Thursday, June 19, 2008


I wanted to write you all to again bring to the forfront the disorder/disease of Trigeminal Neuralgia. I have been fighting this for 23 years. TN is called by the Medical Community to be "THE WORST PAIN KNOWN TO MANKIND, THE PAIN IS SUICIDAL".
I have fought this and it is very life altering. The pain is so intense and makes you really give up at times.
I am blessed to know a few who fight this. My doctors are using various injections to help me along with medications. I not only fight this but Post Herpetic Neuralgia in the same area, that is from SHINGLES On the Trigeminal Nerve. So Lyrica works well but the Trigeminal Aspect is quite difficult. I need help for a lot of things in my life. I can't be the mom I want to be, My husband misses the way I used to cook. I fight many side effects from so many drugs.
To those who feel like they have electric pain or a toothache that won't go away, or if you can not tolerate breezes or even a draft or touch to your face, If you get pain so severe when you kiss or even brushing your teeth or eating you might go to a neurologist and ask them to check you out for Trigeminal Neuralgia, It is a Long process to get diagnosed, because they rule out everything else. The pain though is the hallmark. To me it felt like an electric spike with an elephant pounding it into areas of my mouth, head, face. I am doing better with Botulism Toxin injections but that takes me about 3 weeks to recuperate from. There are side effects from that too, I had paralysis of my eye of my mouth, I have had drooping. But as my specialist and I work together and look at reams of info I know it will work because GOD LOVES ME. I honestly do not know how people survive this with NO FAITH or HOPE in GOD. One time I was wailing in pain for hours wanting to die, I phoned my pastor who prayed with me as my husband went to get yet another experimental drugat the hospital,an hour from our home. The LORD guided me to the hammered dulcimer where I plucked out an inspired tune. Then He led me to the electric piano, and I have no formal training.. but a song erupted with chords and orchestration. It sounded like a boat heading toward shore in a stormy ocean.. and I could see the boat would make it safely. When The song ended my husband came in with the medication. The Lord kept me playing in HOPE for hours. I give the glory of my survival to God! HE IS WONDERFUL.
If you fight TN visit Kathy's website Or see the Main TN site.