How can I make them understand?

How can I get my spouse, coworker, boss, friends, or family to understand? This is one of the most common questions I hear regarding the nature of trigeminal and glossopharyngeal nerualgias. The answer, regardless of who asks it, is the same. You cannot make someone who has not contended with this type of pain to "get it."

You can, however, ask them to accept the reality of your situation. Before we discuss that, let us talk about why we should concentrate on their acceptance rather than their understanding.

We ask the people around us to have empathy for us, to put themselves in our shoes. I ask you to do the same. Remember when you had never heard of trigeminal or glossopharyngeal neuralgia? Such pain would have sounded incredulous, and indeed it is.

In all my conversations about these cranial nerve disorders (before, during, and after my working at TNA, the Facial Pain Association) I have never told anyone about my first exposure to facial pain. I was young, in my 20's. I was eating dinner at a friend's house, hanging out in the kitchen with another guest. She explained that she had a nerve in her face that caused her horrible pain when she...

I have to use an ellipsis in the previous sentence because I cannot remember what she said after that. Although she spoke with a calm demeanor, her message terrified me. I left the kitchen, telling myself that she must be crazy. I hoped she was. To believe she might be sane meant that this horrible thing could happen to anyone, even me. I refused to entertain the possibility. But now I ask myself how many people walked away from that perfectly nice woman, leaving her alone as I did.

When we ask someone to accept our situation, we are asking them to do something easier than to understand. We apply the formula from the movie What about Bob? Baby steps, baby steps. Let us discuss some of them.

Present the individual with a concise explanation of trigeminal or glossopharygeal neuralgia, depending on which disorder(s) you have. For people who have atypical or neuropathic facial pain, find the most definitive information you can. Be selective, using information that describes your symptoms. Do not give more than a full page of text to read. Allow them time to digest it. Then expose them to factual presentations of personal experience.

Find an audiovisual presentation. These are on YouTube and other sites, such as The Facial Pain Association's. Attend a webinar or support group meeting together. If possible, go to a conference hosted by TNA, the Facial Pain Association or a similar group.

Some people will refuse to accept the plight of an individual who has facial pain, even if they love the person who has the disorder. Hardheartedness is not something we can change in another person.

Counseling, if he or she will go, can open the door for acceptance. If you pursue this route, go alone first to ensure you have an empathic counselor who will research and accept your disability. Make sure he or she knows how to pronounce it. It can provide some validity for you.

Everyone who has facial pain needs an advocate. It does not have to be someone who understands, but it must be someone who accepts.

I would like to hear from you. Please tell us what helped someone accept or understand your pain.

God bless you.

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Trigeminal neuralgia and the National Day of Prayer

When I was suffering with the "lightening strikes" of trigeminal neuralgia, I did a lot of praying as well as some bargaining with God. One of the things I promised Him was that I would be grateful forever if He would take the pain.

In my opinion, bargaining with God is ineffective. But when one is desperate, a variety of tactics are employed. I'm glad the Lord saw my faith and desperation and looked beyond my attempt to make a deal with Him.

Almost every day, I go to a private prayer list and pray for individuals who have facial pain and other types of nerve pain. I call each name aloud. With today being the National Day of Prayer, I wanted to focus the day praying for everyone who has face pain, including people whose names I don't know, whose voices I've never heard, and whose emails I have not read.

My day began with prayer, and I felt uplifted and grateful. Then as the day continued, other things commanded my attention. I've had a week full of medical appointments and trips to the pharmacy. A drugstore in my community closed, and the one I use is bursting with business. The good news, however, is that I have a "no co-pay" card for a prescription.

When the cashier told me that "no co-pay" means that I'm responsible for more than $250.00, I became anxious. She continued to check my options, and I began to pray. But this time I prayed for me. I asked the Lord to remind me how small the current issue really is compared to trigeminal or glossopharyngeal neuralgia. With my car in park and a foot on the brake, I closed my eyes and recalled the pain. I remembered that I am blessed. And if you are someone who is suffering, I remembered you.

Hope is the first step to recovery. If your hope is gone and you would like me to call your name when I pray, please contact me via email.

I am thankful to live in a country that allows us to pray. 

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Pain, prayers, and peace

I'll be signing off for the Holidays, at least until after Christmas. Before I go, I'd like to say Merry Christmas to my friends, the ones I've met, and the ones I haven't.

It isn't easy to have trigeminal or glossopharyngeal neuralgia and have peace. The pain threatens to steal our lives. Sometimes it feels as though our sanity will be the next thing to go. When I was suffering, I found peace in Jesus Christ. His peace was present in the midst of the most terrible pain. I prayed, finding solace in Him. I grew to understand I wasn't alone in my suffering.

If you are experiencing facial pain, I'd like to encourage you to tap into your faith. Take a chance. Dare to believe that Jesus is real and that He cares about you. Take s step of faith and trust that your health will improve.

I can't think of anyone who needs the thrill of hope more than someone who has trigeminal or glossopharyngeal neuralgia. My prayer is that you will be full of peace this Christmas.

 O Holy Night

O holy night, the stars are brightly shining;
It is the night of the dear Savior's birth!
Long lay the world in sin and error pining,
Till He appeared and the soul felt its worth.
A thrill of hope, the weary soul rejoices,
For yonder breaks a new and glorious morn.

Fall on your knees, O hear the angel voices.

O night divine, O night when Christ was born.

O night, O holy night, O night divine!

 

 

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In the midst of the storm

We had a long, cold winter and so many people who have trigeminal neuralgia and neuropathic facial pain really suffered. Now that warmer weather allows these individuals to enjoy lower pain levels, barometric pressure threatens to deliver more discomfort.

When barometric pressure shifts suddenly, many people notice that their pain rapidly increases. No, it is not in your mind. No, it’s not fair. One summer Florida experienced four hurricanes. Three of them came through my area, and the symptoms of trigeminal neuralgia raged.

You may want to have a plan of action. Don’t hesitate to report the summer pain to your health care provider. It may be that medication can be adjusted or additional treatments can be given. Keep an eye on the weather report to help you know what to expect.

It’s not easy to remain calm in the midst of a storm, especially when pain is at its center. This is where the challenge lies.

So long ago when my pain got bad, I was unable to talk. I’d call my mother, and press three keys on the phone pad. She knew my signal, and she would come over to say a prayer with me and to sit with me.

It may help you to prepare for pain caused by weather fronts. Store your storm stash together:

Favorite Bible verses

Encouraging Quotes

Medication

Phone numbers of people who will offer you support

If you wear glasses, a light weight pair

Like a green olive tree

But I am like a green olive tree in the house of God: I trust in the mercy of God for ever and ever. Psalm 52:8.

To understand why this verse might be significant for a person who experiences so much pain, it is necessary to know the characteristics of a green olive tree. This robust tree can live for centuries, even in dry, barren, and rocky places. To harvest the olives in Biblical times, the green olive tree would be beaten with sticks to knock the fruit from its branches. In spite of that, the tree would continue to produce new fruit. The strength of this tree comes from its roots, which go deep into the earth. The green olive tree’s roots are so deep and so strong that they survive even if the trunk is burned or cut down. The roots will send up new shoots, and they will bear fruit. The green olive tree knows how to survive and thrive even in the harshest of environments.

If you live with trigeminal neuralgia or other types of face pain, you have experienced a hostile environment. Years ago I felt that my body had become my own prison. By God’s grace, I was released from the pain. I went back to a “normal life,” and was teaching a Bible study for the ladies’ group at my church. In the course of the study, we discussed Psalm 52:8 and another verse about an olive tree, Deuteronomy 24:20. When thou beatest thine olive tree, thou shalt not go over the boughs again: it shall be for the stranger, for the fatherless, and for the widow.

I cautioned the ladies to preserve some of the fruit that they bear for people that God will send to them. It’s so easy to get depleted, to have every piece of fruit (or every bit of energy) taken from us. Today’s demands are heavy: careers, children, aging parents, ministries, volunteer activities, and church functions. The list is endless, and our heavy obligations can leave us with no time or energy to help someone that the Lord puts in our path. At the time I wasn’t working, but a few months later I returned to the work force.

Last March, I went on a business trip to meet with a group of people who were experiencing facial pain. A couple of hours before I departed, I was gripped with terrible pain. It radiated from my jaws and into my face. The pain left during the last leg of the flight, but when I arrived at my destination I was exhausted. I enjoyed the visit, and it was soon time to return home to Florida. I was on a tight schedule, with an appointment the day after my return.

I learned that my schedule was going to be much tighter than I expected. The weather caused flights to Florida to be cancelled for the day. I left the airport and went to a nearby hotel. The first thing I did when I walked into my room was take the Gideon’s Bible from the desk. I don’t ordinarily open the Bible and read it where it falls, but on this day I was desperate. I wanted a word to calm my frustration. I looked at the open page and began to read Deuteronomy 24:20. Tears fell down my cheeks as I realized that I had ceased to bear fruit. I had nothing left to give to strangers, to the fatherless, or to widows. In fact, I had nothing to give to my family. I was always in need of their strength and support.

I surveyed my life that day and realized that my roots had not found the nourishment they so desperately needed. In Gainesville I had not found a church that I could call “home.” I was living away from my family and saw my husband only on the weekends. I missed him terribly. My noisy neighbors got home from work every morning at 3:00 a.m., and sleeping through the night was difficult. Worst of all, my own pain continued to increase.

Had I forgotten about God? No. I still read my Bible each morning. I was sad because life had become so difficult. I wondered why I was having so much pain in my jaws and neck, and I longed for home. I faced this fact: circumstances had beaten me down.

That day in the airport hotel, I asked God to restore me. Because I had experienced trigeminal neuralgia, I knew that that the current pain was very different. It wasn’t long before I began to notice some things that pointed to the root of my facial pain. For example, my teeth, which had always been straight, had become crowded and crooked.

In the diagnostic process, the facial pain and jaw dysfunction grew worse. I could not continue working, but I had answers about the root of the pain. Having a diagnosis gave me some relief, but it did not make the pain stop. It was clearly caused by my jaws, which were often locking shut. I resigned from my job and stayed home. Several months went by before I began to feel better. My body rebelled if I moved around a lot, so I stayed still. Very still.

Sometimes the Lord wants us to be still, to wait for Him. Sometimes we have no choice. It was while I stayed still that I could really focus on Jesus. My roots began to receive the nourishment they needed. Jesus is my source of strength, the One who helps me grow.

Although I was overwhelmed and beaten, my roots had not died. Your roots are still alive. You can also experience growth and restoration. We are like green olive trees, and the Lord wants us to bear fruit. We will be able to help the widow, the fatherless, and the stranger once again… with God’s help.

Have you read With Great Mercy?   A follow-up post to the green olive tree is available.

Loss Part 3: Identity

Do you ever feel as though you are sitting on the sidelines of your own life? It's not unusual for people who experience pain and disability to feel as though they have somehow lost themselves. I remember not wanting to believe that I had changed, but I had. Many of my strengths had turned into weaknesses. Some of my abilities had become disabilities. I was in the middle of my life and didn't know where to go or what to do next. All I knew was that I didn't want to stop but had to. I loved teaching drama, but I had to let it go.

Quick wit, the ability to concentrate, and physical prowess can seem to evaporate if the pain comes to stay. Medications to help facial pain can cloud our concentration, obscure our ability to respond quickly, and cause physical issues such as balance and sluggishness. Career and volunteer activities may become a drain instead of a challenge.

If we have trigeminal neuralgia, neuropathic, or orofacial face pain, we may begin to experience social isolation. This can be spurred by the environmental barriers that are unique to people with face pain: breezes that cause electrocution-type pains and noise or vibration that causes the pain to strike. Isolation and loneliness can also be caused self-consciousness. Some individuals gain weight with face pain, especially because of some of the medications' side-effects. Others may be unable to brush their teeth or receive dental care on a regular basis.

Things that seemed so intrinsic - like a beautiful smile- now seem to escape us, things like a career or a desire to grow a family. The losses caused by pain can be distressing, but there is hope. Hold onto it. Don't let go.

Finding the best treatment takes a while because of the idiopathic nature of the pain. What works for one person doesn't work for another. Medications that seem to turn us into "zombies" also require a period of adjustment. Ten years ago, when I started taking an anti-seizure med, the trigeminal neuralgia pain left. I slept like crazy for three months. Then the feeling of sleepiness left, and the pain stayed away. (Can I tell everyone how disappointed I was when I developed an allergy to this medication?)Another thing that takes time is prayer. We normally don't get answers overnight. A period of waiting is almost always involved. Hold onto hope. Hold onto your faith. Continue to wait.

Waiting is one of the most difficult things we can do. Being in limbo places even more pressure on an individual who has experienced so much loss. It is important to remember this: we have changed but we have not lost ourselves. We have not become someone else.


The challenge we face is learning how to make the best of our lives after we have experienced losses associated with facial pain. There are many ways to do that. One way is to address career concerns. Every state in the U.S. has a vocational rehabilitation program that receives federal funds. It's there to provide education or training for people who have disabilities. People with face pain qualify. Because trigeminal and neuropathic facial pain are rare, you might want to prepare information for the rehabilitation counselor who will interview you. Make a list of things that cause you pain, such as talking, sitting in air conditioning, or being in a noisy environment. If you are having issues caused by medication, list those also. If you are employed and want to stay with your company, the Job Accommodation Network (JAN) can help you and your employer make arrangements to help you stay where you are. JAN is part of the US Department of Labor. They have a website and a toll-free number.

One important thing to focus on is what you can do, not what you cannot do. I've been in situations that were overwhelming. It's hard to recognize the need to make a change. Letting go doesn't mean losing. It can mean that we are going to find a new and better way.

Call me crazy, but I think the world would be a better place if everyone were to experience trigeminal neuralgia for just one day. We'd live on a more compassionate environment. We'd have more empathy for others. People with face pain have learned how precious life is. It's something we can teach others. Even in the midst of our pain, we can help make the world a better place.

I want to thank the Lord for answering so many of my prayers. When I lose one thing, He always gives me something better. It takes me a long time to recognize the blessing, but it is always there.

Loss Part 2: Initmacy

I can’t think of anything that affects intimacy as profoundly as face pain, especially when it affects the mouth. If someone can't practice good oral hygiene, romance or being close to someone may be one of the first things that go out the window.

So many times I have covered my mouth when someone has entered my home to speak with me. I try to be prepared, but surprise visits can make the Boy Scout's guide impractical. To get myself ready for planned encounters with others, I’ve used plenty of Biotene mouth wash. It’s made without alcohol, and it never bothered me to use it. Recently I tried Crest's alcohol-free mouthwash, and I was impressed. It costs much less than Biotene. The pain, though, was not nearly as acute when I tried the Listerine, so it’s not actually comparing oranges to oranges. There’s nothing, though, that compares to the old-fashioned practice of tooth-brushing and flossing. I have had months on end that my mouth never ever felt clean. I thank God that I am able once again to brush my teeth and floss.

The pain caused by jaw problems, trigeminal neuralgia, and neuropathic facial pain can stop physical intimacy dead in its tracks. In my opinion, there is nothing more romantic than a kiss from my husband.

How do you kiss someone who has trigeminal neuralgia? Very gently. If the pain is on one side of the face, approach from the other side. Talk about it if you are uneasy. If the person you loved has winced when you attempted a kiss, don’t take it personally. Your love interest may have looked as though he or she is a deer caught in the headlights. The thought of kissing can be downright scary for a person with facial pain. With conversation and tenderness, a way to share yourself with someone else is possible.

Nighttime caresses can also be challenging. I remember using a separate sheet and blanket. When my husband tugged on a sheet that we shared, it would sometimes brush up against my face. That’s all it took, brushing lightly against my face to cause the electrocution-type pains. The sensitivity to the pain and its intensity is almost impossible for others to understand, and that is a threat to intimacy of any kind: the loss of trust.

If someone doesn’t accept the plight of a person with facial pain, trust can diminish or even dissolve very quickly. I’ve never talked at length to anyone with trigeminal neuralgia who has not experienced fear of the pain. It’s important to talk about the fear and to be someone who can be trusted.

Sometimes people with trigeminal neuralgia have eye pain. It’s terrible. I remember feeling as though my eye would pop out. I didn’t want anyone or anything near my face. I didn’t want a hug, but I wanted to be close. My husband’s arm around my waist meant everything. A friend who put her hand on my back or shoulder instead of hugging me was cherished.

What do you do if there have been misunderstandings about trying to get close? One way to rebuild trust and intimacy is to practice touching with your friend, family member, or spouse. Another way is to communicate in writing if the person has difficulty talking. Send an email, write a note, use text messaging. No one wants to feel alone. Don’t let the pain win. Be close in spite of it.

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