I have a long glorious history of serious illnesses because of my entry into the world at the wrong time. I have led a notably psychedelic life and I confess that I was both puzzled and fascinated. I can’t say it wasn’t without strife because, in the beginning, it felt ghostly and here I will talk about one such ghostly ailment.
It was a warm October morning and I was in a merry mood having a good time because of the approaching Durga Pujas. I always try to make most of the time with my mother. The season is very inviting and makes us happy and less anxious. I sat down with a book determined to enjoy it thoroughly but suddenly out of the blue something zapped across my right eye. The jolt of lightening appeared repeatedly. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. This continued for the next few days but the pain was gone as abruptly as it appeared. I underwent an MRI scan and it confirmed the diagnosis of trigeminal neuralgia.
In trigeminal neuralgia (TN), the trigeminal nerve’s function is disrupted. It is the most excruciating pain known to humanity– this intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and jaw. Sometimes called the suicide disease. Bilateral presentation is rare.
Pharmaceutical science has medications to control the pain.
O’ I am in pain, tell me if there is any magical potion?”
The medical man put his attention,
Found a vessel pressing a nerve in the brain.
Leading to spasms of intense pain.
Stabbing pain, eyes tear,
Foggy vision, colours faded,
The sky is blue
Is it true?
I feel light-headed.
Trigeminal neuralgia can make me constantly frown,
But doesn’t have the nerve to put my spirits down.
I scowl in vexation.
I was initially put on medicine but it mostly didn’t contain the pain. I had fleeting jabbing pain which would fade away, at the most in a few hours. Pulses of electricity travelled through my cheeks. Doctors upped and upped my dosage but I was not satisfied.
I went somewhere else for consultation on less invasive procedures because the treating doctors were telling the haunting medical lore the melancholia of which was that Microvascular decompression (MVD) surgery is the only hope and while doing so they’d do a biopsy of my leptomeningeal hemangioblastomas not caring about the drastic and dramatic effect, not considering the highly vascular nature of the tumours—that they are richly supplied with blood vessels. A biopsy would make them bleed resulting in a stroke. After my first brain tumour surgery, done in 2006 I woke up with paralysis on the left side. After the craniotomy ( open brain surgery) I experienced total numbness in my arms and hands and I couldn’t close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back the control of my limbs but even now I don’t have sensations in my fingertips. Looking at tumour cells in the cerebrospinal fluid under high-resolution MRI scans are all that is necessary for an accurate diagnosis. A biopsy isn’t required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.
There it was confirmed by the doctor that the left-hand side pain which is milder than the right-hand side is also due to trigeminal neuralgia. Thus I have a bilateral manifestation of trigeminal neuralgia. The trigeminal nerve has three branches: ophthalmic, maxillary, and mandibular. According to the doctor it is rarely seen that bilateral trigeminal neuralgia with pain in all three branches on both sides.
I revisited the neurologist who previously diagnosed it. A new medicine was added to my list of medicines. I asked him that if it’s true I had bilateral trigeminal neuralgia…he gave a knowing wink and said but the pain in the left side is milder…why should he hide it from me? Who is he to decide the intensity of my pain? Mistaking the pain in the jaw for a dental pain I sought the help of a dentist. Because of my low immunity, I acquired some infection and got 105F fever. I wouldn’t have suffered if he hadn’t held back the truth from me.
But the major thing that happened after the medicine was added was my BP plunged down. I have tachycardia and high BP most of the time. I take medicine for that. I stopped the medicine and drank lots of fluids but to no avail. Doctors persisted in their decision of choice of medicine… He kept commanding in a military-like way that I have to take those medicines and my only respite from the overwhelming pain is the MVD surgery. It was because of that stubbornness that I ended up vomiting the entire night losing three kilos in the process.
I never knew how to cry because I was born without the vital emotion fear but when Trigeminal Neuralgia attacked me
I am Trigeminal Neuralgia
Daggers stab eyes
Sending a wave of fear
I learnt to cry as a jabbing pain as if a live electric cable was held against her eyes, cheeks, jaw and teeth.
A bolt of pain shot up the face,
Reached the farthest limit,
With disdain without grace,
Sneaking into the throat,
As quiet as a mouse
Huddling behind the ear,
Pulsating in the mouth,
Distorting face so quick,
Drilling teeth, eye swelling,
Making it tormented house,
A bedistressful dwelling–
Jumping off, crossing sides
Jumps and attacks and hides
It’s a race against time,
A gloomy struggle all-day
As the predicament shook me to the core
It’s a dreadful dream, a nightmare
That I battle every day and more
Heat or cold, the baleful row
Can’t thrust me into diabolical shadow,
Behind the darkness of the scare,
Is the sparkling cloud,
And the sun shining bright and so proud.
My heart stopped jumping with joy, enjoying the elixir of life and as I learnt to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as a bolt of lightning right out of nowhere started me hitting again and again.
All my life I have kept looking for hope. I have undergone countless surgeries including cancer and liver transplant and a few life-threatening ones but I have never stopped hoping. Hope sustains us. I got this hope from Mumbai who said he could definitely treat me by cyberknife radiosurgery.
I applied to many trusts one said it’s done but rejected at the last moment with words that ‘it is too expensive’, next one just denied that there are many genuine cases waiting and the other one said they had helped me earlier but they have now started helping children.
I got support and kindness and the cyberknife of the right side– the most painful side happened and we returned in time just before the covid19 lockdown. The nerve was shot with a high dosage of radiation to destroy it. But the pain in the left side remains as the left side is still pending. Also, there is trouble swallowing, stabbing in the throat bumps in the tongue which I can’t figure out.
Now the left side hurts such that I can’t smile, let alone talk. I mostly feel paingry.
I feel I can predict the weather better than the weatherman.
As it rains
As it pours
My pain levels soar
I take med
Go to bed
Hoping it’s tolerable in the morning
Sometimes dark mornings scare me
I’m afraid that the road looks longer
I choke on all the words which I never let reach my lips
Mum only can feel the pain it inflicts
In my madness
With her calmness
She lends me her ear
Putting meaning in my meaningless life
Ward off my silliest fear
Her unconditional love
Her smile makes the journey worthwhile
Never let me break down and cry
I shall stay strong because the road is long
Aye, we’d reach together by sunset.
There is a concern that immunocompromised patients are at a greater risk of morbidity and mortality due to COVID-19 infection, although data on liver transplant patients is limited at present. Post-transplant patients are advised to avoid hospital visits and use telemedicine thus we are prisoners in our own home until it is safe outside.
The pandemic has forced a delay in the treatment of my chronic illness. Due to the unpreparedness of such a sudden event and not maintaining social distancing, during the lockdown and not wearing a mask it has spread. Now it’s difficult to handle it until a genuine vaccine is developed. This way many educated people have put the lives of the vulnerable in jeopardy and many are suffering but I don’t know if there is anyone like me, immunocompromised and with lung damage because of MDR-TB and getting lancinating pain due to Trigeminal neuralgia. Wearing a mask isn’t painful and has any discomfort but it says that I care about everyone.
The mind is a powerful weapon they say,
Knowledge is the mainstay.
As the catastrophe happened,
Educate the public and allay fear,
Alleviate the gloom of doom.
Prepare, be aware,
Avoid public places,
Refrain touching faces,
Life is not unfair,
Soon days will be brightened.
In jeopardy may humans stand,
But by maintaining distance,
Not travelling to any distant land;
Ensuring the safety of the vulnerable,
Being responsible, together we stand.
Isolation is not perdition.
Not being utterly hopeless,
But being fearless,
Facing rigidly in calmness
Can bring the nemesis of pathogenesis.
The sinister brute would cast off its crown,
As time frown,
Monsters, cruel, fierce and base;
Causing deaths of life-forms in a brief time,
Would decay and fall,
Die a death approved by all.
DISCLAIMER : Views expressed above are the author’s own.