Early exacerbations and TN

[JenEpicFarms]

I posted a blurb a few days ago about this, but I had another thought which led to a question. For 8-10 months during 2001 and 2002 I had terrible facial pain in the vicinity of my right cheekbone (I must have made about 10 trips to the dentist before finally getting a root canal in May of 2002). I had already started looking into TN (which my grandmother had), because the dentist could not seem to find anything wrong and the pain was terrible.

I ended up at an Endodontist (and this is the part that just "hit" me this morning) who had to give me a record number of Novocaine shots before I no longer had feeling at the root canal site. I remember him betting me $1,000 that the 4th or 5th shot would do it, but it didn't. I had to have one more. Of course afterward I was annoyed for not having taken the bet (always wondered if I would have ended up with a free root canal :o)

So anyway,  now I'm wondering about the large quantity of Novocaine he had to use. Since that deadens the nerve endings (right?) could it have been a flare of TN and relevant to MS or am I grasping at straws here?

[DMTRN]

My mom has TN and has been suffering for about 3 years. We finally found a Craniofacial Dentist, who specializes in Face pain. He found a NICO lesion high in the gum which was contributing to her TN and did surgery and relieved much of her pain. She still has episodes but nothing like before the surgery. I have done lots of reading and have found that acupunture, very low fat diets and decresing inflammation can really help manage this disease. It really is a vigorous management game if you want to stay off heavy duty pain meds. ALso supplements may help. I suggest very focuse research online and be sure to connect with reputable groups like the TN Association. My heart goes out to all of you. This truly is a painful affliction.  

[Quixotic1]

Hi, again, I just saw your question.  Absolutely what you are describing would be considered bilateral.  When TN is bilateral they do not act the same nor typically act up at the same time.  The reason for this is that each side is it's own separate lesion, likely in a different spot than the other side.

Quix

[Quixotic1]

bump

[cassrox]

Thanks Jen! I'll check it out.

[JenEpicFarms]

Okay, so I probably should have re-googled before hitting post:

http://www.medhelp.org/posts/Trigeminal-Neuralgia-/is-trigeminal-neuralgia-hereditary/show/568762

Toldya I didn't know much ;o)

- Jen

[JenEpicFarms]

Don't be silly - ask away girl!  I'm not an authority by any means, but I can tell you that when I was researching TN in 2001 and 2002, I found that it was not considered to be a hereditary thing (and that was most definitely something I was worried about at the time :o)

The link Quix gave me earlier, fpa-support.org/aboutp/index.html  has some great information that might help you (there's also a short diagnostic quiz on there that you can take. Hope this helps!

- Jen

[cassrox]

Hey Jen, I'm glad you asked about this, and thanks for the insight Quix.

One of my big problems has been pain like this in the right side, CN V2, and even evil neuro #1 suggested it was likely TN. I've also had a couple of spells in the past where the pain was in the lower jaw and teeth too. But the majority of the time it's been the cheek and upper teeth/gums/lip.

But a couple of weeks ago, it hit in the left side. It just lasted about 30 minutes, but it was the same type of pain - except it didn't spread down into my teeth and gums like it always does on the right side. My upper lip usually goes numb on the right side too. With the left, it just stayed in my cheek and ran over to the edge of my nose.

I went to the dentist again, just to make it wasn't a tooth issue, and they didn't find anything. But after reading Quix' helpful info, I think I should definitely mention it to my neuro. A few days ago, I got zapped again on the right side, and it took about two days before it went away.

Would this be considered bilateral Quix? I've had trouble on the right side for about two years, now suddenly it's happened in the left side - but not at the same time. The pain is definitely similar, but not exactly the same as it is on the right.

Also, can TN be hereditary? Jen mentioned her grandmother having it, and my grandmother has suffered from it since she was a young woman. I remember as a kid her being in such horrible pain that she'd close herself off from everyone, and we weren't allowed to bother her because of that "nerve in her face." A good neuro finally diagnosed her. She still doesn't drive to this day because of a really bad episode going down the road when she was learning years ago. My grandpa was able to grab the wheel and keep them from wrecking.

Despite a lot of objective clinical evidence, one ehancing brain lesion, and the fact I can no longer walk without assistance, my MS specialist is still riding the fence. I wonder if this left-sided episode with my face would count as more evidence.

I apologize Jen...I didn't mean to get off on such a "me" trip.

Cass

[JenEpicFarms]

No worries *laugh* I found it. Took the questionnaire and it came back as TN1, which was interesting.

Thanks!

[Quixotic1]

I misspoke about the Diagnostic Questionaire on the site I gave you.  The Questionaire can give you insight as to whether the pain you are having is "Trigeminal Neuralgia"  (NOT MS).

Sorry.

[Quixotic1]

Thanks, it is headed there soon.

TN needs no trigger to be TN.  It's just that it there often is one.  

And there doesn't have to be an "exact spot" where it is felt.  When there is no discomfort in between zaps, then it is often just felt in a region.

Of course you're special!

Quix

[JenEpicFarms]

WOW - terrific info (and I am SO not surprised coming from you; you're an awesome resource all by your lonesome lady! :o) One of the reasons I was so scared it was TN - and I did actually pose the question to the dentist and that's when he sent me to the Endodontist - was because not only could I not feel it in a specific tooth, there didn't seem to be a trigger of any kind. I would just be tooling along, doing whatever and BAM. If I was talking it would cut me off mid-sentence the pain was so awful. Usually when it's a tooth, even if it's not actively hurting there is an awareness of it (as in, it recedes to that dull or vague "ache"). I did not have that sort of continuity; it would just hit - sometimes several times during the day - and then just disappear as suddenly as it came.

I would bet that TN was discounted due to my age at the time (mid-30s). As you said, it's usually the over 50 group so that is probably the reason nobody but me thought about it (and the only reason I even thought of it was because of my grandmother). The spontaneous remission you mentioned is exactly what I've been wondering about for the past few days (although I'm well aware I may never know for sure). Had the pain returned post root canal, I'm sure there would have been some medical follow up, but it didn't return.

Thank you SO much for your response (I feel all special now *grin*) I'll vote with the other me - HeeHee - and suggest that you put TN in the HP queue, Dr. Q ;o)

- Jen

[Quixotic1]

Thanks, Jen, I had that in mind when I wrote it.  It's high on my list, but I'm working on ON right now.

Q

[jensequitur]

Wow, this needs to be a health page!

[Quixotic1]

TN AND DENTAL PAIN

Wow, what a discussion of how much TN is misunderstood, especially by dentists.

Persistent dental pain and NO evidence that anything is wrong with the tooth should be more than a red flag to an educated dentist.  It should be a screaming neon sign to suspect Trigeminal Neuralgia.  Too many people who had TN have had extractions and root canals by uneducated or unscrupulous dentists.  Then when the pain continued, the endodontist should have suspected TN.  The series of novocaine injections "might" have had some effect on TN, it's dubious.

What is more likely is that the TN just "remitted", as it does in MS, though, Jen, I don't know that is what you have.

Now a little anatomy lesson.  The Trigeminal nerve (Cranial Nerve V - CN V) arises directly out of the brainstem, making it a central nervous system nerve, even though its fibers go out into the body like peripheral nerves.  The entire length of the Trigeminal Nerve is part of the CNS, even the nerve tips.

The T Nerve breaks out into three branches.  The first is CN V1 - and carries sensation from about the level of the eye upward to the forehead and that side.  CN V2
takes care of the upper jaw (the maxilla) and covers the cheek down to the mouth, the side of the nose and nostril, the upper lip and the upper teeth.  CN V3 serves the lower jaw all along the jaw line, the lower lip, the lower gums, and part of the tongue.

Jen - if this was TN, and I'll bet my bad arm that it was, your problem was in CN V2.  Very often the pain is felt as dental pain and often you can point with absolute certainty which tooth is the offender.  I know that I could.  My dentist examined the tooth and took xrays and said that it was most likely TN.  

Now, there is another type of pain, involving the Trigeminal nerve that is not called Trigeminal Neuralgia.  This is due to trauma to the area including dental procedures - usually deep invasive ones near the back - that cause damage to the Trigeminal Nerve.  This is called something like Traumatic Facial Pain and is treated somewhat differently from TN. Typically the pain caused by dental trauma will start "with" the procedure and not develop weeks or months later.

The definition of TN is expanding in the last decade.  Originally, it only included the severe lancinating (or lightening bolts of electrical) pain that occurred whenever the trigger point or the right stimulus happened.  The pain can be felt in the face, skin, mouth, teeth, gums or wherever the nerve goes.  But, it is clear that a huge nubmer of atypical TN sufferers exist.  They may have almost constant deep, boring, acking pain that feels just like a toothache.  Or some people may have the constant pain with the jabs of more severe pain on top of it.  Some stuck-in-the-old neuros do not acknowledge this as TN and will ignore this clue.  But it is well-known to occur commonly in people with MS.

In the general population TN will occur in the older age groups (over 50) with increasing incidence as people age.  Happens in about 1 per 10,000 people.  However, in MS, official numbers say that about 10% will suffer TN at some point in their course.  This, of course, translates to 1,000 cases per 10,000 people with MS.  So we have 1000 times greater chance of having TN than people without MS.

So, the dentists and neuros should ALWAYS be thinking ("Hmmm, are we dealing with MS here"?) when faced with persistent (and sometimes recurrent) face and/or dental pain, ESPECIALLY in a person younger than 50.  

Interestingly, my neuro who is also a researcher for Avonex and Tysabri, and who has been treating MS for close to 40 years told me firmly that about 27% of people with MS will have TN.  The difference in his number and the published number is that not all the studies include cases of Atypical TN.  If you include them you will see that almost a third of patients with MS will suffer this at one point or another.

The meds used for treating TN are the atypical anti-seizure meds that are used for treating neuropathic pain.  This makes sense because TN is a type of nerve or neuropathic pain.  The firstline drug is still listed as carbamazepine (brand Tegretol), but I am always surprised at how few neuros choose it to begin with.  Other meds used are gabapentin (Neurontin), pegabalin (Lyrica), and such.  Tegretol tends to have fewer problems.  And it is a myth that you need to monitor levels, because you use the dose that helps the pain, you're not maintaining a dose to prevent seizures.

Bilateral TN is a screaming indicator of likely MS.  Some neurosurgeons will state outright that all bilateral TN = MS.  Either way, the first three things in the differential diagnosis should be MS, MS, and MS.  In bilateral TN each side would have a separate lesion.  Therefore, the two should act independently.  It is said that they do not occur simultaneously.  Given the way MS works, I take this to mean that they would not present at absolutely the same time.  Likely the lesions might have  at least slightly different locations, so the pain might have different triggers and be felt in different ways.

TN does NOT always show on MRI.  The lesions can be quite tiny and still wreak havoc.  When my brainstem MRI did not show why I had the face pain my neuro said, "Well, I don't see a reason for your face pain.  That's good!  Nobody needs a "big" lesion on their brainstem."  What he was indicating there is that a lesion needs to be "big" (relative term) to be seen on MRI and that many of our lesions in MS are still invisible to the MRIs.  This is very basic to my attitude and writings about over-dependence on the MRI.

My experience with TN was the shooting deep pain in a specific lower molar when chewing.  I knew exactly which molar was "bad", but the dentist said it was healthy.  She suggested TN.  Also, I had had problems with this molar before and it went away after a few months.  She remarked that real, structural dental problems don't "go away".  They stick around until you deal with them or they fall out - but they don't heal.  After several months of the occasional jabbing pain, I developed the constant, deep tootheache.  I understood why people would sometimes beg for the tooth/teeth to be extracted, and uneducated or greedy dentists would pull healthy teeth.

In my case the carbamazepine worked as soon as I got the dose to 800mg per day.  I recently tapered the dose to 600mg and the pain reappeared, vague achey and now in more spots, including a different branch of the nerve.  Back up on the dose.  I also am having some pain now on the other side.  Feels like TMJ, but I believe that it is actually TN.


So, a little lesson on TN, its prevalence in MS, and how dentists should be thinking about it with pain for which the testing is negative.  Once TN is considered in a younger person, the next thought should be to consider MS.

For a real education in TN and it's various forms, please read the great info online at

fpa-support.org/aboutp/index.html

This is a wonderful resource.  It also includes an online Diagnostic Questionaire to see if what you are suffering is consistent with MS.  This questionaire was dieveloped at OHSU here in Portland and is gaining acceptance.

Quix, President and Founder of the support group for people who talk too much,

ON-AND-ON-ANON

[JenEpicFarms]

My wisdom teeth are long gone, and as far as I know my jaw alignment is ok (although that is definitely something to think about!) I do have TMJ on the right side; it started toward the end of last year (didn't even know what it was at first :o)

Thank you for the info, and my best to your daughter (sure hope she stays pain free!)

- Jen :o)

[supermum_ms]

Hmmmmm, I lived my entire teen years with cheek/jaw pain, i would cry and rock the pain was so bad, it wasnt until i was in my 20's and a new dentist discovered my jaw was not in line. It took a few more years of pain before it settled, i can say (knock on wood) that i dont experience that level of pain, just the occasional zap.

Thursday last week my daughter had surgery to get the remaining 3 wisdom teeth out, they are hooked at the root and we have been told that one is so close to the nerve that she will be lucky if she doesnt end up with TN for life, so i have my fingers crossed good and tight. She's already been living with TN (so her surgeon says) since late november, her wisdom teeth triggering the nerve. So far she's been in no pain since she woke up after the opp, she feels like a new women (lol) as far as the face pain goes.

Food for thought if you havent had your jaw alignment checked out, and the wisdom teeth too, seriously hope there could be something else going on.

Cheers......JJ

[JenEpicFarms]

Seems like I remember him saying something about hypersensitivity, but since it was almost 8 years ago I'm a little hazy on the details :o)  The only reason I even remember the month and year is because I had the root canal the same day our oldest graduated from high school.

I do remember being very scared that I might have TN, as I know how much my grandmother suffered with it. Hopefully there is medicine for it now; I can't imagine having it bilaterally - oh, my!  

- Jen

[JenEpicFarms]

Ess: I read somewhere (one of my best resources ;o) that dental work can sometimes trigger TN so that may be what happened to you.  I did wonder for awhile if the Endodontist really did find something or just went with the EMM (Eenie Meenie Method). Since the pain didn't return, I ended up assuming that the root canal solved the problem although I never did quite understand the pain (it was a whole lot different than any other "toothache" I'd ever had, and not triggered eating or drinking).

I did make a note of it along with a couple other oddities from "way back when". It is separate from my timeline though (it's on a yellow sticky in the front section of my notebook). Thank you so much for the info!

- Jen

[steph74]

As a slightly different take on this subject, I've wondered if the TN pain "aggrivates" the peripheral nerves, making them more sensitive (even though the TN pain comes from the CNS).  I have no idea if this is true, Quix can correct me if I'm way off base.

I have bilateral TN, though not nearly as bad on the right side.  I had a routine filling and the dentist, who is great, was telling me all about this new method for using novacaine that allows you to use less.  Whatever it was, it didn't work on me and I had to have several shots and he ended up with the "old" method (and still needed more shots!)  I don't remember that from the last time I had a filling, but this is only my third and the others were 15+ years ago.

Could be any number of things, I guess!

Stephanie

[essdipity]

Oops! This #$%$# computer!

Anyway, my symptoms came after the surgery, not before, but I began to have facial pain that was pretty bad. Even went back to the oral surgeon, who could find nothing wrong. Eventually it all went away, only to return in mild form here and there. I have read that surgery can precipitate TN, but I've also read that many root canals are done necessarily when TN is really the problem.

I think you should make note of this in your timeline, without speculating on what caused what (which is a good idea for all timelines). We don't want to offend our delicate neuros.  :o)

ess

[essdipity]

Hi, Jen. I doubt if you'll be able to be sure about anything here, but I hope so.

I had a root canal (necessary) in '06, where it took 5 shots of Novocaine to do the job. In the months after that I started having a lot of facial symptoms. I even went back to the dental surgeon, who could find nothing wrong.