I cannot even remember what 8 hours of sleep feels like. 

Worse, I cannot remember what being healthy feels like. 

MS has been an odd, long journey. Contrary to what my neurologist and I now know to be fact, I started with excruciating left side facial pain combined with extreme fatigue. For the first three years post-diagnosis, registrars attributed the round-the-eye facial pain to optic neuritis and migraine. 

Despite my continued remarks that it felt different to those symptoms, they seemed happy enough with the ON tag. It took some time and a master-neurologist to bluntly shoot down the ON theory and put TN on the map. I felt vindicated. I felt that finally, I was on the road to recovery from pain so awful, you cannot stand the slightest of changes to your environment and as such, seemed to turn into a rather antisocial human being.

I was even happier when facial pain disappeared altogether, just like that. No tagline saying, “Hey, I know you hate me, so I will vanish just to please you!”

Without any warning, TN resurfaced years later. 

And is still here today.

On any given day, pain, touch, temperatures or vibration can trigger a TN attack. Talking, smiling, brushing my teeth or a whiff of cold air can trigger an attack. Vibrations caused by walking or music as well as sudden loud sounds like banging doors, coughing or sneezing… same. Quite often, waking up with the left side of my face resting on the pillow is the culprit. There are so many triggers that listing them all would scare people. 

In short, I have my hands full with my face. Twelve years with MS and TN have taught me that in fact, I can give TN the middle finger approximately 50% of the time. Out of necessity, I’ve learned what the triggers are and have had to adapt thought patterns. 

I won’t lie. On days where facial pain takes over, I curse it for all eternity. TN is a drag. A cause of a less active social life. Lower quality of life. Loss of friends, even family members who don’t accept and refuse to see how bad facial pain symptoms can be. 

Just last week, I wanted to run from the shop during my grocery trip because children were screaming. I love children, but I prefer them when they come with some form of a sound suppressor. Or, with parents who ask their children to behave in a shop.

Also, smiling is troublesome. Pictures of me with a big smile are rare these days, and while I look angry, I am not. I am simply in pain, heavily medicated and so afraid of another round of shooting or burning pain. I still have mischief in mind; it is just not translated to my facial nerves anymore. 

But, I refuse to consider nerve pain a deal breaker. I soldier on. There’s no other way but to soldier on as best as I can. On days when MS and TN are just too much to handle, however, I fear its pain and pray I won’t let people down. I am aware that I cancel plans more than others would, but I’m blessed with a supportive MS society, friends and remaining family members who do understand the pitfalls of excruciating stabbing pain like trigeminal neuralgia.

If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

Author: Willeke Van Eeckhoutte

Tags: trigeminalneuralgia, facialpain, fatigue, qualityoflife

Comments

Helen

Thursday October 05 2017 21:07

Pure torture Willeke : (

Willeke

Friday October 06 2017 18:57

It sure is. It's sometimes hard because of the restrictions it places on your daily life - I refer to it as self-imposed confinement - but I then remember myself that at least its proof that I do have a brain in there.

Tracey

Monday May 14 2018 21:41

Hi Willeke, I have had Trigeminal neuralgia for around five years or so. Looking back I had mild signs of it. It felt like having your hair pulled and mild electric shocks which I put down to stress, until it became much worse,which led me to my GP and a diagnosis of TN. Around that time I began to have severe pins and needles in my body and numbness all down my right hand side,horrible deadness. Visit to neurologist,loads of tests,2 mri's scans(3 non specific lesions) negative lumbar puncture and evoked potentials. Loads of other symptoms!! Burning,crushing,tight banding,the list goes on. But by far the worst is Tn. It has become increasingly worse,the biggest trigger is cold air,breeze,air conditioning,freezers in supermarkets. I call it my spidey senses because I will know right away if there is the slightest fraught. The pain goes right through my teeth,side of my face and head,both sides are affected. At full throttle the pain is like being electrocuted every 10 seconds,at the same time being whacked on the head with a pic axe. I am on the max dose of gabapentin and also lamotragine. I have a wide selection of woolly hats and scarves,constantly getting stares and comments in work(barber shop) NOBODY GETS IT!!!!!!! Unless you have had it,you will never understand it is more than just a pain in your face and being a weird hat lady,even in summer!!!!! I wear 2 hats,2hoods and a big scarf to venture outside. I wear a hat in the house,a hat in bed,not very romantic!!! My hubby is really supportive and understanding. Recently the tn has got worse,I am being referred to see a neurosurgeon for next step. I am in ms limbo,I feel like a fraud because the tests for the other symptoms are inconclusive,but for me are very real !! So it's wait and see for those,but ms is suspected. Tn is excruciating,it is misunderstood,it causes you to withdraw from social gatherings etc; I do not wish to have ms,but I want a real diagnosis to all of this. My heart felt sympathy to your suffering. Forgive my rambling on,I just needed to get that off my face too!! Tracey x

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