Hi,
I have posted on the Multiple Sclerosis board before but I am new to this one. (I've had MS for about 6 yrs) I was diagnosed with TN a few days ago...I'm nervous about taking the new medication--Trileptal.
I have had migraine headaches for about the last 10 years where there is a headache and it leaks down into my face and covers my cheek and into my top teeth (one side only). These headaches last up to 5 or 6 days. The medication I was given for that would work for a few hours then it would come back. Last week, I started having these pains in my face without the headache..I thought it was really strange, it was pressure on my cheekbone from the edge of my ear to the edge of my nose. Then the headache kicked in and it has lasted for 11 days now. The neurologist says that it sounds like I am dealing with migraines and TN. I have had some short lived pains across my face and the migraine headaches always involved my eye (needling pains in my eye, I really don't know how I have tolerated it all these years).

Right now, it feels like some pressure from my ear to my cheekbone. Almost like tingling, a change in the sensation. I haven't dealt with electric shock pain...Would this be more like pre-TN symptoms? I really think the neuro is right, I just haven't had all the symptoms that goes with TN. Just general facial pain that lasts for days, not seconds or a bunch of times throughout a day.

Did any of you that suffer from this start out this way? Or was it full tilt pain form day one?

Thanks, any insight would be appreciated. I'm just a little scared.
Melissa

I wish i could help with that question of how it felt when i first got this but ..mine came wham bam from a trailer truck slamming into me from behind. so mine was full blast from the get go. but it surely sounds like you have t.n. and since this illness progresses ..i would say for sure that symptoms would start less and few between then slowly grow and last longer and diffrent issues would come from the onset. if ya get what I meen.
I know others will be by to post soon.
Glad you came here and posted. If you go to the m.s. forum here well ya already know how great this place is and how wonderfull the people here are.
Low pain wishes at you . I think Trileptal may help but usualy one has to bunny hop from one med to the next till one that helps best is found. so hang in there and keep us posted. and check back here cus I am sure tohers will be by to post.
PEACE
BMW

Thanks for your reply BMW.
I've been dealing with all this for a while, I just think it has been misdiagnosed all this time! I've been trying to read everything I can on this subject and it is just a little overwhelming. Seems that I may have more of an atypical TN since it isn't the quick electrical shocks, but long ongoing pain. Today my face is driving me nuts! And my ear hurts, too. Like all around it. My ear has always been sensitive....just another piece of the puzzle.

My neuro says that he considers this a relapse of the MS since it is a new neurological symptom (but I'm telling you guys that it has been going on for all these years I've been dealing with migraines)....so we won't know if I have any new lesions until I have an MRI, which isn't scheduled until Aug 13th. But maybe he is right since the facial pain is presenting in a slightly different way and I'm having stinging pains that crop up in my teeth that last only a few crazy seconds. (I find those episodes to be the scariest!) I've never imagined pain like that in my entire life.

Well, tonight I will start on a low dose of Trileptal (150 mg). Hope it doesn't make me feel sick. I'm a wimp when it comes to new meds!

I'm so glad that TN has its own place on this forum! I had never looked around except at the MS stuff. And I have only been here a few times since I usually post on MSWorld.

I look forward to hearing feedback from more of you here.
Thanks again BMW!
Melissa

Mine started out the way you have described it. I didn't get the lightening bolt attack until I was well into the pre-TN stage. My earliest attacks would be unrelenting and would go on for weeks, then months at a time. Then one day it would just stop. I used to go months between attacks, but the time between got shorter and shorter and now I have it 24/7. I have taken trileptal and had great results from it. I had to stop it due to side effects which I couldn't tolerate.
Take care, Ellena