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Talking about TN wasn’t actually on my radar today, but earlier, I was listening to someone speak about having TN. Her experiences brought back so many of my feelings and thoughts from a dark time that I felt compelled to share my thoughts on fear. Listening to her story took me back into that deep dark time in my life and it can be so overwhelming that you have to purge the thoughts and the feelings before you burst. It’s impossible to keep it inside.

Fear is a strange bedfellow. It lurks just below the surface and never goes away. Fear of the next episode. Fear the pain never stops. Fear manifests itself in anxiety and depression. It grows and if it goes unchecked, it will consume you. That is what happens to someone with TN.

Anxiety about fear causes pain. Many people who suffer from TN find temporary pain relief with a wide variety of drugs. That wasn’t so for me. None of the drugs, gabapentin, duloxetine, carbamazepine, vimpat, touched the pain I had, but they did leave me with the gift of memory impairment. While I have continued to read and write to exercise my brain, and it has improved a little bit, sometimes I can’t finish sentences or remember what someone just said in conversation. Things and words just disappear into thin air.

I also had a life-threatening episode caused by the drugs. The drugs caused my body to stop processing anything I ate or drank. My body was a mess. My red and white cells, my hematocrit, and platelet counts plummeted from the worrisome high range to well below normal requiring chemo med adjustments. Two years later, my red and white cells are just creeping over the normal line, my hematocrit is accelerating and my platelets are high but stable and now requiring additional drug adjustments.

A change in weather in the south this time of year comes about almost daily, and with that change, there is a change in the barometric pressure. Hurricane season was especially rough. I was secretly quite happy to evacuate because I knew that staying was going to be a different rough ride for me. The changes in barometric pressure not only cause an increase in pain for the supraorbital nerve in my face, but it also causes pain in my hands where I have severe arthritis. The changes also wreak havoc on the rest of my body.

After five years of limited movement, because just the simple act of walking caused pain to radiate to my face, I am trying to teach my body to accept movement again. I am now 64 years old and it’s more difficult for my body than that of someone years younger and it is rebelling – big time. I have to move constantly or my body stiffens up and my joints rebel. Walking would be nice but unless the weather conditions are perfect, I am limited to exercising inside. I always loved the freshness of the first real cold day; the breeze, the cold. There’s something new in it, as though the world has been reborn. I miss it. The cold and the slightest breeze can now cause excruciating pain to my face. And, no I can’t put a hat on. It is impossible to wear anything that will come in contact with my face.

Most people don’t think twice about scratching their nose or wiping it if they have a cold. That is something that TN sufferers cannot do. The simple act of scratching your nose or wiping your nose will trigger the nerves. And, I feel like I could grow a garden on my forehead because it’s been that long since I have been able to simply wash it. I  cannot touch it. That is pure torture for someone like me who enjoys a clean freshly scrubbed face. People look at us and they can’t comprehend the pain. We look normal, but we aren’t. There’s no other way to put it. So, if you know someone with TN and they can communicate that it’s not really a good day, please DO NOT say, “well, it will go away soon,” or “pray about it,” or “it will get better.” It’s not appreciated. Frankly, it makes me angry. The pain makes me want to slap you and then tell you the pain will stop soon. We know that you have no idea what to say or that you have no idea what these phrases do to us mentally and we don’t hold it against you. I’m just letting you know, just don’t say it. Silence is sometimes golden.

I have spoken about fear but hope is also difficult. It hurts to hope. There’s always hope down deep, but for me, acknowledging hope hurts. This is something normal people do not understand. They are actually baffled and that sometimes leaves you feeling isolated. You hope that things will get better, but with TN the chances of it actually getting better are very small. I look at the word hope differently than I used to.

TN is an invisible disease and you feel invisible when people don’t understand. I hid the pain from my husband for almost two years. When the pain escalated beyond what I could hide, I had to try to explain the pain to him. I no longer had the energy to pretend I was okay when the pain was stripping me of my energy and sanity. I remember the day he came home from playing music at the local nursing home and told me he thought he finally understood. This was a long while after I had tried to explain. He met a woman who had neuropathy in her foot and somehow as she was explaining the pain to him, the light went on and he had an understanding of what I was experiencing. It totally changed him. He could look at me and know exactly the level of pain I was in on almost any given day.

When you live with someone with TN you never know what you will walk in on. I’m sure it is difficult for those around us. When my husband comes through the door, he doesn’t know if I will be cooking and in a good mood, or if I will be sitting in a chair, still as a mouse, with tears running down my face, unable to speak. It’s a crapshoot and that is how you come to see it. It dictates what gets done or not. It dictates if you leave the house or not. It dictates your life. I had cereal for the first time in five years the other night. It was so good. I hadn’t been able to eat cereal because it requires certain mouth movements I couldn’t make due to pain.

My doctor told me on one visit to puree my food. Even she didn’t understand that the tongue and mouth movements, and the fact I couldn’t bear to touch my lips at the time, prevented what seemed like a great solution. There are times when I have to eat food that I can break apart and place in the left side of my mouth. I’ve eaten more peanut butter and crackers than I can shake a stick at. It was a food that I could break apart, place a piece in my mouth, and then let it dissolve. Then, you might think of pudding, but it wouldn’t be a solution for me. While it would be a wonderful food to eat, think of the motions of eating it. You put it on the spoon and then place it in your mouth, using your lips to clean the spoon. For me, opening my mouth – pain, touching lips – pain. Pudding becomes the enemy.

I actually told my husband last night that the next time he felt good and had no normal aches and pains to describe it to me. I don’t remember what it’s like and I’m curious. Isn’t that strange? You try to pretend you are normal, but the aches and pains begin to define you even though you don’t want them to. What is it like to brush your hair off of your forehead and not winch with pain because for just a moment you forgot? What is it like to brush your teeth with abandonment only to trigger the nerve because for a moment there you forgot? What is it like to walk outside and not have to check for wind and cold first?

I began speaking about fear, but as usual, my thoughts led me elsewhere. I try to educate people when I can. Trigeminal Neuralgia is a horrific disease for which there is no cure and little is known despite the fact many people suffer from it.

 

https://mylifeonestoryatatime.com/2021/01/04/the-trigeminal-neuralgia-chronicles-gamma-radiosurgery-part-2/