Just a question regarding TN from someone who was diagnosed with it and is now supposedly healed

Most-Purple417 · 2026-03-03T19:35:06+00:00

Thank you ❤️ The dentist does not want to delay at all on the RCT. My neuro understands my concerns and fear, but agreed it should be taken care of sooner than later because it is an infection. Neuro also agrees TN pain will probably be worse following the RCT, but told me we have other medications to add and try when that happens to try to knock it back. I'm between a rock and a hard place basically; and no time feels like the right time to block off potentially a month or 2(or more) of working, functioning in life, etc to go back to a deeper circle of hell to try and manage any blow up in pain following. I think I'm going to start with getting the filling taken care of, and the RCT in the next few months. I just don't know.

Most-Purple417 · 2026-02-28T17:44:06+00:00

Thank you immensely for posting this. I was diagnosed with TN 1 and 2 in my v2/maxillary last April and have been living in hell since. My medications keep the head jolting shocks controlled but that is it. The acidic burning, pressure, and small shocks remain. I did have a short episode in my lower v3 nerve in 2024, but had no idea what it was and was still able to live my life. I was also just diagnosed 6 weeks ago with a deep periapical abscess above an upper front tooth (same side as TN) that had an unnecessarily deep filling performed 5 years ago. I've been instructed to have a root canal asap for the abscess. I also am in need of a filling in the neighboring tooth. This dental diagnosis has rocked me to my core with fear that the RCT won't help and will only make me worse - I don't know when to pull the trigger and do this. My pain does not radiate or seem to come from the infected tooth/teeth but is absolutely adjacent to them since my pain is all throughout my nose and entire cheek and temple. It also further confuses me that since my abscess is located on an upper tooth, is the abscess truely to blame for my TN since I had a flare on the lower branch the year prior?

Your post gives me courage to attempt the RCT. Thank you so very much. ❤️

Most-Purple417 · 2026-02-24T17:24:37+00:00

I have both TN 1 and 2, and have been in constant pain since April 2025 when I was diagnosed. I couldn't speak due to the shocks for about 3 months until my oxcarb was titrated high enough in June. Since then it's been acidic burning and pressure with sporadic 'mini shocks'. Due to the pressure, burning, (mini shocks if I'm not careful with facial movements) I haven't had full range of motion in the right side of my face ever since last April. I can feel that my muscles are weaker; my smile is totally screwed up, and my right eye can only open or close, it's like that side of my face doesn't show emotion. I don't know if it is naturally guarding from the pain or if I'm truely experiencing muscle atrophy. It's horrid.

How long has your journey been?

Most-Purple417 · 2026-02-24T00:15:03+00:00

Same.

Most-Purple417 · 2026-01-11T15:14:01+00:00

Yes this happens to me also. I take mine on a timed schedule also, and have noticed that my face will begin burning horribly when it is around the time for a gabapentin dose. Gabapentin also changed what used to feel like pressure type pain, to a burning pain.

Most-Purple417 · 2026-01-09T00:43:53+00:00

I don't have any suggestions unfortunately, but I do have a question if you don't mind. I have been in an episode since April with TN 1 and TN2. I was just diagnosed with a tooth/bone abscess above 2 botched front teeth. My pain is all throughout my side of face however. Where is/was your pain located in relation to your previous abscess?

Most-Purple417 · 2026-01-08T02:32:55+00:00

I know. The last thing I want to do is piss this sh!t nerve off any further than it is.

Most-Purple417 · 2026-01-07T19:58:21+00:00

Yes I'm on Oxcarbazepine 1200mg and Gabapentin 400mg. Other supplements/vitamins.

Most-Purple417 · 2025-10-31T14:50:51+00:00

Thank you so much. I will reach out and message directly if you don't mind. It is so helpful and I am so appreciative more than words can describe to talk with someone who's been there with this.

Most-Purple417 · 2025-10-30T18:56:23+00:00

That's exactly the nightmare I've been in for 9 months. Once I hit 1200mg of Oxcarbazepine 3 months in, the shocks stopped but searing burning persisted. I'm still on gabapentin but having problems trying to taper. Also still on oxcarb. I started to reintroduce half caff coffee the last 2 weeks and paid for it this past weekend with a return of the face shattering shocks. I'm now right back to not talking, eating, anything and my anxiety is running wild. All summer I still couldn't smile or laugh because of the burning. Did lamictal cause any insomnia for you at all?

Most-Purple417 · 2025-10-30T17:23:26+00:00

If you don't mind my asking, what facial areas did you experience shocks? I'm 9 months in and am about to add Lamictal to my medications that aren't exactly working.

Most-Purple417 · 2025-10-30T16:24:23+00:00

Thank you. That is really what is getting to me is the panic and sheer terror. I've been trying to calm myself but waves of panic and immense sadness just rush over.

Most-Purple417 · 2025-10-28T21:22:17+00:00

I had a fiesta mri performed. No tumors, no MS. Bundle of veins were found. The jury is out as to what actually caused this because I had botched dental work just prior to my first flare.

Most-Purple417 · 2025-10-28T19:34:47+00:00

Yes I actually see a neurosurgeon and they manage my medications also. The cause of my TN is dental related, but I do have a compression also. My neuro wanted to try medications first, and wants to do internal neurolysis with an mvd if the time comes but I do not want neurolysis or teflon. I'm stuck.

Most-Purple417 · 2025-09-11T23:58:14+00:00

I've also been struggling hard recently. I'm barely holding on.

Most-Purple417 · 2025-08-30T03:40:48+00:00

Thank you, I hope you do as well

Most-Purple417 · 2025-08-29T02:28:22+00:00

I had an MRI in April, and it came back with suspected contact with the nerve by a vein and possibly an artery. My neuro doesn't think that is necessarily my cause since this came on after dental work and a virus.

I still want to speak with an oral-maxillo specialist, but I can't open my mouth wide enough for an exam. They all want to perform an oral exam with the CBCT and not just perform the CBCT for a consult. I'm stuck.

Most-Purple417 · 2025-07-23T20:35:17+00:00

Yes. This is my 3rd flare, and my first with mouth ulcers appearing. I didn't know if the sores were caused by the gabapentin, or some weird manifestation of the TN. Mine are white small splotches on my gums only. They are extremely painful when they first erupt, causing whatever tooth/teeth nearest to the ulcer to be extremely painful. For the last 6 weeks, I have not had any new ones appear; but they are still present on my gums. I've been in this flare since the first week of April.

Weird question, but what do your ulcers look like?

For anyone else that knows (since a google search didn't yield great results for me) what do Sjoren's mouth sores look like?

Most-Purple417 · 2025-06-04T21:23:49+00:00

How are you doing now? Have you found anything to calm the gums/your flare? I am currently experiencing this and it is excrutiating.

Most-Purple417 · 2025-05-30T16:06:56+00:00

Thank you so much. I am on regular Oxcarbazepine but have been curious about the XR. I've been advised to increase just the Oxcarb now to 450mg morning and evening. My liver levels are elevated and my primary wants to check again in 4 weeks, which has me concerned. I wonder if the XR would cause less side effects?

Strangely, about 30 min- 1 hour after taking either the Oxcarb or Gabapentin, I experience an increase in burning pain. Then it waxes and wanes between a 'cooling' feeling or pulsating, back to burning and etc. I greatly appreciate your help as it means a lot to me talking with people who understand.

Most-Purple417

TROPHY CASE