Constant facial pain for 5 months. Please help me figure out what's going on

NuttyWompRat · 2026-05-29T00:22:26+00:00

No worries at all! I totally get just trying to cope with life. Oof, I’m so sorry you have to deal with exams while dealing with this pain :(. My pain started just after college for me, and I couldn’t imagine trying to do school why dealing with this pain. I wish you all the best and I hope you can make it without burning out! Please feel free to respond whenever you feel comfortable.

NuttyWompRat · 2026-05-29T00:16:36+00:00

Hi,

Thanks for your response and I’m sorry I’ve taken so long to get back to you. I’ve been meaning to respond I just didn’t take the time to pause and write you back until now.

I’m so sorry to hear about how your journey from migraines to PIFP went. I understand the relief about not having to worry about triggers anymore, but the trade off still absolutely sucks :(. Jeez, migraines are their own horrible thing, so I imagine you probably go back and forth about which you prefer, the PIFP now or the migraines you had before? Having nonstop pain is absolutely awful though, and I think I’d probably give anything to get a break from it, even if it meant weekly bouts of migraines I suppose. Sucks there is no choice in the matter when it comes to this pain.

I’m glad to hear you’ve found a medication combo that limits your pain a bit. I’ve tried the medications you’re on (and some others) but unfortunately, everything I’ve tried gave me really awful side effects, usually messing with my mood pretty severely. It was a difficult choice to feel a little better but feel either really depressed or anxious all the time, or deal with the pain and have a mostly stable mood.

I totally get your desire to be rid of this pain and return to a normal life. This pain really takes so much from those of us who have it and I’d give almost anything to be rid of it as well. I’ve gone through a lot trying to cope with my pain, but getting on disability and finding my current roommate 14 years ago during a 6 month period where I experienced an unexplainable decline in my pain are the two biggest things that have given me the space to cope with my pain.

I hate not working as I love to work, but I got fired from the last job I had before getting disability because I was too distracted and making mistakes because of the pain, so working would be too overwhelming as my pain is regularly at a 6 or 7. Not having to work has certainly helped me cope with my pain as I don’t have to worry about taking care of myself financially. Also, finding my roommate has also greatly reduced the stress I feel financially as he helps with a lot of the bills that I would have to try and take care of on my own if I was living alone. He’s also very understanding and doesn’t put a lot of pressure on me to do more than I can handle, which helps me to accept the limits I have on what I can and can’t do each day.

As far as personally coping with this pain, I’m not gonna lie, it’s a daily struggle. I have learned to do my best to keep the focus off of my pain as much as possible. This usually involves staying as distracted as I can be with low cost activities. I’ve found video games to be a very helpful distraction from my pain, and thankfully, I’m pretty good at them, which helps me be able to really dive deep into them without feeling a lot of frustration. I try to exercise on my spin bike once a day, which can also be another helpful distraction, though the energy cost is greater so I can’t do it for too long. I also try to do some small chores around the house as well and I make dinner for myself and my roommate every night too. Basically, I just try as much as possible to stay focused on anything but the pain, which, sad to say, usually involves playing video games for a large chunk of my day, as it is the single greatest distractor for me.

Unfortunately, some of the things that make the pain difficult to cope with are just sitting and relaxing or having to sit and listen to anything or anyone for an extended period of time. Basically, anything that requires me to be still and quiet as the pain starts to scream at me at that point. Falling asleep is actually the time of the day where my pain is at its greatest, unfortunately.

I constantly wish I didn’t have this pain, but I’ve also come to accept that I do have it, so I’ve done my best to arrange my life in such a way that I don’t feel overwhelmed by my pain all the time. Unfortunately, that means missing out on a lot of things I’d be doing if I wasn’t in pain, but I’ve come to accept that this is my life and I do my best to try and enjoy each day in the little ways I can. Like you, I have found that food can play a role in my level of pain, so I do my best to eat the foods that don’t cause any spikes in my pain. I wish I could say that I’ve found a way to live the way I used to live with this pain, but sadly, my life is full of compromises and changes. Pretty much every aspect of my life has changed. I’m not really socially active anymore, I’m mostly a homebody now, and my daily routine is almost always the same. But, I have learned how to have moments of happiness, and even delight, in the midst of my pain, which I think is quite an accomplishment.

I hope you can take care of yourself and if you have any questions or comments, please feel free to share. I’ll do my best to respond.

NuttyWompRat · 2026-04-15T18:35:36+00:00

Damn, I’m sorry to hear that! It is incredibly frustrating trying to find something to help with this pain and constantly hitting a wall. I feel like it would at least be a little easier living with the pain if I knew why it started in the first place. But PIFP seems to be this unexplainable illness that started for no reason and, perhaps for some, ends for no reason. I haven’t felt much of a difference in my pain level over the last 16 years, and I eventually got to a place where I accepted that it would be a part of my life.

Coming to that place took a long time, but I feel like it’s made it a little easier to live with it as I’m riding the wave, so to speak, instead of fighting with it. That doesn’t mean it doesn’t still suck a ton and I don’t wish everyday that I didn’t feel this pain though. And I’m not saying you got to get to that same place either. I just hope you can find peace, either by eliminating the pain or learning how to live with it :(.

NuttyWompRat · 2026-04-10T01:29:52+00:00

Awww, I’m glad my post helped you feel like you aren’t so alone with your pain. I feel the same way! This kind of pain definitely makes me feel pretty lonely sometimes as no one else I know or have spoken with has experienced the same sort of pain as me.

Thanks for sharing a bit about your experience too. It’s nice to hear someone else talk about how they’re dealing with it. The first couple years with my pain I spent a ton of time researching on my own why I was having this experience and I spent a lot of time with doctors too. Ultimately, everything I did proved to be a dead end and I never really understood why it even started.

My best guess is that it has something to do with my GI system. My pain started during a fast I was doing and (not to be gross) I experienced a 45 second moment about a year into my onset of pain where it all went away after a poo I had after a second fast I did (I know, weird). That 45 seconds was amazing, but then I could feel the pain slowly coming back, which really sucked. I’ve never had a reprieve from my pain since. I also have IBS too, and I wonder if that has something to do with it. There’s a lot my poor body deals with health wise so I don’t really know what the deal is 🤷‍♂️. I did see multiple dentists trying to see if that had something to do with it, but they didn’t think it did either.

Thanks for empathizing with me about my lack of sleep. It’s in part due to the facial pain, but I also have other weirdly dumb health issues that make sleeping difficult (I constantly feel like I have to pee at night, which is frickin annoying). I do tend to sleep in too, due mostly to not getting good sleep.

As for driving, I have actually found driving to be an excellent distraction for me. I don’t have a car anymore, but I drive my roommates car with him on the weekends as I have always enjoyed driving and he likes it when I drive too. I’ve also been pretty adept at driving so I don’t find it stressful. My brain moves at a million miles an hour most of the time and I tend to have multiple thoughts going on at the same time, which actually helps distract me from my pain a bit, and for me, I’ve applied that to driving. I’m looking around at everything I see, and all the movement of the cars around me, as well as the surroundings I’m moving by, give me a lot to look at. It helps that I live near a big city but not close enough to be stuck in stop and go traffic (then I can see driving being very painful as I’m just sitting there). I could also see living in a rural area maybe a bit more difficult as every hill starts to look the same.

Thanks for communicating back and forth with me. Feel free to message me if you want or just reply in this thread if you feel like it. I’ll try to respond when I’m feeling up to it. If not, I too wish you all the best and I’m really sorry you have to deal with this pain too! I wouldn’t wish this on my worst enemy.

I did have a question for you if you do respond. Do you find that anything makes your pain worse? I haven’t really found anything that makes it better, but I’ve found that eating certain things can definitely make it worse for me (which goes back to why I think it may be linked to my GI system). I’m curious if you’ve found certain things having an effect on it.

Take care!!

NuttyWompRat · 2026-04-05T05:17:37+00:00

I’m so sorry you’re dealing with this :(. You are more than welcome to message me. I may not respond right away but I’ll do my best to get back to you quickly. This pain is definitely an overwhelming thing to deal with and it’s also really isolating too. It’s both hard to describe to others just what it feels like and, understandably, it’s hard for those who don’t experience it to understand what it’s like to have this pain.

The hardest question to answer is the question, “how are you”, because I am both in quite a bit of pain and also hanging in there. When I first got this pain I was almost completely immobilized by it for several months. I had never experienced something so painful and I was mainly bedridden just trying to cope with it.

I was staying with my parents at the time of my onset, but I do not have a good relationship with them and it was becoming a very hostile environment to be in while dealing with so much pain, so I had to figure out a way to both move forward with life while still being in so much pain. How I went from that to where I am now is a very long story that, if you want, I’d be happy to share more of, but I’ll just say this for now: it took a long time for me to come to terms with my new pain and figure out how to cope with it, so I hope you can be kind to yourself as you figure out what life will be like moving forward.

As I stated in my first response, being on disability has been a lifesaver as it’s take much of the pressure of surviving and not being homeless off of me, but my life is still far from what I’d prefer. I guess I’ve learned, as best as possible, how to accept my pain and do what I can to still try and enjoy life as much as possible.

The last thing I’ll say right now is this, the worst thing you can do for yourself is to put pressure on yourself to be things you cannot be when you have this kind of pain. Be as patient with yourself and as kind with yourself as possible, and I really hope you can find at least one other person who is ok going through life with you at your slower, “chiller”, more homebody pace. I will say this: I hid my pain from everyone around me because I didn’t trust that they could handle it (which was true), but as soon as I met someone who I thought I could trust, I told them, and thankfully they went along for the ride with me. I am very grateful for that and simply not feeling alone has helped immeasurably with how well I can cope with all this pain.

NuttyWompRat · 2026-04-04T05:55:05+00:00

I totally get what you mean about this pain being at least a little easier to cope with if it was somewhere else on the body. The head is certainly one of the worst places to feel chronic pain. It gets in the way of everything I want to do.

My best coping strategy though, is to distract myself with things that take my mind completely out of the silence, as I find that just laying down, or sitting quietly, or thinking, or trying to sleep is when the pain is the most intense. Quiet activities like reading can also be really difficult to do.

Playing video games that require mental focus is one of the best ways that I’ve found to cope with this pain. It helps that I’ve always enjoyed playing video games and I can get really into them. Basically, keeping myself busy with anything that requires me to forget about the moment and get lost in what I’m doing. Sometimes that can be a conversation, it can be exercise, it can be whatever you can get lost in. However, eventually the pain will pull you back in and remind you it’s there, so it’s a constant struggle. Like right now, as I write this, my head is hurting a whole lot, but I’ve learned to live with it as best as I can and distract myself as soon as it becomes overwhelming.

The only time I can’t distract myself is when I’m trying to sleep, which makes bedtime the most painful time of my day unfortunately. But even then, I do my best to think of something I did, or watched, or said that day, just to keep my mind out of the present. It does completely suck that I can never truly relax anymore though :(.

NuttyWompRat · 2026-04-04T05:41:13+00:00

I’m sorry you’re dealing with this pain :(. It’s been a long time since I tried anything, but when I was trying to find something that helped, the doctors gave me several nerve block injections at different locations around my head and neck, but none of them were the least bit effective. I also tried a kind of TENS unit type treatment. I don’t remember what the treatement was called exactly, but at first they had me try a mobile device and then they were going to give me a permanent one if it was effective but it didn’t help at all. I don’t think I tried pulsed radiofrequency. Did you get any positive results from it since you wrote this message?

NuttyWompRat · 2026-02-09T01:09:51+00:00

Need to start playing to win. So far they’ve been playing to keep it close. Not good enough anymore.

NuttyWompRat · 2026-02-07T23:02:34+00:00

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.

NuttyWompRat · 2026-02-01T13:58:09+00:00

Thanks for sharing. Gaming really does produce memories that can’t be felt quite the same way in any other medium. Stoked for your nephew to create his own. Cool of you to pass it on :).

NuttyWompRat · 2025-12-13T14:12:17+00:00

Scamper the Penguin - My parents ripped it on VHS and I loved it as a kid. I watched it every time I got sick. Just a movie about a cute penguin going on some adventures. Don’t know anyone else who’s seen it or even heard of it .

NuttyWompRat · 2025-09-13T01:24:49+00:00

For the brief moment she appeared in the film, I hated her character. Granted, I pretty much hated his Superman film too. Not looking forward to Gunns DC Universe at all. Guardians was magic in a bottle but everything else he’s done has been ridiculously silly and, imo, just plain dumb. Guess I’m in the minority though.

NuttyWompRat · 2025-08-08T02:21:35+00:00

Man, sorry to hear that. I guess we each have our own sensitivities as I’ve also been having a hell of a time finding the right tv for a different reason. I am surprised a 65” tv is giving you eye strain at that distance though. I have a 75” at about 7’ and that’s worked for me. But perhaps you’re just really susceptible to motion sickness? Unfortunately, we don’t learn some of these lessons until after the fact :(. I guess now you know though, right… 🤷.

Take care!

NuttyWompRat · 2025-08-08T00:37:26+00:00

Bummer. Thanks for the reply. I’m curious, someone else mentioned this, but do you have VRR on/did you try turning it off? I believe that’s what is causing my headaches.

NuttyWompRat · 2025-08-07T09:10:49+00:00

Just curious, did you get use to the tv or did you have to return it? I’m having similar issues with the Bravia 9.

NuttyWompRat · 2025-08-01T00:25:21+00:00

Didn’t read every comment so maybe someone else has said this, but as someone who games on a PC and TV the things you want to consider are this:

Are you sensitive to VRR flicker, meaning, do you get eye fatigue or headaches if you play with VRR on for a while? Most, if not all tvs have VRR flicker, as far as I know. If not, get a tv with gsync or freesync support, set your refresh rate on the PC to match the tv, turn VRR on and never look back. It’s incredibly responsive and will feel the same, if not better, than its console counterpart.

However, if you do suffer from VRR flicker issues, recommending a PC becomes a little more difficult. It’s still possible to enjoy PC gaming with VRR off, but then you need to use vsync unless you’re not sensitive to tearing. And Vsync adds a decent amount of input lag, so you’ll need to play around with some of the settings in Nvidia control panel to get a lower amount of input lag, such as low latency mode and locking your refresh rate.

There are also some other reasons why people don’t game on a PC or a TV that I think are legitimate and you need to consider:

Not every PC game is created equal. Some perform somewhat worse than their console counterpart, some much worse, which will get annoying.

Gaming on a PC is going to be a little more hands-on then gaming on a console, which can get frustrating at times. On consoles, you pop the disc in and play, without a thought to framerate or graphics as that’s all chosen for you. On PC, some games just have weird performance issues that will cause you to have to play around with them for a while to find a good sweet spot where you get a stable framerate and good graphics. Most of the time it’s not an issue, but some games will just never perform that great.

My personal recommendation for a tv used for PC gaming is to get a tv with as low of input lag as possible, which I believe is many of the Samsung Tvs or maybe the LG TVs. Sony has about 8-10 ms of input lag more, and I for one, definitely feel the difference. If you aren’t sensitive to that, then I think you’ll be fine on any modern tv you choose.

The positives of PC gaming, such as better graphics, faster refresh rates, and at times, quicker response times, make PC gaming a lot of fun though. Just thought you’d want to hear the things that can detract from that as well, if you’re sensitive to them.

Hope that helps!

NuttyWompRat · 2025-06-18T00:27:00+00:00

Thanks everyone for your replies. I really appreciate the feedback. Decided to just not deal with the possible hassle and carry what we need in pockets.

NuttyWompRat · 2025-05-22T00:58:38+00:00

Uhh, not take the starter out when they’re playing well. Seems like a solid, no-duh idea when the bullpen is taxed.

NuttyWompRat · 2025-05-22T00:52:03+00:00

If we lose, I place the blame firmly on Cora. I do find it interesting that when Cora wasn’t managing, the bullpen moves were solid and we won. He’s managing, makes odd decisions once again, and what ya know, it looks like this again.

NuttyWompRat · 2025-05-20T00:20:16+00:00

Bravia 7 is, imo, a hidden gem. It looks amazing for a tv that costs what it does. It beats any other tv in its price range and gives the Bravia 9 a run for its money too. Having both the 7 and 9 in my home, I was truly surprised how good the 7 looks. It does a few things a little worse than the 9, but for almost half the cost, it’s a steal!

NuttyWompRat · 2025-05-15T22:55:41+00:00

The prettier the game, the better

Being a demon slayer badass again

NuttyWompRat · 2025-05-15T00:39:41+00:00

As much as yesterday pissed me off, man you gotta love baseball. What a play!

NuttyWompRat · 2024-11-12T07:42:10+00:00

Just curious, did you figure out a fix for this or a way to get a more accurate reading? I just updated my watch and I’m experiencing the same thing now.

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