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Trigeminal Neuralgia: How my life is forever changed.
Posted on August 01 2014
It's been about a month since being diagnosed with Trigeminal Neuralgia. And if you're reading this you're probably wondering "What is Trigeminal Neuralgia?" TN is a nerve disorder that causes severe pain in parts of the face, mainly on one side. The cause of it is often unknown, but mainly pressure on the trigeminal nerve is to blame. For most people who suffer from TN it's a life long battle.
It all started about a month ago when I began to notice that my jaw felt tender. At first, I didn't really pay much attention to it because sometimes at night I tend to grind my teeth. As each day progressed during that week it got more tender and to where I was living off soup and foods that I could just swallow without chewing, unless I wanted to just chew my food on the left side of my mouth. My mom thought I should have my dentist check my teeth just in case a dental issue was to blame. So on Friday I went to the dentist. X-rays, a bite test, and a cleaning were done and my teeth were completely healthy! I was confused in a sense because at times I seriously felt like I had a tooth ache. I mean don't get me wrong, I was happy to know my teeth were happy, but something just seemed off. And I was soon to realize that in a matter of hours... Later that night I had my first episode of electric pain. Yes, it literally feels like electric stabbing pain!! It triggered the right side of my lower jaw/ear canal, and the nerves within my teeth on the right side of my face. Since it was a Saturday most doctor's offices were closed so my mom thought of acupuncture. I never had acupuncture done, but I was optimistic. I just wanted some type of relief and I didn't care where it would come from. My mom got me an appointment for the following day. I had more episodes of pain throughout the day, began to become more numerous and the pain would last longer. I remember just sitting there crying in complete agony while my mom tried to calm me down. Sunday came, I got no sleep whatsoever, and I went to the acupuncturist. I had a variety of small needles poked into me. Part of me found it quite calming. After my session I was still in pain, which broke my mom's heart because she hated seeing me like this. I went home and the pain got insanely worse. My mom called the acupuncturist and told him what was going on, he felt bad so he us to come back the same day and he would try another technique using heat. I went back and couldn't make it through the session. I was in so much pain! It pained my mom so much to see me just crying and shaking in agony. She held me in that room for hours, up until the acupuncturist closed for the day. At this point, being in so much pain I was scared. Scared what was happening to me. My mom told me that if it wasn't going to get any better that I would have to go to the ER. I didn't like that idea. I have bad anxiety regarding hospitals, doctor's offices, etc. That night the episodes were so bad that I was literally trembling in pain. My whole right side of my face hurt. I could barely talk because opening my mouth triggered the pain in the right side of my jaw bone. It felt like someone was drilling right into my teeth, mainly the molars. Electric pain constantly stabbing in your ear canal, like that something worse than an inner ear infection was invented. At this point both my parents couldn't handle seeing me like this. I went to my room and turned all the lights out because darkness calms me during my anxiety flare ups so I thought maybe it would help. My mom came in after me and just held me/stroked my back. Even though my mom was making a wonderful attempt at calming me down the pain wasn't going away. She thought maybe a drive around town with my boyfriend would help because I like going for drives. When my boyfriend got off work we all went, my dad stayed home though. Sad to say, the drive around town wasn't a success. Every pot hole or bump in the road triggered a massive pain. At this point I feel like I am living in one big nightmare called hell because I've tried everything: Ice, Heat, acupuncture, calming drive, my mom trying to calm me, "over the counter" pain pills, etc. So around 3/4am I was admitted into the ER. My mom took me and because I was in pain and scared my heart rate was elevated. I told the nurse what was going on, but she judged it as that I had a heart problem and was having a heart attack. That whole ordeal in triage made it worse (my heart rate and BP were through the roof), my anxiety was to the point I was having a panic attack, and I was in complete pain on the right side of my face. She brought my mom in and sat me in a wheel chair and took me to an emergency room where there were 3 other nurses. I was hooked up to a heart monitor, BP monitor, and IV. The doctor came in, he wasn't much for talking which was fine by me because I didn't want to talk much either. He examined me, heard what I and my mom had to say, had some blood work done, and a chest x-ray when he came to the conclusion that I had Trigeminal Neuralgia on the right side of my face. I remember lying there wondering what that actually was and why this happened to me. As time went on my heart rate calmed down because I was given heavy narcotics which calmed the pain down enough for my heart rate and BP to go down (the pain was still there, just not as intense and persistent). I was given Morphine along with Oxycodone. Around 7am I was released with a prescription of Oxycodone and Tegretol. When I got home I was tired and didn't really feel too well. I wasn't in too much pain though. I had some oatmeal and decided to lay down. Of course, going to sleep was not in my body's interest... I threw up. Throwing up usually isn't pleasant, the Morphine was probably to blame because I have a real sensitive stomach and prior to going to the ER I didn't eat much in days! After that incident I did end up going to sleep and sleep for a good couple of hours. The pain medicine helped out a lot, but I realized I couldn't be on Oxycodone for the rest of my life. I started researching Trigeminal Neuralgia because I never heard of that condition in my life. Sure enough, my symptoms matched. Since that day I have been to countless trips to the doctor's office regarding this condition. I was prescribed a different pain medicine and was told to continue to take the Tegretol. Along a three week period I took these medicines with going back to the doctor as a follow up each week. To me, the medicines felt like a Band-Aid and not a solution. Yes, prescription pain medicine helps ease the pain to a certain degree, but it doesn't take it fully away. Tegretol is suppose to help with the spasms so to say and is a first choice in the beginning stages of treatment. Well, all that has stopped now. About a week ago I got a bad allergic reaction towards both medicines. Hives all over my body and my lips swelled up/hoarseness in voice. It was bad and made me feel even more miserable. Now, I am at a crossroads so to say because I feel helpless in a sense. The types of surgeries for TN have a low percentage in full recovery and is a last resort. Tegretol is the most common medicine prescribed if you have TN. Other brands are basically the same and have the same exact side effects, if not worse. Basically, trial and error.
The truth about writing my story is because I am having a hard time coping with the fact that I have Trigeminal Neuralgia and I want people to be more aware of this condition. I stumbled upon Bravelets looking for support groups and ways to show my awareness for TN. I ordered a bracelet for myself and my mom showing our support for TN. Plus, it supports a great cause and hope for me. Hope for a cure.
It's hard going through everyday life knowing this is my life now. I have more bad days than good days. My anxiety is more persistent because I am scared. Scared of when my next major pain attack will be, scared of the future. I feel like I am consumed by fear now, and by pain. I know it's only been a month, but does time really heal? Time just keeps moving forward. It doesn't stop for anyone, it just keeps moving. I suppose that's what I must do... Be brave. Be brave through the tough times. God knows where I'd be if I wouldn't have a special mom like the woman I do call my mom. She has been the rock through all of this and I'm so thankful for her. And what small percentage of good days that I have and will have I will cherish. Cherish the moments that I'm not in pain and be brave through the times where it feels like hell on Earth.