TN - everyone is doing it

[ashleyPT]

I had been having right sided jaw/face/tooth pain for about a month and completely ignored it.  It got really bad about 2 weeks ago and I decided it was my old TMJ issues acting up and continued to ignore it (I also ignored the fact that my TMJ pain was left sided).  Then my whole arm/ER thing happened and it didn't even cross my mind to mention the pain I was having.  

I went to the dentist today and mentioned my pain - thinking maybe my night guard needed to be tweaked or a tooth was bad - I dunno, something.  My mouth guard is only 6 months old (I usually have them about 2 years) and all my teeth are fine.  The dentist said that it's not a dental issue, and that it sounded more like TN.  I realized while discussing it with the dentist that it started to feel better a couple of days after my steroid treatment.  

It has been worse the past 2 days (so have my arm symptoms actually).  

The idea of the pain being TM still seems strange to me because I haven't even taken meds for the pain and what I hear described seems so terrible that I feel like the pain couldn't possibly be that.  The distribution is down my jaw line and into the right side of some of my bottom teeth, across my cheekbone to the edge of my nose, then some pain to the lateral side of my eye, and tingling into the edge of my forehead.  Of course now that I think about it - I know the distribution of the nerve and it's consistent, but shouldn't it hurt more if it was really TN?  

I'm not diagnosed, and usually I try to think of every possible explanation before I even consider another symptom that is consistent with patients who have MS.  

[ashleyPT]

Thanks for the info guys

Of course I completely forgot to mention this to my neuro today  - I even had a list and everything.

[Nancy T]

P.S. I remain undiagnosed with anything, but I know I have "cranial neuropathy"--the 8th cranial nerves are very abnormal per evoked-potential testing.

[Nancy T]

I would go even further and say that TN can be painless, although in that case I wouldn't necessarily call it trigeminal NEURALGIA, because neuralgia means "nerve PAIN." But still, it's an indication that something is whacked out with the trigeminal nerve.

Namely, I get PAINLESS shocks in the exact distribution of the trigeminal nerve in my face--in a semicircle around the eye and running into the side of my nose and into my upper lip. I have had these painless shocks for years. But they are definitely electrical in nature. I get them on both sides (not at the same time), although much more often and more extensively on the left.

I also have had MANY episodes (over the past 11 years) of mildly painful stabs and jabs, either electrical or not, in my face in various places (such as just the jaw, or just the cheekbone, etc.), not to mention many paresthesias such as spots of intense crawling or itching beside my eye, on my chin, on my forehead, etc. in areas corresponding to that same trigeminal distribution.

The very first symptom I had was a PAINFUL attack of shocks below my ears, which I am sure was real trigeminal neuralgia. Fortunately it did not last long, and the shocks were not so frequent that I went to see a doctor about them (when they stopped after a couple of weeks, I forgot about them until other stuff started happenign weeks and months later).

So--my opinion is that trigeminal-nerve symptoms can range from painless electric shocks to the suicide pain that people have described (which I never experienced, although that first attack would have been unbearable had the shocks lasted longer).

I hope you feel better soon! :)

Nancy

[Mike_Shuswap]

My TN (I haven't been dx'd with TN, but have been dx'd w MS) usually comes on suddenly with SEVERE pain in the left upper or lower mollar area.

It always moves (top to bottom or vice versa) and always stops me in my tracks (I gotta stop and put my hand on my face and moan and whine WISH like hell it didn't hurt soo much!)

This severe pain lasts only about 5 minutes usually, then the pain backs off to not much more than discomfort for a few hours.

Occasionally I'll get only the discomfort, which is a real bugger because I keep waiting for the tear inducing pain, which may or may not come.

I'm on 900mg Gabapentin, and I thought it was helping with the TN, but it reared its ugly head again over the last 2 days (no TN this morning though, knock on wood)

I would think even if the pain is on the mild side it would still be TN if the pain is nerve related.

It'd be like all these other MS or screwy nerve things, presenting different in different people.

Oh, and you don't have to have MS to have TN. It can be related to MS, but it can also be a stand alone condition.

Quix posted a good site to vist re TN a while back with a questionare to determine wether it's TN or not.....wish I could remember it. Maybe someone knows the site??

Mike

[mistylee]

TN can vary from mild to severe pain.  I have TN and have experienced it at both levels.

Mistylee

[tonyad]

  Ditto on what the others had said.....It hurts Soooooooo B.A.D!! I can see why they call it the suicide pain Lulu!!

    As mentioned above, i would certainly mention it to the Neuro also. At least it will be in your chart.

    I have it as Dennis also (dx w/ TN right Dennis?)  ANd leaves ne WIPED out in between the realing(sp) pain. also, between  what I call "Episodes" it is very, very sore to touch or to evan lay on at night to sleep. Then all of a sudden..oUT Of No Where...It wants to wreak havoc on me again and again!  then decides to rest....then the same scenario over and over.....Oh my Gosh.(this sounds like an intense part of a Novel  LOL)

    I do have a very HIGH pain Tolerance also so for me to have to bow to this monster really ticks me off !  Ashley, I would certainloy give your Neuro a call...From all that I have read,,It just tends to get worse over the years.

    Are they giving you any meds now...besides the Roids you just completed??
I hope you get answers soon....
~Tonya
  

[zenhound]

Might not be helpful since I'm not diagnosed, but I have what my neurologist is calling TN and sometimes the pain is really intense and sometimes it's not.  Lately it has been doing this really fun thing where it feels like someone hit me on the jaw, just a dull ache that I can feel back into my jaw.  Then other times it decides to go all stabby on me and it feels like someone is stabbing me with an ice pick.  But there are definitely times when it's less severe and just at an irritating level more than anything.  

[Sailorsong]

I have had TN in the past and as Lulu said you want to be dead it hurts so much. I do have a high pain threshold ( have had root canal with no pain killers). While I do not know for sure how much pain there is is natural childbirth, I would expect this to be either equal to or greater than that.

But I have gone through pain in the same areas as the TN without that level of pain. I don't know if those episodes were also TN in which I was able to block the pain or not. With the messed up nerves who can say for sure.

I would definitly mention this to my Neuro as Lulu suggested.

Dennis

[Lulu54]

I'm with you on this one, Ashley.  TN is known as the sui ci de disease because the pain is so off the chart that you wish you were dead.  

But I honestly don't know if it always has to be that painful.  Have you talked to your neuro about this one?  I know you are having trouble getting answers and maybe this will help piece it together for the docs.

feel better, Lu