I got dx in Oct..... found trileptal in January-- then found it was making it doubly hard to keep or find a job. So I kept the dose around 600mg mostly because I have some dental work to finish up. But I need SOME cognition - It became my brain against my teeth. I lowered the dose to 150 a day slowly thru neurologist......I chose my brain for a while to get a few volunteer gigs going in my field. After about a month I'm sitting under a ceiling fan cause I'm burning up - but have a blankie on my head like a sheild.
So I'm going back up -- 3 days ago --300 night - 150 am
Anyone know if in a few days my chances are gonna be good that this will pass so I can finish my dental work? If I get breakthru pain on a lower dose, am I doomed that trileptal won't work again?
I would just like ancedotal stories about going up and down on trileptal for type 1 --- while I consult by email with a very competent MVD guru.....
There's no one size fits all answer to your question that I know of Dancer. I do know, however, that it's generally not a wise idea to rapidly and repeatedly cycle drug doses, because breakthrough pain tends to worsen when you do. But the operating term is "tends". Not all patients react the same way and nobody is by definition "doomed" to any particular outcome.
If Trileptal is creating such extreme side effects and you've been on it for long enough to evaluate your body's acclimation to the drug, then it might be a good idea to talk with your neuro about alternatives. Those can be either mono-therapies with other drugs like Neurontin, or combinations of Trileptal or Tegretol with a muscle relaxant or anti-spasmodic agent or general anti-inflammatory drug (backlofen, Naproxin Sodium, others).
No words of wisdom here but just wanted to send you a virtual hug! I know how frustrating it can be to have to choose between the pain or the brain. That is how i’m feeling right now as well.
Are you still seeing the same dentist? if i were you i would cancel all dental work until hell freezzes over… i ended up in my condition from an injection/ tooth extraction also… the main reason i went down and off any drug was because i never found one that really worked very well for the nerve pain i had in my mouth.
Did a patch of lidocane tonight --- it did two things.... it took the pain away - and the lady at the corner chinese place asked what the matter was with my face! It was a suddenly visable syndrome!!! Although I thought people might think my husband hit me or something -- that was a weird feeling : (
On the upside -- I am commited to making an appt. with an MVD specialist in another state - he has emailed me all week, and I have the go ahead from my neurologist...... now just need flying $$$$ - will drive back..... Imagine I will create an MVD diary as others before me. GOAL: Before Halloween!