#1

Does anyone here have Meniere’s disease? I have been losing my hearing over the last 10yrs until I had to get aids to help with understanding speech better. I got the Oticon Agil Pro’s last year and love them. It took several months to get me where I needed to be to hear well with the aids. I started having small episodes of vertigo and didnt think much about it but the last two lasted 4-5 hours and I couldnt move much because of the nausea. It was terrible so I went to my doctor and he sent me to a neurologist first to make sure it wasnt brain related and the neurologist said he thinks I have Meniere’s disease and wants me to go to and ENT to get help. So next stop is an ENT. My hearing seems to be getting worse also so I think Im going to have to get the Agils reajusted.

#2

Here is a link for more information.

http://www.dailystrength.org/c/Menieres-Disease/support-group

Yes, I was diagnosed with it last year. i first noticed a significant loss of hearing in my one ear. Before I could go to an ENT doctor, I had my first attack. Started with severe nausea and dizzyness. Began to throw up and couldn’t stop. Had to lay down for 3 hours before it got better. In the next 3 weeks, had 4 more similar episodes. The doctor put me on a low sodium diet. Symptoms went mostly away until last month when they returned. When I walk, I continue to be unbalanced and lean to one side. When I feel like an attack coming on, I look long distance, similar to what you do when you are seasick. That helps in keeping the attack from developing. Doctor said the episodes can occur at any time without warning. He said one remedy is to have your balancing nerve cut. But, that would seem to be a desperate move. They think the cause is fluid developing in the inner ear which puts pressure on the balancing nerve that runs though the ear.
It’s a terrible disease which usually results in hearing loss. I’m now deaf in one ear.

#3

Thanks for the link and I hope things settle down for you.

#4

Generally, I’ve had a good experience with the Spice and BICROS aids. It took a couple of months to get them to my liking. I have the BICROS volume set 4db higher than the Spice aid. I was having trouble hearing people in the car, since I am deaf on the right side. The additional microphones in the BICROS helps. I went with the Spice V, since some of the features of the IX model are not usable with the BICROS set up.

#5

I have bilateral Meniere’s which was diagnosed in 1996. Fortunately, I have not had very many severe episodes of vertigo but have had frequent minor episodes of just feeling off balance with associated hearing fluctuations, lots of “fullness” and fairly loud tinnitis. Unfortunately, since I didn’t have the vertigo, my hearing loss in the first ear affected was pretty advanced by the time I was diagnosed and took dietary steps to try and control things as much as possible. The hearing loss in that ear advanced significantly in less than a year. Within a year after that, my other ear was affected but the loss in that one has not been nearly as bad. I tried a hearing aid in the bad ear about 10 years ago and it did not work out well; in fact seemed to make everything worse since it tended to just amplify everything, making it harder to understand things and hear with my “good” ear. Now because of the combination of better aid technology and my “good” ear getting worse, I’m trying aids in both ears. I’m about six weeks into trials and am trying both Starkey and Phonak. Thankfully, this time around they are helping a lot. After an adjustment this morning, I turned on the classical music radio station, heard music in stereo for the first time in years and just burst into tears of joy. I still don’t really have understandable speech in the bad ear but some sound is getting through and the good ear aid is helping significantly. Sorry for the long story on my experience.

For you, I would advise a few things. First, don’t delay seeing someone to either confirm or rule out Meniere’s. Second, if at all possible, see if you can find an ENT or otologist who specializes in vestibular disorders. Meniere’s, especially if you’re having major vertigo problems, can be very difficult to deal with. Even if there is no treatment, a physician who is very familiar with its effects can help you a great deal in coping. Third, if you do have Meniere’s, be prepared for the hearing assistance your aids have been giving you to maybe become a bit more complicated. Given that, it will be very important to find an audiologist or dispenser who is ready and willing to spend time fine tuning things. Lots of factors like recruitment and hearing fluctuations come into play. Also, I’ve had a bit of trouble finding the best item (various cones or custom molds) to convey sound to my ear. Not sure that’s the right phrase but what I mean is that with my loss, I’m really borderline for any kind of dome. On the other hand, if I use the custom ear molds or even power domes, I go nuts with the “plugged in” feeling because that sense of fullness is one of the problems with Meniere’s in the first place.

So…lots of luck. Hang in there and if you ever want to PM me, feel free to do so.

#6

Hopeful1 thanks so much for the information. Im set up to see my audiologist on Monday to get an adjustment and to tell her about my vertigo problems and hopefully see the ENT next week also. This is why I love forums because you get first hand information and support. :cool:

#7

I was a sufferer of Meniers for many years… Now burned out (touch wood) it took most of my residual hearing with it though :mad:

I can recall once, when my Meniers was at it’s height; going into a Bar for a drink, it was a fairly long bar and it was very quiet, the barman had kept a close eye on my approach, when I asked for a pint he said I was drunk and refused point blank to serve me… I was stone cold sober:D

Cheers Kev

#8

Statos - just wondering if you’ve been back to your audi and to the ENT and how you’re doing?