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Trigeminal Neuralgia resolving on its own?

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Old 04-27-2013, 12:24 AM   #11
Peter G
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Originally Posted by aburton83 View Post
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.
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Old 04-27-2013, 08:03 AM   #12
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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.
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Old 04-30-2013, 01:50 PM   #13
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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
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Old 05-07-2013, 11:47 AM   #14
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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! )
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Old 05-08-2013, 11:23 PM   #15
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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!
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Old 05-15-2013, 12:08 PM   #16
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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! )
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!
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Old 06-09-2013, 08:29 PM   #17
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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!
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Old 08-25-2013, 01:13 AM   #18
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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 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
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Old 08-27-2013, 09:50 AM   #19
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I'm so sorry you are suffering with this pain. Like I said earlier, I have TMJ on one side, and ATN, on the other.
ENTs do not know about this disorder.
Stick with a good neuro. Perhaps you should get an MRI with contrast relatively soon and an MRA as well. See if your neuro is willing to order these. If not, it might be a good idea to get another one.
My neuro ordered two MRIs with contrast and an MRA.
I understand if medication can't get it under control Microvascular Decompression Surgery, also known as MVD surgery, often works very well. Some people get TOTAL relief!!!!
I have also heard of people getting better over time and it changing to more like an atypical trigeminal neuralgia (which is what I have). I use various medications...one is a cream I put on my face. The Gabapentin is in the cream, so the side effects are a little less. It still does negatively influence my memory.
Check out the useful sites thread. I go to a TN group on line and have gotten some really helpful information talking with others with ATN.
Good luck.
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Old 10-13-2013, 10:11 AM   #20
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My case sounds a bit similar to yours...

I had my first TN attack 7 years ago, when I was 30. I was convinced it was dental and after four months of severe pain I was diagnosed with TN. I was put on Amitriptyline and stayed on it for two years until I wanted to get pregnant. I went off of it and the pain never came back...
Until this year. Now I am trying Amitriptyline again and it seems to be working. I am still in the process of increasing it.

TN is a progressive disease so it does not just go away. It does go into remission though. My mother has it as well and she has long periods of remission. It seems that when it does come back it gets worse, which is what I am experiencing now.

There are also different types of TN. I was quite confused because my TN does not come in short bursts of excruciating electric-like shocks. Mine always come on slowly early in the day and by the end of the day my entire left side is killing me, like I got punched in the face. It starts in my bottom and top molars and radiates to my jaw, cheek and ear all on the left side. Once I discovered Atypical TN I was like that's me!!! So everyone is different and everyone's pain is different.

And for me there wasn't a definitive diagnosis. First a dental cause was ruled out by several dentists. Next I went to a TMJ specialist who said I have TMD and was given a night guard. My MRI was completely fine. No amount of pain medication would touch it though. Amitriptyline has worked for me but it doesn't seem to be a common medication for TN and I do not think it works all of the time. These are some of the reasons this disease is difficult to pinpoint though. It just seems to be more of a process of elimination.

Good luck to you
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