Thursday, August 26, 2010

Eye: the first division of the trigeminal nerve

Years ago, when I was new to the world of trigeminal neuralgia, I was visiting my neurologist at the Mayo Clinic in Jacksonville. He asked me if I had eye pain, and I was shocked, thinking he could read my mind. I didn't realize that he asked because eye pain is so problematic for people who have trigeminal neuralgia. And until then, I thought the "discomfort" was my imagination or just referred pain from my jaw and cheek.

 Sure, I had seen diagrams of the trigeminal nerve and noticed that one of it's divisions is located in the eye area. But I didn't want to face the reality that my eye might be affected. As time progressed and the pain became worse, my eye bothered me more.

Sometimes I felt as though my eye would pop out. The pressure and the pain were terrible and it made reading difficult, stealing one more ability from me. And isolation spread itself through my life like a cancer that refused to be arrested.

This is where my story of hope begins, hope that someway somehow God would intervene and take trigeminal neuralgia from me. I prayed that I'd have the courage to move forward with a surgery or that the pain would stop. I knew all about TN going into remission, and I asked please Lord. Let it go into remission forever.  In October 2004, the pain left.

I still have jaw joint pain, but I am thankful it's not trigeminal neuralgia. And it was great to begin life again. Socially, it's been difficult. I live in a small town. People had never heard of trigeminal neuralgia, and they thought I was being a drama queen. After all I had been a drama teacher. They never understood the validity of my disability.

Yesterday, I was prescribed contact lenses. Today, unlike yesterday, I've been successful at putting them in and taking them out. This process is easy for some, but I've always been a little nervous about putting eye drops in or getting close to my eye.

After several attempts yesterday to put in my new contacts, I thought I wouldn't be able to stop my strong reflex to blink. But today I got them in just fine. I put one inside out and had to take it out and put it back in again. I know I can do this.

The entire time I struggled with the simple procedure, I kept thinking if I can get through trigeminal neuralgia I can learn to do something simple like put in contact lenses. It gave me the incentive to persist.

The disability known as trigeminal neuralgia causes us all to learn that we are stronger than we imagined. How has the pain helped you recognize your strength? I'd love to hear your thoughts. Comments are welcome.

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Wednesday, August 18, 2010

No chew recipe: reduced fat macaroni and cheese (Gluten-free)

3 cups brown rice pasta, overcooked
1 1/4 cup reduced fat (2% or less) shredded cheddar cheese
2/3 cup nonfat plain Greek yogurt
1 egg white
1 tablespoon grated parmesan cheese
1 tablespoon ground flax seed
1/2 teaspoon sea salt
Nonstick cooking spray

Overcook the pasta until it's very soft and drain well. Let it cool. You can put it in a food processor or blender to chop it into fine pieces or you can use your hands to break the pasta into small pieces. I used my hands because I wanted one less item to clean-important if one is not feeling well.

After the pasta is finely chopped or shredded, add 3/4 cup of cheese and all the other ingredients. Mix well (You can add more cheese if you like, but I used this portion in an effort to control the fat content of the recipe.) 

Spray casserole dish with nonstick cooking spray. I didn't want to heat the oven too long (it's so hot!) so I divided my mixture into two smaller baking dishes (holding two cups each), requiring less cooking time.

If you've divided your items as I did, cook them at 350 degrees for 20 minutes, pull them out of the oven and top with the remaining cheddar cheese.

If you've put your mac and cheese mixture into one casserole dish, you'll need to let it cook 25 to 28 minutes before you top with the cheese.

In less than five minutes (when the cheese melts), your mac and cheese is ready to be taken from the oven. Let it cool for five minutes before serving. Four portions.

I'm eating mine today with tomato wedges because it's a "good chew" day. Although I no longer have pain from trigeminal neuralgia, I still have a temperamental jaw that sometimes does not allow me to chew.

You may notice that I often use ingredients like ground flax seed and nonfat plain Greek yogurt. They're easy to keep on hand and simplify shopping. I like to use brown rice pasta because it is gluten-free, and it has more fiber and texture than white enriched pasta. It's a little more expensive, too. You can also substitute your favorite pasta.

To learn why I prefer Greek yogurt, see a comparison here  . According to the Mayo clinic, ground flax seed is also an excellent way to get fiber and mega-3 fatty acids. Flax seed improves digestion. Flax seed is sometimes used to help reduce total blood cholesterol and low-density lipoprotein (LDL, or "bad") cholesterol levels and, as a result, it may help reduce the risk of heart disease.

You can find other no-chew recipes on my blog by using the Google search tool at the top of this page. I am hoping you will feel better soon. Take good care and may God bless you.

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Wednesday, August 11, 2010

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.

Tuesday, August 3, 2010

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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