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. 

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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!

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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?

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Sleep: Who's got my number?

So many people who have trigeminal neuralgia and other types of facial pain experience discomfort when they lie down. We fight with our pillows, and sleep can be difficult to attain.

Finding my right pillow took years, and if you are interested in learning more about the rattan pillow that works for me, you can find it using the Google search bar that is embedded in my blog. But comfort requires more than a pillow. One's bed is also important.

My daughter and her husband love their Sleep Number Bed, so I decided to give it a try. I visited the store several times, trying to get just the right mattress, the perfect number. My first night, I awoke several times. My right arm kept going numb. I have a lot of different symptoms, but this was my first encounter with arm numbness.  The next morning, I ached from head to toe: head, neck, shoulder, hip, knee, and ankle.

According to the purchase agreement, I had to wait 30 days before sending the bed back. It was packaged up, and in all I spent approximately $380 for shipping. Then I waited more than 30 days for our refund- quite a few more days.

I've noticed that the air mattress beds, similar to Sleep Number, are being stocked in hotels across the country. Now before I book a room, I call the property to ensure that a traditional mattress is there.

I'd like to reiterate that my daughter and her husband are happy with their Sleep Number bed. But I had terrible discomfort three days after spending one night on this type of system. Perhaps there is a perfect number for me, but I am not willing to go through the pain of finding it.

My money was refunded and we have purchased another bed. I'll be blogging about that experience next.

I'd love to hear about your experience. What type of mattress works for you?

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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.

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Trigeminal neuralgia and the National Day of Prayer

When I was suffering with the "lightening strikes" of trigeminal neuralgia, I did a lot of praying as well as some bargaining with God. One of the things I promised Him was that I would be grateful forever if He would take the pain.

In my opinion, bargaining with God is ineffective. But when one is desperate, a variety of tactics are employed. I'm glad the Lord saw my faith and desperation and looked beyond my attempt to make a deal with Him.

Almost every day, I go to a private prayer list and pray for individuals who have facial pain and other types of nerve pain. I call each name aloud. With today being the National Day of Prayer, I wanted to focus the day praying for everyone who has face pain, including people whose names I don't know, whose voices I've never heard, and whose emails I have not read.

My day began with prayer, and I felt uplifted and grateful. Then as the day continued, other things commanded my attention. I've had a week full of medical appointments and trips to the pharmacy. A drugstore in my community closed, and the one I use is bursting with business. The good news, however, is that I have a "no co-pay" card for a prescription.

When the cashier told me that "no co-pay" means that I'm responsible for more than $250.00, I became anxious. She continued to check my options, and I began to pray. But this time I prayed for me. I asked the Lord to remind me how small the current issue really is compared to trigeminal or glossopharyngeal neuralgia. With my car in park and a foot on the brake, I closed my eyes and recalled the pain. I remembered that I am blessed. And if you are someone who is suffering, I remembered you.

Hope is the first step to recovery. If your hope is gone and you would like me to call your name when I pray, please contact me via email.

I am thankful to live in a country that allows us to pray. 

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