TN in MS is not from lesions in the neck, but from lesions (probably one lesion) on the fifth cranial nerve, which is the trigeminal one. I'm suffering thru my second bout of this in 4 months, which is why I'm up at 4 in the morning, hoping the meds I have will kick in soon so I can try to sleep again.
I can't take Carbamazapine (Tegretol) because it destroys my blood platelets, so I'm trying to manage on Gabapentin, but will be contacting my neuro in the morning. Last time I had 5 days of IV solumedrol, which worked very well, but steroids in megadoses are hard on one's body and I'd like to avoid these infusions if another med will work.
This issue is far from my first MS symptom, though, as I've had MS for many years now. I thought I'd chime in here anyway.
ess
Together with urinary frequency and earth shattering fatigue TN was one of my first symptoms too. Now bilateral with attacks every now and then but set off in cold winds etc.
Carbamazepine worked really well to treat it but left me feeling even more exhausted so switched to Gabapentin, which works really well with only one significant, but positive, side effect.
TN was also my presenting symptom in January 2013. I'm am still undiagnosed, however at the time my neurologist said that TN can be an initial relapse. I had it for 6 weeks, and thankfully haven't had it since :).
I have TN and was just diagnosed a few months ago at age 52. It was my first symptom and still exists today. My 2 lesions are located at c4 and c5 which impact the cheeks, nose teeth, mouth, etc. I am not in pain. It is more of an annoyance. Nothing triggers it; as it never goes away. I am hoping that with time and meds it will ease up. Hang in there!
Gina
I have the beast, TN. I had no clue what it was when it first started. It was one of my first and early symptoms. It felt like someone was taking a baseball bat to my head if I talked or moved "wrong". Sometimes it would hurt for just a few agonizing minutes and rarely it happened all day. I still have it. My makeup brush sets it off from time to time. I feel your pain!
While this earlier Expert forum is closed, you might find it educational to peruse:
http://www.medhelp.org/forums/Trigeminal-Neuralgia-/show/270