Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

Type II Trigeminal Neuralgia


Type II Trigeminal Neuralgia

For support and exchange of ideas and info for those caring for someone, or suffering from Type 2 Trigeminal Neuralgia, also referred to as Atypical Trigeminal Neuralgia, or ATN.

Location: subject-specific group
Members: 478
Latest Activity: on Sunday

Discussion Forum


Started by me. Last reply by RonaldS Mar 11. 5 Replies

I an considering one of these procedures....I have type 2 TN. Any thoughts or suggestions??Radiofrequency lesioning (also called radiofrequency rhizotomy)OrRadiosurgery (Gamma Knife)Continue

topical lidocaine For ATN

Started by me Mar 7. 0 Replies

I ask my neurologist to prescribe me some topical lidocaine 5% so he did. This is it and I just put a little dab on my gums with a Qutip and it helps numb the pain for a good while. I just thought I'd share this and hope it can help others with the…Continue

Feeling Isolated

Started by Megan. Last reply by Erica328 Feb 24. 11 Replies

Anyone ever feel misunderstood?  My co-workers seem to think I'm going to recover from this nerve disorder.  They can't understand ATN is a chronic condition and isn't 100% curable.  Of course I want to be cured.  Who here doesn't? I'm exhausted…Continue

But You Look Fine

Started by Stef. Last reply by uwfotogal Feb 22. 157 Replies

Does anyone else get tired of hearing this, of not being believed? Of being expected to carry on with the duties and obligations of life just as if everything were normal, when there is a three alarm fire going on in your face?I wonder sometimes how…Continue

Comment Wall


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Comment by Granny on Sunday

     I found that it took a few months for me to get benefits from amitriptyline. I take 50 mg. at bed time. It was prescribed for sleep as I was getting into a lot of pain with my back but got a nice surprise a few months later noticing my ATN flare ups were not as severe and had a few days of mild pain. Sharon

Comment by Min on March 20, 2015 at 3:10pm

 Hillsdale15 , Maybe your doctor will increase the Amitriptyline..( while you are waiting for Trileptal to take effect) may work for you too. :)

Comment by Richard A. "Red" Lawhern on March 19, 2015 at 8:57pm

Hillsdale, Trileptal might be considered a reasonable alternative to Tegretol.  It was developed specifically to mimic the effects of Tegretol with fewer side effects. Report your rash to your doctor, however. Rarely, such a rash can be an indicator for allergy that may get worse if exposure continues.  In the extreme, Stevens Johnson Syndrome can be highly dangerous to a few people.

Regards, Red

Comment by hillsdale15 on March 19, 2015 at 5:07pm
Need some opinions. I have been taking tegretol extended release 300 mg and Amitriptyline 50 mg. This combination was really helping me and I experienced very little pain. However I developed a rash, it was not blistering nor was it all over my body. Mostly just the back of my hands and feet. It did run up my arms a little bit it was not much. I stopped taking the tegretol because I read it can give you a rash. The rash went away within 4 days but the pain came back. I really want to take the tegretol because I felt alive again. Does any one continue to take tegretol even if they get a slight rash? If not, what other medication can I take besides gabapentin I have tried it with little success. Is there any drug that is very similar to tegretol without the eztreme side effects?
Comment by shadow2 on March 7, 2015 at 10:56pm

Your pharmacist is probably the best person to ask this question but I will say many, many of us are using a similar combo as it is very effective. Due to my large doses of gabapentin which causes drowsiness my primary has me take nortriptyline at bedtime.

Comment by hillsdale15 on March 7, 2015 at 10:22pm
Question. Just spoke with my primary care doctor who put me on amitriptyline. It has been helping some. However, 3 days ago he asked me to start taking XR tegretol again along with the Amitriptyline. Is it safe to take 300 mg of Tegretol while also taking amitriptyline 50 mg? I haven't felt very sleepy as I usually take the amitriptyline in the afternoons. Just inquiring to people who have actually taken the medications because we all know doctors can tell you one thing and actually your body will react a different way. Yesterday I had a very pain free day and it was blessed. Today I have felt good as well. Maybe this is the combination that will keep my pain at bay.
Comment by Andie on March 5, 2015 at 1:24am
I have type II. Had MVD surgery on left side Jan 21, 2014. No success. I have been dealing with this for 20 years now, upper left teeth ache always (have had 3 removed in this period of time..the pain just moves forward and upward) had this procedure done when I found Dr W. Jean at Georgetown University. Since it was unsuccessful (he attributes the lack of success to too much time with the problem) I was working on it..,just apparently not with the correct diagnosis or Doctors. He has given me the same choice you have now with a slim chance of either of them working (less than 50/50) he wants to try the radiofrequency next since it is the less invasive of the two (or at least easier to perform) as the other, for me at least, would be done in the operating room with some type of sedation. It sounds like your Dr. Is on the right track..I was given 50/50 on the MVD..was more than willing to take those odds. Please let me know what you decide and if it works for you. In am at a loss as to what to do next, if anything! Good Luck!

Comment by Richard A. "Red" Lawhern on March 4, 2015 at 8:21pm

Message broadcast to the group:
I an considering one of these procedures....
I have type 2 TN. Any thoughts or suggestions??

Radiofrequency lesioning (also called radiofrequency rhizotomy)
Radiosurgery (Gamma Knife)

Both procedures have lower effectiveness in Type 2 TN than in Type 1.  I haven't seen data on initial effectiveness of Gamma Knife in Type 2 pain, but the pain recurrence stats for Type 1 are substantially less promising than those of RF Rhizotomy.  About half of all Gamma Knife successful procedures experience recurrence of pain within three years (according to the practice standards of the International Radio Surgery Association).  I've seen stats several years ago that indicate about 70% of all RF Rhizotomy patients are still pain free or much improved after seven years. 

Go in Peace and Power


Comment by Trshi on March 4, 2015 at 7:04pm
Does anyone get relief from using flonase?
Comment by Megan on March 4, 2015 at 6:55pm


Thank you for posting this because I didn't realize until now why my pain flares up when I'm at work.  I thought I was just stressed out but now I think it's the way I'm positioned all day at my desk.  I'm going to make some adjusments and see how it goes.  Hope you are getting some relief. 


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