Does Anyone Have Cochlear Hydrops? Need to Know What to Expect.

[Jkph75]

Went to a ENT PA today. He thinks I have Cochlear Hydrops but he can't officially diagnose me with it b/c I don't have a previous hearing test on file and today's was normal. Can anyone tell me what I can expect with this disease?

 

[danni1979]

Hi,could you tell me what your symptoms are pls?? I had 2 horrible episodes which sounded like cochlear hydrops nut i saw my ent yest and mybhearing tets came back normal as well so he dismissed it.Thanks x

 

[tniuf]

Hi guys, my tinnitus is because of Cochlear Hydrops. There's relatively little information on the internet about it. I was wondering if anyone knows 1) how common are cochlear hydrops in humans? and 2) do they ever get away/fixed?
Thanks

 

[glynis]

Crystals on the hair cells in the cochlear causes inner ear problems like Labyrinthitus and Menieres and causes tinnitus and balance problems as the tiny hairs don't move as they should.
Hydrops is quite common like
Labyrinthitus that can go away and might only get one or two attacks but for Menieres it becomes a progressive disease ....lots of love glynis

 

[Yvonne langridge]

I have had Cochlear hydrops for at least 20 years, stating about when I was 40. Starting with left ear the tinnitus increased with the hearing loss. The hydrops moved into my right ear about 5 years ago and with it some tinnitus but a long of ear discomfort. As the left ear is so deaf, I have been able to monitor the severe hearing loss bouts that have left me for short periods of time, very deaf and in some cases without being about to hear voices over a phone, differentiate a song until I heard the words...

After a series of high salt intake meals I realized that this was the cause of my hearing loss. In saying that is has been many years and a real process of elimination. This year I heard there is a world renown researcher/ practicing ENT close and after a meeting he confirmed my finding of high salt intake causing my hearing problems.

I have since virtually removed the likes of cheese (yep the biggy) chips, salted nuts, crackers, soups with stock, gravy and almost all sauces, salami, bacon and ham - oh and liquorice- and for some time I have been bout free. The ENT also gave me a 'morning after' diuretic for when dining out salt gets applied to dishes that I cannot taste .

I still drink wine and have coffee (a diuretic) thank goodness as a salt reduced diet is dreadfully boring. I still eat low salt bread and cereal, as I feel I should still get some salt into my diet. I have become a labels reader, but what's most important is the salt per 100g. 100g of soup is a very small bowl of soup so you end up eating quite a bit of salt in a large bowl of soup, and when you each cheese you eat chunks at a time.

The ear pressure can be quite painful and this has also gone with the change in diet. I also had to put to bed the reasoning that my hearing loss was stress related, but in fact it was what I was eating when stressed! My hearing loss was usually after the weekend, again, that was when I ate the chips, nuts cheeses. I have been down the weather, barometric pressure, you name it track, but now, for me I can nail the cause, and thankfully manage it.

I have never had a Menieres attack, I do not suffer from nausea, vomiting or vertigo. Chochlear hydrops is quite a rare condition, and does take several trips to the audiologist to identify the hearing fluctuations.

The plus side, I have lost 6kg in 4 months, and still dropping!

If you are new to Cochlear hydrops, then consider seriously what your ENT is telling you, and look at what you are eating. I am profoundly deaf in my left ear even with a hearing aid, and now need a hearing aid for my right ear. Until I nailed the cause I was heading down the track of a cochlear transplant in a few years, just so I could continue working. Oh I wish I knew what I know now 20 years ago....

 

[Redhen]

Thanks Yvonne. I am sorry you have suffered for so long with Cochlear Hydrops. It has only been four years for me but I recognise what you have gone through. I too thought that my ear problems were down to stress, playing the accordion (!), ETD etc, even though Cochlear Hydrops was diagnosed on my first visit to ENT three years ago. As the condition is quite rare it is difficult to find information on it. It is really reassuring to know that you have never had a full Menieres attack. Neither have I.

I was diagnosed with CH at my first visit to ENT because of ear fullness and reactive, fluctuating tinnitus accompanied by low frequency hearing loss. I was prescribed Betahistine but only took it for a week because it upset my stomach. By the time of my second visit to ENT my hearing had returned to normal and I was discharged. I am now on a low dose of Betahistine (6 months of 3 x 8mg). Even though it is thought to be a placebo, I think it helps somewhat. I have mild low frequency hearing loss in both ears, with some sound distortion, but hearing conversation is mostly OK.

For me tinnitus is the worst thing. I have a few days where it is not too bad and then a week or so where it drives me nuts. Keeping very busy with complex and creative tasks, with the radio on for background noise helps greatly. And if the tinnitus gets too much I go to the city or out in the car as traffic noise is a great tinnitus masker for me.

Diet and caffeine: I have tried to keep my salt intake down but will take your advice and look into it a bit more. I am currently trying to reduce coffee to a couple of small cups a day.

Thanks again, and I hope you continue to find relief through changes to your diet.

 

[Jkph75]

Thank you guys so much for responding. You have provided some good information. The latest they have told me is that they believe that I had vestibular neuritis or labyrintitis. Technically, do not have any hearing loss. The 8+ hearing tests they have given me in the past 5 months show a reverse ski slope in the normal range. I have not had any great fluctuations in hearing. Now they are just telling me that I might get Meniere's one day or maybe not. That is a wonderful way to live. I have lowered my salt intake cut out caffeine and chocolate. I just hope that I can prevent things from getting worse.

 

[GregCA]

I have been misdiagnosed as having CH originally. It turns out it was otosclerosis.

 

[Yvonne langridge]

Hi again...

I really feel for everyone that is struggling with trying to get a firm diagnosis, the continual hearing tests with the ENT saying it could be this or it could be that, so try this, maybe this will work Over the years I have researched and researched hoping something would help me, hearing of other people's heartaches and possible causes.

If this helps? My partner has Menieres and although we have both suffered hearing loss, we present quite different symptoms. When I have a CH attack, my hearing loss (without a diuretic) is considerable and takes many days, probably a couple of weeks to come back fully. My partners Menieres attacks which are very debilitating, are much more short lived, and once over it, he is back to normal within hours. You will know if you have Menieres... Trust me! If ever you have had a middle ear infection, then you will know what Menieres is like... But worse.

There are a couple of drivers of tinnitus, the main one is hearing loss. The second is caused by external influences. With CH, coffee is great for me, it is a diuretic and improves the effect by reducing the salt in my system, but wine, and more so with red wine, now thats certainty....... The causes are really personal I think that's why they get you to give up a large range of things and try to get each person to reintroduce and find the drivers. But chocolate, no affect on tinnitus for me thank goodness, and I still drink wine every weekend knowing the tinnitus will be worse, but hey, a very low salt dieter needs to have some fun!

I am also in a group for learning sign language, and of the group there are several with very accelerated hearing loss, and with a couple it is a hereditary problem but they do not suffer from hearing fluctuations or vomiting. We all have really bad tinnitus and we all deal with it in various ways. Like some in this blog, it is their biggest complaint. The noise keeps them awake, and distorts what they hear, and even suffer from depression, so the group is a great help for them.

 

[Melbob]

I have had Cochlear hydrops for at least 20 years, stating about when I was 40. Starting with left ear the tinnitus increased with the hearing loss. The hydrops moved into my right ear about 5 years ago and with it some tinnitus but a long of ear discomfort. As the left ear is so deaf, I have been able to monitor the severe hearing loss bouts that have left me for short periods of time, very deaf and in some cases without being about to hear voices over a phone, differentiate a song until I heard the words...

After a series of high salt intake meals I realized that this was the cause of my hearing loss. In saying that is has been many years and a real process of elimination. This year I heard there is a world renown researcher/ practicing ENT close and after a meeting he confirmed my finding of high salt intake causing my hearing problems.

I have since virtually removed the likes of cheese (yep the biggy) chips, salted nuts, crackers, soups with stock, gravy and almost all sauces, salami, bacon and ham - oh and liquorice- and for some time I have been bout free. The ENT also gave me a 'morning after' diuretic for when dining out salt gets applied to dishes that I cannot taste .

I still drink wine and have coffee (a diuretic) thank goodness as a salt reduced diet is dreadfully boring. I still eat low salt bread and cereal, as I feel I should still get some salt into my diet. I have become a labels reader, but what's most important is the salt per 100g. 100g of soup is a very small bowl of soup so you end up eating quite a bit of salt in a large bowl of soup, and when you each cheese you eat chunks at a time.

The ear pressure can be quite painful and this has also gone with the change in diet. I also had to put to bed the reasoning that my hearing loss was stress related, but in fact it was what I was eating when stressed! My hearing loss was usually after the weekend, again, that was when I ate the chips, nuts cheeses. I have been down the weather, barometric pressure, you name it track, but now, for me I can nail the cause, and thankfully manage it.

I have never had a Menieres attack, I do not suffer from nausea, vomiting or vertigo. Chochlear hydrops is quite a rare condition, and does take several trips to the audiologist to identify the hearing fluctuations.

The plus side, I have lost 6kg in 4 months, and still dropping!

If you are new to Cochlear hydrops, then consider seriously what your ENT is telling you, and look at what you are eating. I am profoundly deaf in my left ear even with a hearing aid, and now need a hearing aid for my right ear. Until I nailed the cause I was heading down the track of a cochlear transplant in a few years, just so I could continue working. Oh I wish I knew what I know now 20 years ago....

 

[Melbob]

Yvonne, when you say you have been "bout-free," does that include no tinnitus? And how long on that diet before you felt better? Thanks so much.

 

[Cazza]

Hi everyone - found this forum as a bit of a surprise, just had a referral to an ENT specialist for what I assumed was a case of "glue ear" but he believes it's not that and may be CH instead Have to admit I was so taken aback, I asked no questions and now await an MRI to clarify/rule out anything else. Strangely, my sister had a bout of full blown Menieres last year and lost the hearing in one ear. Bit spooky if it turns out I do have CH! I did have a hearing test, but the results meant nothing to me - it was the tuning fork test that surprised the specialist. I'll keep my eye on this forum and if the diagnosis is confirmed, will be following the dietary advice above. Thanks.