Woke up with excruciating earache tonight.

[drz]

Went to ER as it felt like ear was about to burst. ER doctor looks in ear and says he sees no sign of infection. Ear drum not red or swollen. This is ear I lost all hearing in at start of Wegener's disease but now I am hearing loud buzzing and chirping sounds in it,like a swarm of insects The tinnitus had been relatively quite till tonight. I haven't felt anything generally in this ear since i lost the hearing a year ago.

Also just started a prophylactic antibiotic tonight a few hours early to try prevent me from developing pneumonia since I have lung damage already, am on prednisone and Immuran which makes me susceptible to getting another infection. Another family member is also being treated with antibiotic now for pneumonia and is complaining about pains in sinuses and head. I wonder if we might be sharing a similar infection since she also has low immunity due to lymphoma. The pulmonary doctor saw no evidence of pneumonia in my lungs on X ray or examination when he saw me earlier today. He said I might have bronchitis though and recommended the antibiotic.

But this ear ache is worst pain I have had in past year. He said I could be developing an infection but without seeing any evidence he was reluctant to start me on another or different antibiotic. This is another example of having to wait and see. He did suggest seeing ENT doctor this week if pain persisted and said it might look infected then. He also thought the pressure might somehow resolve itself and go away. I sure hope so and want it happen soon.

I took a tramadol pain bill and benadryl trying to get some sleep but it didn't give any relief from pain or help. I hear (probably feel) some strange movement or noise in throat or sinuses, but nasal passages are open. The doctor recommended gargle with warm salt water and hot packs which I have tried too. The doctor said it look like pressure on Eustachian tube was causing pain in ear and thought the cold that started last week might be cause. I did have a pentamide nebulizer treatment earlier today but don't think that has any relation to this earache since it hasn't caused any problems before.

After i got back home I checked for fever. None but then I got chills and teeth started chattering.

Has any one had any similar each aches?

[Sangye]

drz, pharyngitis, upper respiratory infection and chills are listed as side effects of pentamidine. Pharyngitis can cause your throat to swell and close off the eustachian tube. That prevents normal ear drainage. Your ears may look normal on exam but the extra fluid build-up can be excruciating. I had that a few times. It felt like someone pushed a knitting needle in my ears.

I'm wondering why your doc didn't increase your pred.

Also, the fact that you've tolerated pentamidine well in the past may not be important. Anyone can develop a sensitivity to a drug very quickly.

I hope you feel better very soon, whatever is the cause!

[gurinbasra]

drz, I feel for you! I lost all hearing out of my left ear 3 years ago but I've never had any other issues with it, even when I've had a Weggie flare that affected the other good ear. I wouldn't be surprised if like what Sangye said, there is an infection and you should take the advice to see an ENT dr - perhaps one that's familiar with your Weggie history. I always think that for those of us with hearing loss, it's so important to have a good ENT dr who can determine the cause of the problem being either an infection or a Weggie flare (which is usually followed by an infection!)

Keep popping the pain killers and hang in there.

[gurinbasra]

Oh, just had to add, that's another good point Sangye made, I know from experience that if the antibiotics don't work, see what happens with an increase of Pred - that'll be your answer. Happened to me back in 2009, all the antibiotics in the world didn't help, and then as if magically, my ENT increased the Pred and within days, I felt better and better.

[Chris G]

Drz-
I've had this experience as well. It happened after months of eustachian tube dysfunction. I had fluid build-up behind the ear drum, and fluid througout my mastoid bone. Strangely, that day, and a few days prior, my ear hadn't really been bothering me much, except for the fact that the hearing was impared on that side. The "attack" came on suddenly, at bedtime. I still have trouble describing it......it was excruciating - it literally seemed violent. It was like there were tiny little hands inside, squeezing and twisting my ear canal - it went on all night. There were horrible screaching and pulsing noises. Then the ear drum perforated, and fluid began pouring out (yes it was gross, sorry). I had extra strength vicodin and darvocet on hand. I took some of each - as many as I dared, and got no relief at all. Halfway through the night, I couldn't even touch the outside of my ear without causing more pain. I was up all night, mostly crying from the pain. The next day was my first appt with my new rheumys, that had been booked for 6 weeks. The pain was so great that, although my husband had just had knee surgery the day before (left knee), I had to ask him to drive me to my appointment. I could barely hold my head up. We were quite a sight that day.

I've had ear infections before. There's no comparison - this was altogether different.

[Jack]

The eustation tube trouble that I have becomes much worse and turns to ear ache when I try to lower my Pred dose. In a similar way, if it starts to bother me more than usual I know that a short period of increased steroids will get me through. This is a very rare situation for me so is a viable form of treatment, but it would not do in the longer term.

[chrisTIn@]

Sure hope you find the cause of your earache drz, and the way to treat it best.
Good luck, hold on!

[drz]

Drz-
I've had this experience as well. It happened after months of eustachian tube dysfunction. I had fluid build-up behind the ear drum, and fluid througout my mastoid bone. Strangely, that day, and a few days prior, my ear hadn't really been bothering me much, except for the fact that the hearing was impared on that side. The "attack" came on suddenly, at bedtime. I still have trouble describing it......it was excruciating - it literally seemed violent. It was like there were tiny little hands inside, squeezing and twisting my ear canal - it went on all night. There were horrible screaching and pulsing noises. Then the ear drum perforated, and fluid began pouring out (yes it was gross, sorry). I had extra strength vicodin and darvocet on hand. I took some of each - as many as I dared, and got no relief at all. Halfway through the night, I couldn't even touch the outside of my ear without causing more pain. I was up all night, mostly crying from the pain. The next day was my first appt with my new rheumys, that had been booked for 6 weeks. The pain was so great that, although my husband had just had knee surgery the day before (left knee), I had to ask him to drive me to my appointment. I could barely hold my head up. We were quite a sight that day.

I've had ear infections before. There's no comparison - this was altogether different.

Thanks for writing up my story so well.

Three hours after I got back from ER the ear drum burst and drainage began. It was clear sticky stuff at first but evolved into ugly bloody junk that indicated an infection. My ENT of long standing who has seen me over a hundred times due to my history of ear infections and surgeries saw me this morning and sucked out the infection. That also hurt like H--l but it feel much better almost immediately. He order some antibiotic drops to put into ear through new hole in my ear drum. He also gave me a prescription for numbing ear drops but told me to wait a day before filling it since he doubted I would need them. He was right and I finally got some sleep after lunch. The ear is still draining but the pressure is gone along with most of the pain so I feel much better. The ENT thought the infection came from blocked Eustachian tube from the cold I caught. He said most of the people he has seen with Wegener's have perforated septums and Saddle Noses but I was lucky to not have any sign of that yet.

The past year has not been any picnic but this pain was off the chart. I rated it a 12 on scale on 1-10. The noises before it burst sounded like my sinuses were cracking. I have great empathy for anymore who has had to suffer through such an experience. Thanks to all who shared.

As an aside the lung doctor I saw yesterday thought I might be able to get off the pentamadine since my prednisone has been tapered to under 10 mg at present and I am off the Cytoxan. I will discuss this at my next rheumatologist appointment.

I asked the ER doctor if he could guarantee that my ear drum would not burst. He said he didn't think it would but he couldn't guarantee it. He hedged and recommended I go back to my ENT doctor if pain persisted and said it might very well be infected at that time. I don't know if many doctors would have lanced the ear drum to relieve the pressure before it broke and that is only ting that could be done to relieve the pain.

[Sangye]

Yeech, so glad you got relief drz! I hope it heals up quickly.

[Jack]

Horror stories! I hope mine does not turn into something as bad. I've never imagined before that a cold could cause such problems!