Using All Of The Kleenex

   I spent yesterday crying, I mean sobbing my eyes out.

   I went to the new Neurologist, Dr. J. These doctors here at the Neuroscience Group have impeccable reputations. So I have confidence in what they are telling me. After looking at all of my records and spending 2 hours with me, Dr. J explained that my problem started out as 'Intermedius (Ear) Neuralgia', then it went into my geniculate ganglion in my inner ear. From there it went into my neurons in my brains and got scrambled up in my brain then traveled back down and presents itself as Atypical Trigeminal Neuralgia in all 3 Branches. He said this is why no one ever wanted to do Gamma Knife or MVD because they didn't know where to even look.

    The 1st thing I told him is that "I feel as if I was over medicated". He paused and said, "If anything I think you are under medicated". WOW! He gave me a trial rx of Torkendi to take at night. If by Friday I can tolerate that, call back and they will call me in a rx. I said 'What do you mean tolerate?' He said 20% of people lose their words. I already have that problem. But he means seriously. I can't fathom that he is explaining to me exactly what I have and it makes sense. He also said that we will consider IV Therapy in the future.  He chose to do 2 Occipital Nerve Blocks in the back of my skull. He came in with this needle that was as thick as a toothpick and a syringe as long a a pen. He quickly inserts the 1st shot, and all I feel is horrid pain and liquid going into my head for about 10 seconds...then the other side. Then I went to the lab in their building and they took 7 vials of blood.

   Being from John Hopkins, Cleveland Clinic and a Captain in the Air Force as a Neurologist then telling me that he does not know ANYONE who treats Geniculate Ganglionitis. I told him "This sucks" and he said "yes, it does suck". They do not even have a percentage of people who have this it is so rare. So, basically it does not sound like it is not going to get fixed. This may sound like a pity party for me but how much more can I take? Last night G (my therapist from Vegas) texted me and ask how everything was going and if I was ok? I wrote her back and said that she must be psychic because I needed her.

   I made all of my phone calls to family then it was dinner time. Since I can't swallow much at a time and have to take a pill with each bite. I must have took too big of a bite and started choking. I couldn't breath, just gagging. Finally my food and pill came up. My god this is all coming on so fast it's hard to handle.

   I went to my Pain Management office today. The final decision there, was that they are finally weaning me down on the Oxycodone (so no more narcotics), back on the Clonidine for the withdrawal symptoms. Then in a month I'll finally be off all pain meds. Then I'll see then back in about 6 months. But I'll be under the care of the Gastro and Neuro Docs from now on.