There's a fair percentage of MS'ers with TN or ATN.. now granted, ATN is less common than TN in itself.

I had my first manifestation of TN in the form of type 1 (classic TN?) attack me 5 years back (approx). It was short lived. I then within the past 2-3 years have experiened the ATN variety off and on.

It was a dentist in my case that diagnosed my TN (non specific) following EMG. I can recall them trying me on Carbamazepine back then, and wouldn't you know it, I'm one of the 'lucky' ones that experienced a very rare side effect, pitch perception (with music). Go figure!

I also can't take Neurontin (Gabapentin) due to the side effects it caused me.

I'm at a loss as to what I can take now, besides Clonazepam that I need to wean off, because while my doctor prescribed "As needed", it's not a good thing when 9/10 days pain relief is "As needed" is it?

Clonazepam is the ONLY drug that bites through the burning pain I get however. So I don't know where we'll go next. Additionally, there is surgery as an option, but it's less likely to be successful I read in cases of ATN versus type 1 TN.

In any event, it is nice to know we're not alone. I've met folks too in other places outside of NT who also have TN. I think TN is one of those underreported conditions to be fair, and mis/undiagnosed as well.

Laura, the only thing that works for me is Butalbital (generic name for Fioricet), which dulls the exquisite pain, and puts me to sleep.

but because it's a barbiturate (with caffeine and Tylenol) it cannot be mixed with alcohol.

like you, I cannot take Neurontin (rare side effect, made me extremely loopy, I'll spare you the graphic description after only two doses), Pharmacist and Neuro both said "Make SURE you never take it again!"

I was recently diagnosed with ATN, and have had MS for nearly 21 years.

mine was said to be "Atypical" because it's bilateral, an equal side-of-the-head striker.

TN can affect some or all of these areas usually on one side of the face although more rarely (in about 5% of cases) it is bilateral.

http://www.mult-sclerosis.org/trigeminalneuralgia.html

I get quick icepick stabs, mostly in my right ear, sometimes behind my right ear, sometimes in my upper cheekbone area, and sometimes elsewhere on my head.

more rarely, the TN zings my lower jaw, and less frequently, inside the left ear.

least frequently, is a low, dull throbbing pain that sticks around for hours, it's bearable, if I lay down, rest, and darken the room.

and nobody better TALK to me while it's going on, as my usual self-control goes out the window.

TN is my *least* favorite symptom of MS.



more info here, on research and treatment:

http://www.mult-sclerosis.org/news/A...Neuralgia.html

I'm really curious for my neuro to MRI me again, more closely. They only MRI'ed my brain. I'm not even sure if the brain stem was MRI'ed during it, but it would be interesting to see what's happening there.

Burning mouth and TN/ATN. I'm betting it's a hotbed of activity.

So there are a few of us MS'ers here that have the dreaded TN or ATN.

Definitely the worst symptom, BY FAR!

Do you find that your TN is aggravated by weather or pressure changes? I find this can set mine off.

Well, I do not have the MS, but flying is out of the question. For years, I was holding my head writhing with pain while everyone else was joyously celebrating the vacation, family reunion or whatever event we were going to attend. Every one kept asking me, "Well, why don't you just chew some gum, or hold your nose and blow lightly to clear your ears ?" They thought I was being a wimp, and I certainly could not understand why I had such a time with it. Until I was diagnosed with the TN - also, if my sinuses get stopped up or I have a cold, it is likely to set off an episode. I would assume that anytime there is more pressure in your head everything is compressed and increases the pressure on the affected nerve.

Dm and Basset.
Sorry for the pains your are both living with. All of us have diffrent triggers.
Weather and pressure change is a huge one . I get triggered by wind and brezzes, chewing sometimes , brushing teeth on left side. And cold weather my steel plates get cold and then I am a mess
We Are Not Wimps ! We have an invisible monster chewing on us ! Far from wimps lol.
Write down things that you find trigger your pain to flare or eppisode to come and try to accomadate , avoid or learn new way to "deal" .


Low pain wishes for you both
PEACE
BMW

Basset, that's wild. I actually flew in October (I had not in years) and was ok doing that.

I think what set off this most recent attack of TN for me was the Depo Provera shot honestly. The burning pain in my face/head has been an on again/off again phenomenon for me, but it really went haywire with the shot.

Yesterday I felt dreadful. It was sunny, dry and mild. Today I felt fine and it was raining all day. Go figure huh?

While I'm here... anyone else experience taste alteration with their TN? I've noticed taste changes with my case. Not every day, but the odd time I'll notice a strange taste in my mouth. Sometimes I can honestly say "metallic", but other times it's almost like phantom smells that MS causes for me. I wonder if the taste oddities are linked to the MS or the TN

BC, flying is out of the question for me too. I've had one of my worst, early attacks following a flight. My current doctor just dismissed it, but I don't.

Yeah, BMW I just don't fly anymore - my husband travels constantly for his work, and we have gobs of airmiles, but I won't use them. Actually, I always hated to fly anyway, but with the ear pain it is out of the question. I fear that one day I will have to fly due to emergency and it will realy be bad.

Hey DM, I'm glad you mentioned the taste/smell changes. I have started to post this before, but just haven't. The only time I experience this is after I have taken the tegretol. Since I only take it when I have an episode, I probably just haven't adjusted to it and it is a side effect of the drug. But, the really weird part is that it makes me smell "marijuana smoke". I know that's crazy, but I swear that is what it smells like. I will just be walking down the hall at work, home, etc. and all of sudden I just get a whiff of it. And believe me this is not something that has been embedded in my brain longing for my younger years - I was a good kid and was afraid to smoke the stuff, but I was around a lot of friends that were, so I do recall the smell. This usually lasts for about 24 hours after taking the tegretol.

Then one time, I could swear my husband was baking cookies - it smelled just like fresh baked cookies - much better than the pot.

Peace and less pain to all......

Rhonda

Oh I have to touch on what Dm asked about odd tatse.
I thought it was just me .I have bad matalic taste ALL the time . I thoiught it was just me cus i have steel plates in both side of lower and also steel strips aorund gum line and posts for fake teeth. So I just thinking with all that "junk" for my mouth and jaw ..corse I am bound to have that matalic tatse . This is intresting.
I havent found that I have odd smells issue , but I have found my smelling has been ... better. I can smell things beofre my kids or hub. They kid me soimetimes and say i have blood hound in me .
I cant fly and even when I go driving in mountians in carolinas / virginia that gets me .
Pressure change can most definatly affect T.N., O.N. and all that !!!!!!! EE03 dont let doc dismiss it. plenty of us have that as a trigger.
Gotta get going .
Low pain great week is wished for all of you.

PEACE
BMW

Yes BMW, mountain driving gets to me too. My doctor is old school and seems to dismiss lots of things. It seems all TN'ers know these things better than docs . Low pain wishes and to all!