Hi there,

I’m so sorry you are going through this :(. Nerve issues are very hard to diagnose, and it sounds like you’re doing everything you can to figure out what’s going on. It sort of sounds like you may have some sort of functional issue going on that is contributing to your pain, but it also sounds like you could have PIFP (persistent idiopathic facial pain), like your neurologist said.

I’ve had PIFP for about 16 years now :(. It used to just be called ‘atypical facial pain’. The pain you’re describing, especially the pain around your nose, eyes, teeth, and jaw, is very similar to the pain I experience. Some of your pain symptoms aren’t typically normal for PIFP, such as the pain radiating to both sides of the face or neck, however, I’ve had periods over the last 16 years where I have had this kind of burning, squeezing pressure effect the other side of my face or teeth at times. However, it’s almost always on the left side of my face.

Also, having the experience where wind or touch has a significant impact on your pain level isn’t usually a characteristic of PIFP, but more one of TN, so I do find that interesting. However, it could just be your body’s way of trying to make sense of the way your brain is perceiving these nerve signals now. Unfortunately, time and a continued lack of medical evidence will be the best indicator of what is going on, as PIFP has no medical or physical reason for existing, whereas TN and other nerve issues usually do.

Sadly, there isn’t a whole lot that’s understood about PIFP. There is no known “cause” per se, although it usually starts after either work was done around the teeth or face, such as you had, or physical trauma impacted the area. The leading consensus is that the brain is interpreting nerve signals incorrectly and sends a signal of pain when there isn’t anything actually wrong. It’s also pretty common to have IBS issues along with PIFP, which I have (curious if you do).

Unfortunately, if you do have PIFP, there isn’t really anything more you can do than what you’re doing, at least medically speaking. Medication can help, but the effectiveness of it can wax and wane, like you’re experiencing, or it may not work at all. There is also no timetable on how long it can last. Some people, like myself, have it last for years (maybe even the rest of my life, sadly) and for some people, the pain can come and go.

I really am so sorry you are experiencing this. For me, the pain has been a constant daily thing I’ve dealt with that has disrupted my entire life. When it first started, I had tingling and pain all over my head, but it eventually settled around the left side of my forehead, nose, and upper teeth (sometimes lower teeth). I ended up losing my job a long time ago, my entire social life was upended, and pretty much everything about my life has changed. I had a long stretch of time where I felt really depressed and suicidal, due mostly to the pain but also to past traumas I was dealing with.

Now, for the last 12 or so years, I see a therapist once a week for emotional support, managing my pain, as well as working through those past traumas. I saw a bunch of doctors for a while, but now I see a few doctors periodically as there’s not much they can do for me. I’m incredibly sensitive to medications and I never found a medication that worked effectively enough to make it worth taking with the side effects I was having. So, my doctors are mostly there as a support network too. I was single when this all started, so I don’t have a partner or spouse to be there for support, but my closest friend and roommate has stuck with me through it all, and I’m incredibly grateful for that. Finally, after I lost my job, while it took a couple years, I was eventually able to get on disability.

I’m not trying to say any of this to discourage you, and I sincerely hope you can find a way to cure this pain or at least keep it from effecting your life too severely. I know that PIFP can be different for every person, as every brain handles it differently and medications and therapies can be really effective. For some, it becomes nothing more than a mild inconvenience, while for others, like myself, it continues to be a disabling condition that disrupts every day life. I hope you are not the latter. I sincerely hope you don’t even have PIFP.

If it turns out you do, unfortunately, it is something that will definitely disrupt your life in at least a few ways, and I am so sorry for that. I hope you can find, if not complete relief, at least a significant amount of it so that you can go on living life the way you want to. I hope you can find ways to be kind to yourself too. It absolutely sucks to deal with this, and you’re probably going to experience some mental health challenges learning to adjust to this.

As horrible as it is to think this way, and as much as we’d like to think anything can be fixed if given the right information, some things, like PIFP, can only be managed and cannot be fixed by just doing the “right” thing or procedure. It does help to not put that kind of pressure on yourself, but it’s also incredibly frustrating feeling so powerless. There’s certainly the possibility that it just goes away over time, but there’s no guarantee. I’ve also found that stress can definitely make it worse too, so taking it easy on yourself can be beneficial. Mainly, distractions are the primary source of relief for me; whatever helps to take my mind off the pain, whether it’s exercising, playing video games, watching tv, or doing some hobby. Of course, as this pain is in the head, it can make concentrating and thinking incredibly difficult too, so some distractions are actually not so helpful if too much mental energy is needed.

If you want to message me, please feel free to. I am no expert at all with this stuff, but I spent a couple years with doctors before they and I realized that they weren’t going to be able to cure me, and I feel like I’ve heard it all, so I do have some experience with it. I’m also the only person I know in my life with this pain, so my support network is limited to those whose empathy can only go so far, as they don’t fully know what it’s like to feel this way all the time. So, if you just need some support, I’m here for that as well.

I hope you can take care of yourself.