By Humairaa Mayet
Edited by Imaan Moosa
For close to five years, I suffered from excruciating jaw pain which doctors were quick to dismiss as muscular tension as a result of anxiety. Eventually, I was diagnosed with trigeminal neuralgia, also known as suicide disease.
Trigger Warning: Mention of self-harm and suicide.
This information is intended only to educate and shouldn't be used to diagnose, treat or replace the advice of a registered medical professional.
At 18, I felt as though bolts of electricity were shooting through my jaw, making eating, sleeping, and other day-to-day tasks absolutely unbearable. The pain was completely different to anything I had ever felt before. It felt as though someone had stuck a knife through my teeth and was twisting it around, as though I had been hit in the jaw with a sledgehammer, as though my face were burning hot and freezing cold all at once.
What is trigeminal neuralgia?
Also called tic douloureux, trigeminal neuralgia is a condition which affects the trigeminal nerve of the face. It has been dubbed the most painful of all chronic pain conditions.
Typically, blood vessels compress one or all three of the branches of the trigeminal nerve, causing searing pain, numbness, and electric shocks. The trigeminal nerve is a three-pronged nerve responsible for providing sensation to the face. It is made up of the ophthalmic nerve, which controls the eyeball, upper eyelid and forehead; the maxillary nerve, which controls the lower eyelid, cheek, nostril, upper lip, and upper gum; and the mandibular nerve, which controls the jaw, lower lip, lower gum, and muscles for chewing. Trigeminal neuralgia tends to affect only one side of the face, but can affect both in severe cases, typically those linked to multiple sclerosis.
Colloquially, trigeminal neuralgia is referred to as ‘suicide disease.’ This is because those who suffer with trigeminal neuralgia find it incredibly difficult to articulate the intensity of their pain, and as a result of this feel very isolated. It is an invisible illness and cannot easily be described to others. Thus, the isolation coupled with the intense pain causes approximately 25 percent of all patients with trigeminal neuralgia to commit suicide.
Image: Ask Dr Shah.
Trigeminal neuralgia has symptoms similar to other conditions and is not easily diagnosed. Very often, it is misdiagnosed because very little is known about it. It is usually diagnosed by a neurologist after the patient undergoes a magnetic resonance imaging (MRI) scan. The MRI scan shows the blood vessels compressing the nerve and just how severe the compression is.
There is no cure for trigeminal neuralgia. The condition is initially treated with medication – anticonvulsants to prevent nerve firing, and tricyclic antidepressants to help with pain. After time, however, trigeminal neuralgia becomes resistant to medication because it is a progressive disorder.
The next step is surgery, of which there are several types. A rhizotomy is a procedure in which nerve fibres are purposely damaged to stop pain. Side effects of a rhizotomy include loss of sensation and facial numbness. A neurectomy entails cutting out a part of the nerve. Side effects of a neurectomy include long-lasting numbness, although the nerve may eventually grow back.
The long road to diagnosis
When I was 18, I met up in a car accident which resulted in several broken bones and even more bruises. The aftermath of the accident was chaotic and confusing and only after a while did I notice the shooting pains on the left side of my face.
I was puzzled by them at first – I took a trip to the dentist and after an inspection, she concluded that nothing was wrong with my molars and that the pain made no sense. For a few months, I just dealt with it, shocked by its intensity, but not knowing what to do.
A while later, I went back to my dentist, and after much begging, she eventually performed a root canal on the tooth I thought was the problem. While the anaesthetic had not yet worn off, she assured me that the pain would go away and I believed her. Much to my dismay, the pain returned with a vengeance when I got home.
The author, Humairaa Mayet. Photo: Provided.
Months later, I was diagnosed with temporomandibular joint (TMJ) syndrome by a maxillofacial surgeon. The diagnosis provided me with some closure, but I felt perpetually uneasy because my symptoms did not quite align with those of TMJ syndrome.
For close to five years I ran from doctor to doctor, from pillar to post, without finding any relief. I tried out an array of medical and homoeopathic treatments but none were helpful and although certain attempts – such as icing and then heating the area – provided temporary relief, nothing actually helped.
Eventually, an acupuncturist floated the idea of trigeminal neuralgia. I had never heard the term before, so of course I whipped out my phone and googled it. Every article I read felt as though it had been written about me. I finally felt seen.
Photo: Provided.
The next few days were a flurry. I went for an MRI scan, had some tests run, and finally got a diagnosis. Waves of relief washed over me because even though I knew I had a long and painful road ahead, I finally knew it was the right one.
What do you do when it hurts to smile and talk and brush your teeth?
You simply do not.
Life with trigeminal neuralgia is no walk in the park. Some days are good enough, some days are bad, and some days are downright horrendous. Some nights the pain keeps me up for hours. Most days I want to die. Some days I want to kill myself, particularly when the pain shoots through the left half of my skull.
Sometimes, the pain is so bad that I temporarily lose my sense of hearing in my ear and my eye twitches uncontrollably. The pain stops me from smiling and talking and brushing my teeth, and sometimes I even hold my breath. The pain is inexplicable, and when I try to explain it to my friends and family, I cannot find the words. As I write this article, I cannot find the words.
Photo: Provided.
Coping mechanisms
While my trigeminal neuralgia diagnosis brought me some relief, I did not know what loomed ahead, and now that I know, a part of me wishes that I did not.
Most days, I take more pills than I would care to count and their side effects range from dizziness and nausea to hair fall and extreme fatigue. Although I have been on medication for several months, my pain is only ever slightly relieved from time to time and I have still not gotten used to the side effects.
While I have considered surgery, my doctors have advised against it, saying that I am far too young for such intense surgeries.
Living with trigeminal neuralgia is quite possibly the most difficult thing I have ever had to do. Not only is it painful, it is incredibly frustrating to deal with. It gets in the way of everything.
Coping with trigeminal neuralgia is no easy feat. I watch tv, listen to music, and read to distract myself from the pain when it gets bad. When it seems to be bearable enough, I enjoy political organising, going out with my friends, and trying out new activities. When the pain is downright horrible, I try lying down in the dark and avoiding any and all stimulation, but nothing really helps. I used to self-harm when the pain was too much to bear, and still sometimes do, but not as frequently as before.
Now, I try as many positive coping mechanisms as possible. I go for therapy from time to time and do yoga when I can. My favourite coping mechanism is the support group I started for people with chronic pain. One day I shared my desire to start one on Twitter and got a surprising amount of responses. We have weekly meetings on Zoom which I try to have themes for and the discussion is always inspiring albeit nihilistic on occasion.
Where do I go from here?
Although the prospect of being on anticonvulsants and tricyclic antidepressants for the rest of my life terrifies me, the prospect of an invasive surgery is even more terrifying. I am working toward acceptance, and although this is horribly difficult when bolts of lightning are shooting through my face, I would like to think that I have made some strides.
Above all else, I would like to raise awareness about trigeminal neuralgia and assist not only people who suffer from it, but also those who suffer from any form of chronic pain in any capacity that I can.
More about Humairaa Mayet:
She is currently a Master’s Candidate at Wits, pursuing a degree in International Relations and an intern at the Institute for Security Studies.
An avid fan of plants and gardening, she enjoys cultivating her collection.
A leftist, she dedicates her time to political organising, seeking to bring about radical political change through grassroots movements.
To join the chronic pain support group, please contact Humairaa on 073 373 4077 or email her at humairaa3mayet@gmail.com
More about trigeminal neuralgia:
A poem by Humairaa about her struggles with trigeminal neuralgia:
An uninvited guest has made a home out of the left side of my face.
He waltzes about loudly and drags furniture across the floor, leaving scratches everywhere, and tightening my muscles with his tools.
Making sure that half of my face is only for him,
not for lipstick or food or a toothbrush or a comforting hand.
He has made it lopsided and ugly, he has taken away my dimple, and along with it, all the happiness that was hidden inside of it.
He is invisible but still manages to steal my smile and my words. They get stuck in my throat and rot at the back of my mouth.
With his wand, he sends lightning bolts down my nerves, and although I have felt millions, they shock me every time.
I cannot muster the strength to tell him to leave, only ever beg for a minute of reprieve which he is far too selfish to give to me.
I will ache with him in my jaw and my cheek and my ear and my eye and everywhere else, everywhere else.
It all belongs to him now.
I have given up, and even the tear which manages to fall from my left eye is quickly snatched up by his greedy palms.
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