It's flying time again...

Ray Charles, please forgive me for stealing your line, well almost: "It's crying time again." Simply stated, flying often causes additional pain, stress, and tears to those who have facial pain. The pressure changes in the cabin, the noise of the plane and its passengers, and the stress created by airport security issues seem to be enough to give a healthy person a headache. If you're reading this blog, chances are you experience pain that defies definition.

The causes of facial pain vary from one individual to another, and often the cause or diagnosis is difficult to pinpoint. If you have concerns about flying exacerbating your pain, a discussion with your physician or health care practitioner may be beneficial.

Some physicians will recommend that their patients clear their sinuses with a decongestant before flying. They may prescribe medication to help deal with the noise, stress, or other issues related to being a passenger on aircraft.

Because some individuals pain is triggered by noise, two products worth mentioning are Earplanes, earplugs that are made specifically for flying. You can find them online, drug stores, and airport shops. Another option more expensive: noise cancelling earphones or headsets. Although these tools can be helpful, passengers are asked to refrain from using them until the flight instructions have been given and the plane has begun it's flight. They must also be removed just before the end of the journey so information from the flight crew will be heard. You may want to check with the airline to find the current policy is about when the acoustic headphones can and cannot be used.

For those of us whose pain is caused by the jaw or neck, a tiny pillow to give added support can help quite a bit. It's one more thing to carry, but the number of these items are often limited on the plane. Unless one is flying business class, a pillow may not be available.

Fear of flying embraces a new meaning for those who have experienced trigeminal neuralgia, TMJD, or other types of facial pain. Have you heard the expression of living on a wing and a prayer. I think it really fits this situation. How about you?

Happy traveling. May your journey be full of the Lord's mercies.

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Dental procedures and getting through them

Having anxiety about dental appointments is common for people who have trigeminal neuralgia, facial pain, and jaw joint issues.

I've counseled people through dental anxiety, and tonight I've gone through a mental checklist because I have a procedure tomorrow. Although I have not had trigeminal neuralgia pain in many years, I have experienced other types of face pain. I also have a jaw that has caused serious issues.

Preparation, phase one: I arranged help with transportation. I won't be going to the dentist's office alone. Someone will drive me.

Phase two: I've made notes to communicate important things to my dentist, in case I forget to discuss them with him.

Three: My neurologist advised me to take a Baclofen (muscle relaxer) and something for anxiety before the procedure. If I were having TN symptoms, he might adjust my anti-seizure medications. Instead of having shots in my mouth, I've arranged for my dentist to use nitrous oxide.

Like many individuals, trigeminal neuralgia manifested itself in me immediately after I had a root canal. I had a cracked tooth. It wasn't painful, but the dentist thought I should have a root canal and referred me to an endodontist. Trigeminal neuralgia set in almost immediately. Perhaps your story is similar to mine.

If you have active TN, it may benefit you if your dentist and neurologist coordinate their efforts to make sure you are medicated properly.

I still have one more preparation tonight. I'm going to read some Psalms, including Chapter 91. No fear. Only faith.

Do you have anxiety about dental appointments? Tips for others?

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Pushing through pain and anxiety

 

Most of us have pushed through the pain. Let's face it. Sometimes we have to.

Have you ever stretched your limits, tackled the matter at hand and felt better as a result of it? It's happened to me. Maybe it's the event that actually makes us feel better and the people we enjoy seeing while we're out. It could also be that during the occasion you felt like the person you were before facial pain became a part of daily life. You are still that person. 

You've changed somewhat, but you haven't morphed into someone else. You share the same past with the "pre-war" persona known as you. You'll share the same future. It may not be exactly as you expected, but with some creativity and formidable determination, your future can still be bright.

Just one more question. Have you ever stretched your limits, tackled the matter, and noticed that your pain spiked significantly? Perhaps it was because the event itself was stressful. The environment was cold, windy, noisy. Or you had to interact with people who don't understand your rare disorder. Maybe it was a situation that would have caused you to experience stress even if you were healthy.

Choosing whether to push through or avoid the "event" requires careful examination. The decision is difficult, and there's no measurement, no exact science, to indicate the outcome. But there are some questions we can ask ourselves.

As you get ready for the occasion (which could mean simply going to a movie, eating out, or a day of shopping), do you find yourself more fatigued as you move get dressed and groom yourself? If the answer is a big yes, then the event might trigger greater pain. Maybe you would benefit more from a quiet, restful day at home.

Consider your environment. Will you have a chance to break from it? This could mean retreating to a quiet room away from the party, the ability to step inside from the wind, or having an established  relationship with a person who can accommodate your disability.

Ask yourself if one particular person is pushing you to move forward with the function. Situations like this can be tricky. While we don't want to disappoint someone else, we have the right to ask for flexibility and latitude. We have limitations.

Think about rescheduling. If your appointment can easily be postponed, doing so may be a good solution.

Envision the worst case scenario should the pain spike. Have a plan and a person who will support you. Make an agreement about how to signal your need to leave the event and follow through with it if necessary. If you are unable to formulate a plan, chances are the event may be at high risk of causing additional pain and stress.

Trial and error teaches us much about what we can and cannot tolerate. What suggestions or questions do you have?

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A new year, a new song

Happy New Year!

In January, it is easy to find ourselves hoping that the new year will be kinder than the one that just closed. Sometimes we get our wish, our prayer, our desires. Other times things get worse before they get better, and all we do is continue to learn new ways to cope with pain.

When trigeminal neuralgia was at its worst, I decided to take piano lessons. I began during the warmer months, buying a piano and finding a teacher. There were some issues; sometimes I couldn't see the sheet music very well because my eye hurt. And sometimes I made the same mistake over and over and over. I couldn't blame it on the pain; it was part of the learning process.

Even though the music I made was elementary and riddled with errors, my dogs didn't mind. They followed me into the room and lay at my side while I played. It was as though they had deemed it a "no fight zone." And they never howled, no matter how sour my notes. It was a sweet time.

Best of all, playing reduced the pain.

In my opinion, everyone who has chronic pain needs some sort of distraction therapy, a creative avenue that helps an individual work through the pain. I am impressed with the ventures of my friends who have facial pain. They are accomplishing all kinds of feats, making beautiful jewelry, exercising, photographing, writing, quilting, drawing, and painting.

Several years ago, I read a Chinese study which claimed that people who have chronic pain experienced a degree of relief while they looked at fine art. Is it logical that beautiful things could help us feel a little better? I thought about Keats "Ode to a Grecian Urn:" Beauty is truth, truth beauty, - that is all Ye know on earth, and all ye need to know.

Let's create something beautiful.

I don't play the piano too much these days. I was away from it quite a while, and now I've gotten involved in a fiction project. But I'll never forget how I played my piano even in the midnight hours. My husband, who should have been sleeping, encouraged me to play, forfeiting his rest to help me survive an unbearable night.

I'd love to hear about your distraction therapy or how someone helped you create a way to cope with trigeminal neuralgia, neuropathic or atypical facial pain, or TMJD. What you share may help someone else.

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Pain, prayers, and peace

I'll be signing off for the Holidays, at least until after Christmas. Before I go, I'd like to say Merry Christmas to my friends, the ones I've met, and the ones I haven't.

It isn't easy to have trigeminal or glossopharyngeal neuralgia and have peace. The pain threatens to steal our lives. Sometimes it feels as though our sanity will be the next thing to go. When I was suffering, I found peace in Jesus Christ. His peace was present in the midst of the most terrible pain. I prayed, finding solace in Him. I grew to understand I wasn't alone in my suffering.

If you are experiencing facial pain, I'd like to encourage you to tap into your faith. Take a chance. Dare to believe that Jesus is real and that He cares about you. Take s step of faith and trust that your health will improve.

I can't think of anyone who needs the thrill of hope more than someone who has trigeminal or glossopharyngeal neuralgia. My prayer is that you will be full of peace this Christmas.

 O Holy Night

O holy night, the stars are brightly shining;
It is the night of the dear Savior's birth!
Long lay the world in sin and error pining,
Till He appeared and the soul felt its worth.
A thrill of hope, the weary soul rejoices,
For yonder breaks a new and glorious morn.

Fall on your knees, O hear the angel voices.

O night divine, O night when Christ was born.

O night, O holy night, O night divine!

 

 

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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? 


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Trigeminal neuralgia, face pain, and emotions

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 have been some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we humans with facial pain can communicate orally but 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 disability. 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.


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...

God bless you.

Trigeminal neuralgia: the Valley of the Shadow

Many of us have heard, read, or prayed the 23rd Psalm. The passage is often comforting to people who are struggling with pain or illness. Here's the part I like best, from verse four:  

  

Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me.

When I experienced the electrifying pain of trigeminal neuralgia, I prayed to die. And this portion of the verse had new meaning for me. I was in the shadow of death, I reasoned, because I wanted to die. Yet the pain held no sting of death, and I felt trapped. I was alive but could not live with the pain. It was the darkest valley I've known.

The "shadow of death" lurked while I wanted to die and could not.


It's not unusual for people who have trigeminal neuralgia to think about dying. They want relief from the pain, a pain so overwhelming it doesn't seem that another second of it can be tolerated. I lived in fear, fear of the pain.

People who have not experienced trigeminal neuralgia often notice that someone who has TN is depressed. Sometimes onlookers think the depression has caused the pain, but people who have TN know differently. It's the pain and the hopelessness that causes the sorrow.


Let's examine the second part of the quotation. I will fear no evil. It takes guts to have such tremendous pain, to stare it in the face and refuse to fear it. But we can do it. For thou art with me. We don't walk through our valleys alone, and in this we have our hope.

We cannot get better without hope, and if we are afraid, hope eludes us. Let's believe. Together and with the hope of our Lord, we can face fear and cling to hope.

Have you experienced fear or depression along with your pain? I'd love to hear from you.

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Trigeminal neuralgia, orofacial pain, and anxiety

If you have trigeminal neuralgia, neuropathic or atypical face pain, or orofacial pain, chances are that you have experienced anxiety. Some people think of anxiety as nervousness or a feeling of panic. It can escalate when negative thoughts or "what ifs" become frequent or won't go away. It's important to mention these feelings to your physician or medical practitioner.



Face pain can storm like a thundercloud, bringing "what ifs" into our lives. It's really important to recognize anxiety when it begins to manifest itself. There are a number of things that can be done.

Your physician may want to prescribe an anti-anxiety medication. If you are hesitant to take medication for anxiety, you may want to see a counselor who can help you with cognitive behavioral therapy (CBT). CBT works for many individuals because it helps them train their thought patterns and does not introduce more medication into the body.

We hear a lot about "natural" approaches to illness. Some people get relief through massage or other types of integrative medical techniques. Herbal remedies are also sometimes helpful. Sometimes seeing an upper cervical chiropractor (UCC) can also help with anxiety as well as the face pain itself.

Addressing anxiety is important. These feelings sends signals to the brain, and they can actually trigger more pain. Anxiety is common to people with facial pain. You're not alone in this journey. God bless you.