I’ve written about my Trigeminal Neurolgia before and received responses from some who were helped by my journey. My intent is to reach out to others who suffer from TN to let them know that they aren’t alone. This is a disease that isolates you from those who do not have or understand the disease. This is a chronical of the last few weeks. If you are interested in how this disease affects those who suffer from TN, then please continue reading.

In September before we left on a two-week vacation to the Dakotas I had three of what I refer to as episodes. I refer to them as episodes because I don’t know if they really have a name for what they are. I saw someone describe the pain as feeling like someone throwing acid on your face. I would agree. The Tuesday, Wednesday, and Thursday before we left, the trigeminal nerve took on a life of its own. The main nerve began burning my face and as the pain traveled the length of the nerve from the middle of my right cheek to my hairline, the burning spread out like a spider web. The pain resembled what I imagine having acid thrown at you would feel like. The acid would hit the skin and burn out from the spot it first encountered. There are no words to describe the excruciating pain and you can understand why TN is referred to as the Suicide Disease. You lose track of time as the pain is so great it paralyzes you in place. You couldn’t move if you had to. The episodes on Tuesday and Wednesday lasted several minutes and were horrendous. The episode on Thursday was by far the worst and lasted around half an hour. It was the most frightening and terrifying thing I have ever experienced.

I have had pain like this twice before but the episodes were shorter and a couple of days apart, not every day as these were. My husband, thank goodness, has never witnessed these attacks. The Thursday attack changed that. He and a friend had been working on the engines in our houseboat and were testing them out in the bayou that runs by the house. He thought he was having a bad day until he called me. The engines were working perfectly and then completely stopped for no reason that they could determine and they were waiting for another friend to tow them back to the wharf. When he phoned to let me know, he had no idea what he was about to witness and then be helpless to do anything about it.

I had taken a shower and was getting dressed when the pain began. All I can remember is screaming and screaming. I couldn’t move at first. Eventually, I was able to make my way to a chair to sit. The pain kept on and on. I honestly didn’t think it would stop this time. The phone rang and thank goodness it was next to the chair where I sat because it was my husband’s ring tone. All I could get out between the screams I was trying so hard to muffle was, “can’t, talk, pain.” Those short broken words took every ounce of courage and strength I had. Fortunately, he realized right away what was happening. I think the only thing worse than the pain itself, is witnessing someone who loves you stand by helpless. I was thankful he was on the boat. There is nothing anyone can do. You can’t put ice on it. You can’t put heat on it. You can’t rub it. You can’t touch it. There is no drug to stop it. Someone’s presence just compounds it. You have to wait until the pain stops on its own and you can only hope and pray that it does. And although the hard pain lasted about thirty minutes, I sat there with tears running down my face for far longer once the remnants of pain finally began to disappear. It felt like a lifetime before I dared to move. I was so afraid to trigger more pain. I was at a point where I couldn’t take any more pain

The trauma isn’t over once the pain finally subsides. Some of us who have this disease suffer from PTSD. We don’t know when or if the pain will come back and if it does, how we will handle it. I live in constant fear. I was finally able to phone the neurosurgeon’s office Thursday afternoon and he prescribed the drug we had discussed. I am already taking a drug for my Leukemia and the new drug has a lot of the same side effects and they aren’t nice. Some of the side effects I am double-dealing with now are confusion and memory loss. There are a lot of side effects, but these are the two I find most frustrating. Anxiety isn’t too much fun either and this drug complicates it.

Once I began taking Carbamazepine, I did not have any pain for three days. You would think that would put me in a happy place. Instead, I was more afraid of not having pain. Pain has been my constant companion for three years and for it to be gone after three days of painful episodes, it was frightening in a different way and that plays with the mind. My anxiety was through the roof. You wonder when will the pain come back? How bad will it be? Will it be shocks or will it be the spider web? Where will I be when it happens? If my husband is not with me, no one will understand what is happening. Someone might touch my face and think I’m crazy and drug me. Will they see my medical bracelet? Will they take the time to understand the words? All of this might sound bizarre to someone who doesn’t have a clue about this disease, but to someone who suffers from TN, and understands the pain associated with the disease will be nodding their head in agreement.

When you have TN, every move is calculated – every food you eat, every bite you chew, every movement of the toothbrush, every laugh, every single facial movement, wiping your mouth, wiping your nose, sneezing, washing your face, moving bangs off your forehead. Any of these simple movements can bring on excruciating pain. Trigeminal Neuralgia is a hidden disease. It is one, for the most part, that you cannot see except for fleeting flinches from pain on someone’s face as they speak, or move their head and if you don’t look closely, you’ll miss them.

I have been on the drug for about four weeks. I began taking it four days before we left on vacation. My husband woke me up the next morning with the question, “Do you know your name? Do you know my name?” It’s funny now, but it wasn’t then, but it was a reality check. He said by the end of our trip, my memory was better than at the beginning. I think it was due to being together every minute of every day and having constant brain stimulation. He doesn’t normally read the side effects of the meds I take, but his time I handed them over. I told him I wasn’t going to notice some of the side effects so he needed to be aware of what they were.

He’s had nightmares for years that I wander off and he can’t find me. I hope they aren’t coming true. I do, however, have a habit of doing just that. He is notorious for taking his time in reading and looking at things when we are at monuments or in museums and I get bored and wander off. I read and then I’m done and I wander around. This trip I thought he was going to tie a rope to me! There were times he would see me literally turning in circles with a panicked look on my face and he would tell me to calm down and then ask me what I needed. He would walk me through my anxiety. The night we got home I was in the kitchen and I wanted to fix a bowl of cereal. He walked in and I was standing there with the cereal box and almost in tears. Again, he knows what to do. He asked me what I needed and walked me through finding a bowl. Fortunately, it doesn’t happen often and I think I was just tired and overwhelmed, but it is also important to have someone around who understands what is happening and knows how to handle it.

I am literally in a crazy place right now due to my anxiety. And, then factor in the Leukemia and knowing it is almost time for my blood work again – yep, it’s crazyville in my head. I posted a saying on Facebook not so long ago that went something like this – Don’t ask to walk a mile in my shoes, just spend half an hour in my head. So, this is what I felt I needed to write about today. Not the wonderful trip we just returned from, I’ll get back to that soon, but the anxiety and craziness that goes along with having a disease like Trigeminal Neuralgia. If you suffer from TN or know someone who does, please take the time to message me or comment. You are not alone. If you have any questions, please ask. We need to bring awareness to this disease. This is not something I’ll write about often, but it’s part of my life and as the title of my blog leads you to believe, it is My Life. One Story at a Time. and this is one of my stories.

You can read more about TN here and here and here and here.