Tegretol helped with the TN pain but caused other scary pain. My lips were feeling quite itchy at night and early morning, it seemed as though they were swelling during the night and by morning it would go down again. I then soon noticed that my skin was super sensitive, with tiny red spots all over. I just ignored it because I wasn’t having the attacks anymore and that was all that mattered at the time.
It was holiday time and the family had planned this big outing to a beautiful resort where its always hot and there’s a water theme park. They wanted to cancel because I had gotten so sick but I insisted that it was cool and went along. I sat in the sun all day because I couldn't’t get into the pools, afraid of the cold water against my face or someone accidentally knocking me in the face while being in the water or being splashed in the face scared me to death, the possibilities of an attack starting was endless! By the end of the day on the way home I was starving, my hubby bought us burgers, I tried opening my mouth to take a bite and my lips were so sore and burnt from being in the sun that I thought they were going to tear and bleed, I was so frustrated that I threw my burger on the floor in the car and my Hubby and Mum had thought that I had gone crazy. I don’t usually have the windows down in the car but It was so hot and I was so frustrated that I had the windows all the way down and the air blowing hard against my face, I figured that if the breeze causes TN pain then maybe allot of wind hard against the face would make me feel dead, my mind was racing, thinking about everything that happened that day and how everyone else was so happy and here I was thinking how quickly I’d be able to unbuckle my seat belt and jump out the moving car. Every time I thought about my mum in the back seat I stopped myself, but death seemed so inviting and all I could think about was how I could get there sooner...
We got home, I was fighting with Shaun and throwing stuff at him, absolutely not being myself, tried jumping out the window of our double story townhouse. I knew that I was losing it. I went to bed early and the next morning I went to the bathroom and noticed that my lips were yellow, I figured I must’ve eaten cheese crips, I didn’t remember whether I did or not but without giving it another thought I tried to wipe it off my lips, to my horror, I had taken off the whole top layer of my lips and the blood was rolling down my face. I ran to my mum who was sleeping in the guest room and cried that my lips were falling apart; she was scared I could see it in her eyes but she remained calm and got me a wet face towel to try wipe off some blood, but this just took of more pieces of my lips.
My husband then rushed me to a medical facility just up the road where my GP consulted. He saw to me that day and told me I had something called “Stevens Johnson syndrome” which was an allergic reaction to Tegretol. The suicidal thoughts, the super sensitive skin especially to the sun, the swollen lips were all side effects. It was amazing to think that the doctor that prescribed the meds didn't even give me a heads-up and warn me about staying out of the sun. He also didn't tell me that people of Asian decent are most likely to be affected by the worst of the side effects. & Hello! Its as clear as day that I'm Asian, but yeah as I said it was all about the money for him!
My GP asked me to immediately stop taking the tegretol and to go back onto the Neurontin but a higher dosage. He gave me antihistamines and creams to apply to my lips, he asked me to stay out of the sun and to try have allot of liquids seeing how I couldn't’t really move my lips to chew. The next few weeks were horrible. I had to have everything through a straw, which was still difficult because every time I moved my lips just a little it would crack and bleed, I still remember my little sister sitting at the table with me, we were just about to have something to eat and she was watching me, when I looked at her again she was in tears, just looking at me she felt me pain. I couldn't’t leave the house, and when I could eventually chew a little I couldn't’t eat anything with even a pinch of spice because my tongue was so raw it just burned like crazy.
My lips and tongue eventually came right however I still have the spots on my body a year later.