I have just joined this site. I live in Sydney, Australia.
The (I just refuse to own it as "my") Type 1 TN pain started from the age of 39 and I have had it for 8 years.
It travelled along V3 for the first few years, then V2, then V1 and 2 so it's had its fun.
As I can see for others here, as the years have passed, I have spent more time with it than without it.
Tegretol worked incredibly well for the first few years although I have never gotten used to the 'brain fog'. It began to fail after 4 years. I was put on Lyrica but that did not work. It decreased the attacks some but not all and I felt incredibly "drunk" on it (without the fun of getting to that state!) I started Tegretol again which seemed to work for a while after a break from it.
In the last 18 months, it became so bad that stepping on my left foot or reaching out for something with my left arm fully extended would set it off and I had to be hospitalised. The Tegretol had well and truly failed. I was then put on Neurontin which worked up until I was lucky enough to have had the MVD at the end of April but to my incredible disappointment, I experienced the pain whilst in ICU/recovery. I don't know if I am one of the unlucky souls for whom this procedure did not work.
It seemed sporadic. One day, no pain, the next some, the next what felt like on and off all day, the next again - nothing.
I was asked to begin tapering off the medication slowly. I went from 800mg daily and down to 300mg with no pain. I'm sure people on this board can really appreciate how exciting that was. I was beginning to think 8 years of hell was finally over.
And then last Friday it returned with a vengeance - and all three branches which I had never experienced before. Hell. Absolute Hell. I called the Neurosurgeon who suggested I go back to the full dose of Neurontin pre-surgery and try tapering again in 4 weeks. I have brain fog again. I want my brain back.
Can anyone here pls give me their thoughts? their similar experiences? I thought if nothing was touching the nerve root then technically there should be no pain. I don't understand this and am wondering if the MVD worked or not. I would be grateful for any enlightenment.
I will keep reading across this site. I just thought I would type this out before I get sleepy. The Neurontin makes me tired as well. I can't complain - the full dose has kept the attacks at bay so far...
thank you. Bel