How does Trigeminal Neuralgia start?

[Celery47]

I was hoping those of you who've been through trigeminal neuralgia could tell me a little about how your problems started - I've been having some suspicious sensations in my jaw, and I'm worrying if trigeminal neuralgia might be in my future.  It sounds just awful!  I'm so sorry, for those of you who do go through it :(

I've been having all kinds of weird sensations and nerve pain all over my body for a couple months now, but none of it was in my face.  Then, about a month ago, I noticed the left half of my jaw/mouth/cheek was getting all... ha, I want to say "jangly," but that's not even a word, so I guess it was just pins and needles, kind of numb.  It'd come and go - it lasts a couple minutes or hours every day or so.  

Lately, though, it's also been burning sometimes.  In the last couple days, I've had a few periods of plain pain running along my teeth and jaw - they last only a few minutes each.  It's not BAD pain, though - I mean, it hurts, but I can still talk and function and all.

I'm just wondering - does this sound like it's building up to trigeminal neuralgia?  IS there a build-up with this disease, or does it just spring on you out of the blue?  Thanks for any help or reassurance!!  I sure appreciate it :)

Thanks, all -

Louey

[jameshaulker]

Hello, my problem started about a year ago. It started as a toothache and I scheduled an appointment with my dentist. He suggested a root canal for a tooth infection. I kept my mouth opened for half an hour and I came back with the severe pain. My tooth was inflamed and it enhanced my problem. I took the dental treatment for over a year but did not get any relief. Later, I consulted a neurosurgeon who suggested that I am suffering from Trigeminal neuralgia. The pain often comes in the morning or when a draft of air comes in contact with my face. I am taking Freedom kit with OM13 formula suggested by one of my friends. The products are all natural and safe. I have started taking these products for over a month and have much relief in pain.

[BOK2Bjan]

TN was one of the first issues from MS that I had. They didn't know I had MS until years later. I was just dx with TN. I had a sudden sharp pain that radiated from my lower jaw, up to my cheek on one side. It was obviously a nerve pain. It was so bad, I screamed! I went to my clinic (I was with Kaiser at the time), and was dx with Trigeminal Neuralgia. It was intermittent and lasted a week maybe. Then came back about twice more.

That was about 20 years ago, but the pain was memorable! It was so sharp, yet lasted a very short time. Pain meds were useless because the pain was so sudden and short lived. It was like someone had shocked the nerve - like lightening shot up my face! Very unpleasant.

[jenplegl]

I was diagnosed with MS at age 30. In my late 40s I got TN in the left side. Later on the right. I'm in my early 50s now. It's a progressive disease. I take a high dose of neurontin with trileptal. I could not tolerate tegratol and went through hell for almost 2 years because my neurologist wouldn't listen to me so I got a new one. It's very bad on the left. In the beginning it was like a bolt of lightening and literally knocked me on the floor. I struggle to keep the swelling down around my temple and above my ear. I have broken teeth I'm avoiding having removed because of setting a off the TN. On the left I have all 3 sectors and on the right the lower 2.
My neuro has recommended the brain surgery to place spacers along the nerve to control the pain but it is not always successful and must be repeated every 10 years. I'm not ready to do that. Plus I know a local woman who had an unsuccessful experience with it.
I have a lot of numbness and tingling over my body. I've lost my reflexes in my legs completely.
Clearly my case is due to MS and I do have 2 lesions on my brain.
You can have MS with no lesions. I didn't have any until my late 40s.
If you have facial pain you should always rule out everything first from tooth decay to TMJ which I do not have, although I have bad jaw joint pain, but it came after the facial pain.
TN is considered a rare disease so I don't think anyone should expect the worst. My case is considered rare.

[Celery47]

I just wanted to say thank you, everybody!  Thanks Quix for the very thorough information, and thanks Jen, Stephanie, Jan, Ufrustrated2 and Nancy for sharing your experiences!  It's really good to hear all the sides of it.  I always feel better with more information.  I love this forum!

I have a dentist appointment set up in a couple of weeks.  And actually, my face has been really quiet these last couple of days! :)  I'm going to try not to worry about it, and keep my fingers crossed - and I'll keep em crossed for you guys too, Nancy and Jen!  

Jan, I am definitely no expert, but that kind of swelling doesn't sound nerve-pain related to me... it does sound weird, though!  Hmmm... I'm sorry your mouth is acting up like this! :(  I have heard that tons of autoimmune diseases mess with your mouth a whole lot, but I'm afraid I'm not going to be much help... I'm just hoping it gets better!

Thanks again so much, everybody :)

Louey

[Nancy T]

When I began having painless electric shocks along the trigeminal nerve (around the eye, side of nose, and upper lip--so all three branches at once, I guess), not to mention the spots of crawling, itching, warmth, and semi-numbness in my face, and realized it must be the trigeminal nerve, I was afraid it would turn into the awful pain you hear described.

Hey, that was ten years ago and nothing bad ever happened!!

I still have the painless shocks and also some jabs and crawling, though the latter two to a lesser extent than before.

I have never been diagnosed with MS or anything else (but I also have Lhermitte's, dizziness, paresthesias elsewhere, fatigue, and other stuff).

My very first symptom 11 years ago (not counting dizziness for many years) was some PAINFUL, lightning-bolt shocks below my ears. They were intermittent, stopped after a couple of weeks, and I didn't mention them to a doctor until other stuff started happening a few months later. I'm sure now that was an attack of TN.

Please don't worry that you will develop terrible pain. It may never happen. It didn't to me.

Nancy

[janbubears]

Hi

Last week i had a very unexpected sore swollen gum on right top side of my mouth, sort of between gum and roof of mouth. It was nothing related to something i had eaten just woke up one morning with it. It was white and extremely swollen i couldnt eat or chew.  My teeth in that area are fine i had no dental pain my teeth were checked only the previous week.  I have had bouts of neuralgia before.  

The swollen gum lasted around 2 days and left me with some face pain. do you think this has anything to do with the problems i am currently having - i apologise if you not read my previous posts . kind regards jan xx

[Ufrustrated2]

>...  The 2nd branch handles the cheek below the eye, the nose, the upper jaw, teeth/gums.  

this area has been problematic for me for years and med records show many complaints. i'll bring it up with my neuro [again].

i did have a dentist, a professor/practitioner of denistry, take a look at that right upper row of teeth. he and exrays and another doc there couldn't find a problem with any teeth that would cause the pain.

i was so frustrated i had them remove a tooth anyway. didn't help! this is what chronic pain does to the brain i guess...bad decision.

yeah get your teeth looked at first. at least then a goofy neuro can't steer you into that direction wrongly.

[steph74]

Quix--The neurosurgeon I saw agreed that bilateral TN at 34 (age of onset--I'm 36 now) basically could have no other cause than MS.  Yet, I have clear MRIs...  I've had so many clear MRIs, I just don't want to bother with them anymore, but I'm afraid my neuro will think I'm being uncooperative and at least she's treating my sx.

Louey--I did have the tingling "prodome" that eventually built up to full-fledged TN.  I didn't recognize it as such on the left, but it actually went on for years, just tingling.  Eventually it kicked into real pain.  Interestingly, I started having tingling on the right and within a few weeks it had turned into TN.  So I don't think you can say too much about how or when TN will occur (or if it will) if you're having tingling now.  I've learned to appreciate the tingling/numbess as a slightly novicaine feeling that is much preferable to the alternative!  :)

Stephanie

[Quixotic1]

It does sound like what is currently being described as a common "prodrome" to Trigeminal Neuralgia.  However, TN can also just appear full-blown out of the blue.

TN is caused by the main nerve that handles sensation from the whole face.  That is the 5th Cranial Nerve and is part of the Central Nervous System because the nerve arrises directly off the brain stem.

Several articles have described a tingly, jangly, (Hey, Mr. Tambourine Man, play a song for me...") prickly sensation preceding the onset of more classic, painful TN.  This may be of varying duration and precede the onset by weeks to months.

It sounds like you are describing the 2nd and 3rd branches of the Trigeminal nerve.  The 2nd branch handles the cheek below the eye, the nose, the upper jaw, teeth/gums.  The 3rd branch carries sensation from the lower jaw, lower teeth and gums and the side of the anterior tongue.

My TN was a very intermittent jab of excruciating pain when I was chewing.  I knew EXACTLY which molar it was coming from.  The pain was so fast, surprising and intense that I would let out a quick gasp and sound of pain.  By the time the sound was out the pain was already subsiding.  The dentist told me repeatedly the tooth was fine.  Yeah, right.

After a few months the intermittent short stabbing pain was joined by a deep, awful boring ache deep in my jaw and near the TMJ.  This is also described as Atypical TN in the general population and as Symptomatic Atypical TN in the MS population.

The pain became progressively worse until I finally complained about it to my neuro who prescribed carbamazepine - the recommended first-line drug for it.  This worked very well for me.  I don't think Lyrica has even been studied for it.

TN is 300 times more common in the MS population than in the general population.  It is also see far younger, so the appearance of TN in a person less than 60 should raise the possibility of MS to the alert and thinking neuro.  Bilateral TN is almost always due to MS.

If one has pain near or involving the teeth it MUST be checked out by a dentist.  One of our members recently with MS had severe pain and it was, indeed, rotten teeth.  That's why the first check should be with the dentist.  However, if the teeth look okay, do not let an undeducated or unscrupulous dentist remove teeth or do procedures until seen by the neuro.  A good dentist should recognize the pattern of severe dental pain in a person with other neuro problems or with MS and know that this is TN.

Hope this helps.

Quix

[jensequitur]

The thing is, nothing is certain - except death and taxes, right?

I've had tingling, buzzing, some pain sensations, and most recently cold sensations in the right side of my face.  So far, no real pain.  (knock on wood!)  I have had some pinprick pain that was excessively painful, but it didn't last long.  So I am fearful that this could turn into TN.  But so far, nothing.

I wouldn't worry about it.  If it starts happening, talk to the neuro about neuropathic pain relievers, like Lyrica.  Nothing else you can do until then!