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Trigeminal Neuralgia resolving on its own?

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Old 03-20-2013, 12:51 PM   #1
cloudsnapper
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Default Trigeminal Neuralgia resolving on its own?

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!
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Old 03-21-2013, 08:03 AM   #2
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I would definitely recommend getting a second opinion. It is a good idea in many circumstances and i think it would be a very good idea in your case. I do know a woman who was diagnosed with TN that did go away (but I lost track of her and don't know if that was the end of it). It can happen, I guess. Or it could be that she was misdiagnosed. I think most of the time there can be times of remission, but it usually comes back, and I never read about age being a factor. So I would suggest you stay positive and hope she is right, but get another opinion and see which doctor seems the most helpful and knowledgeable. I hope it goes well for you!
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Old 03-21-2013, 08:31 PM   #3
dparis
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Originally Posted by cloudsnapper View Post
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!
My daughter was diagnosed with TN 2 1/2 yrs ago. she is 30. hers didnt get better or go away on its own. hers got worse and lasted longer. she is on extreme amounts of medication and still has pain. she is having Microvascular Decompression surgery this Tuesday. i have faith this will work! Good Luck in your journey.
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Old 03-22-2013, 12:57 PM   #4
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Thanks for the info and encouragement I will get a second opinion after I see the ENT doctor if he doesn't find any cause. I think it's very strange that the neurologist doesn't want to find a cause, but I do understand that it's pretty smart to wait until you find out that it won't go away on its own to do extensive tests or something. (I have no idea what tests they'd do besides an MRI.) There are a couple other neurologists close to me, so it shouldn't be hard to find one.
Dparis: I hope your daughter's surgery goes well!
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Old 04-04-2013, 10:33 AM   #5
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Default An update,

So, I went to the ENT last week and he was like "Lol, why'd your neurologist send you to me? It usually works the other way around." and he pretty much didn't know what to look for. But he said I probably have the start of TMJ or a mild case of it, but made sure to say that he wasn't second-guessing the neurologist's diagnosis and even said that I could have gotten it from holding my face weird from having pain.
He also that I should have nose surgery because my septum is deviated and I have really large turbinates It would be cool to be able to breathe through my nose, though!
I got him to refer me to another neurologist who my aunt either used to transcribe for or it was the one she saw for migraines. Either way, she seems to think he's pretty great. I haven't gotten an appointment time yet, but it hasn't been even a week and I know doctors' offices are busy.
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Old 04-05-2013, 12:19 PM   #6
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Originally Posted by cloudsnapper View Post
So, I went to the ENT last week and he was like "Lol, why'd your neurologist send you to me? It usually works the other way around." and he pretty much didn't know what to look for. But he said I probably have the start of TMJ or a mild case of it, but made sure to say that he wasn't second-guessing the neurologist's diagnosis and even said that I could have gotten it from holding my face weird from having pain.
He also that I should have nose surgery because my septum is deviated and I have really large turbinates It would be cool to be able to breathe through my nose, though!
I got him to refer me to another neurologist who my aunt either used to transcribe for or it was the one she saw for migraines. Either way, she seems to think he's pretty great. I haven't gotten an appointment time yet, but it hasn't been even a week and I know doctors' offices are busy.
I'm glad you are getting to see various doctors. I thought the referral to the ENT doc was unusual, though it sounds like it was a good thing for you if you have a deviated septum. I don't know if that would contribute to the pain... A diagnosis of TN is considered confirmed when a medication for seizures like Gabapentin takes the pain away. But of course the pain can escalate so that you need to increase the dose. A regular MRI is usually just to rule out other possible diagnoses. There is a special MRI that can spot places where blood vessels are pressing on a nerve. That is probably the major cause of TN.

Here's a description I found on a neurosurgery site:

Quote:
The conventional MRI scans used to rule out the presence of a brain tumor or multiple sclerosis as a cause of a patients face pain are not adequate to visualize the trigeminal nerve or an associated blood vessel. Fortunately, the continued improvement in MRI neuro-imaging now makes it possible to visualize both. The technique, which is called 3-D volume acquisition, is performed with contrast injection and utilizes thin cuts (0.8mm), without gaps similar to what was developed for MRI angiography and venography. The trigeminal nerve is easily visualized in the axial plane when the MRI series is centered at the midpoint of the fourth ventricle. To ensure an adequate evaluation, the nerve should be seen on three adjacent cuts. Early studies indicate that when an offending vessel is present it will be detected 80% of the of the time. With continued imaging improvements this percentage will definitely increase.
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Old 04-08-2013, 09:42 AM   #7
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Originally Posted by jjlsongbird View Post
I'm glad you are getting to see various doctors. I thought the referral to the ENT doc was unusual, though it sounds like it was a good thing for you if you have a deviated septum. I don't know if that would contribute to the pain... A diagnosis of TN is considered confirmed when a medication for seizures like Gabapentin takes the pain away. But of course the pain can escalate so that you need to increase the dose. A regular MRI is usually just to rule out other possible diagnoses. There is a special MRI that can spot places where blood vessels are pressing on a nerve. That is probably the major cause of TN.

Here's a description I found on a neurosurgery site:
Thanks for the info about MRI's. I had suspected that was how it went.
The deviated septum couldn't cause pain, except I guess in my sinuses. The ENT did mention that.
I'm afraid the pain is increasing again, because yesterday my jaw hurt a lot for several hours. But I'm fine today, so I'll give it some time.
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Old 04-17-2013, 12:37 PM   #8
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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."
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Old 04-18-2013, 06:32 AM   #9
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Originally Posted by cloudsnapper View Post
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...
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Old 04-26-2013, 08:03 AM   #10
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Default Trigeminal Neuralgia in young male

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
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