So I went to get a second opinion yesterday. Apparently this doctor also thinks it'll go away on its own. But not for good; it should come back at some point. And he said that only about 10% of people he sees with this problem have a cause, the rest just have it for seemingly no reason.
He looked at my MRI and said that if there was a tumor or blood vessel, he'd be able to see it slightly distorting the brain stem. And if he saw anything like that, he'd get me an MRA test. But he thought that it looked fine.
So I guess I'll stick with the first neurologist. Even though I like the second one a bit better because he explained things better, he also said that he wasn't taking cases like mine as much and that the first doctor I saw was more of an expert.
I'm pretty disappointed that there's nothing I can do to cure it. In any other case, it would be really weird to say, but now I'm thinking "Crap, a wish it was a tumor."

Hmmm. Well, I am glad you got another opinion. I thought the percentage of people whose TN had a clear cause was a lot higher than 10% and my neurologist said that often an MRI would NOT show any compressions even when there are some. (I also thought that even the MRA doesn't always show compressions that are there but it is more likely to.) It all depends where they are.

Keep reading and educating yourself and if there is another doc with more experience, go to him or her. Yeah, it would be great if there was a cure and for some there is, but there is a lot they can do and new things get discovered. I have been pain free most of the 21 years I have had it, though sometimes I've had bad side effects from the meds and I doubt I will ever lose the fear of it coming back. One day at a time...

Hi All,

I've just joined as i am having trouble with my Trigeminal Neuralgia flaring up again recently.

I'm a 29 year old male, and I was diagnosed about 2 months ago by my Dentist. I had an attack just before christmas, which was completely out of the blue.. and very painful, which i went to the doctors about. Before going, i'd searched online for what the pain could be (searching for 'electric shock like pain down right side of face') and found Trigeminal Neuraligia, which, when i read about it.. seemed to be exactly what i was experiencing. Never mentioned the possibility of TN to my doctor as i wanted to see what she suggested. All she said was, if it happened again - to go back.

Not overly pleased with what my doctor had to say, i went to see me dentist just to check if they could find anything (actually hoping would be an absess or something!). After a visual examination and having an xray done, they could find nothing dental related that could be causing my pain. She suggested that my pains sounded like something called Trigeminal Neuralgia.. the very thing i had dreaded she was going to say.. and asked for a second opinion from the other dentist at the surgery. This dentist had a medical background and he too said it sounded very much like TN from what i described to him.

I got a referral to the Maxillofacial clinic at the QMC in Nottingham to see a consultant. At this point my pains were horrendous and i had not been eating very well due to the pains i was getting. As the consultant i saw was concerened about the fact i was struggling to eat and drink, i was admitted into hospital where i remained for 3 nights whilst they did a series of checks, in cluding a scan.

The scan did not show any vessel pressing against the nerve or any other possible cause for Trigeminal Neuralgia. What it did show was a large area of my brain which had fluid around (i can't remember the name of it now). They said this was 'arrested hydrocephalus' - and that i would have had this since being a baby, and also that it appeared to have not had any effects on me. They did a series of tests which i did fine completing, and so no reason yet.. as to why i developed TN.

I struggled to come to terms with the fact i have 'the suicide disease' as it is referred to on google.. and i am hoping that something can be done to help with my pain.

I was first put on Carbamazepine which was ok for a while but then i developed a rash and so was taken off it gradually. Then i was put on gabapentin.. which i felt did nothing for my pains and so i asked for something else. I am now on pregabalin. 150mg 4x a day. At first i felt this was doing the job okay.. but now i am only taking 2 of my gabapentin (2x300mg), along with 4x pregabalin (600mg)... i get slightly less intense pains in my face almost continuously. It used to be just when i ate or drank. Now i have a mild kind of numb pain in my lower lip.

Having told my consultant this yesterday, she said to up the gabapentin again back to 3 times a day along with my pregabalin... i'm still waiting for the pain to subside to how it was a week or so ago.

So.. that's where i'm at now. I look forward to reading your thoughts and other people's experiences of Trigeminal Neuralgia. Especially in young males! I read this was more common in middle aged women!

Adam

Adam, my experience is that this is not an easy condition, but you can learn to live with it. I am also a male and first had pain 4.5 years ago. My cause was also very unusual in that I had a tumor in the lining of the brain which was compressing the T nerve in the gap in the skull base that it passes through. I had a major skull base operation (entering from behind my ear) which didn't get all of the tumor and had to have a second operation 9 mths later, entering from the temple. All seemed well then for 2 years, however now the pain has returned even though there is no tumor and the MRI does not show the cause. It is probably permanently damaged nerves and I am back on the drugs. I expect your surgeon will suggest a skull operation to release the fluid causing the compression. Having had 2 operations I can tell you that recovery is pretty quick and all should return to normal. Don't be afraid to have the surgery if they suggest it.

Welcome to NeuroTalk. I am so sorry to hear about the trouble you are having. I don't have a lot of suggestions for you at the moment but hope someone else will comment. Try not to dwell too much on the idea of TN as the suicide disease. There are medicines and surgeries that can help. Take it day by day and keep searching for help. Make sure your docs know the severity of what you are experiencing.

Thanks guys, i certainly do keep my consultant well informed.. i write down whenever i have attacks and the pains i'm experiencing etc.

My occassional attacks seem to have been replaced by a constant burning/ numbing sensation in my lower lip. However i can seem to eat normally now.. it's very strange how this has progressed in as little as 2 months. I guess what i'm concerned about is how it will progress further.

Fortunately my scan didn't show the presence of a tumour or 'anything sinister' according to my consultant. They seem to think it will clear up through medication alone.. not much of what i have read on the internet seems to suggest that is the case though. And i'm aware this can't be cured, so like you say.. i can learn to live with this.. as i think i am starting to do already

I'm sorry you're going through that! It really sucks. For you, is the constant weird sensation a bit of an improvement over random attacks? I thought that after my attacks went away with medicine that the jaw pain I'm having isn't nearly as bad as being in fear of an attack. But it's also really annoying, because sometimes it hurts to eat. Did your doctor say your problem would go dormant? That's what mine said.

I went to the dentist last week. Around part of my jaw that was hurting, a tooth broke. It turns out that that tooth and the one directly above it are really messed up, the broken one even has an infection in the jawbone! I'm getting the broken one pulled tomorrow. (I'm going to get an implant in a few months, luckily it's a lower bicuspid so I won't look all toothless.) Then I have to get a root canal and a crown on the top one. It was all secondary tooth decay from under fillings.
The dentist was like "Didn't this hurt a lot?" Well, yeah, but I assumed it was the nerve. The dentist was really nice, too, and didn't act like I was stupid for assuming that. He just said "Yeah, it's hard to tell things like that apart from tooth pain."
So maybe my teeth are irritating my nerve? The teeth both had decay down to the nerve. I don't know. I'll try to hope that fixing my teeth will fix my nerve, but not get disappointed if it doesn't.

I hope you guys don't get bored with me posting all the things that happen to me here. I hope someone else can read this thread and get some kind of information. (I guess if people talking about their medical issues is boring to someone, they should probably read a different forum! )

Yep. if we aren't interested, then we probably aren't here reading what you wrote! If it helps you to write, then write! Your experience can also help others.

I hope getting your tooth fixed clears up all your pain. That would be great!

I don't get bored from your posts.. i find they help me a lot! Especially with you being a young sufferer like myself.

The constant numb pain i had now appears to have gone and i'd say i'm relatively pain free at the moment.. probably about 90% normal.

However, I am still on 3x 300mg Gabapentin and 4x 150mg Pregabalin to maintain my current pain free state, until i see my consultant again towards the end of the month. I was supposed to be coming off the gabapentin!

As to whether the constant numb/burning sensation i had last week was better than the attacks.. for me, i'd say: yes.. definitely!

I too have been told that the pain can go dormant (or into remission, as they say) for a period of time, or go away completely. However, from what i have researched.. the latter is unlikely!

The cause for mine is unknown.. scans and xrays did not show anything dental to be the cause.. nor was there evidence of anything pressing on the nerve.

I guess for you it could be the fact you have decay to the root of your nerve.. but i'm not sure whether this can be a cause of TN. Maybe something less serious. I actually really hoped i had an absess or something! lol. So in the nicest possible way.. i hope you have bad tooth decay and that your implant fixes the issue!

Let me know how you get on!

ENTs seem to be well known for dx-ING odd facial pains as TMJ or having large turbinates. Be careful.

I have atypical trigeminal neuralgia on my right side after dental procedures. It's been a year. Hideous pain. Cold wind REALLY bothers me. My meds have been helpful.

Recently, I have some TMJ symptoms on the left side. Doesn't surprise me. I lost a tooth in the above mess, I'm often in pain, I sleep funny due to pain and its hard to relax because this has been a horrible horrible frightening situation.

I'm now doing some things related to TMJ disorder (for left side) and meds for nerve pain (right side). Doing my best.

Hang in there!