Every time someone asks me to explain Trigeminal Neuralgia to them, I find myself at a loss. How do you explain something so evil, mysterious, and invisible? How do you describe the lightening shocks of horrendous pain that could strike at any moment? And when they do, they are like being hit in the face with a policeman's taser gun, over and over again, until the attack subsides. Which could last anywhere from several minutes, to a week or longer. How do I describle the hot, achy, constant searing pain that is always, ALWAYS, present. How I live with a fear of the the wind, as the touch of the slightest breeze feels like someone is throwing acid on my face. Putting on makeup has become a chore I do while holding my breath. I guess I think if I hold my breath, the makeup brush won't hurt so bad. I switched to a very expensive mineral makeup as it is not as heavy and I don't feel the pain from it ALL DAY LONG. How certain weird things trigger the attacks, like chocolate, milk shakes, chewing gum. How do I explain that it feels like each and every one of my teeth are vibrating in their sockets? How my main trigger point is in the gumline above my left top front tooth so biting into anything has become something of the past. Now all food has to be torn into bite size pieces. How do you explain the constant fear of the next attack, of shutting yourself completely off from the world, because someone might hug you too tight and bump your cheek with their shoulder? How do I describe the heartbreaking need to keep my distance when my kids are wanting to hug and snuggle, because in their childish squirmy way, they might bump mommy's face and start another episode of pain? Of offering my right cheek to a goodnight kiss from my husband, because my mouth hurts too much to kiss him on the mouth. How do I get all that accross? By saying, it hurts, but I'll be ok. Then the tirade of depression and anxiety starts another cycle as I become more and more closed off to the "real" world of healthy people.
So the doctor tells me that feeling this way is completely normal and writes yet another prescription. He tells me that they call this the "suicide disease" because so many cannot take the constant pain and isolation. Well, I completely understand that, though I have already been through chronic depression, so it's nothing new for me. I have to disagree with him though. Yea, the pain sometimes gets so bad that you feel like you just can't go on, but I think calling it the "Hell's Plague" would be a better moniker for the condition. How do you describe Hell? The Bible gives us very vivid descriptions of parts of Hell, enough for me to NOT want to go there, that's for sure! I feel this condition has to be bred from the devil himself. It has been the salt to every wound I've carried from my past, fed every fear, taken me from all I've loved. Hell's Plague. So how does the medical community treat this? With fear and trepidation. There is just so much they don't yet understand. Too many variables to make a certain, concrete treatment. I have been on 4 different kinds of pain medications which are all known as anti-siezure meds. This current one controls the pain about 80%. But along with that little reprieve comes all the side effects of a toxic poison. It has stolen my IQ and my memory. My memory has become like that of an Alzheimer's patients. Some days or on some things I can still remember, but I have difficulty remembering my youngest child's name. I have just started calling him Bubba. I will have to ask to be reminded over and over "What were we talking about?" in every conversation about every 10 minutes or so. Sometimes, I will have what I call "black moments" where I feel as if I just woke up and don't know where I am or what I'm doing. This has even happened while driving. I will completely forget about paying bills, turning in field trip money, or my kindergartener's big project due. I write down EVERYTHING, then forget where I put the paper. I have really struggled writing this note, as I sometimes forget where the keys are on my keyboard and have to regress back to "hunt and peck" til my mind clears. I have unbelievable insomnia which turns into zombie mode during the day. My joints and bones ache constantly and sometimes I get cramps in the joints in my hands and feet. Still, the medicine keeps away the dreadful taser attacks for the most part. After a few weeks on them, I have to calll the neurologist and have them adjust my prescription up again to try and fight it some more. I am 36. This isn't how I saw my life at this age. Hell's Plague. Where do I go from here?
In two weeks, I will travel to Duke University in Durham, NC to undergo MVD surgery. Not even gonna try to type that all out, just trust me its in my brain. They will drill a hole in the back of my head and by working with the Trigeminal nerve and seeking out any offending veins that might be squeezing of crossing it, hopefully will end my battle with TN. The surgery is invasive, but the reward will be great. IF it's a success. If it's a failure, there is little else that would give me hope for a pain free life. So, I carry all my eggs in this basket.
Having said all that, please don't misunderstand me. I am not bitter, and I do not ask "why me?". This is an ugly, evil condition that has robbed my way of life, but it can NOT steal my joy. God has given me many mountains to climb, but none as high as this one. But after each attack, I feel stronger and my faith in the Lord is Stronger. He has allowed me to have it, but He is walking it with me. This weekend, as we watched all the Easter shows that showed the crucifixion and the suffering He went through, I had to wonder. All the nail piercings, had to effect his nervous system. I bet he knew this pain. And He knew it only for me. So I will go on, and pray my surgery is a success, but if it's not, it's ok. Don't pity me. I carry it with Him. No it's not how I saw myself at 36, but this is who I am, and I refuse to let that devil get the best of me over this pain. I will hide behind the cross and let my God fight it for me. My joy is mine, and giving it up is a conscious choice. I refuse to let it go, and I will climb this mountain on the back of Jesus and give Him the glory when I reach the top. :D