Inhaling pain anyone?

Years ago (not sure how many) I occasionally had this odd pain - sharp, like a bitter cold wind blowing on a raw, exposed nerve - when I inhaled. I once mentioned it to a doctor when I was there for something, and he basically shrugged. I ignored it like I do most pain, because it tended to be transient.

Then in January, it started happening. Daily. Many times a day. I assumed it would go away on its own like it always had in the past, but it didn't.

I had a physical scheduled in March, so waited until then to mention it. (A week before, I had a really bad day, and if I hadn't had an appointment the next week, I would have been in the office in a flash.) The NP wanted me to see a neurologist, which ended up being in April. He put me on gabapentin, called it Atypical Facial Pain (MRI was normal - Ha! See, I DO have a normal brain!), and once we upped the dose enough, it quieted matters. Not eliminated, but enough to function. At this point, I hadn't made any connection beyond ear pain (I now realize I also have throat pain, but generally, the ear is a lot worse.)

I started seeing a TMJ specialist (stupid confounding factor made me assume all the pain was TMJ for decades) in July. In addition to a day splint, he sent me to a physical therapist who specializes in TMJ. He did take care of some TMJ things, but got to a point where he didn't think he was doing me any good. I was feeling no improvement in pain levels. (All on the left side, though my x-ray showed my joint more out of whack on the right.)

I finally realized - duh, it isn't TMJ on that side. Upped the gabapentin, then started having definitive pain in the throat when I breathed and swallowed. Once I mentioned that symptom to the assistant (I never saw the doctor or talked to him again, just calls through the assistant), she said she needed to run that by him, and that's when they started me on epitol. (Generic tegretol.) Helped some, but now I think it isn't helping so much. (I was also weaning off the day splint, and wondered if that was yet another confounding factor, but experimenting now, and I think it isn't that. Sigh.)

I'm finally off the gabapentin, and finding myself annoyed again with the stupid "it hurts when I breath" pain.

Really, does it get more stupid than that? (I call non-functional pain "stupid pain" anyway.)

Does anyone else have pain when they breath?

During a severe episode it can feel like breathing in itself is touching the nerve. Kind of like you're talking about. But any contact with the area when in an episode will send 'huge jolts of pain' and feel like I'm wincing or cramping. By that point it's so painful it's hard to be even coherent so it's difficult be objective. I do know it seems like both inhaling and exhaling were made more difficult.

When things are merely bad, not full blown, breathing shallowly through my nose would seem less stimulating than sucking air. Especially cold air is bad.

When things are relatively good, I don't notice breathing. I think it's a relatively minor trigger in the grand scheme of things for me. But I wanted you to know it seems to have some relationship that I've experienced.

Yes, I have pain when I breath in ESPECIALLY if the air is cold. I constantly wear a scarf over my nose and know that it's the cold air hitting the nerve at the back of my throat. GPN symptom classic.

Well, I can't believe it!! I haven't been on here in some time but this is EXACTLY what I have!! Omgod it is some kind of relief to know that I am NOT crazy!! I was in the ER a week ago because I had a beyond horrible migraine with pain upon breathing. I'm now waiting to see a new neurologist. I have had Gamma Knife and at one time had ATN but now it is morphing into different areas. Please someone tell me what your meds are. How much Gabapentin do you take MOF??

So pain in your nostril upon breathing is a GPN symptom?

granadam said:

Yes, I have pain when I breath in ESPECIALLY if the air is cold. I constantly wear a scarf over my nose and know that it's the cold air hitting the nerve at the back of my throat. GPN symptom classic.

I don't currently take gabapentin, but I was taking 1200mg before (300mg pills, one morning, one midday, two at night.)

I know when I first when to the neuro, the "it hurts my ear when I breath" kind of met a blank look.

Just wanted to update - I still get that stupid pain inhaling, have seen a neurosurgeon (for something else) and asked for a second opinion, and he immediately thought "glossopharyngeal." And the MRI he sent me for backed it up. I am not going back to the old neurologist.

Now waiting for an ENT appointment to make sure there isn't any actual ear issue (last ENT appointment was when I was maybe 6 or so; I'm much, much older now!), then back to the NS and I think he would be scheduling surgery if all the stars align. (I've been through several other meds; the best was Lyrica, which dialed things down, until it didn't any more.)

How have things been going for you?

I had the nose pain upon breathing for an entire winter, two winters ago. I took to wearing an early in that nostril, smearing Oragel up my nose with a Q-tip, and wearing large, lightweight scarves over my face. If it happens again, I will buy the face coverings that some Muslim wear. When it was bad, I really needed every bit of my face covered, unfortunately.

Right now, though, I'm on 900 mg of gabepentin three times a day, and things seem to have quieted down. Oh, and it's not winter. Winter is the worst.