Nasal pain and/or facial pain

[MaxD]

After months of chronic ear infections, and before developing Bell's palsy, I had severe shooting pains in one ear that spread to the temple, cheek and jaws. In hindsight it (and the Bell's palsy) was likely caused by inflammation in the nerve bundle that passes through the ear and contains the facial nerves. Low doses of prednisone definitely helped, as did applying heat to the area. The pain was constant and kept me up all night and useless all day. Your pains may be different though. Good luck and hope you find relief. Let us know what works for you.

I just want to know:

1.) Have you ever had nasal and/or facial pain?
2.) How did you deal with the chronic pain or make it feel better?

I really appreciate all of your advice and concern about my treatment but I am confident that I am receiving appropriate care right now. I can distract myself from the pain by watching tv or doing other low effort but engaging activities but I need to focus on my work during the day. The pain is affecting my productivity.

I was just diagnosed in January based on multiple positive blood tests and symptoms. My CT scans, MRIs, Xrays, scopes, and other examinations all look clear so I never had a biopsy to confirm. It is limited to my upper respiratory system. I have not reached remission. Mtx is my main treatment drug. It is not being used as a maintenance drug. I have had symptoms since July 2013 when I started searching for answers. I'm being treated. I saw my rheumatologist and ENT last week. The blood tests look better and the scope revealed no signs of anything of concern. I didn't ask them about pain management because it is not unbearable and I didn't realize how much it was affecting my productivity. The pain keeps me from concentrating on my work. I can do menial tasks but it is tough to sustain my focus with the nagging pain that is occasionally very painful (only lasts a few seconds).

[Lilly]

Hi lag713, I have chronic facial pain. I have always had some pain from the beginning of my "wegeners" life, Easter Sunday, 1990. I had been sick for a year with ear infections, etc. But 1990 is when I was diagnosed. Over the years my Wegeners has totally devastated my sinuses. Better than my kidneys! Im very thankful for that. At this point, I have no sinuses at all to speak of. Its an open cavity. I have had several "lacramil eye surgeries" to keep tear ducts open. Then 2 reconstructive nose surgeries so I will have a nose. Mine was flat to my face w/saddle nose. Now I have glass "Jones" tubes in the corners of my eyes that go into my sinus cavity so my eye watering goes into the tubes and not constantly running down my face. At this point my pain is so bad that I take Morphine ER (extended release) in am and pm. Then I have Morphine 15mg IR (Instant release) for breakthrough pain. My forehead sinuses, sinus cavity (that still needs irrigating and cleaning, lots of crusting-and pain) teeth ache, between my eyebrows hurt and throb, its all just undescribeable pain. But the meds take the edge off. I still want pain, so I can tell whats going on if something changes. But I have to be able to function! I HATE Taking meds, but after 24 yrs, I just don't have a choice. I am so sorry you have that pain. I honestly know how you feel. I wish you the best and if you have any questions for me, feel free to ask. Nice to meet you, sorry has to be under these circumstances. :-)

[Lilly]

Well I know how you feel. I was on OTC Pain relievers for my facial pain when I was working full time. I didn't realize how bad my pain was really distracting me from my work, and it was suffering. Strangely enough, I worked for a Pain Mgt Dr. And she told me I was making some mistakes in my work, and noticed I was constantly rubbing my face and forehead. She started me on a treatment. That was 10 yrs ago. Now at this point the meds I take, my lethargy, my surgeries I am having, etc. I am on Disability now....... :-( But I am working 20 hrs a week verifying insurance for an eye dr. Its a very flexable and a job that I can sit and just concentrate on one thing. And I am just checking the insurance, the other full time girl does the main insurance and billing. It helps her for me to do the first step for her. :-) That's my work story......Its hard I know. If my pain is too much and interferes with my work, then it is too much pain. If I have pain, which I always will, but the edge is off and I can concentrate on something else, then that's "pain management" to me. Take care !

[annekat]

I am so sorry about all this pain that people are having. I've recently been told that my sinuses have "self-obliterated", that I have no sinuses left, and that there will be nothing collecting in them to cause problems, no crusting, any of that beyond what my nasal cavity alone is still capable of producing. The ENT did use the term "common cavity", which sounds like what you described Lilly, and I'm still quite confused. Maybe he meant it became a common cavity but the part that was the sinuses became sealed off by rearrangement of bone and other tissue and there are no longer air pockets there to become filled with stuff, infected, etc. but the nasal cavity is still an air-filled cavity. (See my recent thread, Disappearing Sinuses). I am confused because although my sinuses obviously went through lots of crap to get to this point, I never felt any of the pain that you all are describing. My nasal cavity is now functioning pretty well on its own, producing mucus, without any particular crusting. I'm not clear as to whether I still have turbinates, and I do have a fairly moderate saddle nose.. I just found this out a few days ago and still have many questions. I guess if this had not happened, I'd be facing worse and worse conditions and the kind of pain you are having. But my ENT paints a picture of my former sinuses causing me absolutely no trouble for the rest of my life. Not to say I may not have other WG problems. But my heart breaks to think of your pain and the meds you must take to control it.

[KimH]

H,I see the same ENT as you do. He has always called me back to answer any questions. I too have frequent pain. I guess from all the damage done. The weather also affects my sinuses. The wind,rain and storm fronts increase the pain. My head is like a barometer. LOL. I use hot or cold compresses. Nothing OTC helped except ibuprofen. I try facial relaxation since the pain makes my face tense and that exacerbates the pain. The Ponaris is an emollient that would soften and moisturize the sinuses and perhaps alleviate the bleeding. All that any of us can do is to speak of our experience. Ask the good doctor for more suggestions. I hope you feel better soon. The rain today is not much fun for my head.

[annekat]

So sorry, Kim, to read about your continuing pain. I have to conclude that you don't have the condition of "self-obliterated" sinuses that I do, but rather the more typical thing like what Lilly and many others have, with possible erosion of the bones opening everything up to a common cavity with tissue that continues to cause problems. No doubt an oversimplification, as my understanding of it is still rudimentary. But I feel fortunate to have no pain and wish that could be true for all of you, too.

[lag713]

Thank you everyone for sharing your experiences. We all seem to be as unique and individual as snowflakes when you see our progression and treatment. I have been feeling a lot better although I still have pain. To be honest, I posted my questions originally because I thought the pain I was experiencing was normal and didn't want to go to the doctor. After it was just unbearable, I called my rheumatologist but she was gone for the week (Friday afternoon). Her physicians assistant asked that I get checked out by the ER if it was bad or at least an urgent care facility to make sure it wasn't a sinus infection. Knowing what the ER costs, I elected to visit the local urgent care. I knew (in my gut?) that it wasn't a sinus infection but I went because I really like the PA and she looks out for me (it's weird that her earnest suggestion was so compelling). The doc there told me that wegener's does not involve the sinuses or nose! I knew the visit was worthless at that point but I decided I might as well try to educate her but I think she didn't listen to me. She blamed the nasal pain on a endoscopy a ENT weg specialist had performed a week and a half before (even though the pain started well after the endoscopy and was getting worse - not better with time). She seemed to even doubt that I had a diagnosis. People like this make me feel awful and insecure. I walked away feeling like the pain must be in my head.

I called my ENT the following Monday and he explained that pain does occur in the nose/sinuses with wegs. He was concerned that the doc would suggest that his endoscopy caused that kind of pain on that timeline. Obviously, the urgent care doc needs a refresher on vasculitis and wegs. It is so important to find docs that know what's going on. He's still confident in the treatment plan and I will see him again this summer to check in.

I'm sorry for the delayed reply. I checked in on my phone but had trouble logging in to reply. Please know that I read your replies and really appreciate your feedback!

[annekat]

These docs who think they know everything and actually know nothing are much more worrisome than our acquaintances who tell us we don't look sick or that we shouldn't be on steroids. Someone who doesn't read this forum could really be messed up by these docs!

[lag713]

The uninformed docs are dangerous because they can make the difference between getting the right treatment and getting better or getting the wrong treatment (or no treatment) and getting worse.

The family and friends that say we don't look sick and tell us not to take medications hurt our feelings more than anything else.

Why can't everyone just be awesome?

[Jaypfei]

Unfortunately lag713 you're always going to run into a few knuckle head Docs that aren't knowledgable enough to know their head from their foot, let alone everything about Wegs. As it's been said before, if you get a doc like that? Don't walk, run out of their office!

Most of us here probably have more knowledge and experience with Wegs than our own docs. We live with it day in and out. Glad that you didn't pay heed to that urgent care doc, and hopefully your meds will kick in and relieve your pain. I know others have expressed that warm packs help with the pain. I used to wear a hoodie to bed and pull across my face to help hold the heat pack in place. I've always maintained the Wegs face/headache is far worse than a migraine.
Hope you begin to feel better.