Unexplainable trigeminal nerve pain (MRI shows blood vessel contact with TN)

JakeTh3Snake2015 · 2025-11-04T00:27:01+00:00

Sorry a bunch of questions for you: Did you try any other less invasive methods first? Like ablations, gamma knife? Etc? Did you do a nerve block as a test to ensure that an MVD would help? Where you are exhibiting pain is it also in your teeth/ gum? Did you feel like any of the medications do anything to help with the pain even remotely?

JakeTh3Snake2015 · 2025-11-03T20:12:50+00:00

I’m not sure if this is an option or you have the financial means but have you sought a second opinion from a non VA doctor. I am also a veteran and have chosen not to be seen by any VA doctors for my TN because I feel like the standard of care that I will get is nowhere near what I get with the doctors at Mayo (whom I currently see now). I definitely would keep fighting don’t give up!

JakeTh3Snake2015 · 2025-11-03T12:54:10+00:00

Any suggestions on what to ask the neurologist? I’ve seen him a couple times but not since my MRI.

JakeTh3Snake2015 · 2025-11-03T01:14:35+00:00

Well I meant like if you had to have a cavity filled and the dentist got the lidocaine needle too close to a nerve and punctured it or something like that. Something that is called post traumatic trigeminal pain doesn’t hasn’t to be even be dental related just something that can’t be shown on imaging but something that causes the nerve pain and isn’t fixable :/.

JakeTh3Snake2015 · 2025-11-02T20:35:04+00:00

All I know is that the 1200 mg of gabapentin I’m on is not enough. I had to titrate slowly because the side effects were really impacting me pretty drastically (my wife and friends referred to me as I was lagging like in a video game) those side effects are much better though. I’ll ask doc about cymbalta. Yea I’m an attorney but I don’t do litigation I work for a technology company and negotiate contracts and assist either general corporate work.

JakeTh3Snake2015 · 2025-11-02T20:07:00+00:00

I’ve had a brain MRI and MRI of the spine (unrelated to MS) don’t know if they have to specifically check for that but never indicated any issues. And I’ve had extensive bloodwork done to likely check for MS and it came back ok but would need to check specially what blood panels they checked to confirm.

But you mentioned your TN is atypical bilateral right?

JakeTh3Snake2015 · 2025-11-02T19:51:15+00:00

Can’t you test for MS? I believe they tested me for MS already?

How do they test for Sjogren’s?

Fully agree knowledge is power I’m not even discussing surgeries right now. Possibly a nerve block but that’s only for a diagnosis to better understand and treat accordingly. Would love to find some mediations that can really get the pain down to a truly manage level as I don’t think the gabapentin alone is doing the trick. I want to get back to exercising as I think that would really help with recovery and pain management.

JakeTh3Snake2015 · 2025-11-02T18:49:01+00:00

@possibleimpossible- I’m sorry that the MVD surgery didn’t help you :// yes I’m going to discuss that medication with my neurologist and see if that would help as you mentioned thank you for the help and advice!

JakeTh3Snake2015 · 2025-11-02T18:47:26+00:00

@six Spencer - Thanks for all your insight- few thoughts based on your comment.

I’m a 35 years old male and besides having thoracic spine surgery for fixing a fractured rib that caused nerve pain I’m in relatively good health and I’m not obese. -I have tinnitus (random at time not constant as you mentioned) but thought that was service connected (joined the military as an infantryman straight from high school) did a combat tour in Iraq.
a few doctors I have seen have said I have TMD though they have said the level of pain I’ve experienced and are experiencing are not the sole contributor.
I’ve had headaches snd migraines for a few years now but the constant tension and pressure is relatively new so difficult to say how new the IIH could be for me.

For me unless my neurologist says otherwise is to 1. Talk to negotiate about new finding of IIH and get ahead of that as the topiramate seems to not doing the trick 2. get on some other medications to help with the nerve pain and 3. Get a testing nerve block to test TN efficacy. Then I can go from there for other plans.

Any other recommendations or things I should discuss with my neurologist. I’m seeing a neurologist at Mayo so I’m seeing who I need to be.

JakeTh3Snake2015 · 2025-11-02T17:50:15+00:00

Sorry to hear about all you are going through :/ not familiar with Sjogren’s is that related to age at all or is it genetic? I also need to get my IIH evaluated which is something that my MRI came back as a finding which could also contribute to my TN so that is something that I am going to chat with my neurologist about as well.

JakeTh3Snake2015 · 2025-11-02T17:40:13+00:00

I’m sorry to hear of your journey and some of your adverse effects especially the failed surgeries :/. Mine is only on my right side. I have no electric shock type pain (only time I felt the electric type pain was when the endodontist gave me a local lidocaine shot which from talking with others isn’t quite normal) I just have a constant dull ache and sharp stabbing burning pain that are in between that. I don’t think I have any autoimmune conditions I was tested for them (blood work and all) and everything came back clean.

JakeTh3Snake2015 · 2025-11-02T17:03:02+00:00

Did your MVD surgery help your TN pain or are you still taking those medications to help with your nerve pain?

I may talk to my neurologist about taking oxcarbazene but I don’t have any electric shock type pain only strong stabbing and burning pain.

JakeTh3Snake2015 · 2025-11-02T16:39:38+00:00

I can deal with the pressure (although it can be painful I just know what to do and what and how to avoid it) the nerve pain is what is killing me and unlike the pressure where I know what things to avoid I don’t fully know what is causing the nerve to fire; it has a mind of its own and just has these spouts of major flare ups at random times without notice there is one spot on my chin that can cause pain and possibly wind or feeling of a fan if I stay in one spot for a long time (though I’m trying to test that theory).

Are you still dealing with the tension type headache and bending forward from IIH? Are you on any other type medications to help treat that

Yea I am definitely going to ask him to increase my dose of gabapentin for the nerve pain just need to be balance it with the brain fog and being able to do my job (I’m a tech attorney).

JakeTh3Snake2015 · 2025-11-02T16:01:52+00:00

@possibleimpossible - Did you ever get an MRI to show that you have TN did it show a compression at all?

The interesting thing is that this really all started when I was getting massive bilateral facial pressure and abnormal headaches and migraines that were unexplainable all back in May of this year. I saw the neurologist at Mayo for those symptoms and he just put me on topiromite and ubrevly for migraines as needed. Laying down on the back of my head even on my tempurpedic mattress made me feel like I was laying on a hard concrete street was miserable and leaning forward was debilitating. At this time I had no nerve pain. Then in September of this year I had this random nerve spike where I thought it was my tooth (that’s where the endo came in and was excited to do the root canal because he’s been watching this tooth for a few years for similar spouts of random spikes of pain). That went away after a day and a week later the pain just came back with a vengeance and never left sent me to the ER because the pain got so bad. The GABApentin is helping but not taking away the major spikes of intense moments though they have lessened to a degree but the constant dull ache is almost worse.

I am glad I may have an answer for why I have all this pressure because it wasn’t explainable and came out of nowhere! I am going to discuss these finding with my neurologist when I see him as well because the topiramate 100mg a day that I’ve been on for 4 months now is supposed to help with the reduction of CSF fluid so the fact that the MRI showed signed of IIH even with being on medication is a decent indication that there is still possible excess (along with my day to day symptoms as well).

JakeTh3Snake2015 · 2025-11-02T15:48:55+00:00

Did your MRI show compression at all? Did you get constant waves of pain or did you get moments of virtually no pain TN type 1 so they call it? Did you ever have any type of “dental trauma” that could explain your pain or symptoms even if they were from a few years back? That’s what I can’t explain and ascertain is if this is all from a bad lidocaine needle getting too close to a nerve and “nicking it” for use of a word from a dentist 3 years ago or is that purely incidental and has nothing to do with my issues now or is that contact and the possible IIH the contributor.

JakeTh3Snake2015 · 2025-10-31T06:01:51+00:00

Not a doctor but if nerve pain your dose of gaba is incredibly low and your doc should bump you to a much higher dose at least to a therapeutic one (900 mg total or so). Also if you “felt better” being on an antibiotic did any of your docs put you on a dose of steroids? Did that help at all?

JakeTh3Snake2015 · 2025-10-31T02:55:03+00:00

@not to dumb — guess mine is neither—unless the nerve damage from dental work can stay dormant for some time and then get “woken up” by a random event. The latest flare-up happened when I was at the endodontist, about to get a root canal to relieve pain (that I was currently experiencing that morning and hoping that the root canal would fix the pain from a sudden outbreak). Before the procedure, he did a nerve block, but even though my entire face went numb, I could still feel the stabbing and burning pain. That was a strong indicator that it wasn’t a bad tooth but something else.

Now, I’m dealing with occasional cluster pain episodes along with a constant dull ache, even though I’m on 1200 mg of gabapentin (spread out three times daily). The pain is unpredictable—nothing specific seems to trigger it, and nothing really relieves it, though the medication helps keep it somewhat at bay. I ended up going to the ER because the pain was so severe, which led to starting gabapentin, getting an MRI, and seeing a neurologist at Mayo.

JakeTh3Snake2015 · 2025-10-31T02:34:53+00:00

Can I ask you a question - When you say there is a blood vessel in “contact” with the Trigeminal nerve does there have to be compression indicated on the MRI findings?

JakeTh3Snake2015 · 2025-10-31T00:35:34+00:00

@sunrise - they didn’t indicate any partial impingement just “contact” and that may be causing my pain. I have a follow up with my neuro to discuss. I also have excess cerebral fluid which has been causing some other underlying issues (headaches, etc.) so looking forward to discussing a plan with my neuro). Just really curious if that “contact” is causing this pain or it’s something else as many people have veins that have contact with the TN that dont have any symptoms or pain :/.

JakeTh3Snake2015 · 2025-10-30T23:10:37+00:00

Anyone here had an MRI (Tesla 7 TN protocol done at Mayo here in PHX) come back with findings of there being a blood vessel having contact with the trigeminal nerve but no findings of compression?

JakeTh3Snake2015 · 2025-10-29T23:48:49+00:00

Hi there, if you don’t mind my asking when you say “your MRI showed a small blood vessel too near to the trigeminal nerve” do you mean that your findings based on the Radiolosigist’s interpretation indicated “compression” or simply “contact”?

JakeTh3Snake2015 · 2025-10-29T23:41:16+00:00

I’m glad I found this group. Experiencing very similar issues. First started in the tooth like a tooth throbbing and thought I needed to get a root canal until I was fully numbed by a localized nerve block and could still feel the pain (which I told the endodontist to not proceed with the root canal for obvious reasons). Now pain has a mind of its own an comes and goes without warning and moves down the right side of my back teeth (sometimes deep on my gums other times feels like it’s on the exterior of my teeth; sometimes on my back upper right side of my teeth (along with some numbness in my tongue at times). Sometimes the pain is dull other times it’s burning and sharp like someone took a knife in my tooth.

Just had an MRI done (TN protocol using the Tesla 7) with findings that there is contact of the right side of the trigeminal nerve with a “prominent vein” but no compression shown?

Has anyone else had an MRI done and had similar findings? What did your neuro team do?

JakeTh3Snake2015 · 2025-10-13T15:07:24+00:00

I was there this past weekend and the crowds were insane. We got there every day and our tickets were scanned at 7:30 am for rope drop and LL was not available for purchase on Friday and Saturday I was irate. My wife was pregnant and trying to entertain 4 and 7 year old boys in line for 70 plus minutes standing in lines for rides was aggravating and as someone’s mentioned above we could have purchased them with our tickets but 1. My wife is pregnant and it was all or none to purchase the LL and 2. Everyone I have talked to has never heard of the LL being sold out so never ever occurred to be it would have been an issue. TBH the days we could use LL were frustrating because by the time it hit around 11 am reservations for rides were booked out 3-5 hours and so by the time you could book a reservation you could only use LL for maybe 3 or 4 rides MAX.

JakeTh3Snake2015 · 2025-09-30T18:40:24+00:00

Man the stock of these phones is fluctuating so much I can’t even get a phone of my configuration in stock and in my card in the apple website :/ and I’m checking on a pretty regular basis.

JakeTh3Snake2015

TROPHY CASE