Dear Sarah
big sigh! where to begin? documenting all that I have been through the last 21 years would certainly make for a good read . . .
I am surprised that not many here, are, or have been prescribed tegretol
as it it usually the first line drug of choice.
Usually ■■■■■■■■ mg daily has managed the condition ( on and off several months at a time, until two years ago . . . when 2700-3000 ( toxic dosage ) clearly did not help.
I felt that even those in healthcare who understood my pain had abandoned me. I was at the end of a tree limb all alone.
I have been told from day one and as recently as summer of '08 that I am not a candiate for surgery. Mri’s come back normal. Acupuncture has helped in the past, if started in th early stages.
I’ve learned to begin mega doses of tegretol asap, at the first jolt.
Tegretol is not working any longer. My body has become accustomed
to the drug. It was all that I knew. My neurolgist suggested I switch to lamotrigine (summer '08) 350mg daily and to wean off the tegretol ( I’m down to 500mg now. I was told the tegretol was starting to produce irreversable heart and liver damge, and my sodium was down to 29, so I was prone to a heartattack /coma or seizure at any given moment.
Hmmm, how does one take news like that? I told my GP that at least the TN would end 
Dear Sarah I hope and pray all does well for you. I’ve heard many would it again if necessary, regardless.
I have had total remission once for a year, and once for 18 months.
I felt free , and that the rest of the world took for granted how precious a simple painfree breath is!
That how I view things. Those in pain and those without pain, and those without pain should just shut up. They don’t know lucky they are!
The combination above seems to be working. I’ve been totally painfree since mid August / Or I could be in remission and the drugs are covering
masking that. I will continue to reduce the tegretol, and cross my fingers.
Sorry to be such a bore. After all you did ask.
When the doctor on call at the emergency told me what I have and that I will have this the rest of my life, and it would only get worse . . . I heard the words I didn’t believe it.
This is my first online email ever.
miss a