Saturday, 8 February 2014

Myths & false statements; The reality behind the “nickname” & statistics about Trigeminal neuralgia

We’re over and over again being told that trigeminal neuralgia is 'the suicide disease' accompanied by some very disturbing statistics to “prove” it. Horrifying postulations are scaring sufferers, their family and friends. We have over months now gone digging deep. Is this information, which is going viral, really true? Let’s make it perfectly clear right now: NO IT IS NOT!

We want to emphasize, as you will see when you read on, that we know:
  • how painful Trigeminal Neuralgia is
  • that it's normal for people to sometimes feel they cannot cope with this horrendous pain (If you do have suicidal thoughts contact a helpline, your doctor or someone you can talk to immediately.)
  • that the statistics which we keep seeing are totally false: 
    • Do statistics on suicide due to trigeminal neuralgia exist? NO. FALSE.
    • Do 10, 26 or 50% commit suicide? NO. FALSE.
You don’t have to take our word for it, in the following we will show you some of what we've found. We will show you how you’re being used. We will show you why it can’t go on.

First we need to take a quick look back in history:

Where does the name come from?
We do not know when the first person suffered from TN, but we do know the first time the pain was mentioned in literature. It got recognized as an illness as early as the 17th century with reports in literature as early as 2000 years ago.

It might have been a Professor of Medicine, Sir William Osler at Johns Hopkins University (US), who first linked suicide and TN to the public imagination. Osler was identifying the need for treatment and surgery, the former mortality rate of patients (many due to brain tumors) and the frightful intensity in which the attacks took place. Osler wrote about it repeatedly and it’s included in his medical books from 1912.

Osler wrote about this more than 100 years ago. Osler was talking about the past, the history of TN patients before his time and not as a scientific fact.  Osler has no mention of numbers or statistics in regards to suicide and TN.

So, is it so painful?
There is no shortage of documentation that trigeminal neuralgia is one of the most painful afflictions known to mankind. There is further no shortage of documentation that literature and medical personnel call it the suicide disease possibly due to the intensity of pain and that sufferers facing the highest pain might contemplate that they can’t go on.  

Does that mean I’m suicidal?
No. Living with a chronic affliction can be very tough on anyone regardless of situation, age, finances etc. When the pain is horrendous, we are mentally and physically at our worse and it is understandable to think “I can’t continue with this pain”.

When talking about suicide there is a difference between being passive suicidal and suicidal. Let’s look at some definitions: Suicidal: Purposeful self-injury with the intention to kill oneself (suicidal behavior), or, verbalizing plan, intent, and having the means to complete a suicidal act. Passive Suicidal Ideation (thoughts and statements): talking of thinking about “being dead” or killing or hurting yourself, but not really doing it. For example: “I wish I were dead. Sometimes I just want to kill myself, I feel so depressed.”

It is not uncommon to feel this way and according to any government information it is more common for women than for men to have these thoughts. Yes some have and some will choose to end their lives because of the pain. But this does not mean that you are suicidal, on the brink of committing suicide or will commit suicide because you have trigeminal neuralgia. 

If you do have suicidal thoughts contact a helpline, your doctor or someone you can talk to immediately.

To the disturbing statistics that are being presented?
After reading thousands of pages, reports, searched extensively for more than 6 months online, contacting organizations, support groups and reading government statistics from various countries, we can with 99.9 % certainty say that there is no such thing as any reliable statistics over people taking suicide because of having trigeminal neuralgia. Statistics on suicide due to trigeminal neuralgia do not exist. Anyone that claims to know statistics showing the number of people that have committed suicide due to trigeminal neuralgia are either very misinformed or actually lying. 

Let’s take a closer look
"Trigeminal neuralgia is called the suicide disease. In fact, for those who live with TN for more than 3 years, about half commit suicide." FALSE

In 2009 an article was published in a small journal around how to resolve trigeminal neuralgia through the work of a chiropractor. While the rest of the article is full of references, this rather disturbing statement does NOT have any reference at all. Going though all the references provided we did not find any mention of it either. When we also know that NO statistics about trigeminal neuralgia and suicide exist we can say it is taken out of thin air. The statement is false.

"The literature confirming the suicidal tendencies of someone suffering through TN paroxysms is alarming.  Approximately half of those people who live with TN for more than three years commit suicide;" FALSE

This comes from an article published online by another author in late in 2011. The quote, half will commit suicide, is taken from the article from 2009. It is interesting that a so called journalist comes with this kind of statement without any background check. Further more citing from one source hardly merits saying that the literature (as in plural) is confirming anything. If we are kind we could say that the author might mean the passive suicidal ideation (thoughts and statements) when we are in a bad place. Is this information alarming then? No not at all, as we've written earlier (from many different sources we might add) it is not uncommon at all to have such thought and it does not mean that anyone actually will commit suicide. This statement is false.

So to 2 other postulates that have been around, 
  • 50% of those having TN will commit suicide within two years
  • Of the 1.7 million known sufferers of Trigeminal neuralgia 26% will commit suicide as a result of the severe pain.
These we have not found anywhere else than in videos and on posters, but we can speculate that they might have been inspired by the first article maybe, being changed on the way to fit a dramatic message to bring about “awareness” or maybe just made up.

But so that no one will wonder "Can there be any truth in this?” NO there can not and there is not any truth in it. We'll have a closer look at the actual numbers:
We can make it very easy: Every support group, organization etc working with TN sufferers should see large numbers of deaths due to suicide every year. After 1, 2, 3 or 5 years they see no such thing. Does every person having TN lose half their friends in 2-3 years? No we don’t. 

Actually most of us don’t know anyone that has actually committed suicide due to trigeminal neuralgia, we might have heard about 1 or 2, but not in large numbers no. We are not saying that no one has ended their life because of the pain, we are saying that fortunately it is not many. 

This actually just needs some good old common sense, but we can bring some facts into it too. First if that had been the case organizations, support groups, medical journals and governments would have reacted. It would also mean that the total number of suicides per year would be much higher. We've read statistics from many countries,  not just the UK and the US, but let’s have a look at the numbers in the UK as an example as they are rather in the middle when it comes to suicides per country.

In 2011, 6045 committed suicide in the UK. That gives a ratio of approximately 12 per 100,000. According to official numbers, the ratio of people being diagnosed with TN per year is 4 to 5 per 100,000. Would no one react if such a large number of suicides came from one cause? It becomes even clearer when we then know that of the 4-5 per 100,000, 80% are women (if we use 4 as the ratio, 80% is 3.2). If we then compare that to the actual women who committed suicide in 2011 it shows how impossible that claim is as the ratio for women are only 5.6 per 100,000. Would no one react in the UK if over half of the women committed suicide due to TN? Would it not be investigated, talked about and started some inquires? In many countries now war veterans are followed closely just because they have seen they are a risk group. Would they not do the same if it also applied to TN. Of course they would. 

The need for real facts – no more myths
To conclude, the name ”Suicide disease” does not describe any normal outcome of having the affliction.  It has partly a historic component but is more than anything a descriptive illustration of the intensity and debilitating pain that trigeminal neuralgia is.

The assumption that having trigeminal neuralgia will lead to suicide is a myth and has no basis in reality. Statistics don’t exist and the numbers presented are taken out of thin air.

When dealing with a condition like Trigeminal Neuralgia, it is imperative that people learn, get educated and diagnosed. We still have a long way to go before knowledge and awareness are wide-spread. 

All awareness is not good awareness
In the process of raising awareness, understanding and empathy, it’s extremely important that what is being shared is true. We cannot allow sensationalism and the need for attention get in the way. We need people to understand us, to listen to us, to believe us. If they doubt anything, they will doubt everything. Does anything go as long as it’s in the name of awareness? No everything does not and should not go. If someone can lie about something as serious as suicide, what else do they lie about. It will ruin our credibility. 

What can we do to stop the wrongful information and myth?
Stopping a myth and speculative statements is not easy. But we can try. We need everybody who is willing to bring about awareness for TN, to do so without sensationalist postulations and wrongful information. Trigeminal Neuralgia is bad enough; we do not need to make up figures to make it worse. We have more than enough facts that it is real, that it is very painful and that it is one of the worst. We don't have to make up figures along the way.

We can all start by saying NO to posts, posters, videos, articles etc that misuse our trust, hope and future. Say NO to those who just play a game for attention and money. Say NO to those who show no respect for those who is affected by suicide by their loved ones, the family and friends.

And more importantly, has anyone promoting these false statement thought about the affect: that their misuse of information might actually lead to someone taking their life because they see no hope?

Because this is not just about awareness, it’s about so much more; it’s about children, men and women, fellow human beings that are in a difficult, vulnerable position. This is not a game, it’s about living breathing people who suffer, it’s about their families, their friends.

It’s about you, it's about me, it's all of us! 

Please note: If you do have suicidal thoughts contact a helpline, your doctor or someone you can talk to immediately. Do not wait. If you believe a loved one has suicidal thoughts, act immediately. Most countries have a suicide or health helpline. Do not hesitate to contact them.

This article is written by End Trigeminal Neuralgia 2014.

  • J M S Pearce “Trigeminal neuralgia (Fothergill‘s disease) in the 17th and 18th centuries“:
  • Suicide fact at a glance, National Center for Injury Prevention and Control:
  • Suicide Statistics,
  • Coping with suicidal thoughts,
  • Suicide Prevention Guideline, MedlinePlus:
  • Articles from Suicide at MedlinePlus:
  • Trigeminal neuralgia information from National health Services (NHS):
  • Understanding and Helping the Suicidal Individual (American Association of Suicidology)
  • Suicide and Suicidal Thoughts(Mayo Foundation for Medical Education and Research)


  1. wonderful information! thank you for sharing!

  2. As a former webmaster and content author for the US Trigeminal Neuralgia Association and present moderator for the Ben's Friends communities, I have long found the use of the term "suicide disease" to be both unfortunate and inaccurate. Like the author of this page, I have observed people with TN in social networking settings -- in my case for 18 years. I also do not detect the obvious indicators which we should see, if people in significant numbers were choosing suicide.

    We no longer need rely upon opinions or surmises, to understand the relationships between chronic pain and suicide. There is an excellent recent paper by a group that studied these relationships in a three-year survey of ALL deaths among over 4.8 Million US Veterans Administration patients. Although chronic face pain was not one of the seven studied non-cancer medical conditions, the overall stats are still very indicative. Suicide risk in patients experiencing severe chronic pain is elevated but nowhere close to the ridiculous numbers suggested in some of the references above.

    Suicide in the US causes about 11.8 deaths per hundred thousand per year, and is elevated to 33 deaths per hundred thousand among the older and 80% male population of US veterans. Interestingly, among the seven studied medical conditions, the highest risk for suicide was among patients diagnosed with "psychogenic pain," 95% of whom also had another pain condition. This risk was 260% of the overall population risk -- or 86 deaths per hundred thousand per year.

    Arguably, for a chronic pain patient, the greatest risk of suicide may result not from the pain itself, but from being written off as a head case by doctors who have failed to diagnose or effectively treat the pain condition. I make this case and provide references in a paper published by the Society for Humanistic Psychology titled "Psychogenic Pain and Iatrogenic Suicide". See

    Richard A. "Red" Lawhern, Ph.D.
    Resident Research Analyst, "Living With TN".

    1. Hi Red…..thank you so much for this added info.

    2. Red, I am familiar with your input with other sites and groups ~ I agree with the statement of being "written off" by the professional world that may indeed cause a feeling of hopelessness and an indifference to life in general. I have indeed experienced this with my own TN docs - but through the support of my family and perseverance of FINDING a neuro that look / talked to ME and not to a statistic) made all the difference. The depression is INDEED real. The pain takes over... I can see why this might be dubbed 'the suicide disease'; but am so blessed to have had such a wonderful support of people to talk to and GET REAL HELP for not only me but my family as well.

    3. Hi Chef, you are right, the depression part can be very real therefore it is so important to get the correct help and care.

    4. Red, I usually find you right on the money about TN-and certainly you have always been a major force in getting things done for the TN community, such as fight the DVM5.
      But not this time. There is a REASON imo why TN is called the Suicide Disease. And I think the kind of pain it causes-makes this description right on! Dumbing it down or giving it a euphemism so it doesn't look as bad as it can be doesn't do people who truly suffer with it any justice or help at all.
      Sincerely, Julie

    5. Red, I know YOU don't have TN, that your wife does. TN is a HORRIFYING disease, and should have a HORRIFYING name to match. This disease will bring you to your knees and the truth is it will make you wish you weren't alive to experience it. It's name is absolutely appropriate. If you MINIMIZE the disease by giving it the fluffy bunny disease neurologists and doctors will treat it as such and NOT prescribe the drugs needed to deal with it. What you are doing is keeping people with TN in pain. It's wrong. Your wrong. And what your doing is going to HURT the TN community. Please think about what you are doing.

    6. I agree its not just the pain the thought you will have this pain for life meds that only wok for a while, surgery that is hit and miss, doctors that have never heard of it ,and waiting to get what help is out there often finding it by luck and searching yourself. We do need a name that reflects that .

    7. suffered for 18 months,came on suddenly..did not consider suicide but did wonder how i,d ever get out in public.facial expressions brought strikes on, :)

  3. People who willingly spread false information about the correlation between this illness and suicide rates, should be sued and punished in court. A disgrace to misuse facts of suicide for your own crusade...

    1. Thank you. We would agree…..those statements help nobody, and are so wrong. Thank you for taking the time to write.

    2. Flyer Bear, Do you realize WHY it is called "The Suicide Disease"? It isn't the depression that causes the thoughts of suicide, it's the PAIN. If you minimize that neurologists will not prescribe medications that might be able to help that pain. It has a horrific name because it is a horrific disease. Period. Maybe your pain is minor. Most of ours is NOT.

  4. I do not think it is false information at all. Just because some handle their neurlagias and take them in stride...hardly mean all do. There are many who are not associated with support. I personally DON'T think this is fair to say it doesn't happen...and nobody has contemplated suicide. Very disheartening to see peoples extreme struggles minimized. I would have expected fellow suffers to have a little more couth and understanding than that.

    1. Mindy, it is false information.
      There are no statistics and no way of collecting data like this.

      We are not minimising anyone's pain and of course, we realise that people do sometimes think about this.

      But if false stats are produced just to prove how bad TN is, people will wonder if other things we say are false too. TN does not need any false statements to say how bad it is. It is bad enough on its own without that.

      We need people to believe and understand everything about it. That will never happen if there are false statistics going around.

    2. I have to say that I agree with Mindy. I was never suicidal (or even depressed) until I started having trigeminal neuralgia pain. I was determined to end the pain one way or the other. I couldn't walk outside without a slight breeze bring me to my knees, I couldn't hold my new born son because he might touch my face, I hadn't even been able to brush my teeth in 2 months. If the surgeon hadn't decided to cancel all his appointments for the next day, I would have found another way to end the pain. You can not live with pain so serve that it feels like someone is hammering an ice pick into your face every second of your life. If you have a milder form of trigeminal neuralgia that isn't so painful, maybe you don't think of suicide. However, I wasn't so lucky. I'm sorry if you don't like that label but for me, it very much applied.

    3. Hi Paula, we are not trying to minimise how serious Trigeminal Neuralgia is. But, people need to be given hope, not false statements. We are also not trying to say that it never happens. But the statements which keep presenting are totally false.

    4. This ignorance posted as "fact" is doing more harm than good. Many people with TN already have a very hard time getting family and/or friends to understand them or even believe them...and now if they see pages like that, it will only solidify their doubts. Not only that, but social security DOES look at those pages. Sadly, they are so ignorant about what it is...they use these sites to get their information. I know this for a FACT. I was told this by someone at social security. So if THEY come upon sites like could make or break someones chances of getting disability. It's irresponsible.

  5. Exactly Mindy... I have TN. The level of pain and PURE MISERY is immeasurable. I'm one of the blessed ones to have such a wonderful support system in place along with a perseverance and ability to GO to a doctor that could help me. SUPPORT peeps - give info but minimizing what people OFTEN DO NOT verbalize (people CANNOT understand what they cannot see and TN IS invisible) easily because there just aren't 'words' and PA-LEASE do not put all in a neat little category. TN is STILL an unknown disorder; just ask the ones that live with it every day and try to have a conversation with others...
    I DO NOT want to be tauted as the one with 'the suicide disease', but I do not want to be told those feelings / fears are NOT real either. I KNOW THEY ARE!

    1. Chef, as I just said to Mindy, we are not minimising anyone's pain or their feelings.

      But to get awareness and understanding, we need the truth, not false, frightening statements.

      Often they are used to try to catch the headlines……but when people research the stats and find them to be false claims, where would that leave us?

    2. Trigeminal Neuralgia, TN is not caused the "Suicide Disease" because of depression, it is called that because of PAIN. Noone is worrying about the actual statistics. Neurologists KNOW why it's called the suicide disease, and if you change it to the fluffy bunny disease, patients with TN will have a more difficult time having their pain addressed. Your not doing anyone with true TN any favors here.
      Also- Trigeminal Neuralgia has a name. It's Trigeminal Neuralgia. Noone goes into the neurologist saying HELP ME I have the suicide disease. So your whole argument is pretty moot. The Suicide Disease is a name named by SUFFERERS of this disease. If your not one of them then call it something else. Why don't you just call it the boo boo disease then? If that's what yours is....

  6. Thank You I was so scared when I read what my future would be after finding the source of my electric shocks to the face was a condition called TN but I have found 3 years on that the future was not so bleak after all with the help of meds and the option of surgery.

    1. Hi there, it is frightening when you have TN and yes, the future can look bleak. I am so glad that you have found some kind of help.

  7. Mindy, nobody -- least of all me -- is minimizing the impact and depression associated with chronic face pain. Nor is anyone suggesting that nobody contemplates suicide. Some do -- even if few actually carry out the act.

    Even with respect for what you are experiencing (which I see in my spouse many days, and have been dealing with in other people for 18 years) I must still speak truth as I understand it. The term "suicide disease" is scary and depressing by itself, for people who already have a lot of that going on, as well as for their families. The shock or PR urgency value of the term is seriously overshadowed by the damage it may do to people who are already vulnerable and often socially isolated.

    Sincerely, Red

    1. Thanks Red. We always think about people who are new to TN. Just given the name of the cause of their pain. They look online to find out more, and the first thing most people will read is it is nicknamed the suicide disease. Frightening is an understatement. But to then find posters circulating on Facebook telling them that if they have TN for 2 years, there is a 50% chance of them taking their own life, must make them feel totally worthless and lose any hope or fight they have.

      I am glad you are in agreement with us here. Let's hope we can make a difference.

    2. No Trigeminal Neuralgia (your name) FRIGHTENING is what an attack of TN IS! This isn't about depression or going online and finding out it is the suicide disease. Believe me, most of us were VINDICATED by our experience when we saw the name "The Suicide Disease".
      I call a spade a spade. Horrific name for horrific condition.
      Minimizing it will get you nothing but inadequate treatment. Your a fool!

    3. I am hardly new to this. I have been dealing with for nearly three decades. Of course it is scary to read "Suicide Disease"...but TN is a scary disease. I agree the stats are most likely off...but never have they said those were the stats that WILL commit suicide...but stats on the percentage that HAVE commit suicide. I am sure before surgeries...the rate probably was 50%+. I also agree that there are not nearly that many...but to make it sound as it suicide doesn't play a part is very wrong. I will bet that even though 50%+ do not commit suicide will find 50%+ who have contemplated it or asked a loved one to kill them. It is what it is. We can't sugar coat it or we will be doing more harm than good. For over 27 years I have dealt with this hell. There is even a big difference between 20 year and 27 years. At this point it IS a living hell. I HAVE considered killing myself. I HAVE begged my mother to kill me. My autistic son is the ONLY reason I am alive. That is sad because otherwise, I would never think about suicide. Other than being sick with my four is good. Nobody WANTS to kill themselves...they simply want to escape the pain.

  8. I started all my mystery pain almost three years ago. Thought was sinus, teeth problems (which I had three pulled for nothing), TMJ (I wear a mouth guard), etc. I have been to more dentist, doctors, etc. Towards the end of last year I was diagnosed with TN. My life had totally changed for the worse at times. I too read how this was labeled (suicide disease). I don't like being told that. Yes, on my worse days I would like to be done with this, but I have good support of friends (who know I am hurting) and family who do understand. I appreciate these sites and the good information they give. I have a good doctor now and hoping for the right treatment to give me more good days. I am a fighter and hope others out there join me. I want the life back that I once knew.

    1. Hi there, it is a horrible condition. I truly hope you can have more good days than bad. Having good support is a huge help.

  9. i have had TN for 18 years now. I have experienced a world of problems trying to get help from doctors who were resistant to providing any decent level of relief. Reading that TN is also called the "suicide disease" did not scare me b/c suicide is something i would have to choose to do. Perhaps if it said TN was "terminal" that would scare me, because i would have no control. Instead, seeing "suicide disease" associated with my pain condition helped me to feel less scared and okay with my negative feelings, and general hopelessness seeing that these feelings were due to my TN and not something else wrong with me mentally or emotionally. It helped me to accept this type of ideation for what it was and move on instead of drowning in it.
    I have been reading Judy Foreman's new book, A Nation in Pain, which cites that individuals with chronic pain are at twice the risk of suicide than other people.
    I agree that we don't want to be associated with false figures or bad research. But perhaps the name "suicide disease" doesn't really stem from numbers of actual suicides as some of these false claims have interpreted. In my opinion, the term "suicide disease" is referring to our experience WHILE LIVING with TN. That the pain is so bad, the treatments so poor, the doctors are often resistant to adequately treating our pain, friends and family are not understanding or believing us, leading us to depression, fear, anxiety, and isolation....Each of these experiences would lead to suicidal thoughts in any normal person, much less dealing with ALL of these issues at once! Fantasizing about any pain relief (even if through death) helps us to feel a little more control over our situation. This is what i interpret "suicide disease" to mean. NOT that i will have to kill myself because i have TN.

  10. 'Suicide' is the wrong description but, 'suicidal' disease is surely correct. There can be few of us who have not felt suicidal and said or cried 'I can't go on like this', even though somehow, we mostly do. I'd like this kept in mind. I'd like the powerful nature of this condition to be better explained in all medical literature so that non sufferers can understand better.. I'm am about to write to an on-line medical group to ask them to do so.

    1. It is. It's called Trigeminal Neuralgia. That's its name. You can nickname it whatever you want depending on how it makes you feel. If it gives you a little owie, then call it the little owie disease. Hopefully you'll still get proper treatment.

    2. I'm afraid I don't agree, I think they should stick with the name. It's extremely hard to make anyone (including doctors) understand the intensity of the pain, a lot have never even heard of it but when they look it up and see the words "Suicide disease" at the very least they take it a little more seriously and show a bit more compassion.

      Frankly, I hate the term suicide, I've lost two immediate family members to it (not suffering with TM) and I would never contemplate it myself, However, I've lost count of the times that I have said "I just can't take it any more, it's not possible" during an attack. Obviously, I did take it some more, I've had 3 bouts in 3 years, and so has my daughter. But I certainly understand what they mean by the term. You may not contemplate suicide but (during the attacks) it does make your life not worth living.

  11. First of all, we're very glad we've been able to help some. Thank you for daring to say you've been helped. At the same time it makes horribly sad reading, this tread and some of the comments as we must have failed miserably because the points raised here is already in the blog post so why criticize the lack of something that is there? so either we must have written it really badly or ...
    1. A segment is about the pain, that there are a lot of literature that confirms the pain and that it is one of the most painful afflictions know to mankind... how that can be taken as minimizing the pain we dont know as the blog states that the pain is real, bad and well documented...
    2. Another section of the blog talks about how normal it is to have thoughts when the pain is bad that you can't handle it and that you can't go on... so being criticized for not taking that into account is a little strange
    3. The blog acknowledge that some find life to hard and want to end it, that's why its mentioned several places that if you do have it please seek help immediately...Yes some have and some will choose to end their lives. Statistically its today 12 people per 100,000, and even with doubling the risk we're still talking way way less than 1% (as the highest risk is calculated to 36 people per 100,000) the largest group being men.

    4. the blog does say that the name probably is in use because it describes the pain

    We also have to admit we find it difficult to comprehend that the blog post takes away the seriousness of the affliction just because it states that, have to say fortunately, half of us will not commit suicide... Is that really a bad thing???

    EndTN know all to well what its like to have a loved one end their life. We know the pain, the suffering and the hardship, the affect a suicide has one loved ones. That is EXACTLY why we take this so serious.

    If we by writing this blog post has made just one understand that suicide is not a normal outcome for TN then we have succeeded... because it just one person reaches out and sees that what has been written is speculative, rotten and NOT commit suicide then we're happy...

    The affliction needs to be taken seriously and we need to have a proper discussion on how we are to help eachother... we're all affected by it being sufferers, family or friends

  12. I think this is a valuable discussion. As a person who's sister took her own life and the mother of a son who suffers from psychiatric illnesses that include suicidal ideation I appreciate your comments. My son made a very serious attempt at taking his life and came within a few minutes of death. I dearly wish that TN was not referred to as the suicide disease. It is also tough on my family members to see that description associated with the condition that I have. Psychiatric illnesses that have led to suicidal thoughts and even suicide do have something in common with TN. Those who have not experienced these conditions have an extremely difficult time comprehending how difficult it is to cope with these illnesses.

  13. I didn't have suicidal depression until I had this pain. I spent a week in the loony bin because of this pain and this was before diagnosis. I am chemically sensitive so I can't treat this.

    I can't argue with statistics, but I still think it deserves the nickname!

  14. My vote is also that it should have the name suicide disease. I understand that the statistics may not back it up now but I have been to that edge more times then I can count. If it weren't for my kids I sometimes wonder if I wouldn't have. Its been hard and when I was diagnosed with this pain, that nobody could outwardly see, for it to be listed as the suicide disease helped some of my family and friends take my pain a little bit more seriously.

  15. This is a difficult, emotional issue, and I believe that at very least, thanks are due to the author for applying journalistic standards of evidence to the question of whether TN should continue to carry the nickname of "suicide disease." I have TN, or as it often feels, TN has me. I also have a sobering family history of suicide. This doesn't make me an expert, but I can empathize strongly with those who feel that the term "suicide disease" is appropriate given the excruciating nature of the pain, and those that feel the phrase is misleading and perhaps dangerous because they know what a suicidal person "looks like."

    There is no agreed upon percentage of suicide deaths per condition to "earn" it the name "suicide disease." What would be the appropriate number? 50%, 15%, 5%? Given the ultimate nature of suicide, maybe consensus would emerge around a percentage on the low side, but even then, there would be disagreement. Look no further than global warming for an analogy, where there is scientific consensus that humans are causing rapid change to our climate, yet there are a small number of scientists, and a larger percentage of the general population, who disagree. To extend the analogy, there are vocal experts and advocates who believe that our collective inaction on reducing greenhouse gas emissions is suicidal, and naysayers who call this kind of rhetoric alarmist.

    From the standpoint of the state of current science, if any condition deserves the moniker "suicide disease," it is probably depression. There is a body of evidence to support the correlation between suicide and depression, and further evidence to demonstrate causation: depression can lead to suicide. In the case of TN, as the author has shown, no such body of evidence exists.

    However, lack of documentation doesn't mean something isn't true. It means it hasn't been documented. Here, I have to find some fault with the author's method of pointing to percentages of TN diagnosis and suicide in the UK population, and concluding that if there was a high correlation between the two, surely someone would be doing something about it. True, it is very, very likely that fewer than 50% of those with a TN diagnosis commit suicide in any given year in the UK, but until someone actually cross references the list of suicides against the list of TN diagnoses, we can't actually say. Even weaker is the notion that because we don't know many people on the various TN support groups who have actually taken their lives, it follows that there is not a high correlation between TN and suicide. Suicidal people typically isolate themselves and therefore wouldn’t usually be active contributors to such groups. The best that might be said is that "anecdotal evidence" suggests that, despite claims to the contrary, fewer than 50% of those diagnosed with TN commit suicide within the first three years.

    Similarly, to my knowledge, there is no evidence to back up the claim that calling TN the Suicide Disease is dangerous, as those who wish to see the nickname dropped have implied. We would need to know how naming something affects behavior, and this would be very tricky to do. It sure SEEMS dangerous to call something the suicide disease if people are perhaps predisposed to suicide, but we don't really know. In an odd way, this fear of how the name affects people strengthens the argument of those who want to keep calling TN the suicide disease, because it suggests that those with TN are more likely inclined toward suicide! Having said this, I understand fully why those who have lost someone to suicide object to the imprecise or even casual use of the term. I also intuitively understand why using the phrase “suicide disease” alarms friends and family members, and perhaps too much so.

  16. To me, all of this suggests a couple of things: 1) that the links between TN, depression and suicide ought to be studied in a methodical way, and 2) even when the results are in, there will probably still be disagreement about whether TN is justly called the suicide disease.

    Personally, I believe that I am among many who have thought they would like to die from time to time because of both the physical and psychological pain of TN. I believe I'm also among the vast majority of those who will never take action despite these ideations. I don't know this, but I believe it to be true, which of course are different things. I also understand why those with TN are desperate to be able to substantiate their pain by calling it the suicide disease. Somehow, saying only that "it is one of the most painful afflictions known to mankind" doesn't do it, doesn't capture the catastrophic nature of a TN attack, the anguish of not having that pain taken seriously by some doctors, family members and friends, and the frustration at the absence of an easy and reliable cure. We need something, SOMETHING, to help convey "THIS PAIN IS BEYOND ANYTHING YOU'VE EVER EXPERIENCED AND FEELS UNENDURABLE!!!!" and have people understand even if they can't really relate. Something with a shock value that helps people value our shocks. Something that will instantly make those people who dismiss our pain as something "all in our heads" like Victorian women with the vapors seem callous and ignorant.

    The debate on this page is all to the good. It would be even better if more people were paying attention. Ultimately, no name is going to make a difference until more are aware of this brutal disease.

  17. As a new sufferer, I would say that the term used to describe TN, the "suicide disease", is actually reassuring in a sense...and I'll tell you why.

    For one who has never suffered an attack of TN pain, but suddenly finds them self under siege, one can assume that the level of pain being felt is likely normal for someone experiencing the effects of said condition. The term "suicide disease" comes to mind in the midst of it all, and we can relate the intense level of pain to such an urgent sounding nickname. I can remember in my early days feeling as though one of my teeth would actually explode in my mouth, or rupture, etc., but I knew from dental x-rays that the tooth had no abscess, and so the pain must related to this new condition. It was reassuring, yes, to know that I was feeling something normal to the condition, and had it not been called the "suicide disease", I would not have bought the fact that anyone could possibly experience such intense pain without being on death's door step. For as much agony as I was in, I knew I was going to live.

    Having trigeminal neuralgia known as the suicide disease just plain old makes sense. Not because it causes people to kill themselves, but because it causes a pain so intense, and disrupts day-to-day living to such a large degree, that it can cause sufferers to contemplate death as a means of escape from the never-ending hell that they must endure. It could also have a nickname that suggests that life as you knew it before TN is now over. Maybe "the good'ol days are over" disease. Pain, drugs and their side-effects, restrictions on abilities and activities that were once so easy to perform.... You really realize how much of your life you took for granted before TN takes so much away, and adds so much turmoil in return.

    TN really does need an urgent-sounding nickname - without it, how could you possibly convey the intensity of it's effect on sufferers so succinctly? And it is apt. I never took it to mean that I'd be hanging myself within days of diagnosis. It is described as such in most literature due to the fact that it is likely the most painful chronic condition known to medicine. Never in the literature that I read did it state that the pain causes people to kill themselves.

    I've rambled on enough now, and I'm not even certain if what I've typed has the flow that it ought to have. I have my pain-control meds to thank for that. I used to be a brilliant writer before this all began.

    I agree with what many have said - the most important thing is getting awareness out about this rare condition. We, the sufferers, need help. We need understanding. We need compassion. We need to be treated with respect, and have our words believed by loved ones and professionals alike. We need a cure to be found...we need our lives back - and if the latter is not possible, we need excellent support to help us transition from what once was normal, to our new "normal".

    God bless.


    1. I wish to clarify this statement: "For one who has never suffered an attack of TN pain, but suddenly finds them self under siege, one can assume that the level of pain being felt is likely normal for someone experiencing the effects of said condition."

      What it ought to say, is "For one who has just been diagnosed with TN, and finds themselves suffering a painful attack, one can assume that the level of pain being felt is likely normal for someone experiencing the effects of said condition."

      I understand that many sufferers go years without a proper diagnosis. I was very fortunate in that mine was diagnosed within weeks of onset. After the first major flare-up, I went to the ER the following day, and was taking carbamazepine by bedtime. I was lucky in that regard.

  18. As we raise awareness of TN we will need to look at the big picture and carefully strive for balance and a more complete understanding. Speaking from 25+ years of writing experience, the written word is misinterpreted no matter how clear it seems to the author.
    I hope that the author(s) of this article understand where they can improve. Yes, we need to make sure that false claims and stats are undone. However, we cannot ever undermine the seriousness of TN even a little bit. This is the problem that many people who left comments are expressing and the majority suffer from TN (as do I).
    If those with TN see a problem with the article, think of the misinterpretation that the general public will have. The author defensiveness I see in the comments will be better used to listen and consider other opinions.
    I don’t think anyone doubts the accuracy of the article; they want a more even-handed approach. For example, what if the article spoke to the difference between actual suicide and all of the TNers who have thought about suicide? This helps readers understand and hold onto the seriousness of the disease while still allowing the explanation of falsehoods.
    Also, please consider using editors. Those people who have an interest in raising awareness but are not within the usual group of folks reading over the article draft. These folks can be priceless.
    Thanks for listening,