Originally Posted by aburton83

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

Originally Posted by aburton83

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

Originally Posted by cloudsnapper

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! )

Originally Posted by cloudsnapper

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! )

Originally Posted by cloudsnapper

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!