Monday, April 6, 2020

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.

Monday, October 1, 2018

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.

Thursday, June 11, 2015

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.  

Thursday, September 26, 2013

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?

Monday, March 4, 2013

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

Sunday, March 3, 2013

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 23rd 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 23rd 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. 

Monday, February 4, 2013

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?