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?

Conversations with Job: suffering, accusations, and integrity

This past week, I've been reading the book of Job, a Biblical account of a good man who lost everything, including his health. Job's life turns upside down overnight, a riches to rags story.

When I consider Job's tremendous suffering, I think about people who are dealing with trigeminal neuralgia. Many have told me they relate to Job's situation because the pain from TN is so tremendous. I remember feeling the same way, years ago.

Facial pain can steal the things we cherish. People who are at the top of their game turn to focus on finding relief: an accurate diagnosis, a medication, or a procedure to erase pain.

In spite of the provisions the government has made for people with disabilities, individuals who have trigeminal neuralgia and other types of face pain sometimes lose their jobs. It's couched as "restructuring," or blamed on "this economy." After all, corporate America must abide by the Americans With Disabilities Act.

Friends and family sometimes expect us to "get over it" and get on with our lives. When we can't, many of them retreat. Some of Job's friends, if they can be called that, accused him. They told him that his misfortune was caused by his own actions.  Zophar tells him to leave his sins behind and to confess them to God. In other words, get over it and get well, Job.

When I got sick with trigeminal neuralgia, some of my friends looked for a spiritual cause. Was I dabbling in something I shouldn't? Was my husband in business with someone immoral? Did we live in a house with a violent history? The possibilities seemed endless. Maybe someone has intimated that you are somehow responsible for your pain.

Handling accusations of this nature is tricky. We don't want to be deserted or alone. Yet critical rhetoric can make the anguish of pain even more intense. How can we respond? With his body practically decaying while he was alive, Job blamed no one, not himself or God.

Job's buddies missed his money, his prestige. But Job's integrity remained intact. He stated that we can't take it with us and refused to dwell on his material loss. But his health was another matter. Physical suffering cannot be denied. It's the ultimate thief. And it was the most difficult loss for Job.

Later Job's health and wealth were restored. You may have suffered so long that you no longer believe you will have a life again. Have faith that you will get better. If you need counseling to help you regain hope, find a practitioner who is experienced in counseling people with chronic pain.

Without hope, it's difficult for people to overcome pain. Don't blame yourself for disability. It's not your fault.

For more information about The Americans with Disabilities Act and facial pain, please see "disability and loss" on my website.

Cold weather and trigeminal neuralgia

As cold weather blasts through many parts of the country, my friends with trigeminal neuralgia are having episodes of facial pain. My prayers are with everyone who is currently having this experience.

I remember last year at this time. I was hearing from so many people whose pain had been triggered by the cold weather. In fact, three months of cold weather had left many people both exasperated and exhausted. Because I know first-hand the excruciating pain of trigeminal neuralgia and glossopharyngeal neuralgia, I have great empathy for anyone who is suffering with these disabilities.

Last year I was working for TNA, The Facial Pain Association when the cold weather blanketed the country. To communicate with so many people who had facial pain was very humbling. If you talked to me or emailed me during that time, please know that your story – your plight – touched me. I may not know your name, your face, or even your voice, but I know your struggle.

The severity of this pain can transcend the physical body and permeate the human spirit. It can cause a person to lose hope, to feel alone, and to wonder how he or she can keep going.

Last year I was experiencing excruciating pain of my own. I had nerve pain in my face, but it was caused by my jaws. What triggered it the most was talking, and talking was part of my job. I don’t talk so much these days, and I am experiencing a season of quietness. The quiet is like a good night, soft and comforting. It leaves me feeling rested and refreshed.

Don’t neglect your spirit while you weather the storm. My prayer is that everyone with facial pain will find relief from the pain and will be rejuvenated. I found strength when I searched the Bible for a way to cope with the pain.

To those of you who are reading With Great Mercy, I hope you will be blessed.