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The past year and a half I have had recurring bouts of Trigeminal Neuralgia. For me, the nerves on the right side of my face are the nerves affected. The Wikipedia link above has a pretty accurate description. TN pain has been described as one of the worst pains on earth and I think that description aptly describes it. There is no known reason for this to occur, nor is there a cure. There has been some success with drugs and cranial surgery in decreasing the pain, but it may or may not be a permanent solution for most people. The first time I experience TN, I didn’t take medication. I wasn’t sure what it was before talking with a friend. The pain lasted for about six weeks, but I was able to ride it out. The shocks of pain were sporadic and not as bothersome as later bouts. At times, it felt as though a spider web was being spun on my face just under the skin. The many nerves coming from the main nerve feeding that part of my face seemed to come alive. The second bout with TN was a little different from the first.

One night as I washing dishes, the nerve was doing “its thing” and pulsing but then for no reason, began a continuous pulse that brought about excruciating pain. The pain was so great that all I could do was scream. I am not sure how long it lasted, probably just seconds. The pain was so intense, it felt as though it went on forever. It was scary and left me shaken. All I could think was I never want to experience that pain again. Every little shock from the nerve after that incident filled me with anxiety. I experienced the same convulsing pain again the next morning, only it was even worse than the night before. Again, I was reduced to screaming. In the moment, I didn’t think the pain would stop. You can only scream for it to stop; it is paralyzing. Once it stopped, all I could do was sit and cry. The episode left me full of anxiety that it would happen again and there was nothing I could do to prevent it.

At this time, I still had not done much research on Trigeminal Neuralgia. My husband had an afternoon appointment with our doctor and I told him about the episodes and asked him not to let me forget to talk to her. He was greatly upset by my mental state. I was really frightened and full of anxiety.

I was barely holding it together, and just as I had started crying when I relayed the episodes to my husband, I did so once again when speaking with my doctor. She said that she had heard of people who suffered so much pain that surgery was called for. She explained that the nerve begins at the brain and comes through the skull to the face where it then divides into three main nerves – one to the upper, middle, and lower part of the face. The nerve can sometimes kink or suffer irritation at the point it travels through the bone. She prescribed Gabapentin, which is an anticonvulsants drug used for individuals with epilepsy.

It was just my luck that when I went to the pharmacy to fill the prescription, they said the pharmacy was out and would not receive a shipment in until Thursday evening. This was Tuesday afternoon. I was so distraught that as I was explaining to the girl why I needed the drug, I began crying. It was at that point, she told me to wait while she checked to see if they had an emergency supply to last until the shipment came in. She came back with the entire prescription – 90 pills. Later, I would wonder why did they keep an emergency stash of this drug because it is a drug that you need to build up the dose gradually and then wean yourself off at a gradual pace. It didn’t make sense. I was just thrilled to have the meds.

This was my first experience with Gabapentin. I did not suffer from any side effects and it took the edge off of the nerve pain and the pain eventually went away and I was able to stop taking the drug. With the next episode of pain several weeks later, I began taking the drug again. I was suffering from a severe sinus infection which seemed to irritate the nerve. Once I had reached the maximum dosage prescribed by my doctor, I began to notice side effects. I was experiencing memory loss and having trouble following and participating in conversations and I was slurring words. I ended up in Urgent Care and in talking things out with the doctor, we decided to do a course of steroids and a shot to try to get my sinus problems under control so I could get off of the gabapentin.

That was in June, July, and August of 2018. The side effects began to wear off around August. It was scary. I thought that this must be the onset of Alzheimer’s must feel. You can’t remember things. You have trouble pulling words from your mind for conversation. I, at least knew that the medication was causing this and hopefully the effects would not be permanent. I experienced healing and was relatively pain-free until Christmas when I once again became ill with a sinus infection. I also realized as I was looking at the medical charting I do that I was sick all 365 days of 2018. It began after the new year with the news my Leukemia had reached a point where my doctor wanted to begin me on a drug regimen. (I had a bone marrow biopsy in December 2017.) I contracted the flu (ran a fever over 102 for three days) which I have never in my life had. I then got a second opinion on the Leukemia diagnosis and treatment at the Mayo Clinic. I began drug treatment in April and more sinus infections and the bouts with TN followed. (The Leukemia and drugs affect my immune system making me susceptible to the slightest infection.)

The trigeminal nerve pain came back with a vengeance in December and quite different from the previous bouts. This time, the nerve kept up a constant pinging in my face with no downtime. During the previous bouts, the nerve would ping and stop, sometimes with multiple pings, but stopping with a little downtime. It seemed as though my face should have been black and blue from the bruising. I felt like someone had taken up boxing and was using my face as the punching bag. I ended up in urgent care and began another regimen of steroid shots and meds to once again (hopefully) gain an upper hand on the sinus problems. The weather finally cleared up and it was cool and sunny. That alone helped with the sinus thing, which in turn seemed to help with the nerve pain. Maybe it was just the nice weather that made everything seem a little better.

(My husband and I were joking to each other that Christmas dinner was a crap shoot because neither one of us could taste a single thing due to sickness, yet we cooked. He has been sick since the beginning of December and had doctor appointments and a cat scan of his sinuses. The weather here in the South has been cold, wet, rainy, hot, cold, wet, rainy, and repeat. Anyone suffering from sinus problems has not had an easy time of it. )

The reprieve from weather and pain didn’t last and the nerve became really irritated. I could not eat, drink, or talk without severe pain. This made taking my meds difficult. It was almost unbearable to wash my face and brushing the teeth on the right side of my face wasn’t going to happen. Since Christmas, I have had constant pain in my face and until this past Sunday, could not hold a conversation due to the pain. I also didn’t eat or drink anything substantial for almost two weeks. Any facial movement caused excruciating pain that I can’t begin to describe. I had no choice but to begin taking Gabapentin again, but I refuse to take more than a low dose. I cannot risk the side effects. And then add to the mix, the anxiety that I experience from fear that it will convulse again.

Due to the pain, I have been in a dark place and last night, exhausted from pain and staring at the meds in front of me, lacking the courage to put those same medications, the ones that help to prolong my life, in my mouth and endure the ensuing pain to take a simple drink to swallow them, I stood and cried. I was so tired and in so much pain and so tired of the pain, I couldn’t find the courage to move. I don’t know how long I stood there with tears running down my face, hoping for a break in the pain, the courage to pick up the cup of water and the meds and take them. I did finally pick up the glass of water and the cup of meds and I swallowed them and I endured the pain.

I have tried to never question God about why me? I didn’t ask why me as I was raised by a narcissistic mother. I didn’t ask why me when I spent nearly twenty years in an abusive marriage. I didn’t ask why me when my children were alienated from me. I didn’t ask why me as I’ve suffered through twenty years of pain and desolation from not having my children in my life. I didn’t ask why me when I was diagnosed with Leukemia. I didn’t ask why me when I was diagnosed with Trigeminal Neuralgia. But, last night, I asked, why me? I ask why me for everything as I could no longer hold back the tears and the pain that had overtaken me. I was angry and tired and in pain. I was powerless and it was in that powerlessness that I realized that God was right there with me, as He has always been. It was then when I was feeling most abandoned, that I felt Him. It was when I could no longer see a light at the end of the tunnel, when I wished to fall asleep and not wake up, that He reached out. It was when I asked why? I asked why as I sobbed with a broken heart and with a broken spirit. As a friend once told me, offer up your pain for the forgotten souls in Purgatory. I always try to do this, but last night, I felt my pain offer me up. And, while I slept, God picked up my cross, the cross that in that moment, I could no longer bear.

This morning as I woke up, I did as I always do. I thanked God for the night’s rest. I had no idea what the day would bring, but saying thanks is the first thing that enters my mind each day. I had no idea if I would have to find the courage to take my morning meds as that simple act would again bring on excruciating pain or would I be spared, at least for the morning. In my brokenness, God has given me a reprieve. I did not experience the horrific pain that has accompanied this morning ritual for so long. I will not ask for how long. I will take it as it comes and I will give thanks for this simple gesture.

Psalm 34:18 The LORD is near to the brokenhearted and saves the crushed in spirit.

Psalm 18:2 The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold.