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The Monster in My Face: What the Pain of Trigeminal Neuralgia Feels Like

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I am a big-time lover of everything scary. Scary movies, haunted houses, going to get the mail in my PJs, you know…scary. I still remember watching scary movies with my best friend Rachel when we were little girls. We would huddle up together in one chair, our eyes closed through most of the movie and our arms latched together.

Several years ago I sat watching a scary movie with my spouse and a thought came into my mind. If you are a horror movie fan, perhaps you have wondered the same at some point. There was a scene in the movie that was so horrible I had to turn away. One of the characters in the movie was being tortured. They were screaming and thrashing and eventually they passed out from the severe pain they were enduring. As I watched this movie, I couldn’t help but wonder, what would that kind of pain feel like?

I of course would never want to experience such pain as being tortured, but couldn’t help to wonder what is the worst pain a person can feel? I had worked in emergency medicine for years and had seen people in severe pain, but still I wondered how severe pain could really become. This was just a fleeting thought as I watched the movie. What I didn’t know at that moment was that one day, I would get to find out.

Up until that point in my life, I had already struggled with my own moments of severe pain. I have several chronic illnesses and have experienced horrible pain from them, as well as the countless procedures I have endured. Pain was not something I was new to by any means.

It was about two and a half years ago when I was first introduced to the monster in my face. I was asleep when suddenly I woke to the most extreme pain to the side of my head. I sat up in bed and thought, “What is happening?” The pain was like nothing I had ever felt before. It went from my left ear down into my mouth and teeth and back up through the top of my face on the left side. It was a constant pain I would describe as burning, electric, throbbing and sharp. You can think about the worst headache you have ever had and multiple that pain by a million. It almost felt as though someone was using a taser on my face over and over while stabbing me with a hot poker. It was absolutely excruciatingly and it wasn’t stopping.

I had pain medication for my other health conditions so I decided to try that but it gave no relief, not even a little. I placed ice packs on my face thinking maybe if my face was numb enough, the pain would go away. It didn’t. I tried to think to myself, “What is happening? I have a medical background – what the heck is happening to me?! Is it a stroke, a brain aneurysm… I don’t think so… it is in my face… but what can cause such severe pain like this?” Every minute that went by felt like an eternity. The pain was absolutely petrifying.

Pain really is an interesting phenomenon. People handle pain in different ways. Labor and delivery nurses will tell you that some women will scream in pain during labor while others will barely make a sound. That does not mean one’s pain is less than another. People just respond to pain differently. For me, I tend to get very quiet when pain is extreme. When I am in severe pain, I will sometimes just shut down. During this attack, tears poured silently down my face as my body began to shake uncontrollably. I wasn’t screaming or yelling for it to stop. Actually, I almost completely lost the ability to speak and could barely think. Finally my spouse said, “I think we need to go the hospital,” and I agreed.

As many people with chronic illness do, I tend to avoid going to the ER at all costs. I would much rather treat my health issues at home whenever possible. However, on this night, I knew I needed help and quickly. This pain was exactly what I would imagine the worst pain in the world would be. I still, to this day, cannot imagine a level of torture that could possibly exceed the absolute agony of this experience.

When we arrived at the hospital my entire body was still shaking uncontrollably and my vital signs were very high. When asked what pain level I was at, I was able to say, “I am way beyond a 10 and I know 10.” In the ER they continued to give me more pain medications which still didn’t even touch the pain. I remember that feeling of absolute terror I had that night concerned as to why the medications weren’t helping and wondering if this pain would ever stop. I begged for them to please just put me to sleep, knock me out with a hammer, something, anything, just please make it stop. This went on for hours. The physician also had no idea what this could be, which made it even more frightening. Being in as much pain as I was, I was unable to really communicate.

However, looking back now, I realize there was so much more the ER physician could have and should have done. He never ordered a neurologist consult or a scan of my head (even though I had a history of brain lesions). I remember looking back at my spouse sitting in a chair near me, also with tears streaming down, unable to help me and feeling so helpless. All of the drugs they had given me did make me feel “loopy” but they did nothing for the pain. It truly felt like being in a horror movie or like a nightmare I could not wake from. About six hours later, which felt like an eternity, almost as quickly as it had started, the pain went away. I left the hospital with no idea what had caused this severe attack of pain or if it would come back.

It was about a week or two later when I had an appointment with another physician (unrelated) and I told her of my situation, symptoms, etc. She looked at me and said, “That sounds just like trigeminal neuralgia.” I remember saying, “It sounds like  tri…ja…what a what?” Even though I had worked in the medical field, I had no idea what that was. She rolled her stool over to me and pulled up the symptoms on her phone and handed it to me. As I read the symptoms, I gasped and said to her, “Oh my gosh, that’s it. That’s exactly it!”

I remember the look on her face in that moment. I have seen that look before from doctors. It was the look of bad news. She sighed with her head tilted down and said, “I am sorry.” She told me if it happened again to go straight to the hospital floor (not ER) and have them page her. That was the plan until I could see my neurologist. She gave me some online sites to research and she walked me out with her hand on my shoulder. I knew at that moment this was not good.

When I got home, I began to research more about this disease, trigeminal neuralgia. My stomach turned and my heart pounded as I read through the different online descriptions. Phrases I read included:

“Trigeminal neuralgia (TN) is considered to be one of the most painful afflictions known to medical practice.”

“Trigeminal neuralgia also known as tic douloureux, sometimes is described as the most excruciating pain known to humanity.”

“Of all of the pain conditions that chronic pain patients experience, there are arguably none worse than the pain of trigeminal neuralgia.”

“Often called the ‘suicide disease’ because 25 percent of people with the condition die by suicide.”

I continued to suffer several additional attacks before being seen by my neurologist where I did get the confirmation of trigeminal neuralgia (TN). The trigeminal nerve is the fifth of 12 pairs of cranial nerves in the head. It is the nerve responsible for providing sensation to the face. I have since developed glossopharyngeal neuralgia (GN) on the other side of my face as well. GN is also excruciating and has even affected my airway and my ability to swallow at times. Glossopharyngeal neuralgia is an irritation of the ninth cranial nerve, causing extreme pain in the back of the throat, tongue and ear. I take several medications now that help these conditions but I still get shorter attacks here and there that will stop me dead in my tracks wherever I am. Surgery options are available for some individuals with these terrible diseases but they are very serious surgical procedures.

What I have learned through this experience is that there truly is a pain beyond anything you could ever imagine. A terrorizing monster pain so extreme that the fear of it coming back would exceed that of your worst nightmares. There is a pain so severe that many individuals do consider, and even follow through with, ending their life to make the pain stop.  Although I am proud of myself for treading on through this disease and the many others I have, it causes me great fear and anxiety, worrying when another attack will occur. I have also learned that we as humans can survive through even the most excruciating and most intense pain imaginable. I have.

I now belong to support groups for others with this same disorder. Individuals struggling with this horrible disease really do need support. Most people, including myself up until diagnosis, have never heard of trigeminal neuralgia. People who are afflicted with this horribly painful disease need love, support, understanding and better options for treatment. More physicians (such as the one I had in the ER that night) need to be informed regarding the symptoms of trigeminal neuralgia.

If you know someone with this disease, please become educated on what they are going through and provide them with whatever support you can. If they tell you they can’t take it anymore, please believe them and help them get support. As many chronic illnesses are, trigeminal neuralgia is an invisible illness on the outside. Sometimes what people cannot see, they do not believe. Having struggled with this disease myself, I can tell you the pain from this disease is very real and beyond anything you could imagine. The people who struggle through this disease are so incredibly strong and have become an inspiration to me.

To everyone struggling with TN, I send you strength to keep carrying on. I know your pain and I am so sorry for your struggling. We can and will get through this together. We cannot let the monster win. After all, the best horror movie endings are the ones where there’s that one person who gets away. They may be broken and bleeding, but they defeat. They survive.

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Thinkstock photo via supershabashnyi.

Originally published: September 25, 2017
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