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Old 11-08-2008, 08:40 PM
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dmplaura dmplaura is offline
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Join Date: Jul 2008
Location: Moncton, NB, Canada
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dmplaura dmplaura is offline
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dmplaura's Avatar
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
Default Atypical Trigeminal Neuralgia

I'm almost suspecting this is what I'm dealing with.

My dentist who EMG'ed me last year marked me down with Trigeminal Neuralgia, however I am not affected day to day as I have read those with TN describe it.

In the past I got the stabbing pain episodes, and this occurred over the course of a few months, randomly (4-5 times?). Then it just stopped completely.

I haven't had a repeat like that, but I've had dull boring pain in my left side of my face, to burning pain in my left side of my face, and what I originally suspected as burning mouth syndrome, which I believe has to be somehow connected to the idea of Trigeminal Neuralgia.

I read a bit about Atypical Trigeminal Neuralgia, and my pain pattern seems to fit this. Right now, I take no preventative medications for TN OR ATN. I have tried Carbamazepine and Neurontin, and I had bad side effects on both. I tried Amitriptyline, but during the time on Amitriptyline, I don't recall having burning or boring pain in the head like I do now. I stopped it, because I began taking it for burning mouth syndrome (which I believed I have, and that's still in the air) and felt it was not benefiting me much at all, plus I had a ton of side effects on Amitriptyline.

Now, I have only Clonazepam that I can tolerate, and has in the past helped the mouth pain. Surprisingly, it can also help the burning head pain, but it's very touch and go. Sometimes I get the pain, take Clonazepam, and it intensifies and I have to sleep it off (sleep is the only relief period). Other times, the Clonazepam is like a wonder drug to calm down the burning.

I quit smoking for the mouth and my mouth pain almost went away completely. Now, it's back since the burning in the head/scalp returned, but I experience my burning bilaterally (scalp to cheekbone on the left, in both cheeks and then on the right side of my tongue).

So perhaps what I have is not in fact burning mouth syndrome, migraine headache (what my neuro suspects) etc etc... perhaps I have atypical trigeminal neuralgia?

I certainly fit the pattern. I sleep, it goes away. I wake up, I'm pain free for the first few minutes after being up, and it gradually comes back again. It sticks around for weeks to months at a time.

Is there anyone of you fine NeuroTalk folks who has ATN (Atypical Trigeminal Neuralgia)? I'm looking for those who have this specifically, because I know convincing either my GP or neuro that I have regular TN (as my dentist's EMG showed) is a chore in itself, let alone telling them, "I have a suspicion I may have ATN" is going to be something out of this world.

Those with ATN... do you get this into your cheeks and mouth as well? The tongue? How about those with classic TN? Can it affect the mouth?
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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