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Living With Facial Pain

Sadly missing category (TN type 2 from start) in "The International Classification of Headache Disorders 3rd edition (2018)"

#1

Dear all,

I went through “The International Classification of Headache Disorders 3rd edition” with a fine comb and saw that the description of the following condition is completely missing: TN type 2 that always was type 2 (what I called elsewhere “pure TN type 2” - or what may be better called “TN type 2 from start”). This seems a major shortcoming of this classification and I wonder if anybody here is in contact with the team that put together this edition of the classification to notify them of this ommission? I for one am “TN type 2 from start” and I know several others on this site are, too. For example, people with our disorder type are explicitly mentioned several times also in Weigel and Casey’s “Striking back” book. But the current classification ommitts us completely. This is not only a problem for getting the doctors to diagnose us correctly, it is also majorly misleading for those who are still struggling to find out what kind of ache afflicts them and who might browse through the whole “International Classification of Headache Disorders 3rd edition” in order to find out - currently these people would not be able at all to find their disorder described (and then are likely to misattribute their disorder to some other half-fitting category).

In the current classification edition, the type of pain one is most likely to end up being characterized with is “13.12 Persistent idiopathic facial pain (PIFP)
(Previously used term: Atypical facial pain.)” (all others in this area require TN type 1 pain to have been present before). This is a bad state of affairs, and i really wish that the classification adds a new category that truly reflects the many people who clearly do exist and who are “TN type 2 from start”.

If we are not represented at all in the classification of all headaches, what chances do we have to have people study our disorder (and thus, what chance do we have for people to find a cure?). Can we somehow have them change the classification to include this category? Anybody knows how to do this? Could maybe an official contact be made by the site owners here?

(P.S.: anybody who may think I didnt read closely and may have merely missed the description: I invite you to go to the headache classification (its free online) and start reading at “13.1 Pain attributed to a lesion or disease of the
trigeminal nerve” - I believe nowhere in this section are we covered. We fall through the cracks there. We are instead unhelpfully lumped (and even there, not neatly) into the PIFP category - but lumping should always be the last resort, as it is not helpful to mix different disorders under one umbrella term).

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#2

Considering TN damage and pain isn’t headache-based I don’t understand why you think it should have been covered in the Classification of Headache Disorders. Could you please explain?

azurelle

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#3

Sure: this classification is where all pain of the head is covered, i.e. also TN. That is the main international classification that doctors worldwide use (or are supposed to use) when making diagnosis. I agree it is not the best title, as it would indeed seem at first to not include TN etc - but it does. (I will see if I can post a link here, in another message below).

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#4

Here is the link (we (should) fall under heading “13”)

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#5

I should also add that “TN type 2 from start” usually have to suffer for years without knowing what afflicted them. They (and most doctors) usually think it’s a type of headache (doctors told me I have a weird migraine etc). So anything that lets this sub-category of TN be further away from discovering is very bad news. It’s hard as it is to find out that you have this sub type (which is why I ended up reading each and every single disorder described in the headache classification).

All that is why I strongly believe this sub-type needs to be added to the classification.

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#6

Hi
Interesting points.Do you know how it was classified in previous editions(the exact wording ,I mean)?
I too was put in this lump of PIFP category-and that puzzles me -because even the pain forms that they wanted me to fill out did not seem appropriate to the problem.That is how I felt anyways.
Thanks for your sleuth work.

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#7

Hello. Sadly I do not know for sure what the previous editions said, no :frowning:

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#8

Am wondering if anyone else knows Maybe someone with a hard copy??

Maybe it was never adequately entered-regardless of what the Striking Back book inferred

But I do believe that you are on to something-since I felt that I was taken from my small pond of facial pain and thrown in a bigger pond.Maybe it is all related.But they sure have not accounted for it on their forms.

Like there is no where to say a tooth burns.

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#9

I read through the classifications, both for headaches since I have chronic migraine, and for TN/ATN.

It all sounds correct to me. Actually the classification of type 2 sounds spot-on to me. I’m not sure what you’re looking for in this document, it’s strictly a classification tool. Additional details and treatment plans based on the initial diagnois are to be found in other resources. And the gather of details to come to the classification would be the responibility of the doctor, tools for help with that are found elsewhere as well. There’s even a facial pain check list available to help drill down. In the end this all seems correct and well balanced to me.

Of course, my take on all of this is probably different from the majority of people who have TN/ATN as I was diagnoised at my first appointment over the pain and put on medication (trileptal) that immediately helped me.

azurelle

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#10

There are some forms of Migraines/ Headaches that present with allodynia ( facial pain). I have TN2/ ATN/ Migraines. Met with my neurologist last week for an hour as we both tried to come up with a game plan. I have just started AJOVY- the monthly injectable for the prevention of migraines to see if I can get some relief. There are 3 different injectables on the market now. It targets the same receptors for pain (simplified explanation). This is the same neuologist who told me over a year ago i could not have TN since mine crosses the mid-line. Education and compassion are the key to our health. Left side of my face became swollen and red and hot and painful during my visit. I said, “see here is proof, it’s happening”. My doctor said
YOU don’t have to prove anything to me, I believe you. I have to prove to you that I am willing to help you any way I can. This compassion was overwhelming and much appreciated and has given me some hope that my pain can be managed and decreased. I have also had the BOTOX migraine protocol to see if this would help.

Linking the migraine/ ATN connection might be the golden ticket for some of us. I hope it helps us educate our healthcare providers come up with new and innovative ways to treat us.

For, this New Year, I wish for a decrease in pain and a better and more joyful life for all of those who suffer from chronic pain of any kind.

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#11

Earlady, I absolutely agree there’s a migraine ATN connection, as does my Neuro. She has two of us with 30+ years of migraine that started ATN about 20-25 years in.

I’ve been debating trying one of the new injections. I don’t like the idea of taking something with a 15+ day half life. That and the placebo effect was so strong time will only tell how it actually works.

I have a feeling the true treatment is going to be for facial pain syndromes. Please be sure to keep us updated on all fronts!

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#12

Hi azurelle,
I am happy for you that you were immediately diagnosed (a medal for that doctor!). Most are not (me included - it took years). Once again, a classification tool for all type of pain in and around the head should identify correctly if it is a good tool. You wrote it identified correctly. Before I wrote this original post I tried it out several times and could not “land” on a correct description of my pain. But lets do it step by step to see where “TN type 2 from start” type of pain leads to in the classification:

So, the pain is one-sided, non-moving, somewhat fluctuating (lets say, for ease of reading: a line across time, or a hilly line) but never shooting, massive pain (lets say: never a “mountain” of pain on the pain across time graph).

Lets say we start already by going straight to category 13 (a huge head-start):

13. Painful lesions of the cranial nerves and other facial pain

We move in with

13.1 Pain attributed to a lesion or disease of the trigeminal nerve

This classification in essence demands that the pain comes in “mountains”. It also requires “triggers”. That is, all the following descriptions (13.1.1.1 till 13.1.2.5) require this pain characteristic. With this, we cannot allocate our pain inside this tree.
For example, if we go to " 13.1.1.3 Idiopathic trigeminal neuralgia"
we are faced with this required characteristic:
" Recurrent paroxysms of unilateral facial pain fulfilling criteria for 13.1.1 Trigeminal neuralgia , either purely paroxysmal or associated with concomitant continuous or near-continuous pain"
(where paroxysms = mountains of pain; and where concomitant continuous or near-continuous pain = straight line or hilly line of pain across time).
And so, this does not take into account the case that people like me and others have pain that is purely a line or purely hilly - but where there are no mountains.

So that is the problem that I mentioned above.

And then, failing all criteria under 13.1 one moves on, and never fits.
The “closest” fit will then appear to be
" 13.12 Persistent idiopathic facial pain (PIFP)"
But it also does not fit: it has as a criterion that the pain is moving around, which it doesnt do in my case, for example.

And so I still must maintain that the problem that I mentioned in this post exist: our pain is not accounted for in this classification tree.

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#13

I don’t know for sure, but I think you might be taking the description as too black-and-white.

For example, I took it criterion that pain is moving around to mean moving around the trigeminal nerve – sometimes it could be branch one, sometimes branch two, and so on. And that the moving around is not necessarily for a specific person but for the condition overall, that the pain is not found in a specific location for everyone but moves around the region depending on the person (does that make sense?).

Also, keep in mind that what we as lay-people understand a category to mean may not be the same as what a medical professional understand it to be.

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#14

Hi.
The classifications are meant to be seen black-or-white (there should not be any room for guess work - is the idea). If the movement of pain were generally acceptable then it would have appeared under 13.1. directly. And my pain also does not move. So, if the classification said “pain may (!) Move around” then that would be fine, I and other would fall under that lumping category then. But it would still be an unhelpful lumping category and which might mask meaningful differences between conditions (it looks for example that pain that is moving around tends to be more of a psychological origin).

I therefore believe the problem I depicted above is a real problem.

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#15

Thank you, I like your approach. I also have migraine and facial pain, my neuro cannot tell exactly what is causing all off the symptoms. I was happy to see that PIFP is there, am hoping it replaced Atypical Facial Pain, which is a psychiatric DX. I actually find several dx that would fit what they call TN 2. I’m not sure if TN 2 was ever medically used… ?

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#16

Hi flowerpower.
In my experience so far, the doctors seem to treat PIFP also as a psychiatric diagnosis (as this is now the new lump category where psychiatric problems end up in, too). It may be that TN2 was not used by these circles, but the problem remains that, if an illness exist, it should be on the radar somewhere. Right now, we are not on the radar, we are instead a blinking light somewhere next to the radar that reads “there is something in the air but we do not know exactly what it is and we cant be bothered to look more closely”

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#17

TN2 is most certainly headache based! Had it for 10 years and wake up EVERY day wirh a headache first. Don’t play Doctor.

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#18

Officially TN/TN2 are facial pain disorders, not headache based. In fact, headache isn’t even listed as a symptom of either of them at this point in time. This is not not say there’s not a link between the two, this is to say how the trigeminal nerve works is largely unknown and that TN/TN2 is another unknown – there are many, may causes with many, many different symptoms.

For you, headache is a symptom of TN/TN2.

For me, a person who had a clinical migraine diagnoses 20+ years prior to any TN/TN2 issues, headache is not a symptom of TN2.

Please try to avoid speaking in absolutes. The only absolute about this condition is the blinding pain that comes and goes and waxes and wanes, everything else is up for grabs.

azurelle

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#19

European_sufferer,
I would have to agree with you the the classification is an issue. I just drove 2.5 hours to see a neurosurgeon that was the director of a facial pain clinic and performed MVD surgeries, tell me that I did not have atypical TN because I did not have paroxysmal pain. He called it atypical facial pain even acknowledging that it was a wastebasket term and he didn’t know what was causing it.

Some neurosurgeons will refer to TN2 as 2 categories, unfortunately the one I went to see did not. If you check out the website posted below, and other neurosurgeons that appear to be the ones trained by Dr. Jannetta, the man that invented the MVD surgery, they acknowledge TN2 as TN2a (mixed) and TN2b (only constant pain with no paroxysmal pain). They even write about it in the book linked below as being a problem as you mention, that patients will be misdiagnosed and not treated properly. Unfortunately it is the case where physicians treat the diagnostic criteria as black and white, appearing to not listen to the expert opinions on the disease from my perspective.

I think we have similar experiences, as I have only met one physician so far, an ENT, that has been forthcoming in helping me try to find out what is the CAUSE of the problem and not just throw a bunch of meds at me despite progressively getting worse. Hopefully they will rethink their classification scheme with the next edition, because this is something real.

http://www.neurosurgery.pitt.edu/centers-excellence/cranial-nerve-program/disorders-treated/trigeminal-neuralgia

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#20

Dear Trout,
THANK YOU!!
That link is perfect and the naming of what we have as TN2b is perfect. Yes - TN2b (for unfathomable reasons) is not currently a possible outcome while following the current headache classification. It has been classified away. We have been classified away.

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