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  • question (hearing) for menieres and cochlear hydrops sufferers

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    Old 03-04-2016, 11:42 AM   #1
    Danni1979
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    question (hearing) for menieres and cochlear hydrops sufferers

    Hi
    I am.very worried i may have hydrops,i had my first sudden fullness aural (no hearing loss but sudden aural fullness,tinnitus & sound distortion)episode 2 months ago and again on tues.Today i had a audiogram at which my hearing showed normal,the ent said it shows i dont have either of the above conditions,from your experiance is this correct??
    Many thanks

     
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    Old 03-11-2016, 09:27 PM   #2
    hellodrops
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    Re: question (hearing) for menieres and cochlear hydrops sufferers

    Not necessarily correct. Search "Dr Timothy Hain" and "Hydrops" on your favorite search engine and you will start finding much information that many ENTs don't seem to know. While waiting for a diagnosis, I have been doing a lot of research and have now put myself on a Hydrops diet, even though it is questionable whether I am actually suffering a hearing loss. My stuff has been going on since late last July, and two ENTs (both Mayo graduates) I have been to have not yet mentioned Hydrops--even though my own research is now telling me that is what I've got. I intend to inform my second ENT on the 15th that I have begun a hydrops diet--and see what he says to that.

     
    Old 03-12-2016, 05:25 AM   #3
    Danni1979
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    Re: question (hearing) for menieres and cochlear hydrops sufferers

    Quote:
    Originally Posted by hellodrops View Post
    Not necessarily correct. Search "Dr Timothy Hain" and "Hydrops" on your favorite search engine and you will start finding much information that many ENTs don't seem to know. While waiting for a diagnosis, I have been doing a lot of research and have now put myself on a Hydrops diet, even though it is questionable whether I am actually suffering a hearing loss. My stuff has been going on since late last July, and two ENTs (both Mayo graduates) I have been to have not yet mentioned Hydrops--even though my own research is now telling me that is what I've got. I intend to inform my second ENT on the 15th that I have begun a hydrops diet--and see what he says to that.
    Ok thankyou what are your symptoms pls??

     
    Old 03-12-2016, 09:48 AM   #4
    hellodrops
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    Re: question (hearing) for menieres and cochlear hydrops sufferers

    History and symptoms: Late July of 2015 I developed a scratchy throat and drippy sinus issues and
    1) Food allergy: I suddenly became allergic to diet yogurt (I threw up, and continue to get nauseous if I even smell the container of diet Activia that my wife continues to eat).
    2) Flucuating, but virtually always present feeling of FULLNESS IN EARS--more so in right ear than left. (A day or two after the first Yogurt incident, my doctor put me on an antibiotic and anti-inflammatory for the sore throat and sinus. As I finished the medication, my ears were feeling swollen inside. (I now refer to this as the feeling of fullness, as that seems to be the more common description). I believe it was September that the ENT put a tube in my right ear: I elected not to put a tube in left ear, as I had no previous history of problems with it, and current problem was not as severe as with right ear--which has had a history of problems and surgeries.
    3) Nauseousness and dizziness. (This persisted after the ENT had put a tube in my right ear). I was constantly feeling dizzy (like standing up in a row boat--slight rocking feeling) and feeling nauseous, like motion sickness. My nauseousness has mostly gone away since learning about and using the Epley Maneuver. (There are excellent online video clips on how to do this, and on understanding how it works, for those whose dizziness is caused by displaced crystals in the ear. In my case, I believe I actually substantially corrected the nauseousness myself with a crude version of the Epley maneuver by hanging my head over the side of the bed for a minute, then getting up--and repeating this a couple times: the next day I learned online how to do the official Epley Maneuver, and I think improved my situation a little more.) Currently, my nauseousness is mostly gone, and the motion sensations are reduced, but continue to be an issue. I have also begun balance therapy at the Central Illinois Inst. of Balance: my first ENT had (I believe wrongly) concluded that my symptoms were not ENT related--this, after yielding "normal" results on an MRI and on an extensive balance test. I sought a second opinion, and that ENT ordered a CT scan, and requested the physical therapy for me: I am to see that ENT this Tuesday, as a follow up after the CT scan--which my physical therapist was able to inquire about, and find out that it shows me as "normal".
    4) I have developed skin rashes since August and am seeing a skin doctor. A biopsy was done a week ago, and I do not yet have results. I am wanting to get to the bottom of whether my skin problems are related to a food allergy. I am particularly wanting to determine whether my problem with the diet yogurt is a milk related allergy, or whether I perhaps have a histamine problem: knowing this may help me also determine how I can further modify my Hydrops diet to better control the ear fullness feeling, and perhaps the balance/dizziness.
    5) HEARING: since my issues started in late July or August (I actually now believe the fullness issue had started years ago, when I had begun feeling a need to clear my ears frequently) the first ENT performed a hearing test before inserting the tube back in September--then a hearing test again, after the tube had been put in. Even though I was having the fullness feeling and thought my hearing was down, the ENT indicated my hearing was at my regular normal (which for me is at around 100% in left ear and around 55% in right ear).
    6) TINNITUS: I have had tinnitus in my right ear so long that I sometimes forget to mention it. By the time I got to the second ENT in late January of 2016, my tinnitus was so bad that when I took another hearing test for the second ENT, I sometimes was mistaking my tinnitus for the background noise, and my responses were somewhat erratic: my hearing test showed inconsistent responses for testing on my right ear. (I think that test and my comments to the doctor about my tinnitus may have helped the doctor decide that physical therapy was merited: he has indicated that we may be having follow-up discussion about tinnitus therapy--after we discuss my CT scan results on this Tuesday.
    Thanks for reading my long response: in my case, my doctors have not yet mentioned hydrops, but shortly after my late January visit to the second ENT, I was so frustrated with my situation, that I began research online. I quickly found an article by Dr Timothy Hain that mentioned the fullness in the ear and also mentioned food allergies sometimes related to hydrops: Reading more of what Hain and others had to say about hydrops and Meniere's disease, I am now convinced that I have hydrops at some level--probably SEH. (I had two true vertigo incidents--where things were really spinning: these happened before I had the tube put in my ear in September--and were brought on by me trying to clear my ears. I have not had additional incidents of true vertigo, and therefore do not believe I have Meniere's disease.
    I encourage you to research online: from my reading and experience, I think that half the ENTs who haven't graduated in the last dozen years probably do not know enough to diagnose Hydrops. There is lots of information online indicating that many patients have gone through extensive testing and frustration without reaching that diagnosis and understanding--I do think that therapists and people with extensive Vestibular training seem to understand Hydrops and it's symptoms. Also, I am at much greater comfort, believing that I have found out for myself much of what my problem is, and what I can do about it (the Hydrops diet, and balance therapy for starters). I wish you well, and hope you get the answers you need.

    Last edited by hellodrops; 03-12-2016 at 09:52 AM. Reason: forgot some information

     
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    Old 03-12-2016, 09:54 AM   #5
    hellodrops
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    Re: question (hearing) for menieres and cochlear hydrops sufferers

    P.S. I have also had some hypersensitive hearing at times: for instance I felt a need to put earplugs in when taking a recent flight from Denver--the noise of the cabin pressurizing was too much for me. Background noise at restaurants has produced similar results.

     
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