Let's talk TN (please)...

[tonyad]

   I need some info as I am still a bit unclear on the whole Trigeminal Neuralgia stuff.
I know that several of you have either experienced TN or have a current problem w/
it.

    I did google it and went to NMSS to read up on it but I gues I still just don't fully
"GET IT".  I guess the best thing for me to do is to let you in on what has been happening
and then you tell me your thoughts.

    * Is this TN;
About a week or so ago Ious pain (out of no where) come on
like around the top or my head...forehead.....temple area. it hurt SOOO much to even touch the top of
my head...then after a few minutes.....my cheek bones (both i think) started to really HURT. By now I am rushing for the bed to lay down. I could not even lay on my side as the cheek /jaw area was VERY painful to lay on/touch.
then about I don't know ...perhaps (5) min later....My jaws were hurting so bad, I could hardly open my mouth.
this lasted for a little while. The top of my head and temples stopped hurting as the pain moved down, but the after math of it is that it was very tender to touch, rub, run comb through hair.

     It subsided that same day but since then every day a couple times a day I have this HORRIFIC pain come over me. It comes and goes throughout the day. Still very sore to lay on / touch.   SO, what the heck could this be???

     I read that TN was mostly one sided and not on both sides so I am wondering what this is. Any thoughts or similiar experiences are greatly appreciated.  Let's just say that when this pain in the head / face/cheecks/jaw hits
It makes a migraine feel like a piece of cake. Although I have never really been a headache kind of pwerson.

     Could all this throughout the day just be Migraine headaches?  I guess I just need some input as to whether I should call my Neuro or not. As always, Thank You for reading and responding.
Oh ya, one more thing...when it is in the temple area it kinda goes like just to wear the top of the ear (but in head) is and a slight bit shooting artound that area.   Also, this is not like the Lighening shock sensations I get in arms and legs it is different...I wish I could describe it better....

~Tonya

[tjj3761]

Yes, I agree Quix with what you are saying in the end.  

My only problem with my neurologist is that I'm not sure if he has even given me a diagnosis of TN even though I've been on Neurontin for this for several years and it has masked my pain.

He is so "closed lipped" about everything; this is what drives me crazy with him.

Anyway, thanks for the further info.

Terri

[Quixotic1]

Terri, yes, but either way it says you have TN.  That is the critical point to leave with.

The initial treatment of each is the same.  And that is what is crucial for us and our neurologists to know.  If you have either type of TN either mechanical or from a nerve lesion, then you should be treated appropriately.

After determining that you have TN of any type, the thinking neuro should note that TN is at least 100 times more common in MSers than in the general population (who get it at older ages - 50 and over).  Getting the diagnosis right (TN of one sort or another) should add weight to consideration of the person having MS.  So, the results of the questionaire has diagnostic value (with regard to MS) also.

To determine whether this is TN1 - the tests are focused MRVs.  No questionaire can prove or disprove compression of the nerve by a vessel.

It sounds like the questionaire told you you have TN - either way.  That is important information.

Quix

Quix

[tjj3761]

Hi,

I think the TN questionnaire is an inconclusive test because I found on taking the test, if you answer YES to the question, "do you have multiple sclerosis" it puts you under the STN.  If you answer NO to the question, "do you have multiple sclerosis" it puts you under TN1.

For those of us in limboland (we cannot answer yes or no to the question), so I think there is not a thorough diagnostic test.  I did this test over and over, re-working it to see what answers it came up with.  

Thanks for the info regardless...

terri

[tonyad]

  Ok, I took the quiz....
Results say:  symptomatic trigeminal neuralgia (STN): Symptomatic trigeminal neuralgia, (STN): pain resulting from multiple sclerosis.

   thanks again for that site info. Perhaps some of you others could take the quiz if you are not sure on what is going on w/ your facial/ head/ jaw/ pain..

~T

[tonyad]

   WOW!  Thank you so much for that info.
I am going to check it out now.

~T

[Quixotic1]

My favorite site for the full discussion of TN and the new classification is

fpa-support.org

That site also has an online diagnostic questionaire to see if what you are suffering from is consistent with TN and what form it would be.

Quix

[tonyad]

  Thank you once again for all your VERY helpful responses.
So, I guess to sum it all up..........

   Even though this 'Horrid" pain is NOT only on one side but instead on both sides, it is most likely TN!  

    I am so sorry that so many of you have to live in the hell of having this kind of pain. I would not let a dog suffer w/ pain like this.  So it sure in the He** is so sad that we have to try and deal....BUT we are strong and we will survive :)   And I am so Thankful for this Forum and all of you that we can rely on each other....Reminds me of that song by; Was it Sister Sledge?  "We are Family.....I got all my sisiters (and brothers) with me".

      Ok, enough of the Flash Back from the oldies.
Thanks to all of you again and I hope that your weekend is going good.

<<<>>>
~Tonya

[tjj3761]

Tonya, it sounds like your are getting a lot of good info.  

I should add that about 2 years after mine initially started, it did jump to the left side for about 6 months maybe.  Mine had been quiet until last year it popped back up and I increased my Neurontin.  It has now quieted back down for awhile.

I would say talk to your neurologist about this.  I do not feel going to the ophthalmologist will be any benefit to you for this problem.

I myself have what I believe to be both TN and ON pain.  The occipital neuralgia is a hard to describe sensation starting behind my eye, down over my ear, then into the back of my head strange pain.

Please take care and let us know what is going on.

P.S.  - my neurologist was actually more understanding/nice yesterday when I went for my followup.  I am going to stick with him for now, I guess.

Terri

[michelleric]

Sorry I haven't commented earlier.

Your pain is something I can totally relate to. This is my most dreaded symptom MS has given me. I have been having this for probably about 7 years, although it used to be tolerable. I now experience the pain about every 5-6 weeks and it lasts for at least 2 weeks.

It has always been only on the right side, until December, where it started on the left side   My neuro calls it Atypical face pain, which includes the DX of TN. She told me yesterday the fact that is now starting on the left, proves that I now have a new lesion. Pretty depressing. Mainly scary that the thought my "good" side "might" become another "bad" side.

I have tried quite a few meds for it, none so far that helped.  The last med, Lyrica, was helping, but I couldn't take the side effects of the med. (I think I am fairly sensitive to some meds).

I was referred to Pain Management, he suggested a procedure that there was a 50/50 chance it would help "only" the face pain, but not the scalp or ear pain.

I saw my neuro yesterday, and she is now sending me to a headache specialist, where she hopes he might have a further opinion regarding any meds that might help, before I have the procedure done.

You are not alone. Basically this pain is unbearable. I have had 4 natural childbirths, and I would rather have another than experience this horrible facial pain.

I am thinking of you and I am sorry you are going through this. It is horrible.

Good thoughts to you,

Michelle

[Wobbly]

Hi I just wanted to add.. that the past month or so, I'm having right sided face pain, been to a few dentist, my  Neuro.. and GP.  

one dentist said 4 teeth as loose lets take them out.
Neuro said, she's not sure if TN or TMJ. so here take some anti inflammatories
other denists said... boy, you have a gum, mouth infection and Rx antibotics.  I took them for a week, seem to settled down after 4 days of taking the pills.
back to GP today.
he said he doesn't think it's my teeth... will give me more antibotics as the pain is back..

On and off... last about 10 min... gone for a few hours and then back again...

I'm seeing a Teeth Surgeon, as one dentist said to take all my teeth out and I wanted a specialist opinion of all of this.. my GP said to make sure to let him know how the pain is and what pills I have been taking..

just my thoughts..
take care
wobbly

[amers789]

Tonya,
I am so sorry you are suffering from what sound like could be TN. I know from experience that it can be bilateral and although mine is atypical which for me is just a burning, aching spasms off and on all day. It is not as bad as the electric type , it does occur for me together, usually one side will start but then they both will start. Mine is in the lower two areas covered by trigeminal nerve so feels burning from chin to ear area.
Yours sounds pretty intense and you definitely need to call your neuro. There are medications that help, I take Lamictal currently but did get some relief from Tegretol, Keppra. Take care of yourself and go get some help.
Amers

[tonyad]

  AHHHH, I have been waiting for your expert advice on this :)
So, I thank you for that as with everyones response.  SO much appreciated.

   So  what I am experiencing is actually Classic MS TN? or called TN1?
now do a lot of the Neuro's even know about this? I just wonder if my neuro would
have even heard of it.   Do you have a link or somethinf that I can go to that
includes info on this study?  

    Sorry so many questions......Just trying to educate myself some more so that I
can remain my own best advocate  ;)

thanks again everyone,
~Tonya
  
    

[Quixotic1]

While I suspect that what you have is Trigeminal Neuralgia, I have to comment on a couple things that have been said.

One, TN certainly can be bilateral.  Period.  In fact, bilateral TN is a strong pointer to MS, as there are not many things, other than MS, that can cause it.   However, everything I have read states that since bilateral MS is caused by TWO SEPARATE lesions, the two sides do not act up at exactly the same times.  They act independently.  Now, those are rules and you all know that I don't believe in absolute rules in MS.  As to whether one side pain can cause the other side to act up, I don't know.  If people have that experience, then I suppose it can.

Here is a picture of the areas covered by the three branches of the Trigemnial nerve:

http://www.neurosurgery.ufl.edu/patients/images/Tic0.gif

You are experiencing pain sequentially in all three branches of the nerve.  This is unusual.  I didn't say impossible.  It just means that the lesion crosses the entirety of the nerve and not just part of it.

The pain in TN is what it is.  It may be perceived as electrical, boring, stabbing, excrutiating - whatever.  The episodes may last several minutes or be instantaneous.

There is also another type of pain that is more constant and also may be severe.  It also may have different characteristics.  For this to be considered Trigeminal Neuralgia, Type II (according to the classsification from OHSU) it must be present 50% or more of the day.

In MS TN is called Symptomatic TN, to distinguish it from the historical TN which often has it's cause in a compression of the nerve.  Think of it as Symptomatic (just like) TN.  I would have to look to see if the constant pain duration requirement is required in MS.

Most of the literature states that 1% to 5% of people with MS suffer from TN.  However, most of that is looking just at the classic presentation of TN, now called TN1.  When you include the other manifestations it rises.  My neuro (who is affiliated with the group that has proposed the reclssification) states with certainty that the percentage is closer to 27%.  I have to say that I totally believe him.  The number of people here on the forum is VERY high.

So, yes, I think you have pretty classic TN.  It isn't called the "Suicide Pain" historically for nothing.

Quix

[tonyad]

Thanks for the info.
So, do you think that I should go to the Opthamalogists (sp)?
I did not know that ON could affect my face like that......perhaps
I will call the Opth. Doc on Monday for a quick look over.

   If all that is OK then maybe I should let the Neuro know?
Don't mean to sound like a dummy but I am confused as to
what this could be. I am trying to absorb (as I read) info on
TN and my sx certainly fit ....ALL EXCEPT it is not always only
one sided.

    Thanks again Terri. oh ya, I do take Gabapentin (neurontin)
daily and not able to take the Lyrica.

~Tonya

[tjj3761]

Hi,

I just saw your post and thought I would let you know what my TN is like.  Your pain sounds like possibly ON to me.

My seemed like a shocking, stabbing pain in my upper right gum line or teeth, boring in nature like somebody is prying your teeth out of their sockets.  

This is aggravated by talking, eating, and touching the cheek area.  

I also get the ON of what you have described from time to time.  This is quite different for me compared to my TN pain.

I have been on Neurontin for about 6 years now, which has greatly, greatly helped my TN and ON.  Gabapentin is the generic form.  My neuro also told me the last time that Lyrica is about 3 times stronger than Neurontin for this as well.

I hope you feel better.....

Terri

[tonyad]

A little "BUMP" for me.
Would like others comments on this TN stuff.

Thanks,
~Tonya

[rendean]

Yes, mine do. All the places that experience the big pain are sore in between the surges of big pain. Mine does not go into my nose (as yet) but is concentrated along my upper gum line and upper lip area and other times it's lower and radiates form my ear for=waard and then circles around to my eye and forehead.

Guess everyone has different  sensitive areas  Have you seen the  drawing of the nerve itself and how it branches off into 3 different sections? My educated guess would be that any and all parts of this nerve could be affected at any time.

Hope this helps.

Need to catch some zzzzzzz's
Sending wishes for a peaceful night's sleep,
Ren

[tonyad]

Hey, i just watched her video.  And yes, about 30 seconds in to
it she really gets hit hard..

  SO when you are having a spell of TN, when it comes and goes throughout the day,
when its not present does your face and head and jaws and cheecks feel very sore?
Mine do......Then it cranks back up. I honestly do not know what to think. the pain is certainly in the right places BUT,   it does happen "across the board"
  
    However I did notice ( I watched a coupole video clips) when it does start there is a common denominator and that is ththat it does go across the entire top of head, forehead, down nose.

~Tonya

[rendean]

I tried the method I wrote about above and could not find it...at first . the link is below with spaces inserted after youtube. Remove them and paste in your browser to search.

Rated 4.9 out of 5.0
- 7 min - Sep 26, 2008
Some people with MS get this intense, painful symptom. I share my story and show you the lowest point of my MS. FYI- You DO NOT need to have ...
"www.youtube.      com/watch?v=TzgpstBWjQw "

Ren

[rendean]

You're most welcome. Her video is shot while she is having an attack. I instantly related to her pain. she describes it very well considering her pain level. worth a watch.

I would go to you tube and search "telsagirlM" then chose from the right hand column which video clip to watch.

Hope it helps.
Ren

[tonyad]

  You are awesome for getting back to me so soon as I was hoping to hear from someone before I went to bed. Yes! The pain is so horrible all I can do is hurry to the bed try and lay still....Grab my head, and try to rip it off! Lol    No really, It truly is so bad!  I never knew so much pain could come to my little mush brain and face.

    Ok, so I just go to You Tube....then search Trigeminal Neuralgia...then look for her name.   Piece of cake!    Now if I can remember each step and her name and what the he** I am looking for......you know how that goes!   My brainis MUSH I tell you.

Thanks again,
~Tonya

[rendean]

It sounds like TN to me. Mine is usually one side at a time but the description fits some of the attacks I have had.  I had one episode that started at the back of my head and came forward towards my ear. Excruciating pain that came in waves. PCP and local neuro labeled that one occipital neuralgia and prescribed Vicodin ES (no help at all ) and a short 4 day burst of oral Decadron which did the trick.

I would call your neuro and let him know your symptoms as he is the best judge of what it actually is. Your symptoms don't fit the "classic" pain I have read about but then neither does mine and I have been diagnosed with TN.

BTW, I posted earlier on another post about videos on YouTube by the author who wrote Awkward B****. She did a video describing her TN and it sound like a versio of yours. She goes by telsagirlM on You Tube and the video is labeled Trigeminal Neuralgia.

I hope your episodes are few and far between as it truly has the perfect nickname of the "suicide disease" due to the horrific pain that occurs.

Good luck and best wishes,
ren