[Catch]

I've got Atypical Trigeminal Neuralgia, mostly on my right side. Its been acting up fairly severely in my first year since being Dx'd w/MS, luckily reacts well when I'm on steroids, etc., and has been pretty quiet the last few weeks. However, here's something new: The same type of severe burning ice pain I get in my ear is now occurring at the corners of my mouth. Usually its not too bad, unless I open my mouth, sometimes ear pain accompanies, sometimes not. One time it felt like there was a knife from one ear straight through my head to the other ear, and passing through the corners of my mouth. (I felt kind of like the Joker looked.)

Related? Or is this an MS thing? Or something else? Just trying to gauge whether I need to see my neuro or not.

[dmplaura]

I too suffer ATN with my MS (mine's flared up apparently right now due to the birth control shot... lovely!) but I've had burning occur in all types of places from my scalp to the inside of my mouth.

I'd maybe call your neuro to mention it and see what they have to say.

What do you find helps your ATN drug wise? All I currently take is Clonazepam (1mg a day, small amount) and Tylenol with codeine for underlying headache as needed.

[Catch]

My husband takes amyltriptaline for sleep and pain, and I tried it recently and it seems to make a big difference! I'll call my neuro on Monday to talk about an Rx. The last time my TN went full blown I could barely ope my mouth to speak for three days. People thought I'd had oral surgery.

[dmplaura]

I hope you continue to have success on Amitriptyline.

I had way too many side effects from the medication to continue taking it.

For me the burning pain sensation I get was only resolved by Clonazepam.

[lady_express_44]

Sounds very uncomfortable!

New, or worsening of existing symptoms, that last longer than 24 - 48 hrs, is a sign that you are in an attack (unless you have infection stirring things up).

I don't call my neuro when I have attacks, because I don't do steroids. If you might plan to do steroids though, then it's probably worth calling him.

Hope this just blows over soon. I often find that many (but not all) of my facial symptoms do within a few days.

Cherie

[dmplaura]

Originally Posted by lady_express_44

I often find that many (but not all) of my facial symptoms do within a few days.

Cherie

I wish I could say the same. All that changes with mine for the last 2 months is intensity of the pain with the weather pressure fluctuations.

[lady_express_44]

Originally Posted by dmplaura

I wish I could say the same. All that changes with mine for the last 2 months is intensity of the pain with the weather pressure fluctuations.

I know Laura . . . you've got it in a bad way.

I've had mouth numbness and burning that lasted several weeks, but everything else has been more fleeting, or much less intense.

I feel for you ladies!!

Cherie

[weegot5kiz]

anything older than 48 hrs call doc, was curious do you keep a journel about SX and meds and how you are doing?> it may help down the road as new things pop up or in case you forget you had this or that SX a year or two ago a journel can be a good thing

[dmplaura]

Psst Cherie, I honestly think the Depo Provera shot caused this one.

It came on within 2 weeks of getting that shot, and never went away again yet.

I have 1 more month and a bit of the shot in my system... I'm hoping once it's out that things settle down again.

If they do, we know with almost certainty that Depo P. is not for me! Last time I was on the shot, same deal, TN flare up (though at the time I certainly didn't know it was TN, and being stubborn never went to a doctor about it).

[lady_express_44]

Originally Posted by dmplaura

Psst Cherie, I honestly think the Depo Provera shot caused this one.

It came on within 2 weeks of getting that shot, and never went away again yet.

I have 1 more month and a bit of the shot in my system... I'm hoping once it's out that things settle down again.

If they do, we know with almost certainty that Depo P. is not for me! Last time I was on the shot, same deal, TN flare up (though at the time I certainly didn't know it was TN, and being stubborn never went to a doctor about it).

My one daughter is on b/c for very severe PMS (chip off the old block ), but I opted her out of the D/P option. I'm not sure it would work as well for PMS anyway . . . but also my doc was not keen on giving it to her. He is very conservative, knows I have MS (of course), knows her symptom history, and he discouraged us. I was only tempted out of convenience, and because she is bad about remembering.

I took care of that problem as soon as I knew I didn't want more kids. Ever considered that option?

Cherie