I've been doing some maths. Literature and art was always my thing at school, but something's been bothering me. Every time I read an article about trigeminal neuralgia, I see the phrase 'suicide disease'. I hate that name. Hate it.
I have trigeminal neuralgia. So I live with the consequences of a debilitating chronic pain condition. But I'm not suicidal. I get sad, sometimes. I know depression when it comes sneaking, and I won't invite it in.
Type 'trigeminal neuralgia' into google,and you get a page full of article headings describing it as suicide disease. My 84 year old father-in-law keeps asking every few weeks, how I'm feeling. And he's not talking about pain levels. He's been googling.
Many people with TN think it is the perfect name, and happily use it. Sprinkling it around like sugar on cornflakes.
Some say it's because of the facts. That it's both accurate and appropriate, because there are so many suicides due to trigeminal neuralgia. Yet I've seen figures claiming 26% of people with TN kill themselves. Or that 50% kill themselves within 2 years, or within 3 years, or after 3 years. Even with my preference for all things not-mathematical, I can spot the wildly differing numbers.
Trigeminal neuralgia, 'suicide disease'? I put my research hat on.
In the UK,
1 in 10,000 (6,000) people a year commit suicide
1 in 20,000 (3,000) people have TN
I couldn't find figures relating TN to suicide in the UK. But I did read that in 2004 there were 42 TN related suicides internationally. 8 of those were in the U.S. So the other 34 would be distributed amongst the remaining 195 countries in the world. 0.17 per country. Not even a whole number. But, for ease of estimating, I'll round that up. To the grand total of... one.
1 person might have committed suicide due to TN. 2999 did not.
Suppose all 34 were from the UK? 34 people might have committed suicide due to TN. Still, 2966 did not.
I'm struggling to see where the figures 26%, or 50% come from. Or how the word 'many' applies.
In the US, they keep very detailed, up-to-date suicide data. I've read the government's 2012 fact sheet.
370 in 10,000 U.S adults reported having suicidal thoughts. That's 8.3 million people.
2 in 11,000 U.S adults committed suicide. That is, approximately 40,000 people.
The facts in an information sheet about TN, show the following:
2 in 10,000 Americans have TN. That is, 45,000 people.
2 in 10,000 Americans with TN commit suicide. That is, eight people.
25%? 50%? Not even a whiff of factual.
Suicide is almost as rare as Trigeminal Neuralgia.
Suicides due to TN? The words 'hens teeth' come to mind.
Some say TN is called 'suicide disease' because it makes them have suicidal thoughts. Well, yes. Both the depression that can come with a chronic pain condition and/or the side effects of the medications, can cause suicidal thoughts (I know this. I had a few when I was on carbemazepine. They stopped, when I changed meds). But 8,255,000 other people in the U.S also have suicidal thoughts.
825 in 10,000
2 in 10,000 have TN
Perhaps the people with TN have worse suicide thoughts than anyone else? Thoughtier. More suicidier.
Some say TN is called suicide disease because it's the only way to describe to other people just how painful it is. Sit tight, the next bit might make you squirm. This is some of my pain:
Sharp slicing in my gums.
Sharp stabbing in my forehead, gums, teeth, and jaws
Hot stabbing in my right ear and eye
A freezing drilling in my lower jaws.
Lightning bolts in my forehead, teeth and upper and lower jaws.
Paralysing cramps in my ear, jaws, throat and chest.
This is some of other people's pain:
Sharp knife slicing
ice pick jabbing
hot ice pick stabbing
throbbing, piercing, stabbing
Sounds like a poem. A descriptive, percussive poem. Just not one you'd want to read. Or have on your bookshelf, even in an anthology of Sam Hunt, Elizabeth Bishop and Chris Raetschus.
When at a loss for an adjective or a metaphor, a simple 1 to 10 scale is usually enough for the people who need to know, like paramedics, or doctors. If I say 9, my occupational therapist or my doctors know I'm just hanging in there, if I say 3, they know I'm having a pretty good day.
Just in case any of you lovely non-TN readers are still in doubt, if you have had toothache, bad enough that you wanted to rip your head off, then you have experienced a smidgin of TN. If you've been through childbirth contractions, then you have experienced a smidgin of TN. (sometimes I feel like I'm giving birth through my eyeball). If you have ever had a large electric shock (no, not through a piece of grass on a farmer's electric fences!) then you have experienced a smidgin of TN. If you have survived being hit by lightning, then you have experienced.... actually, if you've survived being hit by lightning, then you probably have TN.
TN attacks last from seconds to a couple of minutes. They can occur a couple of times a day, or a couple of hundred times. I have attacks with almost every pulse beat. Now that I am on meds strong enough to tranquilize an elephant, these are mostly 2 or 3 on the pain scale. Between ten and twenty times a day, I have attacks from 5 to 8 on the pain scale. Four or five times a day I have attacks that score 9. Four or five times a week I have off the scale attacks, when the pain is so excruciating I am paralysed for several minutes and the meds don't touch it.
OK, squirm alert over. But I think you very definitely get the picture.
Some say TN kills.
TN is not a terminal disease.
It is a remitting and progressive condition.
It has no cure.
There are limited surgical options.
There are several medicines, of limited efficacy.
Smoking kills. 480, 000 Americans every year. 100, 000 in the UK. Smoking even kills non-smokers. 41,000 Americans.
Prescription medication overdoses kill. In 2011, there were 41,340 drug overdose deaths in the United States.
A handful of those deaths might have been people with TN.
But TN kills...?
TN changes your life.
It steals your sleep, your energy, your capacity to think clearly, your ability to live freely.
Tasks that used to take a few minutes, take a few hours.
Activities you used to love are punishing now pain is your constant companion.
Attacks are predictable but often unavoidable. They flare from the slightest of triggers: a smile, a laugh, a kiss. Speaking, singing, sneezing, yawning. Biting,chewing, swallowing. Food straight from the fridge. Hot cups of coffee. Ice cream. Salad. A bacon sandwich. Turning your head, moving your eyes. Cleaning your teeth, brushing your hair, having a shower. A light summer breeze, a feather on your cheek. A cold winter day, a hot summer day.
Many people suffer extreme side effects to the medications: memory loss, confusion, fatigue, depression, suicidal thoughts.
Many people cannot work, because their condition is too severe and frequent.
Many people lose their friends, because they cannot participate in social events the way they used to.
Many people become depressed. Severely depressed.
Not surprising, considering the impact this condition has. People need to grieve the losses of their old lives, adjust to the limitations of the new. They need to find pain management techniques, the right medications for themselves, support networks. They need to find out their specific triggers, and alternatives or solutions. While there is little help and no effective cure available for TN, there are myriad agencies, support groups, counsellors, self-help books, chronic pain managemnent techniques for helping anyone afflicted with depression. Suicide is not inevitable. Whatever the perceived cause, it is preventable.
I wanted to find out when TN collected the name suicide disease. Snuffling around on Google, in between all the screamy, exaggerated and plain wrong references, I finally began to get a more rational picture of the reason for the name.
Suicide disease is a historic label that predates the twentieth century. Much like dubbing women as hystericals, which Freud was fond of doing.
It comes from a time when there was absolutely no viable form of treatment or relief.
Brain surgery for TN was crude and dangerous.
In the 1890s, TN brain surgery carried a 20% mortality rate. General brain surgery carried a 90% mortality rate.
Opiates were all doctors could prescribe. Opiates do diddly-squat to relieve the pain of TN.
(Opiates can work alongside stronger anti-convulsant, anti-seizure meds. These drugs were not developed until the 1930s.)
Surgery was seen as suicide. Doctors were advocating suicide as the only realistic treatment plan.
This was over a century ago.
I found this quote from Dr Harvey Cushing, in a biography about him.
"Birks developed a classic case of trigeminal neuralgia in 1900 at age twenty-eight. His local doctor, the best in Montreal, gave him huge doses of the painkiller phenacetin but warned him against relying on opiates. Birks vainly sought relief from unnamed doctors in Philidelphia. 'Birks, you're a fool,' he was told, 'you have but two choices - opiates or suicide.'Birks went to London, where the famous neurologist David Ferrier, determined to find something that would work, prescribed more drugs, electrotherapy, and the services of a hypnotist. Ferrier had heard of the ganglion operation but considered it, Birk remembered, 'as a last desperate resort - a sort of polite way of committing suicide."
Medicine has moved on since then. Cushing is known as the 'father of modern neuroscience'. He revolutionised brain surgery and neuroscience with his methods, and before the First World War, he had significantly reduced the rates of mortality.
For general brain surgery, the mortality rates dropped to 8 %. TN brain surgery mortality rates dropped to 0.6%; 1 person in 1000.
Nowadays, the average mortality rate for brain surgery is 5%. The average mortality rate for TN brain surgery is 0.3%; 1 person in 2,000
And people still argue that TN should be called suicide disease?
I might have said, I hate that name.
I'm not saying suicide isn't important. It is.
I'm not saying that the few suicides/deaths due to TN are not important. They are.
If even one person chooses suicide because of TN, it is sad. For their family and friends? It is tragic. For people to be struggling with suicidal thoughts and feelings? Again, sad. Sadder still, if those people don't get the love and support, or the counselling and therapy that is available to help them.
What I am saying is calling trigeminal neuralgia 'suicide disease' is cruel.
Scare-mongering and damaging.
Emotionally manipulative and narcissistic.
Did I tell you I hate it?
Strong words, so I'll explain.
TN is such a rare condition, few dentists or doctors know about or recognise it. Even neurologists find it difficult to diagnose, and many will never come across a case. Google is full of information, but much of it is untrue and unreliable. Almost every book, article, reference to TN claims it is 'suicide disease'. Patients needing to take charge of their own learning with this condition, have to wade through a minefield of poorly-researched, factually-sparse, sensationalist material to find the medically accurate, evidence-based, realistic information. But to read everywhere that your condition is known as suicide disease, that you've probably got no more than 3 years to live because the pain will get so bad you'll probably kill yourself? Yeh, that's cruel.
The figures don't stack up to support the name.
Claims of 26% and 50% suicide rates... so untrue it's not funny. But terrifying, when people say it is true.
Death for most people is scary. The thought of suicide being the only option is scary.
Advertising a condition as suicide disease makes people scared.
The term self-fulfilling prophecy springs to mind. The figures suggest that very few TN patients choose suicide. Many, many of them, though are certainly struggling far more than is necessary with depression and fear that their condition will just keep on giving the gift of worse suffering, worse pain. Depressed and frightened people are stressed people. Stress can make pain conditions worse. Stress makes everything worse. Suicide is still illegal in many countries, it still has a huge stigma attached to it in most others. So people experiencing suicidal thoughts/plans are often too ashamed to seek proper emotional help and support.
Emotionally manipulative? Narcissistic?
Suicide disease just sounds worse than plain old trigeminal neuralgia, doesn't it? Hardly any-one's ever heard of trigeminal neuralgia. Everyone's heard about suicide. So let's just play the sympathy card: my condition is so bad I might kill myself, or I'll probably kill myself. Or the martyr card: my condition is so bad that half the people with it do kill themselves, but I'm still here, aren't I brave? Or the my chronic pain condition is worse than your terminal cancer, or her fibromyalgia, or his cerebral palsy card. Because mine hurts so bad.
Some people use the term suicide 'disease' actively. It's a deliberate choice. Facts are inconveniences to brush away like flies. I'm not going to try and persuade them to change.
Most people use the term passively, because they have seen it, heard it, and accepted it; almost everything they hear and read about TN reinforces the message. It frightens them, and it worries them. I'm asking those people to think about it now.
To think about it, place it squarely back inside its nineteenth century context and grasp today's reality. Trigeminal neuralgia sucks. It hurts, it's horrible. But lets describe it how it is: trigeminal neuralgia, a chronic, excruciating facial pain condition.
Understanding Trigeminal Neuralgia (TNnME)www.save.org.facts
suicide data sheet from ■■■■■■■■■■■■■■■
Harvey Cushing : A Life in Surgery, by Michael Bliss