...and so begins the NEXT CHAPTER with the text "5 pages sent"...my info packet is now on the fax machine inside the Center for Trigeminal Neuralgia at Johns Hopkins. [This begins the process to determine if I am a candidate for the highly invasive MVD brain surgery that could potentially cure this for good (or of course, could leave me worse off, numb and with lazy, hanging face...either way I need to find out now if its an option).]
Meanwhile, I will need your support more than ever to get through this next chapter. I am seeking positive oriented folks to be on my "team" to help generate a massive amount of connected positive thought and positive energy to propel me through this.
Id love to tell you things are going well, but the reality is that things are "changing" and not for the better. The TN episodes have evolved into a binary condition where its nearly completely off to being fully ON (spiking to 9 of 10 levels on the pain scale). So many have asked to understand what it feels like and I always thought it just wasn't worth sharing, but now as I enter this next chapter, it is time. So, if you do not want to know, then this is the time where you click away. The following is what resides under "describe the pain" section of my package that is now on the fax machine at Hopkins:
"Most days it feels as if someone is torturing me by taking a searing hot serrated knife and very slowly moving it back and forth about an inch under my skin between my temple and cheek sending shock like pains down under my teeth (giving me a feeling that I need to pull out the tooth or such to make it stop) as well as sending shocks upwards towards my above my eyes. Sometimes, when I awake and it feels like someone had surgically implanted razor blades above my cheek area and anytime I do anything the blades move very slightly sending the shocking/searing sensations in multiple directions. Further, I often start to think that someone out there must have some sort of voodoo doll and they are constantly sticking it with pins on the right side of its head/face. The pain episodes get so intense that I can feel shivers/shakes throughout body in all my joints and if I don’t get my mind super busy (i.e., distract my brain) quickly, I can spiral downwards in negative thoughts coupled with the intense pain to the point where I actually pass out. Also, it feels like some else has some sort of remote dial and dials up and down the pain shocks throughout the day. All pain is only on the right side of my head/face.
4 weeks ago (aprx 4th of July) the pain pattern changed. Previously, as long as I maintained my strict Gabapentin/Tramadol regimen I would hover between a 4 and 7 on the pain scale. Now, I may have a good day where I spend a good bit of the day dialed way down to 2, then out of nowhere it skyrockets to a 9 (and sometimes as previously mentioned to 10 where it’s at the point where I pass out). I cannot control this pattern or the level of pain, and it is now affecting my quality of life along with anyone/everyone that spends any significant amount of time with me. I need your help. "
Be Well People and just know that I will NEVER give up fighting here, but from time to time (and this is really hard for me to ask for) I just may need your help.
Cheers, Albee Aug. 6th, 2012 PS No more TN health updates for awhile (back to fun ones :)!!! This TN first appeared the day after my bday last year so I am NOT about to memorialize that event, which would certainly go and ruin my Bday every year until this is either resolved or I die fighting...
Awhile back kc dancer kc posted the following song by Carly Simon. When she sings "you" substitute "Living with TN Support Group" Take a time out and have some fun. And keep those updates coming. They help all of us.