Well, today is Tuesday April the 14th. It’s 3:54 pm as I begin this here at my home computer in sunny Queensland, Australia.
On March 12th, 2003 I was diagnosed with right sided Trigeminal Neuralgia affecting V2 & V3 and shortly after began a gradual, though ever increasing dosage of Tegretol. From that date through to June 16th, 2007 - any TN attacks were considered by me to be minor compared to what I’d felt prior to my initial diagnosis or non-existent to the point where at attack just felt like that crawling, buzzing kind of numbness one feels.
But after June 16th, 2007 - things changed. That day, was the day I became “bilateral” as now TN had also begun on my left side of my face. It started in V1 and over time also included V2 & V3, with less and less involvement in V1 over the next year or so. However, the Tegretol I took - however much it WAS diminishing pain on my right side, did little to nothing to effect relief on the left side of my face. Pain attacks there were as if I had no medication / treatment at all. My Doctors / specialists would or could do nothing to help me, would shrug their shoulders and in their “sympathy” or “dismay” smile and pat my shoulder as they thanked me for coming by - somehow always making it seem as if I’d just dropped by for a social call.
I have not once, not in the now six years since diagnosis, EVER been offered the aid of a narcotic to at least help in the relief of pain I felt, whether I asked or not ~ regardless of the agony I told my docs I was experiencing, as I was always told that narcotic meds cannot and do not help TN. But this is not why I write today. I am digressing, I tend to do this and hopefully soon my blog may make more sense, so far this is all back story … I have to take my next dose of meds now, so I hope I don’t lose my thought process before I am able to type it down…
Geez, already getting distracted …
Ok, many here know already that I’ve had a rough start to 2009 with the TN. Both myself and my Doctors felt that Tegretol no longer seemed to be working for me. I was getting the most severe and prolonged attacks of TN, for the most part on the left side, but some of these monster attacks were simultaneously including the right side too. Looking back, not a single one of these attacks was exclusively on the right side of my face alone. It was always both sides or just the left side … The way I got these attacks was that bad, the pain referred elsewhere (allodynia) to the point where ER docs thought I was having a heart attack (FYI - it had nothing to do with my heart). My BP, and ECG’s were always normal. Elevated heart rate during attacks, but that’s to be expected. There is a separate story regarding my blood pressure issues but as I say, that’s another story for another day …
So, come February 12th I had an appointment with my Neurologist who advised the start of Gabapentin and the phasing out of the Tegretol as it no longer appeared to be effective. So, by mid March - I was completely off of Tegretol. But here comes the kicker …
By the start of the second week of April (this month obviously), I began having more attacks. Ironically, now the attacks are starting on the right hand side alone… Some days they’re including the left as well, but for the most part - they are right sided only… As before with the right side, they may be prolonged or short lived attacks - this varies … Anyone seeing (thinking) what I am yet??
In Summary:
TN started in my teens
TN diagnosed at age 29 (March 12th, 2003)
On Tegretol - March 2003 to March 2009.
TN became bilateral June 16th, 2007.
Monster left sided or simultaneously bilateral attacks that land me in ER up to twice a week begin December 31st, 2008.
February 12th, 2009 begin Gabapentin + start to phase out Tegretol.
Mid March, 2009 - no longer taking Tegretol.
Mid March, 2009 - Frequency of Lt side & simultaneous bilateral attacks reduced.
* Beginning 2nd week of April, 2009 - Rt sided TN attacks again.
So, I don’t know about you - but in my messed up head, it looks now to me like the Tegretol was only working on the right hand TN, and since taking up Gabapentin the frequency of left sided or simultaneously bilateral TN attacks have reduced and stopping Tegretol has caused the right sided TN to return…
Am I going nuts? Or does anyone think this makes sense? it will of course make sense to me my meds have begun to determine my sanity I believe and because of my working theory I’ve decided to up my Gabapentin from 900mg -> 1200mg / day, and have restarted taking Tegretol and after 1 week since I started taking it, I’m now up to 300mg / day.
Please tell me frankly what you think of my working theory 
Cheers ~ Kerry.
PS: Not bad - I wrote this in less than 1 hour!