Twenty years ago, reading challenged me. So did speaking. Brushing my teeth. Sitting under a ceiling fan or being outside in a breeze. Chewing.

Reading? Yes. One branch of the trigeminal nerve lies behind the eye. Another branch goes through the cheek. The third branch is located down in the chin.

My eye hurt constantly, feeling as though it would pop out. Reading glasses were impossible because the weight of them. No matter how light, they aggravated the pain.

Don’t touch me. Isolation captured my life.

So many moments, I wondered how I could live through the next sixty seconds. I prayed to die. My mother kept vigil, refusing to accept my plight. With her at my side, my faith began to grow. One day I stopped praying to die and began to pray for a way to live. Many people today do not believe in miracles, but I got one. And now not only do I read books but I also write them.

God is good. All the time.

Another cranial nerve, my glossopharyngeal nerve, began to give me trouble. The same intensity of trigeminal neuralgia, the “glossy” nerve goes through the neck, the tongue, and the ear. Because I have gained enough faith in God’s mercy, I never prayed to die because of a glossopharyngeal episode. I haven’t had one for more than four years now.

So this is my testimony on Trigeminal Neuralgia Day, summed up in just a few words: Thank You, Jesus.

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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.

The post How to help others experiencing pain, even when you are suffering appeared first on Kathy Maresca's Site.

Years ago, I was in terrible pain with trigeminal neuralgia, so my daughter and her husband came to my home. Because they were willing to make the trip, I could relax and 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. I have some on my full blog. You can go there and search for recipes that I created. http://kathytaylortrigeminalneuralgia.blogspot.com/

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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Until yesterday, 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.

You may find the entirety of my blog at https://kathytaylortrigeminalneuralgia.blogspot.com/ . It will have links to bring you back to this page.God bless you.

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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.

The post Trigeminal neuralgia: How can I get them to understand? appeared first on Kathy Maresca's Site.

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.

The post Social isolation: we aren’t alone anymore. appeared first on Kathy Maresca's Site.

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 dwelling 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. 

The post Trigeminal neuralgia and night terrors appeared first on Kathy Maresca's Site.

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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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.  

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Years ago, when I was new to the world of trigeminal neuralgia, I was visiting my neurologist at the Mayo Clinic in Jacksonville. He asked me if I had eye pain, and I was shocked, thinking he could read my mind. I didn’t realize that he asked because eye pain is so problematic for people who have trigeminal neuralgia. And until then, I thought the “discomfort” was my imagination or just referred pain from my jaw and cheek.

 Sure, I had seen diagrams of the trigeminal nerve and noticed that one of it’s divisions is located in the eye area. But I didn’t want to face the reality that my eye might be affected. As time progressed and the pain became worse, my eye bothered me more.

Sometimes I felt as though my eye would pop out. The pressure and the pain were terrible and it made reading difficult, stealing one more ability from me. And isolation spread itself through my life like a cancer that refused to be arrested.

This is where my story of hope begins, hope that someway somehow God would intervene and take trigeminal neuralgia from me. I prayed that I’d have the courage to move forward with a surgery or that the pain would stop. I knew all about TN going into remission, and I asked please Lord. Let it go into remission forever.  In October 2004, the pain left.

I still have jaw joint pain, but I am thankful it’s not trigeminal neuralgia. And it was great to begin life again. Socially, it’s been difficult. I live in a small town. People had never heard of trigeminal neuralgia, and they thought I was being a drama queen. After all I had been a drama teacher. They never understood the validity of my disability.

Yesterday, I was prescribed contact lenses. Today, unlike yesterday, I’ve been successful at putting them in and taking them out. This process is easy for some, but I’ve always been a little nervous about putting eye drops in or getting close to my eye.

After several attempts yesterday to put in my new contacts, I thought I wouldn’t be able to stop my strong reflex to blink. But today I got them in just fine. I put one inside out and had to take it out and put it back in again. I know I can do this.

The entire time I struggled with the simple procedure, I kept thinking if I can get through trigeminal neuralgia I can learn to do something simple like put in contact lenses. It gave me the incentive to persist.

The disability known as trigeminal neuralgia causes us all to learn that we are stronger than we imagined. How has the pain helped you recognize your strength? I’d love to hear your thoughts. Comments are welcome.

The post Your eye: the first division of your trigeminal nerve appeared first on Kathy Maresca's Site.