By Diana Hills
Diana Hills is a writer and poet from the United Kingdom who is diagnosed with post traumatic trigeminal neuropathy.
To all trigeminal neuralgia sufferers:
Just to say, you are going to read about a different kind of facial pain. It’s still awful and miserable, but different.
Oh dear then, where do I start this lasting journey?
A bit about myself first?
Before 11 a.m. on April 4, 2019, I had retired from a challenging but exciting human resources job in the Metropolitan Police, our largest police force. After a disastrous year as a funeral assistant, I started voluntary work giving advice by phone or in-person to people whose lives, for many reasons, had fallen into disarray. On Saturdays, I worked the till in a busy charity shop. Leisure wise, I was in the final stages of a graduate certificate in art history at Birkbeck, a university designed to help older people get degrees or qualifications. I loved the course on Modern Scandinavian art, which was very much due to a fabulous tutor who made the learning fun and engaging. At the time, I was about to start a dissertation on the painter Akseli Gallen-Kallela, and the picture I was going to focus on was uppermost in my mind.
My private life has been quite rocky. My husband had died at a relatively young age. The death was deeply traumatic for myself and my two grown up sons, bringing up at that stage three grandchildren (four more were to follow). My parents also suffered early deaths, but I am fortunate to be blessed with two sisters who have always supported myself and my family. I had a close male friend whom I met in the short time we were on a dating site and we enjoyed going out on our bikes to a beautiful shingle beach in Rye. And I also acted as a “culture buddy” for another friend who organised trips to the theatre and cinema after splendid meals in his house. I played tennis too (rather badly) with a group of girl friends I’d known for years.
So, everything was as good as it could be on that fateful day. The sun was shining on the wooded hills nearby and I’d just finished taking a delightful lady to the shops. While I did feel a sense of fear at the thought of an imminent root canal, I put the thought to the back of my mind. I’d had the same dentist for years, and even if his patient-handling skills amounted to almost rudeness, he seemed to know what he was doing with the drill. I’d always had trouble from my teeth stemming from an overzealous dentist drilling them all as a small child and my mouth was a series of bridges, fillings and badly fitting braces. At the dreaded time, I was pushed back in the dental chair and the dentist announced grumpily the procedure wouldn’t hurt because the nerve had died.
Well, the first touch of the drill felt like a hundred razor blades being hammered into my gum and I practically jumped out of the chair. I pleaded for an injection with the dentist shaking his head as he jabbed the drill in. I knew immediately something was wrong, but let him finish—which he did in record time, glad to be rid of me.
The next day at the shop, my mouth began to ache and, by Sunday, the pain was unbearable. The next day, I got myself to the dentist and begged for the tooth to come out. The dentist who had originally performed the root canal was not present, but a locum in his place said that I had an infection that was the size of a house and there was no way a root canal should ever have been attempted. The locum pulled the tooth.
I stumbled out and, for the next 10 days, suffered pain the likes of which I’d never experienced in my life. I couldn’t drive, eat, or talk and I saw four separate dentists begging them to take the pain away—fast. Apart from making a hole in my bank balance, none of their efforts worked and I spent a miserable Easter in bed. At 9 a.m. the next morning, I resumed my round of dentists both here and in neighbouring towns. None could see anything wrong until the most expensive of all identified a small blob on the X-ray which she said looked like an infected root or tooth fragment. She urged me to see my general practitioner to book an appointment at a hospital well known for its expertise in dentistry and plastic surgery.
I couldn’t be more grateful for our dear, old, free National Health Service—England’s publicly funded health care system—which came up trumps at this point and fixed me an early appointment. My sister drove me and it turned out to be one of the worst experiences in my life, second only to the botched root canal (childbirth was a wheeze by comparison). For three quarters of an hour, the student orthodontists prodded and poked as they struggled to get the offending root of the tooth out and, at the end, they clapped their hands and congratulated themselves on yanking it from my mouth.
When I got home, the local anaesthetic had worn off and I suffered excruciating pain—a burning, stabbing sensation which never let up month after month. During that time, I changed from being a reasonably fit, upbeat 70 year old to a crying, miserable, old woman who found no pleasure in the smallest things. For the first time in my life, I suffered gripping panic attacks with a leaping heart whenever I tried to normalise my life. Being in the house alone terrified me and, for the next two months, I stayed with a nearby sister and brother-in-law. My behaviour during that time was terrible, as I whined and moaned during their favourite television programmes.
I spent a small fortune on consultations in an attempt to find out what was wrong and how long it would last. There was the sleep expert who dismissed me out of hand and charged hundreds for doing so. A smart psychiatrist saw me for half an hour and, for the duration, talked about his former teenage patient. I went to four different counsellors in an attempt to find out how to manage pain and ways of dealing with it. In the end, I stuck with one, but really it was an expensive chat rather than constructive help. I didn’t leave dentists or consultants out of the spending spree either. They diagnosed me with Trigeminal Neuralgia and gave me Tegretol, which I took in large doses, though it didn’t touch the pain and turned me into a zombie.
My general practitioner prescribed Lyrica and Duloxetine, but it took me a long time to pluck up the courage to try the lowest dose. Peering at the Internet hardly helped, such were the scare stories of people becoming addicted, obese, or depressed. Eventually the pain made me cave in and I had to start taking the medication. But, again, nothing touched the pain, and I was the miserable, often hysterical wreck I’d been since the procedure. My next door neighbour and sister bore the brunt, as without warning I burst into their houses bemoaning my fate.
There were occasions when it became too much and I rang the Samaritans, who were kind and patient. It seemed ironic that I should be doing the ringing when I’d been a Samaritan years beforehand. And my lovely lecturer at Birkbeck encouraged me to write my dissertation, which was a diversion of sorts from the everlasting, crunching pain. I have awful memories now of typing with the picture of Lemminkainen’s Mother in front of me in all its gory, gripping detail. But I finished 10 minutes before the deadline for submission—quite an achievement given the circumstances. It did make me really admire authors who write with pain as a companion and succeed in writing masterpieces!
Things continued in bleak mode until at last my obsessive Googling found an expert in non-TN facial pain. An expensive appointment (my last as I was running short of money) resulted in a diagnosis of posttraumatic trigeminal neuropathy. It was a rare disease, the sleek consultant said, but getting more common with the increasing number of root canals and implants. Practitioners damage the nerves, he went on, mostly through lack of care or experience. There were no surgical procedures which would help like MVD and the disease was considered to be a poor relation of TN which he described as “sexier.” How such a horrible disease like TN can be described as “sexy” was beyond me.
Having achieved a correct diagnosis, I stumbled by chance on the antidepressant Nortriptyline, which seemed to offer better results than other medications. By this time, I’d found a Facebook page for people suffering from dental induced pain which made me feel as if I was not alone in trying to cope with the constant prickling, aching and burning sensation in my mouth. I was quickly running out of options, so persuaded my general practitioner to let me give it a try. It worked in as much as the pain reduced from a horror inducing 9-10 to a more bearable 5-6. I decided then that I’d try to stop being a “moaning Minnie” and try to get my life back on track again. So, I went back to what we call Citizens Advice here, helping people sort out their problems. Like every country I guess, the benefits system here is very convoluted and involves much form filling and knowledge of the rules. Many of the most marginalised in our society can’t cope and, even with our help, can’t always get the support they need. The effort involved though was a welcome distraction from my pain and I was far more empathic than I had been before the dental car crashes. .
Later, Covid appeared and the country found itself in lockdown mode. In many ways this suited me as it made me stay at home and review what I was doing with my life. I realised in those long solitary months that pain was defining and owning me. It held me captive and I could not escape its pernicious call from the moment I woke up to the time I went to bed. I decided I was in need of other things and people to distract me both from the pain and the ill effects it was having on me as a person.
So I continued my Citizens Advice case work at home and took on a volunteering role which involved ringing Alzheimer’s sufferers and carers. In many ways I found the sufferers’ plight easier to deal with than the carers trying to manage without support. I am still in touch with all of them now and it is heartbreaking to hear of the sufferers’ deterioration and the carers’ difficulties in handling their complex needs. Thrown out of care homes for an inadvertent push, the person is returned home, a shell of their former selves to a carer drowning under the weight of a responsibility for which they are ill prepared.
Now on Lyrica as well as Nortriptyline, I found the pain receding as I listened to the various people I rang. It’s going to be always there, I thought, so you have to find a way of managing a life which is going to be different. No holidays or outings far away. Just doing things you always did—like walks in the country and collecting the granddaughters from their primary school once a week, nothing which would involve stress or excessive fatigue which would make the pain ratchet up to an unbearable nine.
The threat of Covid passed and I was very fortunate in that neither I nor members of my family suffered any lasting illness. When I could no longer play tennis, my girlfriends dropped me and I decided to give a seniors dating site a couple of weeks to see what transpired. Given my age and history I thought it was a lost cause until I met one of the dates who lived a few streets away. An ex-teacher, he took pride in sorting out my myriad of problems with computers, drains and heating supply. We are still together though we live apart (both of us would go round the bend if we had to cope with each other’s foibles for any length of time). He is skilled at distracting me from pain and we have good times together. The “culture buddy” and cyclist I still see as friends.
It was after Covid too that I embarked on an online creative writing course run by Oxford University. It involved much writing of screenplays, stories, and poetry and I found the assignments difficult to finish in the short time allotted. Despite pain being my constant companion, I managed to finish and, being by far the oldest, it was good to be supported by a lovely WhatsApp students group.
So where am I four years and three months since the bodged root canal? I would love to say I was pain free and a better person since the trauma. That is far from the truth. My life has changed, pain never leaves me, and I constantly dwell on its impact. One in six people in the UK live with chronic pain (i.e. lasting longer than three months) and, despite all the developments in modern science, no medication has been found to eliminate neurological damage. Drugs designed as antidepressants are handed out, and they often have side effects which can damage the sufferer’s health and well being. With little understanding of the trigeminal neuropathic disease, it is left for the patient to experiment and find a personalised combination which will help subdue the pain. Sometimes this involves a mix of recommendations in drug journals which the patient has somehow found which allows them to live some sort of life. In my opinion, facial pain is the worst to suffer because the head is the core of a person’s being. Pain is hidden and unknown to the outsider, unable to comprehend the depth and agony of its severity.
And finding myself on 70 mg of Nortriptyline and 225 mg of Pregabalin, how did the trauma change me four and a half years later? Well, bridge has replaced tennis and I’m weak at both. But, as the elderly ladies I play with say, it keeps the brain ticking over, and there’s always home-made cake. I walk more with my sister and dog in the glorious countryside here with its soft hills, deep ghylls, and ancient homesteads. Most of all, I write poems regularly and perform them out loud to a small audience in seaside pubs. This sounds formidable, but everyone can have a go and get listened to in respectful silence, however wobbly the effort.
Is the pain better? Well, I have gotten used to the constant numbness and pins and needles caused by damage to the inferior alveolar nerve sending wrong signals to the brain. I get through frequent flares where the burning is uppermost in my mind. These make me depressed and low and I find the only remedy is to go for a walk on my own. I am more conscious of weather, clouds, sun, rain, and wind, which all have an effect on my mood.
It is during these periods that I turn to poetry, which best expresses my story of pain and its woeful effects. I’ve enclosed some below and will end by hoping, hoping, hoping that my fellow sufferers with all types of facial pain can get effective relief, if not now but in the future.
The curse of facial pain.
Facial pain makes your jaw prickle,
Like a needle giving you stabs, jabs and tickles.
The lion leaps to your mouth with a roar,
He never forgets he’s been here before!
In the endless dark night, your gums are deep burning,
and the pain yelps when you’re sleeping or turning.
Your mouth tastes nasty, tingling and hot,
It feels like soldiers use it as shot!
A new day dawns from the shadow of gloom,
and hope of escape from the lion quietly looms.
Oh blessed relief the pain is no more,
but back comes his roar, he’s snappy and sore!
Out come the pills so generously dosed,
By kindly GP dealing with Covid and crises.
Your mind in a daze, you pray it’s a phase,
You can’t lie in bed all day in a haze!
The lion sneers at pills, he makes your face feel,
That he’s gripping your mouth with his fangs of steel.
Pins and needles jostle with aches and strange twinges,
A crab’s joined the game to add his cruel pinches.
You do as you’re told and walk, talk and play,
You chew gum quite rudely throughout the grey day,
but the lion’s in his lair, he knows so well, ,
your nerve got damaged when the root canal failed.
We didn’t say hello
I met me today in a quiet country lane,
I never said hello as I knew you hated me,
You passed by my side, but I saw you look back,
And wondered too, for you returned my glance.
I’m the opposite of you, I’m cool and collected,
I revel in the hawthorn which froths like fine lace,
The symphony of yellow, dancing buttercups,
Speedwell peeping daintily through lush green verges.
Nature in an English spring, the greatest spectacle of all.
But the me I met in that summer lane,
Is angry, mean, beset with black thoughts,
No joy found in wildflowers on a warm spring day ,
In birds singing as they greet friends in high trees,.
How I hated that cool, calm, happy me,
Because that’s whom I used to be. .
This is a lighter one I read out on one of our “open mic” evenings.
The Haunting of the Back Molar
I’m a tooth, a stroppy back molar
That jiggles around in your poor, sorry mouth.
I’m mean, moody and full of dolour,
do let me tell you what I’m about!
I’m cross I’m left when you brush your teeth.
Why do you favour those six front fangs
you slosh with whitener to dazzle young Keith,
who moves around you with his busy hands!
And why did you remove my very best mate?
She did no harm sitting snug on your gums!
Your new implant’s in such a sad state,
filled with crisps, sweeties and biscuit crumbs!
And old Mr Gilbright is terribly stroppy!
Why don’t you change him for smooth Mr Hoe
whose drilling and filling is terribly jolly,
as he watches his money tree grow and grow.
And you don’t look after me as you should.
I don’t get a floss, or a pick or a wash,
I’ve been awfully neglected since childhood,
which is odd when you think you’re awfully posh.
But here’s my revenge, I’ll make your mouth ache,
No pills to help, no bubbly to ease,
I’ll make you shake and flake and quake,
And I’ll go on hurting however you plead!
Unloved to the end, you’ll have me removed,
But beware, I’ll haunt you wherever you go,
For I’m a tooth who’s been much abused,
And my ghost, Mr Nerve –
Will forever be your foe!
And finally the master, Robert Burns, a Scottish poet in the late eighteenth century who was known to have facial pain.
Address to the Toothache by Robert Burns
My curse upon your venom’d stang,
That shoots my tortur’d gums alang,
An’ thro’ my lug gies mony a twang,
Wi’ gnawing vengeance,
Tearing my nerves wi’ bitter pang,
Like racking engines!