Ear Pain

[sadpixie]

I am currently waiting on my rheumy to decide on which meds he thinks would benefit me most so I am only on pred at the moment. My main presenting symptoms and the part that bothers me the most currently is my ears. Prior to diagnosis I had an ear tube put in my right ear, a mastoidectomy on my right ear and a myringotomy with no tube done on my left ear. (This all since Nov 15th).
I have ear pain throughout the day that is so intense that it brings me to tears. I have been prescribed pain meds but they don't even touch the pain. Generally the pred seems to help for about 12 hours and then the pain ramps up. Any tips on how to cope with this while I am waiting to start treatment?

[Sangye]

Assuming it's caused by Wegs, the only thing that will get the pain under control is proper treatment. Pred alone won't do it, as you know. They need to get you started on an immunosuppresant. What's the holdup with your doc? This shouldn't wait-- it can damage your hearing permanently.

[sadpixie]

He wanted to retest my liver enzymes off antibiotics for a week hoping they will have gone down some and get in touch with a specialist. I already have permanent loss in the ear with the tube.

[Sangye]

Oh, that's right. It's hard to remember all the info for new members.

[Jack]

Ear pain is one of the things that prevents me from reducing my pred to to less than 10mg in spite of not having Wegener's symptoms for around 20 years. I also have blocked Eustation tubes and Tinnitus. I wish I knew the answer apart from the high pred dose.

I think that for most, this would start the alarm bells ringing as a warning of a Wegener's flare, but for me it seems to be a more permanent condition.

[marta]

Sad pixie, that was what made me go out and seek diagnosis. The crazy, intense, out of this world ear pain. I couldn't handle it. I too had tubes put in and the pain only got worse after the tubes went in. They wanted me to go on pred to help the pain, and I had a bad feeling about it, and didn't do it... in hindsight I think that was a good thing because it made me seek diagnosis and therefore start treatment sooner. Within days of starting the treatment, the pain subsided and I got to get off the morphine (which is how they were controlling the pain in the hospital). Within days. It happened again with th is flare. I still have a little pain but nothing compared to when I went to the hospital. Press for a diagnosis and treatment. I totally understand what's going on with you with the liver cuz I'm in exactly the same boat. Exactly. I had to push for treatment because I could feel this ugly thing doing it's IT'S ugly thing inside me.

Best of luck, and I hope your pain goes away soon. It's the absolute worst.

[Thakator]

Having pc trouble this morning, so don't know if this will get out, but I'm curious about ear pain so I shall try. Given the wide-ranging natue of the types of pain we have collectively experienced in our WG adventures, from one part of the body to another, I'd not be surprised if any heretofore undiagnosed cause of seemingly "odd" pains were actually the results of those adventures. So, regarding ear pain (aside from that deep-seated one which makes you want to tear your head off) has anyone experienced either of these - - a sudden and severe pain that shoots straight down the ear canal much as would be the case if someone were to drive a spike in there or pain in the earlobe such as would be felt if someone were to clamp onto it with a pair of pliers and then to squeeze them with all their might? Just curious.

[Jack]

I've experienced nothing like that, just the usual inner ear pain that will be familiar to most people from some time in their lives.

[malin]

my main symptoms were in my ears, with incredible, out of this world, almost driving me to suicide (for real) pain. I somehow managed to put up with it for over 4-6 months before getting my diagnosis and proper treatment. I did loose some of my hearing permanently.

As for how to deal with it? I didn't. Nothing helped, I was on amazingly strong painkillers and god knows what but nothing in this world stopped the pain until I had started proper treatment with MTX, pred and bactrim.

Thakator: I have and still do sometimes experience the sudden, severe pain that you describe, not at all often now but in the begining I had it ALOT :/

[marta]

Me too. The shooters is what I called them. I told the docs that my constant pain was at about 7 to 8 out of 10 and the shooters were 10+. Insane pain. I've told them that it was way worse than giving birth. I'd give birth to 5 babies at once rather than have this going on indefinitely. I feel like there were two origins of the pain. One from the ears and one from the sinuses, and they both had their own distinct feel and their own distinct shooters. My hearing is terrible now as well. It seemed to come back quite a bit after initial diagnosis but with this flare has gone to the dogs. I'm hoping it comes back again when things get under control. The pain definitely subsides with treatment. I still get the odd shot, but it's nothing I can't handle, whereas when it's doing it's thing full on, I can't handle that very well.

[Thakator]

Thank you each for the feedback. Shooters, yes, that gets it, Marta. Just as you describe. Mine too are now much less with treatment. They used to come other places in me as well, notably in the lungs (which is where my WG was finally found via biopsy). I also often had them through the temples and even straight up the rectum - - those were definately 10+ shooters and made me realize just how incredably dastardly Vlad the Impaler must have been back in the Middle Ages or whenever it was that he terrorized his subjects. Ron