I've been to the neurologist and she said that I did have Trigeminal Neuralgia. My general practitioner had put me on 300mg gabapentin 3x a day. That had made the shooting pain attacks go away, so the neurologist kept me on that medicine. She said that because I'm 27 and pretty young to have it, it would likely go away on its own, and wanted me to stay on the medication for 3 months and then go back to her and they'd try to slowly take me off the medicine and see if I was better.

That was about 1.5 months ago. 2 weeks ago, the gabapentin stopped working so well. I didn't have the pain attacks, but my jaw hurt constantly and was incredibly tender. To the point I gave up eating many meals halfway through. I went back to the neurologist and she upped my dose to 400mg 3x a day. But she still thought that it would go away on its own.

I did get an MRI done a few months ago, because before I had standard facial pain, I was getting migraines. We are pretty sure they were caused by the TN since as soon as I got the face pains they completely stopped, and I'd never had a migraine before then. The MRI was done without contrast, and I've heard that ones without contrast don't show small problems. The neurologist looked at the MRI and said she didn't see any problems. She said there are no tests that can be done besides the MRI.

I'm not sitting here thinking that I know more than a specialist doctor. But nothing I've read suggests that this normally resolves on its own, and she said that it would the majority of the time. I don't want to stay on the medicine too long because I'd like to start trying for a baby later this year. The medicine has pretty bad effects on a baby, but having terrible pain and anxiety of waiting for the attacks would also be bad for a baby. So I want to get this fixed.

Do you guys think I should find another neurologist? My mom does, but she's a nurse who gets very worried about me. I was referred to the ENT to see if there's a "structural problem," but after that, I don't think the neurologist has any ideas to do anything.

Well, any insight would help. Or if you know anyone who had this resolve on its own. I know people wouldn't still be on this site if it fixed itself, but maybe they told you before they left. Thanks!

I would definitely recommend getting a second opinion. It is a good idea in many circumstances and i think it would be a very good idea in your case. I do know a woman who was diagnosed with TN that did go away (but I lost track of her and don't know if that was the end of it). It can happen, I guess. Or it could be that she was misdiagnosed. I think most of the time there can be times of remission, but it usually comes back, and I never read about age being a factor. So I would suggest you stay positive and hope she is right, but get another opinion and see which doctor seems the most helpful and knowledgeable. I hope it goes well for you!

My daughter was diagnosed with TN 2 1/2 yrs ago. she is 30. hers didnt get better or go away on its own. hers got worse and lasted longer. she is on extreme amounts of medication and still has pain. she is having Microvascular Decompression surgery this Tuesday. i have faith this will work! Good Luck in your journey.

Thanks for the info and encouragement I will get a second opinion after I see the ENT doctor if he doesn't find any cause. I think it's very strange that the neurologist doesn't want to find a cause, but I do understand that it's pretty smart to wait until you find out that it won't go away on its own to do extensive tests or something. (I have no idea what tests they'd do besides an MRI.) There are a couple other neurologists close to me, so it shouldn't be hard to find one.
Dparis: I hope your daughter's surgery goes well!

So, I went to the ENT last week and he was like "Lol, why'd your neurologist send you to me? It usually works the other way around." and he pretty much didn't know what to look for. But he said I probably have the start of TMJ or a mild case of it, but made sure to say that he wasn't second-guessing the neurologist's diagnosis and even said that I could have gotten it from holding my face weird from having pain.
He also that I should have nose surgery because my septum is deviated and I have really large turbinates It would be cool to be able to breathe through my nose, though!
I got him to refer me to another neurologist who my aunt either used to transcribe for or it was the one she saw for migraines. Either way, she seems to think he's pretty great. I haven't gotten an appointment time yet, but it hasn't been even a week and I know doctors' offices are busy.

I'm glad you are getting to see various doctors. I thought the referral to the ENT doc was unusual, though it sounds like it was a good thing for you if you have a deviated septum. I don't know if that would contribute to the pain... A diagnosis of TN is considered confirmed when a medication for seizures like Gabapentin takes the pain away. But of course the pain can escalate so that you need to increase the dose. A regular MRI is usually just to rule out other possible diagnoses. There is a special MRI that can spot places where blood vessels are pressing on a nerve. That is probably the major cause of TN.

Here's a description I found on a neurosurgery site:

Thanks for the info about MRI's. I had suspected that was how it went.
The deviated septum couldn't cause pain, except I guess in my sinuses. The ENT did mention that.
I'm afraid the pain is increasing again, because yesterday my jaw hurt a lot for several hours. But I'm fine today, so I'll give it some time.

I think the diagnosis of TMJ is widely overused. It seems if a dentist or ENT can't find a physical cause for pain they use this term.
I was told I had TMJ before I was diagnosed with TN.

J. Jane, I couldn't agree with you more. I went to an ENT, who told me my pain from outter space .... Meaning it was over the top, was probably TMJ. When I told him that two of the top neuros in town think it is ATN likely caused by dental work, he back tracked super fast. Plus, I don't think the meds I was /am on would help TMJ!

Oddly, later, I got some TMJ on the opposite side and I took Soma briefly and some PT. it was just clicking and mild to moderate pain. Did not last all that long and certainly cold breezes didn't bother it. But a cold breeze really bothers the ATN side!

I personally believe a MRI and maybe an MRA are important.

I think many with TN can have corrective surgery.

And those of us with ATN through trial and error can find good meds to work with. My cream seems to work better and better over time. And I have something for breakthrough pain, so I don't feel as frightened.

you might try. www.livingwithtn.org
I got great info and ideas there!

I have had the same effect for years now, all I can say is GET OFF THE gabapentin I swear it lowered my IQ and I gained so much weight after being on it four years. Look into Cannabidiol it has controlled my pain for the the last four years. My doctor said it could take ten years to heal if it ever does. I would rather not have the crazy side effects of a prescription drug
Oh and listen to your mom your neurologist sucks and moms know best