View Full Version : Ears and Hearing Loss and Tinnitus

03-29-2009, 02:47 PM
Hello Everyone:

This is only my third time posting on this site. I have read through quite a few of peoples stories on here.

I was wondering if anyone else has had any hearing loss and tinnitus (ringing in ears).

Please let me know. I am very interested to hear peoples stories regarding certain aspects of WG. It is such a rare disease but can show its face in so many different ways for many different people.

My hearing loss is sensori-neural. My left ear is totally dead while my right ear has 75% loss. My tinnitus is also quite bad, especially in my left ear.

I'll appreciate any feedback I can get on this.

Thanks again everyone,
Phil Berggren
Swift Current, SK

03-29-2009, 03:33 PM
Hi again, I had hearing loss early on in my diagnosis, 35% loss in left ear and 75 in right. Then about 1 year later I got tinnitus in my left ear. I have it now for over a year. bummer I know, but if that is the worst of this disease, I can live with that. I can only think that since I am so swollen, the inside my middle ear is swallen as well. Wheter it clears up when I get off prednisone I don't know. I am still on 40mg and slowly tapering now . Las time when I reached 5.5 I had a bad flare up and back on chemo and 60 pred.
For tinnitus, have ambient noise arround you at all times and you will not hear the ringing. I also went to see what it would be like with a hearing aide and the ringing was substantially gone. I didn't get one since it doesn't bother me that much.

03-29-2009, 04:21 PM
Yes, I have had Tinnitus and hearing loss for many years. The hearing loss appears to be caused by fluid in my inner ear because it sometimes "glugs" and I can hear well again, but only for a few seconds. I have also had blocked tear drain ducts and lots of sinus problems which are probably all related.

I once saw an ENT consultant about it, but after all the examinations and poking around in my ears, I could hear fine when it came to the hearing assessment. The outcome was that we decided that the risks of intervention outweighed the benefits due to all my other health problems.

03-29-2009, 07:54 PM
I've noticed a drop in my hearing of late. I'm not sure whether it's the iPod or something to do with the disease. The volume is never that loud so could be related. I'm going to ask the doc about it in my next appointment. Ditto also on the tinnitus but, like Jola, it don't bother me none.

03-29-2009, 10:50 PM
Luckily my Grandmother Gave me $5,500.00 so I could get hearing aids back in June of 2005. Even with the hearing aids the tinnitus bothers me sometimes to the point where I wish I didn't have ears. Usually the hearing aids help mask the tinnitus and headphones help too sometimes.

03-30-2009, 12:05 AM
I wonder if those of you with chronic fluid in the ears and sinuses might benefit from "ear candling." It's a very safe, easy thing to do. I can't imagine that it would interfere with the Wegs or the drugs, and even if you have damage in these areas, it wouldn't aggravate it. Use plain beeswax candles (no herbs).

You can Google "ear candles" and get info. There's everything from instructions to do it, to some pretty wild claims, to some pretty scary claims. I used or recommended ear candles with patients (including infants) for ear infections, fluid, etc.... Nothing fancier than that. They were often successful in resolving those issues, and I never heard of any problems.

I've always had crazy good hearing and candled my ears once just to know what it felt like. I couldn't believe how much better I could hear afterwards, since I didn't expect anything.

Anyway, maybe worth a try.

03-30-2009, 12:40 AM
MMMMM - Hopi ear candles feel fantastic!
I don't really have sinus involvement except having to blow my nose good and hard every morning, but when I do this my right ear goes almost deaf for most of the morning. I've had problems with this ear before and suffered from infections and eczema in there so used to use Hopi ear candles. You lie on your side on the floor with your head on a pillow and ask some kind person to insert this thin candle into your ear and light it. As it burns it gently sucks all the goo from your ear and is very relaxing.

03-30-2009, 10:59 AM
Yeah! You see how much comes out, and you wonder if you ever cleaned your ears! Safer than sticking something in it, too, and I suspect the chances of infections equals zero, whereas sticking a Q-tip or something in your ear to clean it surely irritates it (or has that potential).

04-25-2009, 08:27 PM
I had complete hearing loss in one ear and limited use out of the other for a bit. Also prone to ear infections. I have had 3 of them in the last 6 months. As for ringing in the ears, I have had that for years.

04-26-2009, 12:14 PM
I have mine since last may, it just never goes away, at least i can still hear.

04-27-2009, 11:16 AM
My Mother complained of a ticking in her head for three months prior to being diagnosed. Now she talks at a lower tone. We have not seen an Ear, Nose, Throat specialist. Just diagnosed 3 weeks ago.