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

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?

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?

Have you visited my website?

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.

Have you visited my website?

Avoiding stress today: a message from Kathy

Thanksgiving is my favorite holiday, the favorite holiday for many. Family, friends, food: it's all good. But sometimes stress creeps in when we least expect it.

Let's think about facial pain, trigeminal neuralgia and the more elusive neuropathic (or aytpical) facial pain. Most people don't understand it, so remember this: in your home or group of gathered individuals, you are the facial pain expert. You've experienced it, almost disbelieved it, and you've researched it. It doesn't mean you totally understand it, but who does? You are still the expert in your little group.

If someone questions you today, asks as though you are trying to get attention, take shortcuts, make excuses, or get out of work, what can you do?

Let's consider a basic premise: you are the facial pain expert in your group. You have more knowledge and a better understanding of facial pain. For a moment, let's try to put ourselves in the shoes of those who don't have trigeminal neuralgia or neuropathic facial pain. Most of us remember, at some time, a person telling us about having an odd pain that seemed incredulous. I remember doubting someone's sanity when she described her rare, invisible disability to me. Maybe part of it was that there was no label for it, but I'm not sure I would have believed it if a diagnosis had been discussed. We don't want to entertain the idea that such things are possible.

Speaking of doubts, maybe you have a jaw joint problem? I remember thinking TMJD was just a nuisance that one might have to endure. I had no idea how debilitating the pain could be. Now I know. I understand.

Take solace today in knowing you have become a better person because of your pain. Resist the pressure to do more than you can. If pain is triggered by talking, remember to take some time out. Put in a movie or turn on the parade. Explain you need to give yourself some rest time, and do exactly that. Dig deep into your faith and your personal strength. Don't be afraid to curl up in another room with the family dog or cat or maybe open a book or magazine.

Taking care of yourself is important. You don't have succumb to the pressure of attending black Friday sales at 4:00 a.m. And you can have a wonderful Thanksgiving in spite of others' insensitivity to your needs. It's about giving thanks, not pleasing everyone. Remember this: I believe you. I hope you have a good day and a wonderful Thanksgiving.

Have you visited my website?

A medical decision I'd like to undo

If you live with facial pain, chances are you know about regret. Somewhere along our journey, we find ourselves looking back, wishing we had done something differently. A few years ago, I opened correspondence from someone who had the misfortune of encountering a physician with whom she was angry. The lady with facial pain expressed her unbridled rage.


She shared her story, saying that the neurosurgeon had performed a procedure and had not cautioned her about the possibility of anesthesia dolorosa.  The treatment had not worked, and she was left with  constant facial pain and numbness as well as other unpleasant side effects. She told us she had contacted the physician, but he would not acknowledge the failed procedure or validate her feelings.

I understand her anger. When trigeminal neuralgia or neuropathic facial pain consumes a person's life, he or she becomes desperate for relief. We look for a way to stop the pain, a chance to live a normal life again. What we may not know is this: the very procedure that relieves someone else's pain could make our pain worse. Medications or treatments that help one person can be totally effective for another person. It doesn't make sense, but it's a reality. We can ask all the right questions and receive excellent feedback, but we have no guarantee that a procedure is going to be successful.

When I had terrible electrocution-type pains from trigeminal neuralgia, some of my practitioners encouraged me to seek treatment for my jaw. They believed some of my pain could be relieved. I moved forward with something called "functional jaw orthotics" and went across the country to receive care from an expert. In the course of two years, I made many 3000 mile round trips.

Our insurance did not cover the treatment, and my husband and I had to pay for my flights, lodging, and meals. We thought it would be worth it, but we were wrong.

At first, my new bite felt great. But a few years after the TMJ/TMD treatment was complete, I started having a type of facial pain that was new to me. It went down my neck and into my shoulder, and I thought the pain originated from my sternocleidomastoid muscle. After all it wasn't TN type pain, and I believed my jaw joint was fixed. The situation was confusing.

The pain grew worse, especially when I went back to work. My jaw locked shut often. Pain spread deep into and around my ear.  My teeth, which had always been straight, had become crooked. (My two front teeth are getting pushed back and the two teeth on either side are overlapping them, as if they are pushing them back. Several of my lower teeth are crooked. When I run my finger over the bottom teeth, they are in an inverted "V.")

Although my bite was problematic before the functional jaw orthopedics, my teeth had always been straight. I had never worn braces. Part of the treatment for my jaw joint was to put crowns on eight of my teeth. Now I have a mouth that is crowded with crooked teeth, and my bite is still problematic.

About eighteen months ago, my jaw joint practitioner called me when he received a copy of an evaluation written by an orofacial pain specialist. A few months ago, I asked him to refund the money I paid him for treatment. I didn't ask for expenses, but I hoped he would refund what I had paid him.  I'd like to move forward with orthodontia and perhaps I can have the crowns replaced. But my request for a refund has been denied, and the practitioner states that he stands behind his work. He has done nothing wrong, he says.

Have I been angry with him? Yes. But it doesn't help me. Anger bites like a rattle snake, releasing its poison into us, it's venom penetrating our mind, body, and spirit.  Unless we forgive the person who has performed the offending procedure, we cannot move forward.

We must forgive for our own benefit. It doesn't matter if they don't care about us, believe us, or acknowledge our current need. The practitioner is part of our past and not part of our future, even if we continue to bear pain resulting form his or her work.

Lack of forgiveness results in bitterness. Have you ever known someone who is bitter? It's not an attractive trait. Bitter is the last thing I want to be.

The advice that Jesus gave about forgiveness can help us; forgive the offender seventy times seven times, He said. (Matthew 18:21-23). Even as He bore terrible pain during His crucifixion, Jesus forgave. But forgiveness isn't easy, and it can take a while to achieve it. I concentrate on good things, like the fact that TN's electrocution-type pains have been gone six years.

I choose to forgive the person who ignores my pleas for help. My forgiveness doesn't make him right, but it helps me. He thought he was helping me. We've all made mistakes. I've hurt people, and I'm not proud of it. I hope for forgiveness when I am wrong, and because of this hope, I forgive.

If you've made a medical decision you regret, please read part one of this entry: http://kathytaylortrigeminalneuralgia.blogspot.com/2010/10/decisions-we-cannot-undo.html

Now tell me about you. Do you want to forgive someone? 


Have you visited my website?

Decisions We Cannot Undo

When I worked as the director of patient services for a facial pain organization, it was not unusual to receive a phone call, an email, or to talk face to face with an individual who regretted having a procedure.  The discontent was usually directed at two people: the physician or health care practitioner who performed the deed and at the person who underwent the treatment.

It's so easy to blame one's self, to want to go back and undo it. People often torment themselves with wondering why they made the decision.

Let yourself off the hook. Consider this:

* You were taking action to improve your situation.

* You were in terrible pain and made a decision that seemed sound.

* You underwent an approved procedure.

Other considerations are possible. Maybe you spoke to someone at a facial pain organization or someone who had the same procedure and got better. Perhaps you are responsible for someone else's care and did what you could in hopes of being able to help others. Maybe you felt as though you could not continue to endure the pain.

If we saw someone enduring terrible pain, we would expect them to do something to try to relieve it. That's what you did. You're not guilty, not foolish, not rash. When we look at numbers, it can be difficult to measure the success of a procedure. Even if only one percent of treatments have side effects, what if we are the one?

We think positively, moving ahead with the course of action. We want to function again, to have a life, a career, and to be productive. But if things go wrong, it's difficult to continue to "think on the bright side of life." But thinking in a positive manner continues to be a powerful tool, regardless of the extent of suffering. Most of us with facial conditions have walked through some dark places, times when positive thoughts eluded us. We've got to move ahead, find hope again.

Whatever went wrong, it's not your fault. Accepting that will help you deal with circumstances that surround your decision, circumstances such as Anesthesia Dolorosa, increased pain, or numbness. It also means letting go of anger and bitterness that arises with the practitioner and possibly the fact that we have paid that person for a procedure that didn't help us.


We've done the best we can do. 

I've never had a procedure for facial pain, but I had one for my jaw. The procedure, including travel and lodging, was about $25,000 out of pocket. And my jaw got worse. Much worse. It's not easy to deal with, and it gives me insight into regret. I had more than one opinion about my jaw, and I saw the best of the best. Maybe I'll blog more about it at another time.

We want pain to go away. It's even more important to "get rid of it" when those around us don't understand it's severity. Being angry with one's self can cause depression, frustration, and lack of confidence. Forgive yourself.


Just a shout-out: I want to thank the Lord for helping me through trigeminal neuralgia. 


Have you visited my website? www.withgreatmercy.com

Cold weather: minimizing impact

The Boy Scouts say it best: be prepared. What does this mean to someone who has trigeminal neuralgia or neuropathic facial pain?

Summer offers some people who have trigeminal neuralgia and other types of face pain a reprieve. Sometimes it's hard to imagine (and who wants to remember?) the suffering that occurs. No one wants to think about the possibility of severe pain returning, but the past two winters have been tough ones. So let's think about what can be done to help should this be another frigid season.

Before the winter approaches, have a talk with your family and friends. Talk to them about the rough places, the times when the pain reached your spirit, not just in your face.  Tell them what might have made the tough patches better, and ask them if you could have done something differently to help make the situation easier.

Ask your physician about a permit for accessible parking. Explain what it feels like when the wind hits your face. When you get the permit request signed, go to the issuing office before the harsh weather comes. For more information, please visit this entry: trigeminal neuralgia,parking lots, and wind. You may also want to take a look at some resources to shield your face from the wind. .

Have a Plan B for the Holidays. Although it is a festive time of the year, Thanksgiving, Christmas, Hanakkuh, and New Year's Eve fall during the colder months.

If you're the person who cooks, think about what you can do to make the dinner simpler. Ask people to bring or casserole or dessert. And have an alternate plan just in case you aren't well enough to cook that day.

Simplify gift giving. This will mean different things to different people. Maybe it will mean ordering things via the Internet or shopping at places that offer gift wrapping. It could mean fewer gifts.

For every day life, have things handy to simplify your life. Write directions to your home or other gathering places so that you can send them through email, fax, or snail mail rather than explaining them on the phone. People who experience pain when they talk know the importance of having information available in writing. Consider text messaging for your cell phone if you don't have it.

Schedule automobile work, home maintenance, and routine medical and dental visits before the cold weather hits. Stamina is often an issue for people who have face pain, and you'll want to have the fewest amount of responsibilities possible.

Make a list of important phone numbers or emails. Keep them with you as well as in a convenient place in your home.

Have cold weather attire handy.

If you do something to help you prepare for the cold weather, I'd love you to share it with us. God bless you.

Have you visited my website? www.withgreatmercy.com

Loss Part 4: Social Isolation

Everyone has times of loneliness; it's part of the human condition. We can be lonely in the midst of a crowd or as part of a family. Social isolation is much more than loneliness. It takes hold of us when venturing outside our homes or allowing someone in our dwelling becomes threatening. Sometimes people with facial pain and other disabilities are isolated because an illness prevents them from getting out of the house or from interacting with others.

Isolation can occur for a number of reasons. Because of the disability, we lose confidence in being able to interact successfully with others. Sometimes exhaustion plays a role in becoming isolated. Other times, we experience rejection from family members or other individuals who mean a great deal to us. Ridicule from co-workers or fellow students can also be a factor. After all, why would someone cover his or her face with a scarf on a day with wonderful cool breezes? Sometimes its the way that strangers react to us that can cause us to become discouraged.

Social isolation can be overcome, step by step. One of the things that we can do is to join a support group for people who have pain. If there is not one in your area for facial pain, you may want to contact pain organizations such as the American Chronic Pain Association, The American Pain Foundation, or Rest Ministries. There are also on-line groups for people who are not yet ready to venture from home.

If you are looking for a way to get out of the house, you may want to volunteer for an organization. Find one that will be really flexible with your schedule, and make sure that the activities don't trigger your pain. You can do more solitary activities like shelve books in a library or you can choose something more social such as volunteering at a church or school. I recommend that you ease into activities like this, working no more than two to four hours a week until you are confident that you can handle more. You may also want to avoid volunteering for one-on-one scheduled activities. If you are having pain at the time of the appointment, you may feel pressure to meet the schedule - not wanting to let the other person down - rather than taking care of your own medical needs.

Pets can help us overcome isolation. Look for a group of owners who share your interests. You can usually do this through www.meetup.com or through your local ASPCA or Humane Society chapter.

There's nothing I recommend more for someone who is socially isolated than becoming involved in a friendly church. For people with facial pain, this can be difficult - downright impossible. When I lived in Gainesville and was attending a new church, people would come to shake hands with me, smile, and chat. Sometimes It caused me a lot of pain to smile or to talk. I wanted to embrace the friendliness, but I couldn't. One nice woman asked me to go to lunch, but I didn't want to try to eat in public. Having lunch with someone involved two painful things: chewing and talking. If you are interested in going to church, you may want to see if the church has a visitation pastor or volunteer. You can meet one-on-one with this person to explain your situation, and they can facilitate your needs. At a small church, you may not find someone with this role, and this means you will need to contact the pastor.

Whether it is volunteering, going to church, or finding a support group, write out your special needs - how to avoid your triggers. Make copies. Take them with you so that you won't have to explain it time after time to the new people you meet. If your first effort doesn't feel right, you have the opportunity to try again or to move on to another choice.

Everyone needs support. These are just a few ways to overcome isolation. Tiny steps are usually the safest way to begin your journey back into the community. I am wishing you the most success. It may not be easy, but you are worth the investment.

Will you share your experience with us? Your success in overcoming social isolation? Your needs? You may comment anonymously.

Experiencing and Recognizing Loss -Disability

Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us.

I'd like to digress a little bit and address the word loss. In school we learn not to use the same word over and over again in a paragraph or even in an essay. I like to ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone. Period. We want it back, but it eludes us.

Because loss is such huge subject, I want to write about it for a while. Today I'll try to tackle one of it's sub-topics: disability. It's a topic I can really get fired up about.

Disability benefits are necessary for some people with facial pain. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it.

No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair.

Most people with facial pain do everything they can to make their lives as normal as possible, as enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive.

So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves. We also lose income.

I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, their self-worth. The list of losses goes on and on. Let's get even more personal: they've lost their ability to kiss, to speak, to chew, to swallow, to concentrate, to remember important things, to brush their teeth. It's difficult to stop naming the losses.

If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate.

The thing I hate about the disability benefit process is that we have to justify being sick. It's much healthier for us not to think about it and to focus on the good things in life. But to get the money - which we deserve - we have to think of our worst case scenarios and expose our vulnerabilities. It's just not good for us.
We're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. With the explanation emerges the feelings we try so hard to suppress.

We feel so alone, like failures. But we aren't either one of those things. We are coping with something many people are afraid to understand. They don't want to let it sink in. After all, could it happen to them? Will they take the chance to identify with your situation? Probably not. You already know this, don't you?

There's a time and place for everything, something else you already know. The time to make the loss and the pain clear is during the disability application process. It's not fun to share the pain. It's going to feel crummy, but you're surviving the pain, and you'll survive this process.

I'd love to hear from you, about your losses. It may help others if you post them here on this blog entry, too. God bless you and may you regain what you have lost.

For more information on loss and disability issues, please visit my website: www.withgreatmercy.com

Bridezilla? or Facezilla?

OK. Sometimes I am better at resting in God's love than at other times. I'm feeling better now, but last week was tough. By the end of the week, I was totally frustrated. It's not just the pain; it's the medicine. It is also the feeling of hopelessness that tries to set in. But it's the hopelessness that we have to fight; no one can do it for us. In the midst of rest, I had a close encounter with someone whose behavior resembles mine from time to time.

Sunday, my pain was still raging. There wasn't too much to watch on television, so I tuned into Bridezilla and was totally fascinated. I thought about how obsessed these young women were in their quests to have a perfect day.

Bingo. A perfect day. Obsessed with a situation. Oh yeah, I had to admit that I am sometimes a Facezilla. Like a bride who wants everyone to understand what she is feeling and what she wants... I have these same feelings. I'm misunderstood. Sometimes I am angry. I hurt so badly. Why can't I just have what I want? Doesn't anybody really want to help me?

Who cares what it costs, huh? No not more flowers and bling. I want another method of treatment. Insurance doesn't cover that either? Who is going to make relief happen?

Be reasonable? I don't want to be. If the bridezilla doesn't like what the cake that has been prepared for her, she can just put her fist in the cake and smash it. Somebody will clean up her mess. I don't have the luxury of cake-smashing. Doesn't anyone understand that for once I just need to have a day with no pain? I want a day where I can talk, chew, and be free from medication. Somebody fix it!

People pity the grooms of the bridezillas and wish them luck with their demanding brides. Oh yeah. I pity my husband. It took him a few years to catch onto what I am am experiencing and how I feel, and I'll tell you how I feel: sorry. Sorry for him. He stands by now, trying to remain calm. He knows that if I get upset the pain will escalate. He just allows me to be right. How frustrating when I know that I am not.

I hope I have made this a little humorous, but the reality is that constant pain and disability can cause a person to lose perspective. Weddings aren't going to be perfect. Neither are facezillas. Have you hugged yours today?

The Drawstring

When I was a child, I had a Chatty Kathy doll. I'll never forget when the dolls became available. Not only did this doll have my name, but she also had my hair, my face, and my freckles. Being the loquacious child that I was, it was fun to have a partner who would talk with me. I just had to pull her drawstring, and I did so often.

It wasn't long before Chatty Kathy's drawstring broke from overuse. It wasn't abuse, just my enthusiastic desire to talk with her. I kept the doll long after she was mute. I wish I still had her today because I cherish the memory of her.

Now I would be content just to hold this cherished item for a few seconds. I've learned that it isn't the spoken word that is so important. With my jaw so often dysfunctional, I rely on touch, typed words, and eye contact. They've become more meaningful to me than spoken words. Back in the day, I could talk all I wanted, even if my doll could not. Now I understand her so much better.

Chatty Kathy's value was limited once the drawstring broke, but not so for humans who cannot speak. Having a disability does not mean that we are worth less. Our value holds. Not everyone will see this about you, but it is true. As individuals with disabilities, we must believe in ourselves. We must know that although our abilities have changed, our value has not. It is the core - the melding of heart, spirit, and mind - that forms the essence of an individual. We don't have to allow ourselves to be discarded like a child's broken doll.

One of the best ways to overcome depression that can be secondary to an illness is to network with others who have similar experiences. Not only will you have the opportunity to be supported, but you will find yourself able to support others. Our strings might be broken, but our spirits can be revived.

Barometric pressure and neuropathic pain

It's been great to have some rest and to be able to control my environment. That means no more than 15 minutes at a time for my computer sessions, very little talking, and almost no chewing. There are other things on the list, but these seem to be the most important. Today my neurologist and I had a talk about how being able to control my environment and the ability to get better.

I mentioned that the one thing I could not control was the barometric pressure, and it seems to trigger the pain as much, if not more, than anything. During the times when the conditions are just right (should I say just wrong?), the nerve pain hits my mouth, jaw, and my neck. The foreboding sky, the one that looks like nighttime during the day, seems to rock my world.

After my doctor's visit today, I ran into the grocery store for just a couple of things. I live in a small town, and people are friendly here. The minute I walked in, a lady whom I had never met wanted to engage me in conversation about food. I knew better than to open my mouth. I had to get in and get out of the store and to let my jaw rest completely. There's no need to explain it to someone. They'll think I am crazy. Plus, if I am going to talk, I might as well talk to her about what she wants to talk about. After all, a zap is a zap regardless of the reason for having it.

When I was a kid, I remember a song called Silence is Golden. I didn't get it. As a loquacious individual, I have preferred a life filled with conversation laughter. Forget about interruptions, the more spontaneous, the better. That sometimes seems like another life, another person. I am thankful for my quiet times, and they far exceed the times that I spend talking to others. I'm still grateful to communicate, but I am even happier that I don't have to.

Grateful and thankful I remain, even in the midst of the storm.

The Valley Called Trigeminal Neuralgia

This entry is also from my With Great Mercy blog and website.

November 3, 2008

Then the LORD took hold of me and said, “Get up and go out into the valley, and I will speak to you there.” So I got up and went, and there I saw the glory of the LORD… Ezekiel 3:22-23.

After reading my last blog entry, several people have asked me how a valley of tears could become a place of refreshing. It doesn’t make sense if we trust only our senses and our logic. Through our faith in the Lord, though, we learn how a personal valley can become a place to witness God’s glory.

Ezekiel – the prophet whom God chose to be watchman for Israel – had no choice but to warn the Israelites about God’s upcoming wrath. No one wants to hear gloom and doom, and this made Ezekiel’s task a painful and dangerous one. Yet he wanted to be obedient, and he was. It was in the midst of this obedience that God led Ezekiel into a valley.

The valley represents a place of loss, of weeping, and of mourning. No one wants to be there. Let’s face it: feeling good feels good. Feeling low, sick, bad, unloved, grieved, or feeling pain doesn’t feel good. Our flesh has a disdain for the valley. But sometimes our spirit cries out for it.

We’ve heard the adage about being down so low that there is no place to look but up. I think that adage has a lot to do with valleys. Down so low, we’re usually there all alone. That’s when we really long for understanding. No matter who we are or what we need, God understands. In our aloneness, we have the chance to focus on what we can gain from the situation and to ask how we can walk out of the valley and back onto the mountain top.

Before we can ascend again, we need to see the beauty of the glory that shines down into the valley. When we’re on the mountaintop, the glory makes it difficult to see anything but ourselves and what is directly around us. But in the valley, the glory becomes so profound. We can see more of God’s creation, and in our solace we can also have a greater experience with Him.

When Ezekiel was in the valley, the Lord gave him some instructions. They were not easy to follow, but Ezekiel knew they were from God. He knew because he had just experienced God’s glory. A personal experience with God helps us while we remain in the place of lowness. Having an intimate experience with the Creator fosters spiritual renewal. Our circumstances may not change, but our spirits are revived by the glory.

Emotions and face pain

As someone who has counseled people with facial pain, I understand that it is not uncommon for someone's emotions to reach a nadir. It doesn't matter if it's my pain or the pain that belongs to someone else. So I am always concerned when I hear that someone with facial pain has emotional issues. Of course we do. What others take for granted in every day life has been taken from us, and no one seems to understand the intensity of the pain. Except the people who have it...

I wish that I could explain to the world what it is like to be unable to communicate orally with others and to not know sign language. E-mails and text messages are some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we can communicate orally and other times we cannot. We aren't dependable, regardless of how much we would like to be.

Pain of any type can bear on our emotions. Face pain can cause a person to have bad breath and poor dental hygiene (no brushing for days on end sometimes), robs a person of the ability to share a kiss, and going out to eat is just unthinkable. When people experience this much isolation, pain, and disability... well he or she just may get emotional.

Why some people think that the emotional issues cause the pain, I'll never know. Perhaps it's because they have never experienced these issues. I've always thought that the world would be a more compassionate place if people could experience trigeminal neuralgia or other types of face pain - just for a day.

Several types of medical issues cause face pain. It could be trigeminal neuralgia, myofascial pain, neuropathic pain, or a jaw problem. These things travel along the trigeminal pathway, and they have a life of their own. We don't know when the pain will come or go. We just know that we are out of commission until it settles down.

Recently I had to make an important decision. I knew I was too ill to think rationally. I tried to explain this, but I was pushed to make the decision. My response was emotional because my pain level was high. Now the decision is made, and I am glad it is behind me. I get emotional when I cannot speak, brush my teeth, open my mouth, or stop the pain.

If you get emotional because of facial pain, let me reassure you that it's normal. Take good care of yourself. If you are able to talk, you may want to see a counselor. But you may not be able to talk...

What I really like about prayer is that I can talk to God without saying a word. He understands why I am emotional in times of pain. I am thankful for my faith in God.

Unfinished business

Have you ever had to return to a place you once loved? It's happened to most all of us, having a relationship or situation come to a close. We leave part of ourselves behind forever, the intangible investments we made. Today I have to retrieve my tangible items. Things - tangible as well as intangible - can deter us in our paths.

Last week, I had to go to Jacksonville for a medical appointment. The purpose of the visit was to have my MRIs read and the diagnosis made. My husband and I were almost ten miles down the road when I remembered that the MRIs were on my kitchen counter. We had to turn around to retrieve them.

The MRIs represented terrible pain. I had to hold something in my mouth and bite down on it 7 minutes. Well, it was so huge that biting down was my only option. I had just come through 1.5 weeks of muscle spasms that were caused by the exam. The day after the MRI, I felt worse than ever. My jaw locked again, and the discomfort was ferocious.

Today I will have some pain as I turn back around to get some things that I can hold in my hand. I'd love to keep traveling and not look back, but I need the things I left behind.

I think it is going to be alright, though. I had so much pain yesterday from the barometric pressure, but today is much better. So it is time to resume the good fight, to finish this course. I thank God for watching over me.

Missing my friends

Back in the old days - before blogs, twitter, google, facebook, and email - people could fade into the distance or fall off the face of the earth. We wondered what happened. Closure seemed as impossible as continuing the friendship. The old days had some good points, but modern times have so many advantages. Recently I left a place of employment, and I had "met" so many wonderful people along the way. These individuals either had or loved someone with trigeminal neuralgia, glossopharyngeal neuralgia, or other types of face pain.

I miss these wonderful people.

One of the marvelous things about computers is that we can get so much accomplished without speaking. I'm having a very difficult time speaking these days, but I would still like to voice my care for people with face pain.

Most of us have been to a point where we know we could no longer continue, where we had to step back and take care of ourselves. I am there now, but I miss you.

Claire Patterson, the founder of the Trigeminal Neuralgia Association, says that only the nicest people get face pain. Claire speaks the truth. I will always be grateful to her for raising a banner to fight face pain and to help those who have it.

So this is just one more blog that will let googlers and other Internet users know that they aren't alone. Don't give up. Hold onto hope.