Trigeminal Neuralgia Support Group

I just called my neuro for the same thing. I was doing great- started tegretol in January. I was actually going to discuss coming off of it- b/c things were going so well. 5 days ago BAM! I am so upset. I just called the office- waiting for a call back. Good luck- wondering if seasonal allergies might trigger this nonsense? grrrrr.....

Hi Jill ... I don't have allergies but anything is possible. Stay in touch.
Marti

I just read your profile and see that you live in Beverly, MA. I live in central NH but spent nearly 35 years in Newton, MA. Small world.

Did you spend a lot of time outside (and it was windy)? Or maybe you touched/brushed your face? I don't understand it myself. Once I had something actually HIT my face HARD an was in pain, but it went away after an hour. Another time I just scratched my chin and it kept hurting for hours.

As for suggestions: Keep taking your meds! Just because you have an "incident" doesn't mean your medicine isn't working. If there's a chance that you can up your dose/amount you take it, at least until it dies down again, then maybe you could discuss that with your neurologist.

Seasonal allergies may be a culprit. No one has really pointed in that direction, but I've always thought that the fuller our sinus cavities, the more internal pressure? Right? It makes sense to me.

Good luck to both you, GrammieP, and Jill08 in getting past this.

I think in general we build up a resistance to whatever med we take. I started on Tegretol, switched to neurontin and now am on a combination of the two (I like to call it my 'cocktail' ;) and this is all w/in less than a year, so who know what's next???

I get the whammies too. I call them breakthrough attacks and take hydrocodone with ibuprophen in it till the pain becomes somewhat bearable (I have an extremely high pain tolerance) or I knock myself out. In the morning the pain is almost always gone. Doesn't mean it won't come back that evening. I have never been able to figure out my "triggers" that set off an attack, but have noticed that they are more frequent when I let myself get run down physically. Stress doesn't really seem to be a trigger, change in barometric pressure is still questionable.

my .02 worth.........
Love, Peace and Hugs

Sunflur ... Since I wrote this I have had 2 more 'breakthrough' attacks. They were painful but very short in length. None of these make any sense so I guess they just happen.
If they continue I will call my neuro and see what he has to offer on the subject.
Peace and love to you, Marti

I have had several bouts with TN all as a result of dental procedures. It took 2 months to initially diagnose the TN. Once I had the diagnosis, Neurontin helped in a relatively short time. After a year in remission the TN returned with a vengance. Tried neurontin again & it did nothing. My doctor prescribed Lyrica. Within one day the frequency and severity of the pain subsided DRAMATICALLY. Over the course of a month the pain has gone and I am off the Lyrica. Mention this to your doctor and give it a try.

Thanks for all your replies. I emailed (the only way to reach him unless an emergency) my neuro and am waiting for a reply.
hugs, Marti