Fluctuating hearing loss. Please help

Hi eelstrebor, I also have fluctuating hearing so I can relate to what you are saying. I am completely deaf in my right ear (just had surgery for a cochlear implant last week) and have a profound hearing loss in my left ear. The fluctuation that I get in my left ear is a drop off in hearing, this can last for a matter of hours or sometimes days and can be very frustrating to say the least. I was referred to several ENT specialists over the years but no one could give me any clue as to what was causing this fluctuation. After some research I found a site about Menieres disease, ( I have tried to post the web site but it won’t let me. Just do a google search on Menieres Disease ) the symtoms of which seemed to match my problem exactly. This was confirmed by an ENT specialist earlier this year.

I have also just recently changed my hearing aid from an Oticon epoq to a Phonac Naida. I was convinced for the last several months that the epoq was not operating correctly, and also was not tuned correctly. It is extremely frustrating to try and explain to an audiologist what is happening when you have fluctuating hearing, they seem to be tied to the audiogram and are unable or unwilling to tune a hearing aid outside these parameters.

The Phonac Naida is a huge improvement on the epoq, mainly I think because the epoq was not working correctly, nor was it tuned correctly. Also it was at the limit of it range as well so was struggling to cope with my worsening hearing. The Naida seems to have a large enough range in the program to be able to allow me to function OK when my hearing is down.

From my experience I would suggest you check out the Menieres site. It may not be what you have and indeed, it probably isn’t much help because there is no treatment as far as I am aware. Also maybe see about changing your hearing aid and getting a program tuned in it for your changing hearing. If your audiologist can’t or won’t do this for you then keep looking until you find one that will. From my experience over the last 15 years or so, good audiologists are very hard to find and it is a very frustrating experience finding one. Not sure if this helps much.

Cheers
Neil

In answer to the questions: not a CIC.

An aid with a volume control or at least a remote control to set the level.

The two audiograms aren’t hugely different in real terms: especially when you consider all the possible aspects of testing deviation.

I’ve read several articles that say your hearing can fluctuate by as much as 10db from day to day or week to week. One article said that diet could make your hearing better or worse but didn’t go into much detail about what you should or shouldn’t eat. I’m still looking to see what foods are good and which aren’t.

@envee said:

Hi eelstrebor, I also have fluctuating hearing so I can relate to what you are saying. I am completely deaf in my right ear (just had surgery for a cochlear implant last week) and have a profound hearing loss in my left ear. The fluctuation that I get in my left ear is a drop off in hearing, this can last for a matter of hours or sometimes days and can be very frustrating to say the least. I was referred to several ENT specialists over the years but no one could give me any clue as to what was causing this fluctuation. After some research I found a site about Menieres disease, ( I have tried to post the web site but it won’t let me. Just do a google search on Menieres Disease ) the symtoms of which seemed to match my problem exactly. This was confirmed by an ENT specialist earlier this year.

I have also just recently changed my hearing aid from an Oticon epoq to a Phonac Naida. I was convinced for the last several months that the epoq was not operating correctly, and also was not tuned correctly. It is extremely frustrating to try and explain to an audiologist what is happening when you have fluctuating hearing, they seem to be tied to the audiogram and are unable or unwilling to tune a hearing aid outside these parameters.

The Phonac Naida is a huge improvement on the epoq, mainly I think because the epoq was not working correctly, nor was it tuned correctly. Also it was at the limit of it range as well so was struggling to cope with my worsening hearing. The Naida seems to have a large enough range in the program to be able to allow me to function OK when my hearing is down.

From my experience I would suggest you check out the Menieres site. It may not be what you have and indeed, it probably isn’t much help because there is no treatment as far as I am aware. Also maybe see about changing your hearing aid and getting a program tuned in it for your changing hearing. If your audiologist can’t or won’t do this for you then keep looking until you find one that will. From my experience over the last 15 years or so, good audiologists are very hard to find and it is a very frustrating experience finding one. Not sure if this helps much.

Cheers
Neil

I have the same problem and the surgeon who is taking my cholosteotoma out of my right ear on March 5th sent me to another specialist in Shands hosp. The fluctuation is from my eustacean tubes which are abnormal. I get frequent infections and I have constant fluid. My right ear drum has a hole from my having tubes for the 3rd time put in that never healed and If I sleep my right side fluid will run onto my pillow.
I went through sudden almost total hearing loss in both ears once then my left ear twice more in a matter of 6 months. Steroids brought it back twice the third time it brought my hearing back some. My left ear speech is so distorted I cant understand anything. After march 5th I will be basically deaf for the 3 months I cant wear an aid in that ear.