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: 481
Latest Activity: on Thursday

Discussion Forum

Symptoms that seem off

Started by sw88. Last reply by golfgirl on Thursday. 10 Replies

Hello, I am 28 and have had ATN/Type2 for 2 years now. Although the pain runs along my trigeminal nerve..I also have symptoms that don't seem to match anyones. I have pain on both sides of my face, all three branches and this pain is constant. The…Continue

Neck pain

Started by Trshi. Last reply by Richard A. "Red" Lawhern Apr 5. 5 Replies

I have has ATN since 2010. Just the last week, pain has been radiating down my neck only on the effected ATN side. I am not sleeping or doing anything different. Does anyone else have this?


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

Comment Wall


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Comment by Grecio on April 8, 2015 at 8:42pm

Try a new oral med called Nucyta... It is a new synthetic opoid that claims to have a beneficial effect on nerve pain. My wife has been taking it and it seems to help her quite a bit. You can get 50 mg   75mg  and 100 mg.  Also, it doesn't have any acedaminafine in it that affects your kidneys over long term. I am sorry that this is the only thing I have to offer. My wife's case sounds a lot like yours. Good luck!!!

Comment by Mary E. on April 6, 2015 at 6:51pm


Today at 6:46 PM
Comment by shadow2 on April 6, 2015 at 5:34pm

I have had tn2 since 2010 as well. Although I do not have a blood disorder (that I know of) my docs recently added fibro although I highly suspect a disorder as well. What helps most of the time is gabapentin with nortriptyline. The nortriptyline has really cut back on the stabbing head pain and eye pain. It really stinks for us in that I think we kind of have to pick our poison so to speak. If we are medicated enough to handle the pain we are groggy, drowsy, etc.

The tricyclic antidepressants help so many of us tn2/atn sufferers. If you have not tried this in your combo you may want to ask your doctor about it. As to your doctor giving up, that is terrible. They are human, even though we NEED them sometimes they fail us. I suspect when they act like this they are scared because they do not know what to do and it affects their egos. Just a thought. I do appreciate a doctor who is open minded but bold in willingness to try whatever it takes. I wonder if they understand how vulnerable we are and desperately needing their help. Going to a doctor appointment takes energy and ours is often in short supply. Have you ever read The Spoon Theory?  If not, it really helps put things in perspective.

btw, with your latest disease, is it possible for a different specialist to help you with it or does it need to be a neuro? Just wondering if something can be salvaged there. I know on my last bloodwork I came up pre-diabetes and my weight has been ballooning. My doctor for the first time did not come across as trying to help me. In the past I have always felt empathy from her. FWIW, on my last visit she said they are trying to put a stop to testing. As usual, I didn't question what she meant. I pay $675/mo for COBRA with no income for a year now so as long as I am paying that ins. money I sure do want to dig in to find the problem. I say this to you because I just wonder what the doctors have to go through that we don't know about. I suspect our healthcare is changing as we speak. The days of easily getting tests we need done are likely heading out the door.

Comment by annoyedinva on April 6, 2015 at 3:56pm
Also what's the deal with docs and pain relief?I am in pain and I need help to make it stop!!!! Is that not my doc's job- to help me NOT be in pain.
Comment by annoyedinva on April 6, 2015 at 3:49pm
I have had ATN since Jan 2010. I think I've tried every med, ablation surgery and Gamme Knife Sept 2014. Went to doc for wrist pain who sent me to Rheumatologist. They added Fibromyalgia to my pile of problems! CBC came back with another disease (not comfortable sharing) that is life changing and lacking a cure. Seriously? The ATN isn't enough to deal with? Because of latest disease, my neurologist has basically broken up with me. A have days that I spend in bed with ice packs on my face. Some episodes last 6-8 hours. I cry- mostly from the pain but also frustration. I am missing out on life because I'm sick. (Sorry I am venting). Anyone out there with ATN, FM and a blood disorder? If so, how do you fit all these pieces together? Also, is there a med that you can take just for "breakout" pain? Already on gaba, Zoloft, and soma. Also take, for migraines, bupropion, a once a day prevention med and fiorinal for break out migraine pain. I am feeling sorry for myself-ugh!
Comment by Granny on March 22, 2015 at 2:02am

     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.


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