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.

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When dying seems preferable to living

Those of us who have experienced the torment of trigeminal neuralgia know there are worse things than dying. Intense and unrelenting suffering can cause a person to lose hope in living, but we must hold onto it.

When I was ill with trigeminal neuralgia, I longed for death. My own suffering caused me to think about the violent death of Jesus and how His pain surpassed mine. If anyone understood that no one really understood, it was He. By "no one understanding," I refer to how our friends and family may think that we can overcome the pain if we want to, if we try, if we think positively. All those things can help, but they don't stop the pain. The stings, strikes, and electrocution-type pains simply wear people down.

Let's shift our focus back to Jesus and think about someone whom He loved, Lazarus. Lazarus was dead, in a tomb, and stinking when Jesus showed up. And we see in John 11, that Martha (brother of the deceased) was not happy with Jesus because He had not been around to heal His friend. But Jesus told her, “I am the resurrection and the life. A moment later, Jesus called for Lazarus, and he came out of the tomb: alive again.


After suffering so long, I remember changing my mind about wanting to die even when pain had spiraled out of control. My mother prayed for me and comforted me and through prayer, I got close enough to Jesus to "hear" Him calling my name. Like never before, I believed in His resurrection power. I began to ask Him to help me live.


Jesus gave me my life back. That was six and a half years ago. I've endured pain from another cranial nerve since then, and I have had some terrible neuropathic facial pain because of a jaw procedure that has gone awry. But Jesus has helped me through it all, helped me reclaim my life each time.


I am not ashamed of the gospel of Jesus Christ. I owe my life, my health, and every good thing that is within me to Him.


Happy Easter. 


Have you visited my website?
 

Care for me, feed me, visit me

I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me. Matthew 25:36

I’ll never be able to thank God enough for the way my mother took care of me when I had trigeminal neuralgia. She wouldn’t let go of me; my mother was determined to defeat the pain. Her determination and faith spread to me, and that is how I got well. Although the process wasn’t simple, the premise is: Lord, I believe You will make this pain go away. How can people believe such a thing when it feels as though the face is being electrocuted over and over and over?

As I fought the good fight of faith, I remember feeling as though my body had imprisoned me. I wanted to escape it, but I couldn’t. I found solace in a song that Dottie Rambo wrote, “The Holy Hills.”

This house of clay is but a prison
Bars of bone hold my soul.

How desperately I wanted to escape the prison, but I couldn’t. Captured by pain, I sought hope. If nothing else, I knew that the present sorrow could last only a lifetime and not for eternity. That’s how Dottie’s song encouraged me:

But the doors of clay are gonna burst wide open
When the angel sets my spirit free.
I'll take my flight like a mighty eagle…

I longed for a day of freedom, either by way of healing or through death. The thought of my death didn’t depress me, and it still doesn’t. It’s simply a longing to be in a better place.

The pain is gone, but I can’t forget about others who are suffering. I can’t forget, either, about people who are in prison. I’m involved with Prison Fellowship Ministries, and what a blessing it’s been. I’ve been teaching Set Free by Jan Coates to a group of women who are incarcerated. It’s about overcoming childhood abuse, and the curriculum is wonderful.

When I first met the group of women, I told them that I had never been arrested or in custody but I know what it’s like to be imprisoned by pain. They could relate to that, and I can relate to them. We all need someone to minister to us, whether it’s a need for food, clothing or shelter; a need to be attended; or a need to be visited when we’ve been punished. Think of someone who helped you along the way, someone you didn’t know well. For all the people who helped me – and there have been many – thank you. Because you helped me, I can visit people who are in prison.