How you can help, even while you are suffering

Do you believe that your suffering might help someone else? I did, back when I was really ill with trigeminal neuralgia, I was convinced that my experience with pain would help others. I was right about that, but I was wrong to think I had to get well to be of assistance.
Back then, Facebook and Twitter did not exist. The Trigeminal Neuralgia Association had a skeleton website with very few features. Most of the time, I couldn’t talk, so there was no way I could call. I had no idea that one day I would become the director of patient services for this organization, which is now known as TNA, the Facial Pain Association.
Because of the Internet, living with pain has changed. We have groups on social media where we can post our thoughts to be read by the masses. Sometimes we meet someone with whom we click, forming bonds with a friend we have never met. These bonds become exceptionally important, and without knowing it, we might be someone’s temporary lifeline. Here are some things we can do to encourage others, even when we are still in pain.
Check in often with your friends. A direct message or a tag helps, simply asking how the individual is. It might be something like my pain is a level five today. How is yours?
Write about hope. You don’t need to write something original. Quotations and scriptures are quite helpful. The Psalms have an abundance of helpful verses. Philosophers from around the world have offered their wisdom. It’s okay to do an Internet search for a quotation about hope or healing.
Post about remedies that help you. We know about how differently we all respond to treatments, how what works for one doesn’t work for another person. So, if something helps you, please share it with others.
Provide updates when you feel better. If you have reached out on a really bad day, put a note on the original post when you are doing better. It lets a new reader know that you got through that episode of pain.
Be kind to everyone. Pain, medication, and disability can make each one of us sensitive. Tread lightly when disagreeing.
Let someone know you are going to say a prayer for him or her. It doesn’t have to sound fancy. Just ask the good Lord to help that individual.
Send something. If you have the person’s email address, a card with good wishes is helpful. Complimentary copies of With Great Mercy are available. Contact Kathy if you would like her to mail one.

Until mid-February, some time had passed since I received an email from someone who has read With Great Mercy, someone I don’t know. As readers, we have no way of knowing what is happening in the lives of writers. It is always good to know that we have helped, inspired, or entertained someone, depending on the nature of our subject. Although I have been writing fiction for a while, I still blog about cranial nerve disorders now and then. I stopped suddenly when I realized someone was stealing posts from my blog and refused to stop. My new website has gained some internet attention, so I will post new material on occasion.

This week, I had a grueling dental situation. Anyone who has ever had trigeminal neuralgia, glossopharyngeal neuralgia, geniculate neuralgia, or a horrible case of temporomandibular joint dysfunction, knows that almost anything to do with teeth is frightening. Monday morning a crown fell out of my mouth. It looked weird, and the reason I have this crown is part of my long and harrowing story experience with cranial nerve disorders and dental trauma. Because of my history, I continued to go back to Florida for dental work, after moving to Texas three years ago. I haven’t had cranial nerve pain in years, but I still have an awareness that one must see an excellent dentist to maintain healthy cranial nerves. When Covid-19 hit, the luxury of going to my dentist in Florida no longer existed. My attempt to go to a highly recommended dentist in Cedar Park turned out to be unsuccessful and extremely stressful. Mom stepped in, from Florida, locating a dentist in Austin, Texas, who treat people who have had dental trauma. I took the leap of faith, and I now see Dr. Lina Clendennen in Austin. She is gentle, informed, and patient. She listens. So does the entire staff at Dr. B.J. Meyer’s practice. From Monday through Thursday, I was a bundle of nerves. I prayed, rested, cooked, read, and tried to stay busy, but the uneasiness never left me. Yesterday I had some dental repair work and received a new crown. Although the appointment was lengthy, I left without soreness and had a good day. The day after, which can be tricky, and all is well. I am grateful for Dr. Clendennen’s wonderful ethics, great skills, and patience. We’re all human, presented with new challenges each day. When you read something life-affirming, reach out with an email or a blog comment. You don’t know what the person at the keyboard might be experiencing at that moment. We want to connect with you. That’s why we write. Thanks for every email. Every comment. Every book purchase. If you are out of work and would like a book, please let me know. Email me. Recent Posts Mother’s Day for ladies who have trigeminal neuralgia By faith, we wait Emails, dental work, you, and me Trigeminal neuralgia: How can I get them to understand? Social isolation: we aren’t alone anymore. © Kathy Maresca, 202

We wait. It is a part of life that can be terribly unpleasant. A popular theme, fiction, non-fiction, and plays have wait in their titles. Tom Petty, whose band Mudcrutch played at my high school dances and events, sings about how “The Waiting is the Hardest Part.” He’s right, and I love his song. The scriptures contain plenty of verses about waiting. A favorite comes from Isaiah 40:31. But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. I want to mount up with wings as eagles, but I do not want to wait. I have grown weary. Frustrated. Exasperated. Somewhat confused. This morning I was listening to Jeremy Camp’s song, “Dead Man Walking.” Most of us are familiar with the expression and how it refers to death row, a convicted person walking to his or her appointment with execution. I thought of all the times I begged God to let me die. I wanted to wake in His arms in Heaven, to be relieved of suffering. I had trigeminal neuralgia, and sometimes it was difficult to live through the next minute. I was a dead person living, barely able to walk and not able to talk. Long after the Lord healed me, I began to experience terrible pain from glossopharyngeal neuralgia. I had learned too much to pray for death. From my previous experience, I knew that God would not leave me in such terrible pain. I saw the present suffering as temporary. I had assurance of God’s love, and I was well acquainted with Hebrews Eleven. Now faith is confidence in what we hope for and assurance about what we do not see, states the chapter’s first verse. It happens to be the following verses, however, that fill me with faith. By faith, Noah built an ark and saved his family and himself from the great flood. By faith, Abraham, whose body was as good as dead, had a child with his aging wife, Sarah. Abraham became the father of the world’s largest nations. By faith, Abraham offered his son as a sacrifice, and the Lord honored his obedience by providing an alternative. By faith, Moses’ mother hid him, and he became part of the Pharaoh’s family. By faith, Moses led the Jews of out of Egypt’s bondage. By faith, the wall of Jericho fell, and the Lord’s people gained control of the city. Kingdoms have been conquered and the mouths of lions have been shut by faith. We recover by faith. We win by faith. Sometimes all we can do is thank God for an answer that hasn’t come yet, by faith. Whatever you and I need today might require waiting. Perhaps we will be used and abused in the process. I feel weary, and you might, too. But by faith, we are more than conquerors. By faith, we ask for more strength. By faith, we walk, not to death but to life.

Social Isolation: we aren't alone anymore

I know, I know, I quit blogging because someone is stealing my posts and using them as his or her own. Perhaps this entry will also be stolen. I have come to realize that if people are helped by what I write, then that is the real purpose of my reflections.

More than ten years ago, I began to write about my experience with trigeminal neuralgia and working on behalf of others who have it. I wrote, among other things, about social isolation. At the time, many people were not familiar with that phrase. I received quite a bit of feedback about it, the aloneness that facial pain can cause. People who have trigeminal neuralgia, glossopharyngeal issues, and other types of facial pain are well versed in loss. They often lose their jobs, their spouses, their homes, and their ability to speak clearly.

Now, with the corona virus, social isolation has become a common phrase, a way of living each day. People have lost their jobs and financial security. Some have relatives and close friends who have died.

When I worked at the TNA, the Facial Pain Association, people who were suffering told me how they would not wish their type of pain on their worst enemy. I often told them that perhaps the world be a better place if everyone had experienced this for just one day. They agreed. The intensity of despair that is created by being “electrocuted” throughout the face, the jaw, the eyes, and sometimes the neck-  it causes one to change priorities and realize what really is important. It gives one empathy for others.

My world, in spite of the disability, became a better place because I realized how important love is. Most of all, I became aware of how I had taken things for granted. The woman who taught drama, English, and journalism- she couldn’t talk much of the time. She had to stay home, out of the wind (even a breeze) and away from a ceiling fan. She could not chew, wash her face, or brush her teeth. Social isolation and aloneness were part of each day.

Now that so many individuals in our country face social isolation, people will understand it better, what it is like to experience the aloneness. That doesn’t mean they will understand the intensity of the pain that cranial nerve disorders cause. I have a feeling, though, that this pandemic will give plenty of people more empathy for those who battle facial pain.

We all hope these days will pass. For many people who have trigeminal or glossopharyngeal neuralgia, it will not. I thank God for taking my pain from me, for healing me. Years after the TN pain left, I began to experience glossopharyngeal issues. It’s been almost two years now since my “glossy nerve” has caused me a problem. I’m thankful.

Although I am well, I’m staying home. No matter what, I still believe that love is stronger than pain.

Why I abandoned blogging about facial pain

Although I have not posted a new entry to my blog in several years, I still hear from people who have recently found it. That news is always a double-edged sword. The entries have helped someone. I rejoice in that. One more person is suffering, though, and my heart breaks again.

On more than one occasion, someone has let me know that my entries have been stolen. I go to the site of the blog that has copied my experience verbatim. I contact the thief and receive no response. 

Plagiarism fails students. It ruins careers. But these nameless Internet entities get away with it.

I keep my blog free from advertisements. If I were to open the door to Google ads, a procedure I do not endorse might appear on the pages of my musings. Helping someone is more important than gaining a little bit of cash.

Privacy is another issue. I have kept links to my blog public on Facebook. I want people to be able to share them. Support is gained by sharing the universality of pain, the common denominator of knowing others have felt exactly as we feel. Although anyone can read my blog, it is intended for those who are suffering.

With trigeminal neuralgia awareness day approaching, helping others cope with facial pain is on my mind. I’ll be posting again soon.

One more thing: my last name has changed. I won't mention it here, but many of you know it. I remarried after finding a cherished friend of mine on Facebook.

Hold onto hope. Love is stronger than pain.

Glossopharyngeal neuralgia: symptoms

What does glossopharyngeal neuralgia feel like? I will tell you about my own experience.

My glossopharyngeal nerve sometimes causes stabs and jabs in my jaw. It can cause me to “jerk,” suddenly as though I have put my finger in a light socket. The pain sometimes expands to the tongue, and even a little bit of movement of it can trigger “electrocution” type pains. “Lightning bolts” strike through my ear, down my jaw and tongue, and into my throat. Swallowing is difficult and quite painful. When the pains hit my ear, I get extremely dizzy and can lose my balance.

The first time I experienced glossopharyngeal neuralgia, I thought I had a virus. My ear and throat burned, and they felt worse when I swallowed. I quickly made an appointment with my primary care physician, and he examined me.  The doctor was already aware of my battle with trigeminal neuralgia.

“Your throat and ear look good,” he said. Then he noted that the pain followed the course of my carotid artery. He diagnosed me with carotidynia.

Carotidynia? I wondered what could go wrong next. And as the hours passed, moving my head became more difficult and the pain in my neck became more severe. I lay in bed, thinking I might actually have meningitis. It made sense: an outbreak of it had recently occurred in the school where I taught.

Being confined to bed with an illness is an invitation for the mind to wander into the darkest of places. So many of us have experienced hopelessness. What I tell you next is not to frighten you or to be morbid. I ask you to find humor in it with me. I secretly welcomed meningitis. Maybe it will kill me, I thought. I will go to Heaven and finally be free of this pain.

I didn’t have meningitis, and in a few days I was back at work and feeling well. I told my teacher friends about my short-lived death wish, and we laughed. Later, my neurologist discussed the carotidynia diagnosis with me and explained that I actually had glossopharyngeal neuralgia.

Dwelling on bleak thoughts is easy but destructive. Finding hope is a challenge for people who have cranial nerve disorders. For me, hope is my faith in Jesus Christ. I will discuss the reality of glossopharyngeal neuralgia and my faith in a future entry. The Lord remains faithful, and it is well.  

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?

Interview with a doctor: jaws and trigeminal neuralgia

Margaret Dennis, DMD, practiced general dentistry in Jacksonville, Florida eleven years before enrolling in the University of Kentucky, College of Dentistry Orofacial Pain program. She has an established practice in Jacksonville, where she treats individuals who have neuropathic facial pain, neuralgias, and tempormandibular joint disorders (TMJD). She joins me for a question and answer session. 

Q: Dr. Dennis, many times individuals have told me that  trigeminal neuralgia (TN) was healed by having their jaws "fixed." Would you explain how TMJD and TN are closely related?

A: The trigeminal nerve innervates the jaw and the face and all their structures. Damage in the jaw joint irritates the trigeminal nerve, leading to symptoms of continuous and/or intermittent neuropathic pain.

Q. What exactly is neuropathic pain?

A: Neuropathic pain simply means pain in a nerve. It differs from other types of pain in that it generally is electrical or burning, shooting or stabbing. This type of pain is not dull, not aching. Throbbing is usually muscular in origin, but it sometimes can be attributed to neuropathic pain.

Q: Does that mean that all facial nerve pain is TN?

A: No. There are twelve sets of cranial nerves (one on each side of the face) and several of these can cause facial nerve pain. The glossopharyngeal, geniculate, and facial nerves are, besides the trigeminal nerve, the most likely candidates to cause neuropathic pain.

Q: Is it possible to have facial nerve pain and as a result of TMJD?

A: Yes. The damage inside the temporomandibular (TM) joint can irritate the nerve. It is like a ball and socket with a cartilage disc between the bone of the head (skull) and the lower part of the jaw. This disc can become displaced, usually by trauma, and nerves and blood vessels that lie behind the ball part can be pulled forward on top of the ball part and cause pain. This pain travels over the trigeminal pathway. 

Q: How can one determine if he or she is experiencing which type of pain- TMJD or TN?

A: Two things facilitate the diagnostic process. A unique MRI of the TMJ itself is the gold-standard for diagnosing TMJD. Another way to diagnose the origin of the pain is to perform an ariculotemporal nerve block with local anesthetic. This block numbs the TM joint itself, not the trigeminal nerve. If a person has TN, the pain will continue. If the TM joint is involved, the pain will significantly reduce.

Q: It sounds as though a person can have nerve pain along the trigeminal pathway and still not have trigeminal neuralgia. Is this correct?


A: Yes. When this occurs, we call the syndrome atypical facial pain or neuropathic facial pain. Correct treatment for TMJD can resolve the issue if the dysfunction is treated early enough. If the problem has persisted over a long course, correct treatment can still significantly relieve the pain.

Dr. Dennis will join us for more discussions about facial pain. In the meantime, feel free to ask a question in the comments section of this post.

You can learn more about orofacial pain at her website.
Orofacial Pain Center, Jacksonville

Night terrors and trigeminal neuralgia: a spiritual approach to fear

If one has trigeminal neuralgia, terror can rule the night. I was married when I had pain so horrific that my spouse sometimes awakened me, explaining that he could not sleep because I was screaming. I was amazed by the fact that I could slumber in spite of my physical distress.

I am aware that I am not the only one who has slept through his or her nocturnal pain, but I do not know who shares this experience. When I began my internship for TNA, The Facial Pain Association, I heard that Dr. Joanna M. Zakrzewska would be studying this phenomenon. Although I got an email from her regarding the proposed research topic, I did not hear more about it. I was comforted, however, by knowing I was not the only person with this bizarre story.

Knowing we are not alone in our suffering is part of the validation process. I have taken many calls from individuals who felt they had to explain the pain to me. When they discovered that I had also endured it, I would always hear a sigh of relief. The caller could move onto the questions he or she had for me with assurance that I "got it."

When night falls and people who have TN try to sleep, pain and fear can heighten. One reason is that trigeminal neuralgia, glossopharyngeal neuralgia, and other types of neuropathic facial issues, often get worse when an individual lies down. Also when we are not distracted by the business of the day, pain comes to the forefront of our consciousness. In a future post, I will feature a guest who will address these issues further.

In the night our mind, spirit, and body connection seems to increase. Consider the dreams you have had on occasion, how they revealed your unspoken desires, your deepest fears.

Fear is the enemy of anyone who has trigeminal neuralgia. We are frightened by the electrocution-type pains and wonder how we can endure more of them. After all, anyone who knows that he or she will get struck by lightening in the future has a right to be afraid.

We cannot control the pain, but we can try to reign in the trepidation. How we benefit from the mind, spirit, and body connection? By saying a prayer, we involve all three aspects of our being. Will you read this prayer with me? It is the 23^rd Psalm.

The Lord is my shepherd; I shall not want. He makes me to lie down in green pastures; He leads me beside the still waters. He restores my soul; He leads me in the paths of righteousness For His name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies; You anoint my head with oil; My cup runs over. Surely goodness and mercy shall follow me All the days of my life; And I will dwell in the house of the Lord Forever.

By reading the prayer, we use both mind and body even if we read silently. And if saying the 23^rd Psalm is done in hopes of having a better night, an individual has employed faith. Prayer could a be the vehicle that helps you begin to mend. 

Faith is like a muscle. If we do not use it, it shrinks to nothing. Pump up! Believe you can get better. 

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.

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.

When a road ends

Trigeminal and glossopharyngeal neuralgias can obstruct love. Like most roadblocks, the obstacles present challenges for those trying to navigate around them.

If you are reading this, then you have probably experienced many of them: physical distress upon being kissed; feeling rejected because your partner does not understand the intensity of your pain; and having plain old bad breath because it hurts to brush your teeth. These are just a few effects of some cranial nerve disorders.

My marriage almost fell apart when I was ill. How frightening it was, the thought of losing my health insurance and the stress of enduring a divorce. There were times I wanted to buy an AirStream trailer and hit the road, an illogical notion because most of the time I was not able to drive. How desperately I wanted to escape.

My ex-husband did not leave me, never asked for a divorce. I thank God for sparing me from that situation. But my spouse withdrew, and I never got him back. Meanwhile, I changed and became much different from the woman he had recently married. The onset of trigeminal neuralgia came a mere two and half years after we said “I do.”

One thing I can honestly say is this: I feel certain the marriage would not have survived even if I had remained healthy. That is the most important thing I have to share with you.

Like anyone who experiences a divorce, I noticed that some of my friends disappeared into thin air. I was not surprised. Watching a marriage end, especially when one partner has a history of facial pain, can strike fear in the hearts of others who share the same disability. I understand this, and it is why I feel it may be beneficial to offer an explanation.

Illness does not destroy a marriage, just as roadblocks do not destroy a street. Sickness increases pre-existing marital stress.

On any extended road trip, detours are likely to occur. We may hit potholes as we try to find our way back to a more suitable route. As long as two people stay in the same vehicle, they stay on the same path. Staying together can be accomplished if they refuse to lose sight of each other.

Love is stronger than pain. I still believe it.

All I want for Christmas

At this time of year, it's not uncommon for someone to ask me about an appropriate present for an individual who has trigeminal neuralgia or another form of neuropathic facial pain.

You may want to purchase clothing that will help shield your friend or family member's face from the painful cold. If so, you can find some helpful products here.

I don't often endorse products, but I have discovered one that helps me with pain caused by TMJD and cervical issues.

Like many people who have trigeminal and glossopharyngeal neuralgias, I have struggled with finding a pillow. For quite a while, I had a rattan pillow that helped. You can learn more about it here.  I could not find a replacement. Without it, the agony escalated.  One night when I awakened from the pain, I turned on the television and saw informercial about "MyPillow."

I've bought useless things as a result of watching cleverly marketed products via informercials. Have you? Yet this advertisement spoke to my core, and I decided to give it a try.

The first pillow I ordered was a "red" pillow, and it was actually too "tall" for me. I didn't think this could happen because the lack of support for my cervical area seems to cause the problem. Even with this pillow that didn't "fit" me, I noticed that my jaw would open when I rested my head on it, solving the problem of clenching my teeth at night. I knew I was getting close to a solution.

I called the company, and they sent me a "green" pillow. It was too shallow. I sighed and called the company again, and they moved me to "blue," the size between red and green. What really impressed me is this: they told me not to give up because they will make custom size pillows for an individual. But the blue one works just fine. It gives me the support I need and alleviates the pain that crept in night after night. I've been using it several weeks.

Just as the pillow provides support, so does its inventor. I've been charged for postage and the pillows only once. The company told me that they understand that individuals might not order the right item the first time. They send prepaid return shipping boxes and labels, making it simple for someone in pain to feel better.

A good night's sleep is a wonderful gift.

You can learn more about the MyPillow here. Although I give this item my endorsement, I am not affiliated with the company in any way. I don't receive commission from any sale that results from my recommendation.


Merry Christmas and happy holidays.

PillowGate: Losing and finding a place to lay one's head

For reasons too private to discuss, I left my home a mere two weeks after the delivery of the wonderful Stearns and Foster mattress I blogged about this past summer. I took my rattan pillow with me, and I managed to sleep peacefully at times, have nightmares at other times, continued to function, and to dysfunction as well.

The day of moving into my own apartment approached, and my friends (especially the one who had given me a place to stay) held their breath in anticipation. After all, I had been telling them I would feel so much better when I settled into my own place. But what I didn't know was that the person who had gifted me with the cherished rattan item would suddenly decide she didn't want me to have it anymore.The weekend I moved, I sent it back to her.

PillowGate, dubbed as such by my daughter, ensued.

Because I have helped other people look for a rattan pillow, I knew that finding one is virtually impossible. I got angry. I yelled. I cried. Most of all, I lifted things out of necessity that someone with neck and jaw problems shouldn't do. It's difficult to enlist the help of family and friends and then stand by and watch them work. Plus, I had been working out. Confident that the .0001 inch of muscle added to each bicep would allow me to lift things without injuring myself, I trudged on.

The first night in my new place I couldn't sleep because my cervical and jaw pain level was so high.  Night after night I swapped pillows all night long. Finally one morning at 4:00 I gave up, got up from the recliner, and tried to figure out how to work a Swiffer wet jet minus necessary batteries. I turned on the television and brewed a pot of Joe. When I heard someone talking about cervical issues, TMJD, and pillows, I thought I had gone back to sleep and was having another nightmare. But wait... I could smell the coffee!

I walked closer to the television and watched the graphic explaining how this pillow would help my neck. I looked up at the ceiling, wondering if God might be talking to me. Thinking that perhaps He was, I called the toll-free number to mypillow.com. They were experiencing unusually high call volume. Hmmm. Could there be more pillow-fighting athletes out there, other than my friends who have trigeminal neuralgia and facial pain? Perhaps. Not wanting to be in pain any longer than I had to be, I purchased the "firm" pillow via Internet.

Just three days later, it arrived. I followed the instructions by putting it in the dryer for a few minutes before I used it. After a few nights, I realized that a pillow that was actually too high existed. It gave my head and neck great support, but too much of it. I called MyPillow and spoke with a representative and learned that I had ordered an item sized for a linebacker. She helped me select another size, and I am hoping that it will be delivered tomorrow.

I'll let you know how it goes. In the meantime, I am using an accessory pillow. Some nights are better than others. Those of us who experience facial pain know a pillow is something to lose sleep over.

To my friends and family who offered tons of love and support while I made one of life's most difficult decisions, thank you. I love and appreciate you. Even more thanks go to the Lord, who watched over me in my frailty and angst.

March 2013 note from Kathy: more than a year later, I can say that MyPillow has made quite a difference in cervical and jaw pain. My mom also purchased one, and she has noticed a marked improvement in her comfort level. We have the firm pillows with blue writing on their tags. To my knowledge, these cannot be purchased from anywhere but directly from the company. 

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Trigeminal neuralgia: ABC news report

Has the ABC report of trigeminal nerualgia (TN) and microvascular decompression (MVD) surgery given you hope?

I'm encouraged not only by the fact that the debilitating condition has received recognition by a major network but also that people who suffer have had a moment of validation. Let's take that moment and internalize it, making it a part of who we are: strong, sane individuals who suffer and want to get well.

Several of my friends, none of them who have experienced facial pain, have contacted me about the ABC news episode. They wonder if I am aware of the procedure. When I was the Director of Patient Services for TNA, the Facial Pain Association, I discussed the surgery several times each day with individuals who were looking for relief.

No, I didn't have the surgery. One of the reasons I didn't was that I was afraid. Although the statistics show great results, not everyone's pain is relieved by the MVD. But don't lose heart; MVD surgery is not the only resource.

After I was properly diagnosed, I searched the Internet looking for help. I ran across message boards where people talked about their complications and expressed their remorse for having this procedure. I was paralyzed by fear, afraid to move forward with treatment. When the electrocution-type pains struck, I prayed to die. They were in all three divisions of my nerve: my right eye, my cheek, and my jaw.

What I didn't know was that people often post on their worst of days, never returning on the good days to say that they are better. When they pain is relieved, they often move on with their lives and prefer not to think about the trauma they have experienced. For the people reading the blogs and message boards, it looks as though there is there is no hope. But there is.

ABC News encourages people who have trigeminal neuralgia to make sure they have a physician who believes them. I cannot emphasize enough the importance of this. It's part of the validation process. Many individuals who have facial pain have been dismissed as having emotional problems. It's important to know that depression is secondary to trigeminal neuralgia. Another thing you want to consider is that the MVD attempts to treat the situation that causes the pain. Other procedures, often called less invasive, cause damage to the nerve.

Other important things to note is that some neurologists do not have experience in treating facial pain. Neurologists prescribe medicines and can refer you to a neurosurgeon if you are interested in a procedure. Not everyone is a candidate for an MVD, and not every surgery is successful. It's important to discuss this possibility with a neurosurgeon. One thing that may give you insight into what you can expect after the procedure is to ask what constitutes a successful surgery in the neurosurgeon's opinion. You may want to find out how many MVDs the physician has performed in the past year.

Most of all, it's important to do your homework. To learn about the many types of treatment, you can read an excellent book called Striking Back. It discusses the many types of facial pain and their treatment options.

If you are wondering why God allows people to suffer like this, you may be interested in With Great Mercy. It's a personal account of how TN affected every area of my life and how my faith pulled me through the dark times.

I've told hundreds of people, maybe thousands, that the world would be a better place if everyone experienced this excruciating pain for just one day. No one has asked why because we know. It gives us greater compassion and empathy for others. It makes us thankful for the blessings we once took for granted. We so desperately want those around us to understand why we cannot talk, brush our teeth, or experience the slightest breeze without being "electrocuted." But maybe - just maybe - reports like Diane Sawyer's will help others relate to us.

ABC: thank you!

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Happy ending: the search for a perfect bed

Almost anyone who has shopped for a bed knows how confusing the process can be. I decided a  traditional mattress was the best choice.

The second part of the journey (see part one) began at Sears in Jacksonville, Florida. Going from Sealy to Serta to Stearns and Foster, the brand most comfortable was Stearns and Foster. The store had at least three models from which to choose.

Here's the caveat: each bed was different on the left side than the right. One side was labeled "plush" while the other was "firm." It was confusing.

At Ashley Furniture, the beds were also different on the left side than the right. But even more disconcerting was the music being played at 10:00, a rhythm appropriate for Zumba dancing. Upon my request the volume was lowered, but I couldn't focus on sleeping when my impulse was to jump up and move my hips.

At Haverty's we found Stearns and Foster mattresses that were the same on the left as on the right. A gentleman named Jonathan Chila led me from one model to the other, including a "silver" bed. It's pictured above.

The silver model (which may be called something different) cradled me, relieving pressure from my neck and jaw when I laid on it.  I bought it. The morning after my first night's sleep, my neck felt better than it had in the morning in years.

Although I have slept well, the rattan pillow I've been using to sleep is now too hard. I use it when I prop up in bed to read. It's taken several nights to get the right combination of pillows, but the beauty of the new bed is that my perfect pillow has turned out to be just a firm, everyday pillow. One.

I made a pricey choice, but I stop and think about the money I've spent on my medical care, and the mattress is worth is worth the cost. That's my experience. What's yours?

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Sleep: Who's got my number?

So many people who have trigeminal neuralgia and other types of facial pain experience discomfort when they lie down. We fight with our pillows, and sleep can be difficult to attain.

Finding my right pillow took years, and if you are interested in learning more about the rattan pillow that works for me, you can find it using the Google search bar that is embedded in my blog. But comfort requires more than a pillow. One's bed is also important.

My daughter and her husband love their Sleep Number Bed, so I decided to give it a try. I visited the store several times, trying to get just the right mattress, the perfect number. My first night, I awoke several times. My right arm kept going numb. I have a lot of different symptoms, but this was my first encounter with arm numbness.  The next morning, I ached from head to toe: head, neck, shoulder, hip, knee, and ankle.

According to the purchase agreement, I had to wait 30 days before sending the bed back. It was packaged up, and in all I spent approximately $380 for shipping. Then I waited more than 30 days for our refund- quite a few more days.

I've noticed that the air mattress beds, similar to Sleep Number, are being stocked in hotels across the country. Now before I book a room, I call the property to ensure that a traditional mattress is there.

I'd like to reiterate that my daughter and her husband are happy with their Sleep Number bed. But I had terrible discomfort three days after spending one night on this type of system. Perhaps there is a perfect number for me, but I am not willing to go through the pain of finding it.

My money was refunded and we have purchased another bed. I'll be blogging about that experience next.

I'd love to hear about your experience. What type of mattress works for you?

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Opening the prison door

Pain can be a prison. It holds us captive, rendering us unable to overcome circumstances and to live a full life, and powerless to reclaim the freedom we once knew. Once trigeminal neuralgia or other forms of neuropathic facial pain strike, we may realize that we didn't fully appreciate our lives prior to the onset of the disability.

We look for answers, proclaim ourselves not guilty, and know we wouldn't wish this type of torment on anyone, even our worst enemy. We call for a guard, and he or she comes, but they do not unlock the door for us. Medications, procedures, and alternate treatments don't always work. We're trapped.

Maybe you've begun to fear that you have received a life sentence, that the pain will never leave. Hope becomes elusive. Without hope, we cannot go free.

Don't give up. Make your release a goal. Don't accept a life - or a death - sentence.

Coaches and teachers have teach their students to "keep an eye on the prize." I believe it is appropriate to adopt this way of thinking. Picture yourself living a normal life. Don't lose sight of it. Step by step, visualize yourself in better health. Hold tightly to things that you cherish.

I held onto my belief that the Lord would not "leave me" in such terrible pain; receiving a miracle was my goal. By the time my prayer was answered, I had  experienced quite a bit of isolation. I didn't really know how to relate well to people any longer. I was grateful. I asked what could I do to help someone else, something I could do from home.

Soon I became involved with Prison Fellowship Ministries. I started as a penpal, and the experience mushroomed. As years went by, I volunteered to teach classes at a prison.

My original penpal and I have been writing four years now. In fact, he has become like a son to us. When I first wrote him, I explained trigeminal neuralgia and how it was like being in prison. I sent him a copy of With Great Mercy. When he read it, he understood that prison comes in many forms.

We are experiencing some glitches in our visitation recently. There is nothing we can do about it, but we understand that God knows no limits. If you'd like to offer a prayer on our behalf,  we'd appreciate your support.

Most of all, I'd like you to know that my prayers are with you, that your release date will come soon.  

Not guilty: that's 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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Making Mother's Day special for someone who experiences facial pain

Celebrating Mother's Day with a mom who has trigeminal neuralgia or neuropathic facial pain can be complicated. But I remember a wonderful Mother's Day that occurred when I was ill. It was fabulous in spite of the pain, my inability to chew, and the fact that I was experiencing extreme social isolation.

My daughter and her husband came to my home. I didn't have to concern myself with facing the world, about applying cosmetics, or accomplishing oral hygiene. Dan, my son-in-law, brought food with him and prepared a meal for me. At the time I had not developed an allergy to eggs, and he brought "Pour a Quiche," which he baked in my oven. No chewing was necessary because I avoided the crust. I cannot remember the side dishes or the dessert, but I recall the meal was delicious.

After brunch, the family and I settled into the living room and watched a movie. I fell asleep while they were here, comforted by their presence. Comfort may be the best gift someone can give a mother who is experiencing unrelenting pain. It might mean letting go of a traditional Mother's Day and designing one to suit a mother's needs.

Simple things can be most important to someone who has lost much. If you would like to prepare a meal for a special lady you can find some "no-chew" recipes if you go up to the Google search bar at the top of this page.

Giving Mom a reprieve from social isolation is another way to bring comfort to her life. Although she may not be able to talk much, she can listen. You might want to read to her, a favorite poem, a passage from the Bible, or a written memory of a special moment you've shared.

Because people who have trigeminal neuralgia often depend greatly on their computers and the Internet, you may want to ask Mom if hers is in good working order. If not, taking care of maintenance is an excellent gift.

Most of all, don't underrate the power of touch. She'll like it if you gently squeeze her hand. If she has a side of her face that doesn't have pain, you can place your cheek next to hers. Many people who have trigeminal neuralgia crave touch, but they fear being touched in a manner that evokes pain. Quiet comfort is best. Too much noise, whether it's loud conversation, music, or television can create further neurological distress.

Invest time into finding the best card you can. It will linger long after your visit, giving Mom a reminder of your visit.

I'll always remember the tough years and how my family made the day special, tailored to my needs. My mother made the day about me, forfeiting her own desires. I love you, Mama.


Love is stronger than pain.

We'd love it if you share your desires or gift ideas with us.

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