Hello all.
I am brandnew here, but not new to the pain. I have been having this pain for many years - but by a process of elimination and by finally finding specialized pain doctors I now know that I have face pain (instead of the various other diagnosises that I got over the years. Many of you know this drill, no doubt).
I am currently put on Tramadol and pregabalin.
I am planning to engage with the community here (not least because, as someone here put it, only we and our clostest people truly “get it” (and to be honest, before all this hit me myself I also would not have gotten how hard all this is). But before I do, and given that there is a doctor-lottery, I need to please get clear which label to use for my pain, so I can ask specific questions.
I have been put by the doctors (here in Germany) into the Persistent Idiopathic Facial Pain (PIFP) category - though some of them also used the term atypical face pain. This topic is about Persistent Idiopathic Facial Pain (PIFP) versus Type 2TN: After I have read around topics on livingwithfacialpain I was confused whether A) this is considered by all the same as Type 2TN or B) whether sometimes the two could be confused or C) whether they bleed into each other, i.e. are not very clearly separatable. Note that the last time I saw the doc, and when I tried to discuss this (time-pressed docs love long discussions, of course) she blocked it off and said “you dont have TN!”. But I cant see how that could be said in my or other cases. Thus, I am here and would very much like feedback from this community on these points. I could also imagine that others happening upon this site would find this topic interesting, so a clear discussion of the commonalities and differences between Persistent Idiopathic Facial Pain (PIFP) and Type 2TN (and its various synonyms) here might hopefully prove useful beyond my case.
As for my specific case: some years ago I had a wisdom tooth extraction that went very wrong, lower jaw. A couple of years (!) later the face pain started. Luckily my face pain never goes beyond 5 out of ten. In the first years, it even never got beyond 3 or 4. In the first years, I didnt pay attention to very low-grade pain, so I cant say if I always had low grade pain since the start of it all - but these days, when i pay attention, I always am in pain (unless I sleep. Blessed sleep!), at maybe a 1 or 1,5 out of ten. Anyways, for some years I would get the pain “peak” (again never did these go over 5) shortly after getting up, but then ithe pain didnt bother me (or maybe even left me) for the remainder of the day (good days, but only in retrospect)… Then for some years I got two or three peaks, and now they are bleeding into each other. The pain is somewhat throbbing, and it feels like maggots moving under my skin, or like there is a tooth rotting at my temple (the pain is at my temple, one sided only). Sometimes it feels like sunburn. I dont have trigger points and I feel the pain coming, so its not suddenly upon me. So, from what I read so far, I dont thus have classical TN? But could I and others like me maybe fall into either of the PIFP or the Type 2TN category? I am also asking because I was planning to open up a “medications that worked or didnt work for PIFP” thread in the future (as I could only find such a dedicated medication thread so far for Type 2TN). Many many thanks in advance. Many thanks also to whoever put up this forum!!
I’m afraid that question may be a bit too “in the weeds” for most of us non-doctors here. There is quite a bit of overlap and confusion and unknowns in all the different labels that are applied to the facial pain conditions. I think what is most important is not to have the exact correct label (if that exists!), but to have a doctor that you feel really understands your condition and has some constructive ideas of how to treat it. At this time, treatment seems to be more of an art than a science.
If you haven’t already, get a copy of Striking Back by Weigel and Casey, as he has a very in depth discussion of all the different diagnoses. If you haven’t had an MRI, that would be a good thing to have to rule out obvious compressions or tumors. I would also try and get a high definition CBCT scan of the affected areas if at all possible.
Your situation sounds very similar to mine–trigeminal nerve damage that was apparently caused by dental trauma. My diagnosis is Trigeminal Neuropathic Pain. But I only feel pain in the mouth (mostly upper gums, but also some in the lower jaw and along the side of the tongue). This is a very frustrating condition and I would encourage you to continue to search and try many different treatments, both with or without a doctor.
ya striking back is the best information
Thank you for your replies. I have had various brain scans (some with contrast even). All normal.
I have ordered that book via Amazon a long time ago but it just won’t arrive 
I am a scientist (so, technically a doctor) but didn’t study medicine. And not to sound mean, but doctors in medicine usually didn’t acquire a sound understanding of the scientific method (it’s simply not taught to them in the required detail - which is a shame). So, while there is nothing wrong with their IQ, they often miss things, especially when it comes to rare conditions that aren’t understood yet (namely by those doctors who use science, rather than books or hearsay or “seemed to work last time” (none of these necessarily bad, but surely not as crisp as a good understanding and targeted approach). And while some TN are well understood (compression of nerves, say) the atypical condition is a lumped category and we all may gain a lot if it could be meaningfully be split up into subcategories so we can do more targeted interventions. I know we agree on this, but I just wanted to clarify again why I started this post. Sometimes, communities like these can use crowd knowledge and which can be (for rare and misunderstood conditions) be better than what doctors say. But for that we need surveys of what worked for what (and which is the impetus for my post). I am simply also a bit afraid that the trigeminal book is a) somewhat outdated and b) doesn’t accumulate crowd wisdom.
As an example, our fellow sufferers with cluster headache have a community and they combined their wisdom and now the doctors listen to them in earnest. In fact they as a crowd found two types of approaches that the doctors missed. Many of them are tremendously helped by these approaches (note that, out of sheer despair, I tried these approaches for my atypical face pain but they didn’t help my condition (well, it was a long shot and I knew that)).
Ok so I wait for the book to arrive but I might be back and reopen the topic if the book doesn’t have the answer (Andy given the above, I doubt it has the answer. But I am open to be corrected by the book).
Again, many thanks.
And on a personal note: sorry to hear that you suffer similarly. Yes it is indeed a frustrating condition. I wish you and everybody here all the best of luck.
I am and have tried many things, yes. Oh well.
For me having a diagnosis that fit was not the question…the question was how to get the pain to stop. I too had damage to my trigeminal nerve after a dentist appointment that went wrong. It turns out I had a bone pressing on the same nerve at a different spot. The nerve would get fired up after a massage, pressure on my neck or lifting something heavy. It took me years to figure out what triggered the pain. Eventually my TN diagnosis turn to atypical facial pain to some called Eagle Syndrome where I had that pesky bone shortened and added TMJ to my medical records. Medication did not help me and like you sleep was my only relief. I now have physical and massage therapy each week to keep my muscles from tightening and thus the nerves in my face from causing me pain. I still look to the question of what can make me not slave to pain and it includes: not using a computer, correct posture, eating healthy, stretching, and avoiding my triggers. Good luck in your journey, there is hope!
Hello, i have also been diagnosed with atypical facial pain from oral maxifacial surgeon based on ct scan not on MRI which i am still keen to have. I would be interested in what has worked best for you as i would love my pain levels to be lower. I read your post with interest as u too are confused with all the different labels. Possibly trigeminal neuropathic pain is another one. i am on some facebook groups where there seems to be a mix of different diagnoses. i will keep my eyes peeled if there us new discussion thread opened here.
Hi. Yes, its all so confusing. As far as i can tell (so far), even though our condition is a dump-category (as nobody really knows how the pain comes about) there is no shortage of names for it. I have seen many, among them:
Atypical face pain (AFP), persistent idiopathic facial pain (PIFP), chronic facial pain (CFP) and facepain of obscure etiology (FOE or POE). And this is not even covering the appearing or real overlap with the trigeminus conditions (subtypes etc). Living and dealing with this type of pain is difficult as it is, and wo could really do without such confusion added. But I guess until it is found out what the underlying cause(s) is or are we have not much hope for better descriptions. However, another route (which I aimed to follow with my post) would be to divide these conditions up by the treatments that worked. That was my ultimate goal of this post: if we could identify some treatment routes that worked for some, we might even identify what these people have in common (e.g. in terms of location of pain, type of pain or temporal occurence pattern of their pain). This then could help newcomers hone in much faster to the types of treatment that would (likely) work for them as well.
As for myself, I have eaten many pounds of pills over the years, and a wide mix of types. So far, I can’t honestly say anything has helped me really - so you and I are in the same boat. In my case, Ibuprofen and Naproxen and Paracetamol kill the pain (Aspirin not so much) - but by now my liver and stomach cannot take these anymore (and besides, I took them rarely as otherwise I would have gotten medication-induced headache on top of it all (something which might have happened in the first year of my condition)).
Hello Ann4. May I ask how much pain reduction you have been able to achieve with your techniques (a rough percentage estimate)? I have similar issues and am always looking for new or different techniques. Thank you.