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Living With Facial Pain

Numbers: thoughts on the name "suicide disease"


#1

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.
Eight.


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
being tazed
sharp stabbing
blowtorch burning
hot ice pick stabbing
electrical storm
razor scraping
knife hammering
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.

Cruel?
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.


Scare-mongering?
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.


Damaging?
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.



References:
http://www.nhs.uk/conditions/Trigeminal-neuralgia/Pages/Introduction.aspx
Understanding Trigeminal Neuralgia (TNnME)www.save.org.facts
http://www.samaritans.org/news/updated-suicide-statistics-uk-and-roi
http://www.cdc.gov/tobacco/data_statistics/fact_sheets/health_effects/tobacco_related_mortality/ http://www.patient.co.uk/health/smoking-the-facts
http://www.cdc.gov/homeandrecreationalsafety/overdose/facts.html
whonamedit.comwww.bmj.com/rapid-response/2011/10/30/mortality-rates-mvd-more-recent-results
suicide data sheet from â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– 
Harvey Cushing : A Life in Surgery, by Michael Bliss


#2

Thank you so much for this. I have used the term myself, being new to the disease and not knowing how to describe it. I will never use it again. I agree that it could be a self-fulfilling prophesy if people who are suffering think suicide is so common. I also think that at times the pain is so bad and the depression so overwhelming, suicidal thoughts can creep in. But we go on, having each other on here and our loved ones. Thank you for doing all of this research for us. I hope everyone reads this. You helped me so much this morning.


#3

I'm thrilled to know it's helped you, Nolagirl. Wishing you a low-pain day


#4

Very well written paddy, thank you for sharing this.
I too have used the description to those who clearly don’t understand the severity of the pain, BUT I always clarify that this term was coined back in the day when there were no options for treatment that helped relieve some of the pain.
I too have had to reassure people that I am not suicidal. Have I wanted my life to end during severe prolonged episodes? Most definitely. But not by my hand, these words, whispers to the universe were my cry for help, relief of some kind as I couldn’t fathom another second after 13 hours straight of intense repetitive pain…
I am not suicidal, I am strong. I have been pushed beyond all preconceived notions of what I can handle and it has changed me profoundly.
No one will ever truly understand my journey, but me.
I shouldn’t have to reassure anyone …but alas due to exactly what you state, at times I must because it is written so often…
Be well, (( hugs )) Mimi


#5

Mimi, I like that you make the distinction so clearly between having moments when you want your life to end because of the pain, and taking your own life: it is an incredibly important distinction. And I love your mantra of "I am strong, I have been pushed..." It's that kind of focussed and positive self-talk that is so so valuable.

Ronni, thank you!

Hugs to you both, and low-pain wishes


#6

Thank you, Paddy. This is very well written and I appreciate your ability to find words to describe the indescribable without using the term suicide disease. I was only diagnosed with TN about 3 weeks ago and certainly understand how and why the term came into use but agree totally that I do not ever want anyone to think that I am on the verge of taking my own life. The truth is I am scared about what my life will be like in the future and hearing this disease referred to that way is even more frightening. Thanks again for reminding me that there is hope even in the midst of the off-the-chart, electrical, stabbing pain.


#7

Thanks Patty... I'm glad it's given you some help and comfort.

I read your profile and was struck by some parallels to my own which don't usually feature with TN. The chest pain, radiating into your throat and jaw, and your ear pain... this could be glossopharyngeal neuralgia, rather than TN. It is even rarer, but similar, and will respond to the same meds. There's a section on LWTN which will tell you more about it.

In the meantime, welcome to LWTN. Wishing you many low-pain days!


#8

Thank Paddy so much for 1, writing this. 2. for the research. 3, for sharing. I hope you don't mind me sharing this on my FB page as I"m having the same discussion about it with not adding "suicide disease" on TNnME website or in any of our awareness projects. Thank you again, Toni Saunders


#9

Saying Suicide is like talking about Fight Club - you don't talk about it unless you are seeking attention. Most people who want to die don't broadcast it because they don't want people to treat them different. I've had TN type 2 for 18 years. Just got MVD done and waiting for symptoms to go away. In my case along with pain it left my face looking a bit crooked because it the muscles on the left side constantly slowly tightened. I am hoping I can kind of fix this or the effect will go away due to the nerve impulses being halted. Even in the days of modern treatments a good number of people go through a lot of docs before actually getting a proper diagnosis and proper treatment even though we are not in the 17th century. Thats what happened to me at least. I would not want people to think I am suicidal if they read up on what I have but like any bad condition it certainly can drag a person's quality of life to the breaking point. I would also say in the modern era when looking at suicide rates quantifying a percentage is difficult. For instance someone who commits suicide may not commit an obvious suicide by hanging them self rather they might make it look like an accident to cause less pain for loved ones or for insurance reasons which would mess a up a statistic. I guess I am only commenting that a crappy condition can ruin lives whether it be cancer, huntington's disease, or trigeminal neuralgia etc. The condition itself does not need the word suicide in it to spell out that it sucks and people may not want that word associated with them. At the same time yes stuff like this can make people want to die. My advice to any going through a tough time with this condition is to get in touch with good doctors that specialize in this condition. It will speed it up getting decent treatment options. As to my personal thought of suicide I looked at like I am under duress and no good decisions are made during that so rather than make a decision the best thing to do has been to take steps to get fixed and then I can reevaluate. I hope my commentary doesn't sound too dark but for anyone who has had suicidal thoughts transfer that energy to getting your problem solved. After that you may find yourself lacking the reason to want die.


#10

I use the name suicide disease when describing to others for the first time, that don’t know about TN. The seriousness of the pain, how much worse it is than anything else out there, that ever was… In history! And i do think that there were people that did commit suicide before correct medication was discovered. And even if the numbers are not huge the fact that their pain is that bad some days says something. Any TN suicide is TN suicide.

I don’t think there is anything wrong with using the word suicide. And maybe that’s because on my worst days i do contemplate suicide. I think that if the day ever came that if my medication stopped working completely and surgery didn’t work i couldn’t live in the pain of being shocked in my forehead, while an ice pick is in my eye, bleach is being poured in my eye and a baseball bat had hit me below the eye, consistently, my whole life. Maybe you are stronger than me or more moral than me but i will commit suicide I’m pretty sure.

Of course i am definitely for educating the public about TN, especially so we can get funding for a permanent cure.But regardless of all the facts, i think suicide disease is a pretty good way to describe the seriousness of TN. Im not offended by the phrase suicide disease, on the contrary, this shocking description may be the the only way to describe the painful shocks of TN.


#11

It was called that cause in the past before there were meds to treat it people could no longer handle the pain and chose death. Modern times there are surgeries, meds, and numbing shots to help us through the day. I am not suicidal but I can understand how it would wear on people to have no treatments to help with the pain. Actually it is said that is were vodoo dolls got a reputation. People would describe it as if someone was stabbing them or poking them in the eye. So naturally they pissed off a witch.


#12

Amen.
applauds
The last thing we need is to be describing this disease using the term “suicide” and just perpetuating the horribleness of it.
No one escapes life without going through something terrible and I try not to see myself as a victim and more just as a normal human going through a difficult time which I WILL survive.
It IS a terrible disease, but we ALL will suffer in our lives and I try to avoid comparing sufferings. We have it within ourselves to live and make the most of it.


#13

Hi Toni, sorry I haven’t replied to you earlier. I haven’t been on the site for months so hadn’t seen your message. Thanks for the support. I feel it is so important to have this discussion and get the message out there that it helps nobody to use such a cruel name to describe what is already a cruel enough condition. You’re more than welcome to share my article on your page. Cheers, Paddy


#14

You make some good, valid points, Beatle. I’d add that as well as finding a good TN doctor, when dealing with suicidal or depressive feelings, a good therapist is vital too. It is so important to distinguish between feeling suicidal (which is understandable) and calling a condition the suicide disease. And as you say, this is by no means the only crappy condition people can get.


#15

Tulips, the name suicide disease does not describe the pain. “shocked in my forehead, while an ice pick is in my eye, bleach is being poured in my eye and a baseball bat had hit me below the eye” describes the pain. There is a big difference between saying you feel suicidal, and calling a condition you have the suicide disease.


#16

I have used it, but agree with all of the above. I felt at first that it helped people understand the severity of the pain. People would so, “oh, I get bad headaches too.” Also, my spouse was suicidal in the beginning–something he had never been before. He has received appropriate care and has learned to live with the pain. He is an amazing man. In the future I will try harder to describe the pain instead of using that term.


#17

I have also used the phrase in describing TN for the first time to someone who has no reference point on how severe the pain can be. I tell them that sufferers don’t actually kill themselves but when the pain is at its worst they’d like to. Maybe I should change that to “wish they were dead.”

Also, as a side note, you left out, on your list of symptoms, the one that plagues me the most which is, a sledgehammer banging a railroad sized spike into my face. Oh boy!


#18

I am so glad everyone posting to this tread has never been suicidal due to their TN pain, but I find comments made here to be very dismissive of those, like myself who have. It is well known that long term pain can trigger suicidal depression. After 21 years of dealing with TN, I have spent the past 3 years of my life working in suicide prevention, and TN is a major part of my story. I have lost count over the years how many people who have messaged me asking for help when they have become very overwhelmed by the TN, and they are starting to see no way out. Thing is many do not ask for help publicly do to a lot of attitudes like what have been expressed here. Just because it does not happen to you, does not mean it does not happen to others.


#19

I don’t think anyone on this thread is being dismissive of people who have considered, or attempted suicide. That’s a whole different subject, and while people with chronic pain conditions can often feel suicidal, there are also many other reasons why people can feel suicidal. The point is if a condition should go by the nickname the suicide disease. I imagine, as you work in suicide prevention, you would have strong thoughts against it as a nickname.


#20

The first time I had a TN attack that lasted nearly two hours continuous pain in my left eye, until I got to the hospital and was told I was having a migraine, then receive a couple of dosages of morphine and something to relax me and put me completely out, if I had a gun I would have shot myself. seriously!