Thursday, September 26, 2013

Trigeminal neuralgia: Is it really the suicide disease?

Several years ago a blog post popped up, stating that 26 percent of all individuals who have trigeminal neuralgia (TN) commit suicide. I was working for TNA, The Facial Pain Association at the time, as the Director of Patient Services. What this means, basically, is that I communicated more with people who have TN (and their families) than most people did.

The people who contacted me were upset about the statement were upset. The link to the blog was forwarded to me, and I sent an email or wrote a comment to the author. I asked him or her to reconsider the post because it had alarmed people. I also told the author that we at TNA knew nothing of such a statistic. I never heard from the blogger.

I have no statistics for you, but I have my own experience and anecdotal knowledge. I am hoping it will reassure everyone who reads this.

For two semesters, I did a twenty hour a week internship with TNA to finish my master's degree in rehabilitation counseling. I took a break and later went to work for the organization. I became ill with glossopharyngeal neuralgia shortly after I went back to work, so I was employed just a little over a year. During the course of my internship and my employment, which was approximately two years, I was not informed of anyone who committed suicide during that time. I suspected one person might have taken his own life, but the cause of his death was not shared.

This statistic, 26 percent of all people having TN committing suicide, is completely false to the best of my knowledge. Recently this assertion has gained momentum. The thought of so many people succumbing to this choice is downright scary: almost seductive on a really bad day.

It is not unusual for people who have TN to sometimes consider suicide. It happens in the midst of the horrifying pain. I remember the first time I voiced what I had been thinking for months: "They've been too hard on Dr. Kevorkian. Some people might really need him." Dr. Kevorkian was sitting in prison at the time for assisting someone who wanted to end his or her life. I had joined the ranks of those people who considered bringing my pain to an end. As a counselor who has experienced this type of suffering, I want to encourage you to not be alarmed about fleeting thoughts that occur in the midst of and immediately after the pain strikes.

How did TN get the label? It was explained to me that years ago, before medications and surgeries, that suicides were more prevalent. This is anecdotal information. I cannot say that it is factual. 

Here are a few things we can do to help us deal with the urge to end it all:

Have a network of support. If you have joined an online group, find two or three people in it who are usually positive and supportive. Find ways to contact them that do not require talking, such as text message or email. Be available for them when they need you.

Tell a trusted family member or friend. This is more easily said than done, but don't give up on finding someone to trust. Share with this person that you want to live, that you want to get well. Make it clear that, at times, the pain makes it difficult to want to continue.

Make of list of reasons to live. Make this list as vibrant as you can, including pictures of people you love. Write their words of love to you and things they have said that make you laugh.

Eat properly. Protein shakes can be a great way of keeping one's body sugars stabilized. They do not require a person to chew or cook.

Tap into your spiritual strength. Mine comes from Jesus Christ. Music, scripture, and prayer sustained me during my illness. For a long time I prayed to die. Then I began to ask the Lord to help me live, to live well. He answered that prayer. With Great Mercy: read it and know that even on the worst of days, you are not alone. You can buy a copy of my memoir on Amazon or Barnes and Noble or from me. I will sign it and write a personal message to you.

Please post your own suggestions on my blog for others. We really do want to live.

Have you visited my website?


  1. From memory, it was a founding Professor of Medicine at Johns Hopkins University, Sir William Osler, who linked suicide and TN in the public imagination. He wrote about this back in 1912 - before the development of any helpful surgery for the condition, and of course before any of the now familiar anticonvulsant medicines had been developed.
    He was very interested in the history of medicine, and he was talking about the absolute lack of treatment in the 18th and 19th century.
    He was very forward-thinking in many of his ideas, and would often remind students to "listen to your patient, (s)he is telling you the diagnosis". (But, probably a bit too forward-thinking when he explained how old people be "peacefully extinguished" with chloroform a few years after their retirement, as they were no longer as productive as they had been. Ideally, this would be done when they were sixty.)
    In 1912, Sir William Osler noted that "In some instances the neuralgia reaches such a frightful intensity that it renders the patient's life insupportable. In former years suicide was not an uncommon consequence."
    But this was written a hundred years ago, and was looking backwards, not forwards.

  2. This really HURTS!!! MY attacks from Trigeminal Neurologia are hurting real bad today, just looking for support group

  3. Excellent article, Kathy. TN is NOT the suicidal disease. It's painful yes, but there is help out there. Statements such as this have just frightened people. Thanks again!

  4. I too was diag of TN in 2007. It affects left side of my face. Cold air, fans, wind flare mine up. Mine is more of the burning, searing constant pain under my cheekbone, goes up the side of my nose and top of upper lip, right now is flared due to having air conditioning on. I have had MVD surgery in 2011 which did work for a while, now on Gabapentin 900mg a day, I think my doctor needs to increase. I also get bad migraines, but TN pain is so much worse.

    1. Hi Debora, thanks for getting in touch. I am sorry you have so much pain. Yes, air conditioning and breezes can trigger the neuralgia. If there is anything I can do for you, please let me know. God bless you.