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. 

Have you visited my website?

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!

Have you visited my website?