NeuroTalk Support Groups - Atypical Trigeminal Neuralgia

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/)

- - Atypical Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/59252-atypical-trigeminal-neuralgia.html)

You know, I wonder how many of us have whackiness going on in our brain stems? :p

A lot of the sensory stuff to do with the face/senses such as taste and smell point back to brain stem issues/lesions etc.

Maybe not all of us have been diagnosed with MS.. but lesions can occur with other conditions as well. Does TN in itself cause lesions or result in? I haven't done much reading on TN apart from MS, so you'll have to teach me a bit.

When my TN flares, the taste gets altered. That much is for sure. When taste gets altered, often smell does as well.

Marijuana is 1 smell that I can relate to smelling when it's not actually present. With MS we often refer to these smells that are not actually there as 'phantom smells'. It's a recognized phenomenon ;).

Quote:

Originally Posted by dmplaura (Post 404547)

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?

I have a been told that I also have ATN. I have had mvd surgery that helped the typical shocks of TN but I still have pain in my teeth and gumline area as well as my cheek area. The doc says it is ATN which to him means it is hard to treat and unexplainable. No med or treatment that I have tried yet has helped except for lortab. My neuro says that TN patients shouldn't get relieve from lortab but oh well I do. I hope this helps. I know that trying to explain this to docs is hard but I hope you have good luck!

Thanks Jess. My neuro actually didn't brush me off when I said "Atypical Trigeminal Neuralgia" and explained the pain pattern. He agreed with my dentists suspicions, but I'm almost curious to go with more testing to see what comes up.

I find I'm helped by Clonazepam, but it's tough when you have to take it daily for a lengthy period, because then when you want to stop taking it, you have to wean off it which can be tough.

My TN started with pain in my teeth. I would go to the dentist complaining of pain on the right side. Eventually, I had a root canal on every tooth on the right side of my mouth trying to battle the pain. It was useless. When that didn't work I was sent to the Endodontist, who after an unsuccessful root end resection, decided to send me to the neurologist. Kudos to the Endodontist that recognized the TN.

Resurrecting this thread as one of the diagnoses I have from my neurologist (I am fairly new to the board) is "atypical facial pain"/"atypical trigeminal neurgalgia". Mine sometimes is pain, sometimes is a tingling/electircal/ticklish [but not pleasent ticklish] feeling, or a tingling like when your foot goes to sleep sorta feeling, and sometimes is more like a pressure feeling, too...Even maybe a "shooting" pressure feeling, if that makes *any* sense (it is a hard feeling to describe, 'shooting pressure' or 'stabbing pressure' is the best I can come up with, I think...). Sometimes there is a numbness component to it, or a numbness-and-yet-increased sensitivity component to it. Or sometimes it's a very hard feeling to describe at all, except that, despite not being pain *per se* at that point, it is a distracting/annoying enough just *sensation* to make me wanna tear my face off to get rid of the ticklish/tingly/pressure/shooting pressure.increased sensation.whatever. Anyone else had anything similar?

I 'had' classic TN with electric stabs in the left ear, cheek and jaw. The shocks would morph into a continual burning. I didn't have mouth or tongue pain although movement of my tongue would often trigger a shock. Hope this info helps. Best of luck and hope you have pain-free days ahead.

Todd

Quote:

Originally Posted by dmplaura (Post 404547)

HI guys,

I am officially joinging the group here in this forum.

I have ATN or secondary TN from a HSV1 viral infection that was caused by dental work.

I guess the virus lives in my trigeminal nerve and the trauma of the dental work caused it to flare.

It affects the v1 branch on my left side and the v2 and v3 on the right. It has also wreaked havoc on my occipital nerves as well.

Hope to learn from all of you. :)

:grouphug:

I've only had the one attack of TN (thank goodness) but strangely enough, mine too followed a dental procedure. It mostly attacked my jaw along the lower branch of my trigeminal nerve, and was treated with Tegretol.

Thedspeth and Shelley, I have no idea whether my TN was typical or atypical, but I wanted to let you both know that some-one is thinking of you! :grouphug:

I hope you both get relief soon as I sure do remember how nasty those shooting sharp pains can be.:(

Sending you both lots of positive healing thoughts and prayers. :smileypray:

((((Koala))))) thanks so much for your post and support. I am so bummed that this all seems caused by a dental procedure. It truly sucks especially since I am only half way through the implant procedure.

But I finally think I have some good docs on the case so just hoping they can reduce the pain so I can manage my way through life until this resolves hopefully. :)

I posted this in another ATN thread but wanted to add it here. I have been suffering for years and also endured the misdiagnoses of migraines, TMJ, and sinus problems - finally after a trip to the ER I went to a neuro who listened to what has been going on and diagnosed ATN. When I researched ATN I was shocked at how my symptoms fit - what a relief to know what was happening to me...........
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Hi - I was also diagnosed with Atypical Trigeminal Neuralgia and was at the point of begging my neuro for just one day of relief from the pain.
He perscribed Lyrica and it is a godsend for me!! The side effects are annoying such as feeling loopy, weight gain and unable to concentrate - but the the relief from the ATN pain in my face is worth it! Not sure if this will help - but I've read that they are just beginning to use Lyrica for ATN, so maybe it's an option you haven't tried. I hope you too can find some relief.. it's truly a debilitating disease! Best to you, Barbara.