Tuesday, June 9, 2009

Trigeminal Neuralgia, a crisis

The pain of trigeminal neuralgia and other types of neuropathic pain creates a physical crisis. Our bodies and minds don't know what to do with pain so intense that it seems to separate us from reality while it occurs. Although we are strong and have successfully coped with other challenging situations, violent face pain leaves us with few clues about how we can manage it.

Regardless of all the years that we have been in the driver's seat of our own lives, the random pains take the wheel. They drive us to look for relief from the pain, the cause of the pain, and for understanding. Now we are in the back seat of a taxi with a driver who doesn't speak our language and who cannot be trusted.

In this journey, we pick up some other passengers: medication and treatment (as well as their possible side-effects); financial strain (treatment costs and loss of wages); employability issues (What? you can't take phone calls?); and the ghosts of friends and family (somehow they seem to fade away). We aren't sure where we are headed, and we are desperate to pick up a passenger who knows the directions.

At the very core of our journey is heartbreak. When the people we love don't understand the rapid and dynamic changes that have erupted in our faces and our lives, we feel so alone. Skeptical expressions cross the faces of our co-workers, our employers as well as our clients, students, and our patrons. Our distress and inability to function as before is often attributed to having issues. What people don't understand is that the pain and dysfunction cause the issues.

Have you ever been told that you are just making excuses to get out of something you don't want to do? Has someone expected an overnight miracle to take place in your life? Do people think you should have a tooth pulled or have another root canal? They cannot relate to your experience. And lets face it. How could we have imagined this terror if we had not experienced it ourselves.

This is the time to remember that you know more about your situation than the frenzied taxi driver and the passengers in the cab. It's not time to jump across the seat to grab the wheel. But it is still your life, so you can place demands on the villain that has commandeered your vehicle. You are going to invite some people into the taxi with you, and you may decide to drop some of the ones who are occupying the seat next to you.

Some useful passengers to pick up are books. Don't depend on the Internet. Buy some books about face pain and trigeminal neuralgia. You can take them anywhere, read selected portions again and again. You can share them with others.

Another useful passenger is a support group or a telephone support contact. Several organizations have support groups, including but not limited to TNA, the Facial Pain Association. Other groups, such as the American Chronic Pain Association, may have a group nearby. Rest Ministries, a Christian organization, also has support groups for people who have pain. Although there are many good organizations, there is no substitute for talking with or meeting someone who has experienced facial pain or trigeminal neuralgia. This person is key to helping you reach your desired destination.

Along the way, you may want to pick up someone who looks totally boring. It's the American with Disabilities Act. You'll find that he might be boring, but he's powerful. He'll help you get through some issues on the job. If you need accommodations on the job, he knows how to help you attain them. He's on your side, and you can trust him with the driving until you are ready to take the wheel.

As the new passengers reassure you, hope emerges. Don't let go of it, even during your toughest moments. Abandon the taxi and climb into your own car. Sit in front, but select drivers from the new passengers. You may want to look for a counselor who specializes in chronic pain issues. Take a look at the supportive people in your family and ask them to ride along with you. Don't worry about the size of your vehicle. The bigger it is, the more fuel efficient it is. Your passengers are providing energy, not taking it.

The most challenging passengers to find may be your health care providers. If you aren't satisfied with your first physician, go to another one. Sometimes it takes visiting several before you can find a good fit. It's important to remember that your health care providers are passengers. Don't let them drive or make decisions for you. It's your body. You may also want to consult with your other passengers, those books, support groups, and family members before you decide to have a procedure.

It's important to remember that your mind, body, and spirit are connected. Don't forget your spirit. Feed them with faith in God and prayer. They'll help you know when you are ready to drive again. And you will be back in the driver's seat. You will.

If you would like to contact me, you'll see my website listed, and you can send me an email from there. I'll be happy to ride along with you on your journey. I've been on one similar to yours.

Now I'm looking for some passengers who know about a unique problem I have with my TMJ area. I have some wonderful passengers in my car, but my journey can be enriched by adding more.

Kathy (Gilbert) Taylor


  1. Hi Kathy, I'm praying for you. TN has invaded my life and has caused me unimaginable (for most) pain. I'm only 27, which is a young age for this disease to present, from what I'm told. I thank God for Lyrica, which gives me relief in that it brings my pain level down from an 11 to a 1 on a scale of 1 to 10, even if I'm taking twice the recommended maximum dosage. Most people, I agree, cannot relate to having a disease that is as of yet uncurable and that causes such intense and constant pain. Thank you for writing this blog and thank you for understanding my pain. Good luck.

  2. HI Surprisingly, what interesting food you have posted on your blog. Sorry to learn you are having pain. I have had TN pain (the worst of the worst) but now having facial pain as a result of a jaw problem.

    I understand the pain. I'll write more. Take care.