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an update

May 28, 2010 - 1 comments









idiopathic onset


post herpetic neuralgia

It's easier to explain my update here than post it as a question since it fits so many categories...

I saw the neurologist this week. My new plan: adding Cymbalta to try and extend the effects of Lyrica so I can get through the day and not have to up the dosage into those crazy high levels that leave me a drooling, stumbling fool.
Although my family finds it pretty funny sometimes when I miss my mouth and spill water on myself or walk into walls or put magic markers in the refrigerator, the clumsiness and memory loss does get annoying. Especially to me! It's only a matter of time before my teenage daughters see this as an advantage and use the old "I told you already and you said it was okay to (fill in the blank.... get a tattoo, stay out all night, use my credit card at the mall, pierce their tongue, etc etc....) You just forgot!" I will have to keep a lookout for the telltale smirk and gleam in their eyes. For now, they are just getting through it all along with me and shaking their heads. We are STILL looking for a missing bag of groceries from a few days ago. I don't even remember putting it away, let alone taking it from my daughter. Guess we'll have to wait until we smell it, haha. (really though, not funny, yuck!)

But back to the doctor appt. One interesting note. After discussing the possibility of getting a titer blood test to see if I had recent shingles exposure we learned a few things:
1. Past one month post infection, it is pretty much too late to get a definitive diagnosis on that. The levels return to post infection state or close to it.
2. Having had a recurrance of chickenpox 3 years ago along with my kids, I was told in no uncertain terms by the neurologist that there is NO way I could develop shingles that fast, it takes several years.

This is GREAT news, because that means that he was right, my "shingles" episode was really a bad initial bout of TN, IDIOPATHIC in nature, meaning it occurred spontaneously, not related to trauma or illness and means my success rate increases and my risk rates lower with any future treatments or surgeries I may elect to have. Before, with my post herpetic onset diagnosis, I was looking at few options at all left to me, gamma knife was OUT and MVD rate was 50/50 success and 40% chance of complicatons and side effects, vs. 90% success/10%side effects/complications.

So kids, I am back in the game. Feeling like there is hope. Drug hope. Future surgery hope. And as always, hope that one day I will just wake up and POOF, this TN will be GONE!!!

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483733 tn?1326802046
by TrudieC, May 28, 2010
Hoping for you too.  My husband has caught on to the memory game and is using it to his advantage.  I'm still trying to learn to write everything down!  Hope those groceries made it to their proper homes.  Glad to see you have some options.  Hugs, Trudie

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