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?

Affordable winter head and face protection

My mom called me this evening (and if you have read With Great Mercy, you know how wonderful she is) to let me know that she had seen some clothing on the QVC channel that might be good for people who have trigeminal neuralgia. I would like to share this information with you. The scarf above is item number A82783.

You might like this one better. The differences are subtle, and you will get more details on the QVC site. The item below is number A82783.

For other options, you may want to take a look at a previous post, Resources: clothing to shield your face. For more ideas about preparing for winter, try this page: Cold weather. How to minimize its impact.

Stay well.

No chew recipe: black beans, diced tomatoes, and whole grain brown rice

This recipe is full of fiber and can be prepared with ingredients that can be stocked in your shelves and ready to be used when the pain spikes. It's quick, easy, and nutritious. See information below about the spices this recipe uses.

10 ounce can RoTel diced tomatoes with lime juice and cilantro
15 ounce can Progresso black beans

a pinch (less than 1/8 teaspoon) xanthum gum (optional)
2 tablespoon diced fresh onion or 1 teaspoon dried green onion
1 tablespoon ground flax seed

1 teaspoon brown cane sugar
1/2 teaspoon minced garlic

1/4 teaspoon cumin
1/4 teaspoon sea salt

Success whole grain brown rice boil-in-bag
Optional dried cilantro, finely chopped very ripe fresh tomato or salsa, and non-fat plain Greek yogurt for garnish

If you like your black beans to be extra thick, you may want to use the optional xanthum gum. Use it first, putting the can of tomatoes into a pot, adding the xanthum gum, stirring until lumps are gone. Because black beans are tough and chewy, putting them in a food processor or breaking them down with a hand blender is necessary if you want to take the "chewy" out.

If you are using fresh onion, you'll want to break them down with the black beans. After they have been softened in this manner, add them to the pot. If you are using dried green onions, add then to the mixture along with ground flax seed, sugar, garlic, cumin, and sea salt. I added a little (1/2 teaspoon) dried cilantro because I like this dish to be really spicy. Bring to a low boil and then cover and reduce to low  heat. Stir often. After the mixture has simmered for 15 minutes, turn off the heat and and keep it covered.

While the black beans are cooking, put whole grain brown rice boil-in-bag in another pot and cook according to the directions on the package. If you want your rice to be softer, cook 2-5 minutes longer. Any whole grain brown rice will work, but the boil-in-bags make cooking simpler. When it's cooked and drained, place some brown rice into a bowl and top with the black bean and tomato mixture.

Makes four servings. I've garnished mine with lowfat plain Greek yogurt (a healthier alternative to the  traditional sour cream), a pinch of dried cilantro, and some fresh diced tomatoes. It's a little spicy. Enjoy!

According to www.nutrition-and-you.com, cilantro contains anti-oxidants, vitamins, and it may help with digestive and cholesterol issues.  Additionally,  www.organicfacts.net states that cumin's health benefits include aiding in digestion, piles, insomnia, respiratory disorders, asthma, bronchitis, common cold, lactation, anemia, skin disorders, boils, immunity, and cancer. Ground flax seed, according to www.healthcastle.com is beneficial in lowering cholesterol, triglycerides, and blood pressure.

You can find other no-chew recipes on my blog by using the Google search tool at the top of this page. I am hoping you will feel better soon. Take good care and may God bless you.

Have you visited my website? With Great Mercy ?