Could I be developing ATN or TN? Any sufferers could assist me with answers?

General General TN & GPN (Old Site)
1

About two months ago I started to feel here and there and odd sensation on my left cheek that would come and go away in a matter of seconds, but I felt it, as if a finger was touching me there or I had an acne or something. Not painful at all, just like something touching my cheek.

I then started to feel very mild stabbing pains on my gums and cheeks (very mild, you wouldn't notice them if you were not paying attention)

Then about a week ago the odd sensation just settled on my cheek, and eventually I developed some burning sensation on the edge of my mouth (upper lip and low lip), the sensation has been pretty constant.

Two days ago I developed a tooth ache on an old root canal (this root canal was performed over seven years ago so I don't know if there is a relation) and my nasal passage hurts a bit when I breath (once again this is only the left side)

my eye hurts a bit too.

Today I had a neurologist appointment, apparently he is a professor of neurology or so his titled said when I went into his office at the hospital.

He told me that there was something pressing on my second trigeminal nerve and ordered an MRI which will happen in five days with focus on the trigeminal nerve

I asked him about the possibility of trigeminal neuralgia and he told me that TN onset is abrupt meaning it happens suddenly and the pain is extremely intense, not dull like mine

he told me that my description of the pain sounds more like a neuropathy and told me that he pretty much discards trigeminal neuralgia from a possible diagnosis due to the nature of my pain not really being like classical TN

ATN was not discussed and he told me that the pain once again looks neuropathic

the only burning sensation I have is on my upper and lower left lip near the edge of the mouth (mostly upper lip)

I have also noticed some tightness and tension in the muscles around the ears.

According to the neurologist I don't have classical symptoms of TN but I must admit I am still quite nervous.

I think I can rule TN out because I truly haven't felt any stabbing pain on my face (I hope God will spare me from it), but I do worry about the possibility of ATN

does ATN start in a progressive slow manner?

where do I go from here?

what is they find nothing pressing on my nerve on the MRI?

any advice?

God bless you all and thank you!

2

The patterns of emergence for TN and/or for chronic trigeminal neuropathy can vary from patient to patient, Curtis. The physician whom you consulted may be one of those who choose not to use the designators "Type 1" (Classic) and "Type 2" (Atypical) to describe chronic face pain. Type 2 is widely regarded as equivalent to trigeminal neuropathic pain. The characteristics of Type 2 TN tend to fit the symptoms you describe. Reasons for the emergence of either type are not always clear.

MRI is useful for ruling out some issues such as dental abscess, benign tumor, AVM, etc. But it is rarely conclusive as a positive indicator for Type 2 TN or trigeminal neuropathy. A better indicator may be your response to a short trial of one of two widely accepted classes of medications: Tegretol and Trileptal are often tried against the stabbing pain of Type I TN. If you get pain relief within a few days to perhaps two weeks, then you have an indicator you are dealing with a facial neuralgia. With Type 2 TN or trigeminal neuropathy, accepted practice is to treat with one of the tricyclic antidepressant meds that have a cross-channel action against pain. These would include Amitriptylne or Nortripyline, and several others in the same class. If neither one works, there are other combinations and meds that can be tried.

It may help you to clarify terminology if you take along a copy of the US NINDS Fact Sheet on TN when next you see your physician. It's linked from our main page. As a fair disclosure, I wrote the most recent edition of the Fact Sheet and coordinated external independent medical review for NINDS.

Be aware that although I have read the medical literature of chronic facial pain for nearly 20 years, my graduate training is not in medicine and I cannot reliably diagnose you at a distance.

Go in Peace and Power

Red

3

So basically when one person has exclusively ATN they pretty much have trigeminal neuropathy rather than neuralgia proper?

He ordered an MRI for the second and third Trigeminal nerve.

because I complained of some issues with my nasal passage being irritated when I breathed in, he sent me some drops to use but told me only to use them if pain is serious.

I live in Belgium so I don't know if such drugs you describe are available here tricyclic antidepressants but I will ask for them

wow this forum has saved my mind, I was going crazy, now I have a place to ask questions about.

one last thing Mr. Richard.... is ATN or Trigeminal neuropathy then pretty much the same thing? and is it progressive/degenerative?

thank you

4

Atypical TN and Trigeminal Neuropathy are generally considered to be pretty much the same medical entity. Over time, some cased do evolve toward more intense or medication-resistant pain. I've never seen satisfying statistics to determine what proportion. But the important first step is to get appropriate help in medical management of the pain you already have.

The TCA meds are used widely all around the world, as are Tegretol and Trileptal. The Practice standards of the International Association for the Study of Pain identify all of these meds as standards for treatment of trigeminal neuropathy.

I'm uncertain of the significance of your nasal symptoms, as I don't hear that symptom often reported. However be advised that the MRI request likely used the term "second and third BRANCHES" of the trigeminal nerve. There are three branches on each side.

Feel free to post other questions. If I'm not online, others likely will be and there are many knowledgeable people here.

Regards, Red

5

One question I have is, is there any virus or something that can devastate several of these cranial nerves? like the VII nerve that provides balance and then the V nerve and then the III nerve and so on? This is something that scares me because I have know someone who had some issues on one nerve cranial and then developed on the other.

Is that possible to occur? if so what could it be?

6

Curtis, we know that the incidence of hemi-facial spasm is somewhat higher in people who also have TN. But for a virus that can devastate "several" of the cranial nerves, there isn't much evidence. The exception might be the Zoster virus associated with Shingles -- but it doesn't target just one nerve or set of nerves. It pretty much goes after nerves all over the body.

Regards, Red

7

ATN can come on gradually. Mine has both times. It is difficult to get a definitive ATN diagnosis sometimes. Knowledge with Drs is spotty and there are many different, inter mingling diagnoses.

I would definitely look into the old root canal. There are many people on these forum that have nerve injuries from dental procedures. If that is the case then treatment can be quite different and many procedures used for TN will not work and could, possibly, make it worse.

Root canals can harbor infections bc it is difficult to fill every little canal in the teeth. Left over time the infection can spread. Having said that many people with TN also start out in the dental chair having unnecessary procedures trying to rid themselves of pain that is coming from the nerve and not the tooth. So be thorough and only have a dental procedure if physical evidence is shown.

Also with the MRI don't be too surprised if it comes back normal. It is more so used to rule out other causes then it is to diagnose TN. Often times a compression can exist without showing on the MRI.

8

Just Janet, I asked him about the root canal, and he told me that this was almost a decade ago and never gave me issues so he doesn't think its the cause. He says we'll find out if it is on the MRI

plus my main symptom, the one that supersedes all other symptoms is that burning sensation on the upper and lower left side of my lips and the painful nasal passage when I breath in.

when I told him about the nasal passage he said.... hmmmm sinuses maybe? they can create such issues!

I REALLY WANT TO THANK YOU ALL, THIS IS VERY FRIGHTENING BUT YOU ALL MAKE IT MORE EASY WITH YOUR EXPERTISE!

9

The neurologist told me that all neurological examinations were fine, I asked him about herpes virus perhaps and he said in herpes you would get a rash, (I haven't had such) then pain and plus it is generally accepted that the trigeminal nerve is compromised mostly by vascular compression, not viral infections.

he sent me a link to this study

http://www.ncbi.nlm.nih.gov/pubmed/19837303

it says that from 15 people who went to the doctor with idiopathic trigeminal neuropathy were followed for 34 months.

from the 15, eight had it go away before 3 months, the other 7 had it chronically and from those 7, only 4 had mild pain, 1 had extreme pain.

amitriptyline was the drug of choice like mr. lawhern told me.

I guess that puts everything into a more clear perspective

I asked him about atypical trigeminal neuralgia and he told me calling a condition atypical is sort of saying "we have no answer" a bit of a wastebasket.

He says the real trigeminal neuralgia has very typical clear and classic symptoms, and patients can most of the time tell where the pain exactly comes from and where it goes, it is excruciating and stabbing pain on one or more of the three nerve branches that last from seconds to minutes, and often have no symptoms between attacks or just a slight burning sensation on the nerve between attacks. perhaps due to prolonged nerve irritation.

He says my case he rather calls it neuropathy which is the proper name for this kind of symptoms.

would you agree with this mr. lawhern?


Richard A. "Red" Lawhern said:

Curtis, we know that the incidence of hemi-facial spasm is somewhat higher in people who also have TN. But for a virus that can devastate "several" of the cranial nerves, there isn't much evidence. The exception might be the Zoster virus associated with Shingles -- but it doesn't target just one nerve or set of nerves. It pretty much goes after nerves all over the body.

Regards, Red

10

beside sinuses, what about the possibility of TMJ?

my muscles around the cheeks are tight and the ones right next to the ear are painful if I touch them.... could it happen tight muscles create these sensations?

do any of you recommend any blood testing at this stage?

11

I just thought of a question

this burning boring constant pain people describe with ATN is located where? along the specific nerve path or around the general area of the face.

is it consistent 24/7 on one spot or comes and goes throughout the day? or migrates around the face?

do you feel electric TN shocks, or just a burning sensation on the face?

info on ATN is very very small on the internet and the symptoms sound so vague and general (ATN= burning on the face) nothing more

12

what are the symptoms of shingles? I don't recall having any rash, can they occur without a rash? which medical procedure should I follow to determine if I developed shingles on my nerves or not?

thank you

Richard A. "Red" Lawhern said:

A virus that can devastate "several" of the cranial nerves, there isn't much evidence. The exception might be the Zoster virus associated with Shingles -- but it doesn't target just one nerve or set of nerves. It pretty much goes after nerves all over the body.

Regards, Red

13

Curtis,

Shingles is characterized by an itchy rash and areas of sharp "searing" pain, often in areas of the body distant from the face. The rash isn't always the first symptom and it can rarely occur internally rather than at the surface. If you have active Shingles, it should show in a blood test for Zoster. But it you've had the neurological symptoms and pain for some protracted period (weeks) without an evident rash and concentrated wholly in the face, then I'd agree the chances that you have post herpetic neuralgia seem very small.

The burning pain of Atypical TN can present in any or all of the three major branches of the trigeminal nerve, ranging from the very top of the head about even with the ear, down through the forehead and temple, behind the eye, in the cheek or lower jaw line. It can shift around from place to place. It can occur on both sides of the face, though usually with different patterns on the two sides and at different times on the two sides. ATN pain is most often constant for periods of hours to days rather than episodic like classic TN. But there are variations between patients.

As for TMJ: it's possible, but not inevitable. Poorly trained dentists tend to over-diagnose TMJ, so you'll need a workup by a crainio-facial pain specialist or dental surgeon to get an authoritative evaluation.

Regards, Red

14

Watch this video. It is very informative:

http://fpa-support.org/florida-regional-conference-dr-dennis/

And this one:

https://vimeo.com/10284243

And while you are at it watch this one too:

http://fpa-support.org/florida-regional-conference-dr-field/

It is very difficult to navigate your way through this bc everyone has different opinions. I have had this over two years and still don't really have many answers. Keep asking questions and be your own best advocate. There is a lot of information to weed through and in time you will have a better understanding of what could be happening. I think the most important first step is to find medication that will work for you so that you are not in crisis mode and can then concentrate on finding the right Dr and the right treatment.

15

I was on Amitriptyline for over a year and it was very effective for my ATN in the lower two branches. I am now on Nortiptyline, which is similar, and also effective.

"Atypical" anything is a waste bucket diagnosis. Atypical Trigeminal Neuraliga or Neuropathy, Atypical Face Pain, Atypical Odentalgia, TMJ disorder, Migraines, Cluster headaches---I have had all of these diagnoses. Not very helpful in the long run.

ATN pain for me can be anything from an itch to a deep burning, boring pain, to pins and needles and numbness, to deep sharp pain like an ice pick through my eye. It can last for a second, change places in a second or sit in one place for days, weeks, months. When I first started having symptoms it was in one tooth and constant but over time it started migrating to other places and now I have lots of different locations that it settles in.

curtis said:

The neurologist told me that all neurological examinations were fine, I asked him about herpes virus perhaps and he said in herpes you would get a rash, (I haven't had such) then pain and plus it is generally accepted that the trigeminal nerve is compromised mostly by vascular compression, not viral infections.

he sent me a link to this study

http://www.ncbi.nlm.nih.gov/pubmed/19837303

it says that from 15 people who went to the doctor with idiopathic trigeminal neuropathy were followed for 34 months.

from the 15, eight had it go away before 3 months, the other 7 had it chronically and from those 7, only 4 had mild pain, 1 had extreme pain.

amitriptyline was the drug of choice like mr. lawhern told me.

I guess that puts everything into a more clear perspective

I asked him about atypical trigeminal neuralgia and he told me calling a condition atypical is sort of saying "we have no answer" a bit of a wastebasket.

He says the real trigeminal neuralgia has very typical clear and classic symptoms, and patients can most of the time tell where the pain exactly comes from and where it goes, it is excruciating and stabbing pain on one or more of the three nerve branches that last from seconds to minutes, and often have no symptoms between attacks or just a slight burning sensation on the nerve between attacks. perhaps due to prolonged nerve irritation.

He says my case he rather calls it neuropathy which is the proper name for this kind of symptoms.

would you agree with this mr. lawhern?


Richard A. "Red" Lawhern said:

Curtis, we know that the incidence of hemi-facial spasm is somewhat higher in people who also have TN. But for a virus that can devastate "several" of the cranial nerves, there isn't much evidence. The exception might be the Zoster virus associated with Shingles -- but it doesn't target just one nerve or set of nerves. It pretty much goes after nerves all over the body.

Regards, Red

16

Justjane, it's interesting that on the video you posted the expert talks about "you're 60 and you don't remember when you were a teen you were involved in a car accident".... I was hit by a motorcycle in 1996, almost 20 years ago... I wonder if that has any effect, however I don't recall the motorcycle hitting my trigeminal nerve.... just the forehead (on that side though)

it's interesting today I was symptom free except now I have like a tightening sensation on top of my two frontal teeth on the gums, and now the left lower lip burns and so does a big of the right lip.

I don't know if I am developing ATN or if this is permanent or not.

the burning is not as bad, is something like a 2 on the burning scale

and then the sort of painful breathing again

I already have asthma, neck pain and tinnitus.... I am only 37, is it normal to have all this crap? I have never smoked, I don't drink, am I just UNLUCKY?


justjane37 said:

I was on Amitriptyline for over a year and it was very effective for my ATN in the lower two branches. I am now on Nortiptyline, which is similar, and also effective.

"Atypical" anything is a waste bucket diagnosis. Atypical Trigeminal Neuraliga or Neuropathy, Atypical Face Pain, Atypical Odentalgia, TMJ disorder, Migraines, Cluster headaches---I have had all of these diagnoses. Not very helpful in the long run.

ATN pain for me can be anything from an itch to a deep burning, boring pain, to pins and needles and numbness, to deep sharp pain like an ice pick through my eye. It can last for a second, change places in a second or sit in one place for days, weeks, months. When I first started having symptoms it was in one tooth and constant but over time it started migrating to other places and now I have lots of different locations that it settles in.

curtis said:

The neurologist told me that all neurological examinations were fine, I asked him about herpes virus perhaps and he said in herpes you would get a rash, (I haven't had such) then pain and plus it is generally accepted that the trigeminal nerve is compromised mostly by vascular compression, not viral infections.

he sent me a link to this study

http://www.ncbi.nlm.nih.gov/pubmed/19837303

it says that from 15 people who went to the doctor with idiopathic trigeminal neuropathy were followed for 34 months.

from the 15, eight had it go away before 3 months, the other 7 had it chronically and from those 7, only 4 had mild pain, 1 had extreme pain.

amitriptyline was the drug of choice like mr. lawhern told me.

I guess that puts everything into a more clear perspective

I asked him about atypical trigeminal neuralgia and he told me calling a condition atypical is sort of saying "we have no answer" a bit of a wastebasket.

He says the real trigeminal neuralgia has very typical clear and classic symptoms, and patients can most of the time tell where the pain exactly comes from and where it goes, it is excruciating and stabbing pain on one or more of the three nerve branches that last from seconds to minutes, and often have no symptoms between attacks or just a slight burning sensation on the nerve between attacks. perhaps due to prolonged nerve irritation.

He says my case he rather calls it neuropathy which is the proper name for this kind of symptoms.

would you agree with this mr. lawhern?


Richard A. "Red" Lawhern said:

Curtis, we know that the incidence of hemi-facial spasm is somewhat higher in people who also have TN. But for a virus that can devastate "several" of the cranial nerves, there isn't much evidence. The exception might be the Zoster virus associated with Shingles -- but it doesn't target just one nerve or set of nerves. It pretty much goes after nerves all over the body.

Regards, Red

17



Curtis if you look where the three branches of the nerve connect it is sort of on your temple then runs back to the brain stem.

Are you generally pain free in the morning? and then the pain builds through the day--probably at its worst in the late afternoon and evening--and then tapering down a bit at bedtime? Does the pain NOT bother you in the middle of the night? That is a very common daily cycle for TN. NOT for everyone but for a lot of us.

I have issues with my cervical spine and am starting to see a connection between that and some of my facial pain.

18

Jane, there is some justice in your observation that "atypical" is often not very constructive. I would merely note that sometimes we really don't know precisely what is going on with a pattern of neuropathic pain. There is a lot of medication trial and observation in this field, because individual patients respond differently to the same doses of the same meds.
There is quite a range of blood levels in different patients, for the same dose. That's one reason why periodic blood work is strongly indicated.

As for a whiplash injury twenty years ago causing TN today? Candidly, it's unlikely. On the other hand, it's known that a substantial number of patients presenting with patterns of either TN-1 or trigeminal neuropathic pain, have recently (within days to weeks) been in whiplash incidents. I've heard that from multiple experienced neurosurgeons.

Regards all,

Red

19

Mr. Lawhern is there a time frame in which you could say that certain dental procedures or accidents can affect the body?

Besides my terrible accident 19 years ago, I had a whiplash in 2003 (12 years ago) and a wisdom tooth removed in 2009 (6 years ago)

but I never had a single issue until now a week ago.

I told my doctor about the wisdom tooth 6-7 years ago and he said, and he went like nah and then moved on.

20

Having been through quite a few Drs now in the over two years that I have had this if you present with symptoms outside of the classic Type 1 Trigeminal Neuralgia no body knows what to do except prescribe medication.

In my opinion it is not a diagnosis at all but an excuse to give up investigating further causes. Out of all the Drs I have seen only one of them actually ever touched my face or my body. The only investigation that has ever taken place were more MRI's.

My mom has MS and I will tell you that even though that disease is better understood and more common then TN that her experience is much the same as mine.

So we continue to spread awareness, do our own investigating and share experiences with one another in hopes of accomplishing what the medical community does not seem to be able to do. And it is people like you, Red, that do make a positive difference in our experiences.



Richard A. "Red" Lawhern said:

Jane, there is some justice in your observation that "atypical" is often not very constructive. I would merely note that sometimes we really don't know precisely what is going on with a pattern of neuropathic pain. There is a lot of medication trial and observation in this field, because individual patients respond differently to the same doses of the same meds.
There is quite a range of blood levels in different patients, for the same dose. That's one reason why periodic blood work is strongly indicated.

As for a whiplash injury twenty years ago causing TN today? Candidly, it's unlikely. On the other hand, it's known that a substantial number of patients presenting with patterns of either TN-1 or trigeminal neuropathic pain, have recently (within days to weeks) been in whiplash incidents. I've heard that from multiple experienced neurosurgeons.

Regards all,

Red