TN or MS symptom?
 

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.

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.

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.

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.

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. :hug: 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.

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

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!! :hug:

Cherie

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

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 :rolleyes:), 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

I did, and was told I'm too young (31).

Plus my current man wants children eventually, and I'll be honest, of all the guys I've been with, he's the 1 that I could see myself having children with.

He already knows of the high risk factor (endometriosis doesn't make it easy, having a LEEP weakened my cervix).

I don't know if I can even have an IUD (which could solve this problem) after having had a LEEP. I'll have to ask my gyno.

Depo P. has been a nightmare beyond just the ATN flare up (first time it caused a type 1 TN flare up... years ago. I just didn't understand it as such). I've had auntie visiting since Nov. 10 to varying degrees. That's not normal with the shot. It's like my body's telling me "NO WHAT WERE YOU THINKING?!".

Sorry to go so off-topic, Catch . . . and I hope this doesn't deter people from posting if they have any input to your query. :eek:

I didn't even consider children till I hit 31 . . . and I already had MS then too. I did well. :) Hope you can find something that works and doesn't cause you problems (before you "plan" them ;)).

Cherie

Well, it's kinda still on topic, because I know my ATN is due to my MS, but I know my main trigger for an ATN relapse (or brief episodes with classic TN) is completely hormone related.

Another thread asking an MS/hormone question so not to steer this one off the main focal point.

Important to note that TN/ATN are considered a symptom that can be caused by MS, so it's one that if it changes in intensity or duration of episodes, keep a journal and let your neuro know. I blog and keep a watch on how long mine goes, and what the triggers are (as I try to do with other symptoms).

A few weeks ago, I had the most extraordinary pain in my upper teeth. Almost a pulsing pain. It kind of felt like I had been hit in the mouth and had my teeth loosened by it, but I hadn't. I didn't think it could be a cavity because it was several teeth all next to each other on the same side. It came on very suddenly and lasted several days and went away as suddenly as it came on. Could that have been a TN kind of thing?

It could have been.

I had a situation one time, where I had a molar that hurt like you are describing. I went to my dentist, and he said there was nothing wrong with my tooth. I went to the doctor, and he said "must be the tooth, sinuses are good". I went back and forth to each doc 2 times each (the pain lasted about 10 days) .... until one day, my entire tooth fell out, roots and all. :eek:

I have had mouth issues, including intermittent numbness in my teeth, since my teens. I have also had mouth numbness (lips, throat, roof of my mouth, etc.) and facial numbness . . . plus that experience with the tooth that fell out. They've never determined exactly what causes it, but I'm inclined to think it is related to the MS. :confused:

Cherie

I get tooth pain with the ATN as well. Usually on the right side and since I have had the pain on and off for more than 15 years, I'm pretty sure there's no dental issues, and so is my dentist.

In fact, now that I think about it, tooth pain was probably my first sx of TN, and goes back easily 15 years, with years of remission, and only minor outbreaks of pain. It has only gotten worse over the last few years, which lead up to my MS dx. There are times when it is painful to chew on my right side.

Still haven't figured out the pain at the corners of my mouth, but I'm pretty sure it's related to the TN.

The first spot I had pain Catch was actually right above my top row of teeth on the left side, now that I think of it. That was in 2000/2001. I can remember it, because I even tried putting the non-coated tylenol on my gums to try and dull the pain, and I went to a dentist at that time to have it looked at, and they found nothing wrong through xrays.