Posted , 7 users are following.
Hi, I am new to the forum. I have been diagnosed with Cochlea Hydrops, which my consultant tells me is a form of Meniere's disease, just without the vertigo. My main symptom is ear fullness (which can be painful at times) and distorted hearing I am just wondering if anyone else has had this particular version and what treatment they had. How successful was it? Many thanks.
0 likes, 22 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
monicamck daniel27500
Posted
I was wondering how you feel now Daniel? It has been nearly 4 years since I had fist symptoms similar to yours and still not sure of Meniere, SEH or anything else...
Thank you
Monica
daniel27500 monicamck
Posted
Hi Monica,
I have had a series of steroid injections in my bad ear, which has given some relief I would say but not completely. My main symptom is aural fullness which seems to be constant. Is that yours? Did you suffer from a loud noise going off in your ear in the past like I did? Do you have hypersensitive ears? I have done a lot of reading on the subject and been to see 2 ENT professors here in the UK who are top of their field. SEH symptoms such as ear fullness tend to be constant rather than Meniere's which apparently come and go so I have read......There is no cure for cochlea hydrops (or SEH which I think I have) currently and that is the first thing unfortunately to say. Also, I think every case is different and people's symptoms certainly differ. You can make your life easier and I can only speak for my own experience, but anxiety/stress feeds the condition. When I am relaxed I do feel better or involve myself with other activities such as work and exercise. Its important to try not to dwell on it too much. Also, I am trying a diuretic to see if that makes a difference. I wish you the best of luck.
monicamck daniel27500
Posted
Hi Daniel,
Thank you for your reply. I think the common factor is stress/anxiety... although I still have full ear and tinnitus all the time, when I'm on holiday I seem to cope better...but honestly what a frustrating condition
I do believe mine it is due to a really bad ear infection I have also suffered with sinusitis all my life. that's why im frustrated as with Meniere's is not much you can do but SEH is triggered by a different problem, I really want to get to the bottom of this problem 
Lately I felt dizzy as well, not full vertigo but I think by panicking that is going to develop into a full vertigo attack I made by situation worse. I've recentely had a blood test as I believe it may be a B12 deficiency ...I think every little problem that body struggles with it affects my ear ...I will go for another private ENT app in August but I don't have big expectations ... I always have the same answer (NHS or private) it can get better or it can go worse we do not know 
let me know if you feel any different after the diuretic please. Thank you, MOnica
marianne85813 daniel27500
Posted
Daniel, I was diagnosed with Cochlear Hydrops in June 2018 and my doctor recommended the steroid dexamethasone. I first took it orally, and within days, I was going nuts with no change and feeling awful from the steroid, that we decided to go ahead with the steroid injections into the middle ear. I'm on my 20th day post-op and the symptoms are still extremely severe with noise in my ear, fullness and sensitivity to noise (some voices, particularly my own)! I was told it could take up to 3 months after the Profusion to notice improvement. My quality of life has gone down 95% as I never leave my house now! I need someone to give me encouragement that this WILL get better!
monicamck marianne85813
Posted
My first symptoms 4 years ago were similar to yours...voices as in cartoons and my own voice squeaking in my head .that lasted about 6-7 months, you get used to tinnitus but you do loose hearing after that.In my case it is the low frequency, however last year was not too bad and my hearing actually recovered a bit as hearing tests showed better than the year before...this year was bad again with new symptoms (head stuffed with cotton wool ...migraines) I thought out that vision has to be checked regularly as related to ear migraine....saying that it can be worse than this people with Menieres suffer badly with vertigo and it is a disabling condition so im trying to stay positive and trying to control symptoms as much as I can ...Hope you get better, Monica
marianne85813 monicamck
Posted
Hi Monica,
Thanks for your comments to me! How exactly are you controlling symptoms....with low salt diet, or with some meds? I see my Otolaryngologist on August 3, 2018 and hoping the hearing tests indicate improvement! I'm taking the low salt, no caffeine or alcohol very seriously. It's scary to think this condition can come and go when you least expect it! My ear is a mess with the "spewing" sounds and the fullness. Also my own voice bothers me the most echoing in my ear! I've had migraines for the past 15 years real bad, but since the Cochlear Hydrops, they have been less frequent. Can't figure that one out!! Wishing you well thoughts! Let me know if you discover anything new. Marianne