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).