Medications is this true?

I’ve been told that the only medication to help TN is Tergatol and that any of the others r just lowly superiors and if you can’t take the therapupic dose which is 600 to 800mg, of Terg then you are screwed and need to look into surgery? Is this true or crazy talk?

I would have to say that this is untrue. I was told that Tegretol was the go-to drug, but was getting really frustrated and scared when ever-higher doses did nothing for me. It wasn't until, after much trial and error with other meds (and there are other things to try, by the way), a different neurologist hit upon combining Tegretol with Lyrica. While it's not perfect (I still have "background" pain constantly) the space between all-out attacks gradually got longer.

There are lots of alternatives to try before surgery. I had some success with gamma knife. Many people have great success. There are choices out there! My choice was to find a neurologist who wasn't steering me toward just two options!

If you have type one
And insurance

I have been pain and med free for four years
I had MVD surgery… Two days in the hospital

Can catch me easier at


I was told I have ATN so after reading here I don’t think I’m a candidate but I’m so happy that it worked for you.

Hi again, Susan,

I don't think that Tegretol is the only drug to treat TN. Research does not support that statement. There are several drugs and drug combinations that are tolerated differently by different people. If your doctor does his research, he will be aware of these alternatives.


Tegretol is the gold standard to treating neuralgic (sharp, shooting, sporadic) trigeminal pain. It works in about 70% of people with this type of pain. The evidence for its use in neuropathic (burning, constant) pain is more limited, and it's generally not the drug of choice in this type of pain. Moreover, surgical treatment has a lower success rate and higher rate of complications in neuropathic pain.

I posted this thread earlier, but I'm not sure if you saw it. It's not specific to TN but it definitely applies for those with ATN, which is more of a neuropathic rather than neuralgic pain. Long story short is that there is no one size fits all approach to treating pain, and what works for one doesn't necessarily work for another.

Whoever told you this must still live in the dark ages. Noratriptyline worked really well for me but since I also suffer from severe depression and Nortrip wasn't working for that it left no place to go for other antidepressants.

There are a many options before surgeons but none of them are all that great.

trileptal, noratriptyline, gabapentin, klonopin, baclofen, amatriptaline, lamictal, topamax, topical lidocaine, lidocaine patches, lyrica,

There are others that others have used in different parts of the world that work. And often they are used together for better effectiveness. Currently I am on topiramate, lamictal, gabapentin, klonopin, lidocaine, and for my depression effexor that has pain relieving qualities.

As you can imagine, the side effects are very difficult. I have been approved for surgery and I am looking forward to it. I met with the surgeon today and have to slowly come off of effexor and then they will schedule surgery.

I had to fail with three different meds before I could even talk with neurosurgeon about MVD. I failed trileptal, noratriptyline, and topiramate.

It's a trial and error thing and like said before and what your insurance will cover.

I am allergic to Tegretol, and took Gabaoentin for TN1 and ATN. While it did not leave me completely pain free, it certainly made it manageable. I eventually maxed out on this drug, so had MVD on both my right and left sides. I have bilateral ATN, all three branches, with both shocking pain, and chronic burning boring. MVD on the right failed to end the ATN pain ( this side was affected for close to ten years), so I have a PNS. MVD on the left ( only affected for 1 year) was completely successful on BOTH the shocks and the burning boring pain. All my surgeries were completed by October 2013. I have not taken any medication for pain at all since November2013.

Susan, No. Untrue. I would say it is the first response. But it also requires a lot of liver testing and monitoring as well.

If you have ATN the gold standard is often not tegretol. It is typically gabapentin or noratriptyline. Or a combination. It is complex and differs from person to person.

I have TN2 and experience some of the typical electrical shock pain as well. I am not a surgical candidate which just means no seen compressed nerve. I am on gabapentin, topamax, noratriptyline and oxy for the breakthrough pain. The episodes of breakthrough are becoming less and less.

The only medication that worked for me was Tegretol. Gabapentin, Aleve, they all did practically nothing.

When I started the Tegretol regularly - it was 200 ish... ish because I would take 5 per day... and still have break through pain. And I had major side effects for weeks. It finally balanced out, but I still had break through pain. And I was told that my body would eventually become immune to the meds.

I finally got the courage to do the surgery. I had a world class #1 doctor - he's done thousands of these - trained under Peter Jenetta, himself. He treated me so personable - like I was the only patient he had. It was AMAZING!!!!

You can find him at his name is Dr. Brent Clyde. He is in Utah. I am from Miami Florida - YES, I flew all the way to Utah to be seen by him. He was so much better than the Miami doctors I had been seeing.

I tried to heal my pain all the ways I could think of before getting the surgery. Had I known the surgery was going to be so easy - I would have done it so much sooner! I spent 6 years in pain. Scared of the surgery. My advice is - read my blog story so you get all the details - and make the choice yourself. If you feel surgery is an option for you. Just do it. It CURED me. I have my life back. I am completely NORMAL again!!!!!! TN stole years from my life. Don't let it take more. my blog is I wish you all the best in your painful journey.

Hi Lisa. I noticed you mentioned that you weren't a candidate for surgery because it wasn't showing up on the MRI. I encourage you to seek a second opinion. He was my surgeon. He is available and expert. I used him for his ease of access and his EXCELLENCE. He has done thousands of these and also trained under Dr Janetta, himself. He told me that most of the time, the vessels don't show up on the MRI. Mine didn't. When he went in to do the surgery, he found TWO. He very carefully moved both of them off the nerve - and I am completely cured.

I was nervous to do the surgery without so called "proof", but if I had to do it all again, I wouldn't be so scared. It was so much easier recovering from surgery than going through the TN pain daily. There is such a high success rate. It really is amazing.

Once the Dr. gets in there - if he's well trained and knows what he's looking for - he will be able to see it. Even though it doesn't show up on the MRI.

I don't have a metal plate in my head either. I was given stiches - and an acrylic patch in my skull. It's like getting a dental filling. It's just like nothing ever happened. (except I feel the scar - it kinda feels like my C-section scar) but that's it. No pain.

Good luck to you enduring this pain daily. If you tire of it, please consider a second opinion.

Lisa (iamrite) said:

Susan, No. Untrue. I would say it is the first response. But it also requires a lot of liver testing and monitoring as well.

If you have ATN the gold standard is often not tegretol. It is typically gabapentin or noratriptyline. Or a combination. It is complex and differs from person to person.

I have TN2 and experience some of the typical electrical shock pain as well. I am not a surgical candidate which just means no seen compressed nerve. I am on gabapentin, topamax, noratriptyline and oxy for the breakthrough pain. The episodes of breakthrough are becoming less and less.

Christine, what is a PNS?

Oldfield, I am so happy that you had a successful surgery. But I’ve been told I have ATN from a dental extraction and thus from what I’m reading don’t qualify. I almost wish I did.


A PNS is a peripheral nerve stimulator. It is a device that consists of a battery and two wires, or leads, that send electric current to the nerve, masking the pain stimulus. They have been used for years for chronic back pain, and certain types of migraines. Using them to control TN pain is relatively new, and my surgeon is one o just a few who offer them to TN patients.

I have mine for close to two years, and it works incredibly well!

I would definitely get a second opinion on if you qualify. Because the pain is so bad...

The Dr. I used was with the pioneering surgeon for this - he really knows his stuff.

You can contact him at Dr. Brent Clyde. He would really know.

So many of the doctors here in Miami just ran me around in circles. He was the only one who really knew his stuff. My pain was everything from burning and constant, to electric and sharp. It was all over and kept changing. Tegretol woked sometimes, then sometimes it didn't...

Dr Clyde knew his stuff and was able to sort me out.

I wish you luck!!


Thank you Oldfield, I didn’t think I neurosurgeon would speak with me. The neurologist just sent me to pain management and said its not a neuro problem. Then I read that Red the monorator on this board said no surgery for dental TN issues. I’m so confused. I don’t want meds. I need to be able to drive and take care of myself. They also interfere with my other medical condition. I’m too young to be alone and housebound. I have a stress headache from all this!

I chipped a tooth. I did not have any pain until crown work was done. I had an infection for 2 months and dentist would not X-ray, Would not give antibiotic, and said nerve will settle down. Then sent me for a root canal.

The pain went from mild to severe. The endonist told me I had a bad infection, never show me the X-ray, stop procedure during the procedure to take more X-rays. I think he did this to protect himself for an unnecessary root canal. He had never done this in the past. He should have sent me home with penicillin instead if a root canal. I saw 6 doctors many said I had TN2. The last doctor I saw was a neurosurgeon. He told the it takes 3-5 years for nerve to heal. I was better in 2 years with occasional pain a few seconds. Now 6 month later no tooth pain. I actually had trigeminal neuropathic pain from nerve being nick and long term low grade infection.

I don’t know your symptoms but I was convinced I had TN2. I had face, eye,

And ear pain. I hope that you might recover like me. I had no pain before dental work. This is probably the different. Try topical creams if u can. Stay,away from Lyrica. I read last year that a lady’ tooth pain went away in one year. I consider myself very lucky.

I only have pain in the extraction site when it is touched in a certain way,so I’m hopeful.

Linda, how did they know a nerve was nicked?

Actually I only had pain in tooth area only until I went off Lyrica which damaged my nervous systems for 13 months. Now I am pain free from both.
The pain was only in the tooth area and made worst when flossing. The pain was severe until I took Lyrica. No pain when sleeping. But every few months pain would come back and the Lyrica was increased. After 13 months on Lyrica, I withdrew from it and took Trileptal for 2 months. My great fear was I would be in severe pain unless I continue some type of anti- seizure medication. During the first 2 months I noticed that the tooth pain was not as severe or constant. I use capsiumn cream which worked most of the time. But I refuse to take anti-seizure drugs. As time went by the next 8 months the pain decreases. I noticed if I head down with my mouth open, I would get a sharp pain in that tooth. Now four months later pain is completely gone. The ear, face, arm, and hand pains was a continuos burning skin sensation. It is now gone after 13 months. This was caused by Lyrica and not trigeminal neuralgia. I was convinced that I had TN 2 until I took a questionare by dr.Kim Burcheil at University of Orgeon. Test results from my honest answers said I had trigeminal neuropathic injury. This is what my new neurosurgeon said in January 2015. At that time tooth pain was almost gone and I was not using any RX or cream. He said it takes a long time for nerve to heal - 3 to 5 years. He said the nerve was nick during crown work.
It took me 2 years, but I took a lot of b vitamins, such as B-12 5000mcg under my tongue by Superior Source. It is equal to a B-12 shot.

I saw over 6 doctors and got different diagnosis. Never did one of these doctor would admit that it was cause by dental work. Last year when I took the questionare from University of Orgeon, I started to question my previous diagnosis from other doctors. Then later I went to see a neurosurgeon for a second opinion. He told me the pain would go away when the nerve heals slowly. I am so happy that I don’t have TN 2. I had never heard of this disease before, and I have done a lot of research on it. Dr Ben Casey had a good video on TN 2. He said even if MRI is normal that doesn’t mean there isn’t a nerve rubbing against a artery in the brain. I would consider getting a MVD instead of long term anti-seizures melds with a lot of side effects and withdrawal symptoms. Read the success stories on this website.