Ringing in the ears

[Tom]

Sure wish I could put a volume control on this ringing in the ears. I know theres some meds that will help it. Ive talked to the Dr about it last year and he didnt think that the meds would cause it. Seems to me I read that wegeners can have that effect. I asked the wife one evenening if she could hear the ringing? When I told her that I had ringing in the ears and its loud, I thought maybe she could hear it! She just rolled her eyes. Its loud and constant. I'll have to make it a focal point at my next appointment.

[me2]

After all these years of WGs and medications I now have ringing in my right ear. I have two relatives who have ringing and no wgs and no meds- so , I'm thinking figuring out the cause is a bit of a moot point. Its not like I did all this stuff for recreation. So far I have not heard of a solution that really works for this, my hearing Dr said to not believe all the 'miracle cures' out there. It doesn't mean I wouldn't try something safe.

[Pete]

I've had tinnitus (ringing in my ears) for probably about 15 years. It's probably the cumulative effect of exposure to excessive noise - in my case, the Army rifle ranges and artillery without hearing protection, a few really loud concerts, and learning to fly airplanes without wearing a headset. It's gotten progressively worse over the years (I'm 66). I wear hearing aids and they seem to help a little. GPA pretty much clobbered the hearing in my right ear, but I manage ok except in places where there's a lot of background noise.

Tinnitus is nerve damage within the ear. It's irreversible.

[annekat]

I have hearing loss due to Wegener's, some of which is neurosensory and some of which is conductive. I have hearing aids. I've had various types of tinnitus that come and go. The weirdest ones started 10 years before being dx'ed and have now subsided. The one ear with the nerve damage has a hissing noise that is constant and I'm sure will never go away. The other tinnitus is mainly a rushing or roaring noise that seems to increase with other Wegs symptoms, as in during a flare, and is presently not happening. In my case, I don't get the feeling it's caused by the meds, and in fact, they can help the part of it that comes and goes. It seems like tinnitus and hearing problems are all over the map with this disease!

[drz]

My tinnitus was also variable but seem to become less of a problem after I got my BAHA (old name). Doctors told me my brain was creating noise due to lack of stimulation from the loss of hearing in right ear. Besides the ringing and humming I used to hear what sounded like radio noise of garbled stations or people talking somewhere in the distance so I couldn't make any of it out. I already had serious hearing loss in left ear from many ear infections. Now that I hear more normal sounds most of the time the other noises seem less distracting but they still do occur at times.

[Dirty Don]

Doctors told me my brain was creating noise due to lack of stimulation from the loss of hearing in right ear.

What? I have never heard of that. While it is physically possible, it is highly unlikely that the brain would compensate for something that isn't existing (hearing loss). No one knows where tinnitus comes from or how to 'cure' it...there are remedies that say they can, but to my knowledge there is nothing that makes it go away. I have it in both ears, in one continuously...it appears to be related to the WG, but no one knows. My E tube is enlarged so who knows what's going on there...my ENT sure didn't!! C'mon...your brain making noises so your ear feels more included...hmmmmmm...need more coffee I guess for that one!

[mishb]

I have had meniere's disease for about 20 years.
The ringing in my ears is constant but no longer annoying.
Most times it's only a faint buzz or ring but sometimes it is very loud and then annoying.

When it is very loud my daughter always comments with - it's just your brain trying to repair itself......and failing

It's actually caused by the lack of sound due to gradual hearing loss and therefore the brain is inclined to produce it's own sounds to replace to frequencies that are missing.

Oh well, there is no hope for us

[Dirty Don]

Really! OK, small consensus does it to me again...and I thought I knew it all!!! LOL!

[drz]

Really! OK, small consensus does it to me again...and I thought I knew it all!!! LOL!

OK Don, that is why we are all here--right? -- to pool our ignorance.

Are the golf links getting hot yet with spring coming? Soon the snow birds will be returning to the lake country up north.

[Dirty Don]

The sun is out, in the mid 70s, golf is great...but the snowbirds are still here...way it is! Good news is, aside from being able to golf reasonably well again, I seem to have WG under control as I'm feeling as well as I've felt in about 3 years. Is what it is and I remain wary, but am tapering slowly with good effects. I have lost my rheumy at Mayo (she's retiring - good on her but brings my anxiety button out front!), but they have another 'expert' in vasculitis there, so I think I'm gonna be OK about it.