So My Doctor Thinks I Have Endolymphatic Hydrops...

Discussion in 'Support' started by Mario martz, Oct 1, 2016.

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    1. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      I had an appointment yesterday with a new ENT, I was kinda excited about it, cause he seems to be very passionate about the subject.

      He performed a pressure test and told me my ears were fine.

      And then an audiogram (he hasn't sent me the results) and he told me like "wow your hearing is great i went all the way to 20k and you hear everything"

      So... from that moment.. i thought my hearing was good?

      And during the test i didnt struggle to listen to any frequency (low-mid-high) but thats what i think???

      at the end, he told me that my tinnitus may come from a endolympathatic nature.
      and that he would like to perform an "brain map" im guessing its an MRI and and another test.

      in the end he told me you shouldnt avoid parties or clubs and dont need to wear protection, just keep your self away from the spakers because your tinnitus doesnt come from an acustic trauma (???)

      so in the end... i dont know.
      yes i have had tinnitus for 7 months already and its better than the first months,
      salt, sugar and msg spike it so i have been avoiding it since the first month.

      my symptoms arent sooo bad, just the ringing, sometimes i have mild pain that last for seconds, mild hyperacusis, and my ear have felt "blocked" just one night and then it return to normal...
      i havent notice any change on my hearing, i actually hear pretty well...

      i know in some people endolymphatic hydrops take a while to "develop" but i havent had any dizzy/vertigo episode in this past 7 months.
      and i thought this was a primary symptoms for menieres or endolymphatic hydrops.
      im very confussed right now.

      it doesnt make sense, i have had 10 years of loud loud music and i thought my t was related to... music?
      lets see how it goes.

      im guessing that the doctor didnt find anything related to acoustic trauma in my audiogram so hes thinking is neuro-related... to make more money out of the studies haha.
       
    2. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
    3. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I would definitely still protect your ears from loud music by using noise reduction plugs.
      Vestabular ear conditions like Menieres can take a while to develop and for the symptoms to surface.
      Not all symptoms have to happen and can go days,weeks,months and years in between attacks.
      Sickness ,dizzyness,tinnitus,ear pressure, vertigo,drop attacks,bouncy vision,balance problems,eye twiching,positional vertigo and hearing loss are most of the symptoms and as its a progressive disease there is no cure but medication to help with some symptoms.
      It's going be wait and see for you as only time will tell how it will progress if you have it or if it's down to Labyrinthitus ( spelling might be wrong).....hope this helps.
      I had hearing tests,MRI,balance tests etc but the vertigo and all the other symptoms were precent and lots of attacks....lots of love glynis
       
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    4. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      One of the main signs of endolymphatic hydrops is progressively worsening hearing and tinnitus (plus vertigo and other nasty things) so your doc is probably a bit crap. Get another opinion, if you haven't already.
       
    5. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Thats what i believe, this dude is putting me on so much stress with his "diagnostic"
      my tinnitus had gone so much better.
      right now i dont listen to it, even in the quiet, and my hearing is the same....

      what i think is that he didnt saw any dramatic stuff on my audiogram
      so hes thinking it might be "neurological" related thats why he wants me to get those studies.
      and then.. when they come clear..
      it would be a "well everything is fine, good luck"

      according to my "investigation" i have i have hidden hearing loss...
      but who knows i cant believe all these years of loud music, front row concerts, tinnitus after concerts, almost daily noise exposure didnt do anything... hahah that would be crazy.
       
    6. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      The relationship between tinnitus and hearing loss seems to be one that isn't really explained by the standard audiogram. We all get told our hearing is fine, give or take a little here or there, and for most of us that's when the medical brick wall goes up. We go to them for T & H, and they look for deafness and when they don't find it it becomes about reactive psychology.
       
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    7. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      i think i have hidden hearing loss.
      to me its not logical
      weeks before my onset i was going weekly tothis supe rloud club and left at 4 am, i had fireworks in my bday, and lots of noise exposure.
       
    8. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Would still protect given that u can't tell for sure what the cause is. I too have no hearing loss, however am now careful in noisy places.
      Came to the conclusion that I could also have the same condition. Like u have only one of the three typical symptoms but no obvious noise damage, so thinking of EH or jaw...neck...the list goes on.
      Please let me know what treatment he recommends. I have read a story by a guy in Italy who was cured after a year to tinnitus and dizziness with the hydrops treatment.
       
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    9. Jkph75

      Jkph75 Member

      Tinnitus Since:
      2/27/16
      Cause of Tinnitus:
      Unknown
      So, your only symptom is tinnitus and he says you have Hydrops? That doesn't make any sense. Do you have days where you have no tinnitus and then days with it? Even if you do, that would be a real stretch. You either have to have vertigo or low frequency hearing loss for them to think you have Meniere's. Go see a Neurotologist. They know a lot more than ENTs. Still I am glad you finally went:)
       
      • Like Like x 1
    10. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      my tinnitus is constant and its always there in my left ear,
      i dont have vertigo, im really curious to see my audiogram but they turned out to be very unprofessional and im still waiting for them to send me an email with it,
      i had a glance of it and there were only straight lines....
      if he did saw a low frequency hearing loss... then maybe thats why hes thinking about menieres or endolymphatic.
      that would make senses.

      but has i said... i have never had any form of attack in thee past 7 months, and my tinnitus is better than ever.

      i didnt have any problem listening to all frequencies on my test...
      So maybe i have a some form of endolymphatic hydrops without vertigo?
      mmmm
      but to be honest that made me doubt about his integrity is... "you can still go to bars and concerts just dont be near to the speakers" mmmmmm
       
    11. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Sounds interesting!
       
    12. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Mario, at least you have a doctor who has heard of endolymphatic hydrops. That's one better than most of us get. Now, does he know how to prove it or otherwise?
       
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    13. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Who gives a fuck what the doctor diagnosed you with? Can he help? No he can't, so why care.
       
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    14. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      whats funny is that i didnt went to get diagnosed, all i wanted to know is what could i do to travel by airplane and not get my ears blocked, he performed a pressure test an audiogram, at the end of the audiogram he was like.. "so there doesnt seem to be an acustic trauma" its most likely to be a neurological disorder like meniers or secondary endolymphatic hydrops...
      but mmm im not sure, my tinnitus has become better over time, no vertigo, no dizziness, no change in my hearing...
      mm everything is very fishy.

      to be honest thats was the only doubt i had, my tinnitus doesnt bother me anymore that much.
      i just dont wanna make things worse by flying
       
    15. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I believe that a person with tinnitus shouldn’t go out of their way to avoid going to parties, clubs or other places of entertainment where it’s likely music will be played loud, as that is allowing the condition to take control over them. However, in my opinion, any ENT doctor that tells a tinnitus patient not to bother using ear protection when attending such places needs a serious talking to by someone more knowledgeable than him or her about loud noise exposure being the main cause of hearing damage, tinnitus and hyperacusis. Better still, after being told such a thing I would go elsewhere and look for another physician.

      I fully agree with Glynis, and advise anyone going to venues where loud music is likely to be played to wear noise-reducing earplugs. ENT doctors may know about the anatomy of the ear but the majority of them have never experienced loud intrusive tinnitus and hence, no nothing about it.

      Michael
       
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    16. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I would go rip it up at clubs and not give a shit unless you are experiencing some kinda weird symptoms. Wear ear plugs and don't yell with them in (occlusion effect). I get dizzy after noise, reduced hearing, massive H and vertigo, if you don't have these wierd inner ear issues I think you are just being paranoid. Go have fun and and quit being so paranoid man. I would kill to go out with my friends again.
       
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    17. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Thank you telis,
      its hard not to be paranoid, i have been prone to anxiety all my life,
      because of family isuess, death of people i loved etcc..
      thanks for the advice, i would try to go out more and wear earplugs.
      when my t spikes (sugar, salt, msg) it can be a fucking drag and i wont be able to sleep
      but i have it undercontrol, i have mild hyperacusis, but its nothing.

      no vertidgo, no dizziness, i still go out, just not to loud places.
      after reading horror stories i became a morning person, avoiding noise.
      i miss going out with my friends to parties
       
    18. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
    19. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
    20. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      I just have some many questions...
      like if i have.. menieres or secondary endolymphatic hydrops...
      why dont i feel dizzy or vertigo? i can move my head and body fast without having balance issues, i even dance and rotate.

      also if i have low frequency hearing loss...
      why dont i notice any change in my hearing these past 7 months?
      like for example right now.. in my room there a lot of noises and i could hear this fainty noise happening in my iphone charger....

      also... they say the hearing loss comes and goes..
      why i havent felt that? i havent had anyyyy change on my hearing seriously. i dont get it.
      all i have read in this place is that people with early meniers or hydrops start loosing low frequencys but they are very aware of them...

      doesnt make any sense..
      its a strange world.
       
    21. Jkph75

      Jkph75 Member

      Tinnitus Since:
      2/27/16
      Cause of Tinnitus:
      Unknown
      I think you really have to get your hands on your audiogram. It sounds here like he saw something in your audiogram which made him say that he thinks that you have Hydrops. With acoustic trauma, you would have hearing loss in the higher frequencies. Hydrops is loss in the lower frequencies. Sounds like he made some confusing statements. Hopefully, you can sort things out soon. Let us know how it goes.
       
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    22. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Sounds like he doesn't really know. I suppose its possible that an acute tissue injury and inflammation inside the inner ear could result in a change in fluid dynamics leading to altered endolymph flow patterns, but jpkh is right with the kind of loss you should see with that. It may be though that the audiogram as a diagnostic tool lacks the sensitivity to detect really subtle changes.

      I'll still hand it to him. He's at least thinking outside the usual box a bit.
       
      • Like Like x 1
    23. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Acoustic Trauma, Dysautonomia/Vascular
      Whaa?! Your doctor is nuts in saying that you should go to a loud venue without ear protection. That's unthinkably bad advice. Going to loud venues with ear protection, on the other hand, is reasonably safe under specific circumstances (earplugs alone are no good for clubs or heavy bass venues, however, avoid those places for sure).

      I agree with Jkph75 that you should obtain your audiogram, and look and see if there are small dips the lows or the highs. Many ENT's will be quick to say 'normal' as long as your hearing does not drop below the 30 db line, which is really not accurate (because by then you are hearing impaired in a given frequency, and if that happened across the board you would need a hearing aid, and you can start running into problems long before that). I'd say 15 db and below at a young age, for any frequency, means that something is not quite right, whether it be from noise damage or something else. Hydrops can also affect either end of your hearing, and secondary hydrops (the one caused by ear trauma, not occurring by itself) can present exclusively as high frequency loss from what I've read.

      I'm also curious as to how your ENT came to that conclusion, as all the symptoms you have described can come from noise damage exclusively. Usually it takes a great deal of trauma for a noise injury (or some other type of traumatic damage) to turn the condition into secondary hydrops (like you'd have to be in the military, with explosions, or play in a heavy metal band). Perhaps you have had enough loud noise exposure for a mild condition to develop, and that you may be in the very early stages of something. I would think to wait for the results of an Ecog test if your ENT is able to provide one, however, and to review your audiogram yourself. The Ecog is a slightly more useful diagnostic tool for Meniere's or hydrops. Don't exactly remember how it works because I have avoided getting one (too loud).
       
      • Like Like x 1
    24. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma from airplane descent, noise exposure? ETD? TMJD?
      Maybe a blood pressure drug like Dyazide would help remove the excess salt. I've been told I had hydrops by one ENT. Salt, msg, etc. spike my noise within 15 minutes. I should have a appt. with Dr. Paparella who is relatively close by. I recently seen one of his partners.
      http://www.tinnitusjournal.com/detalhe_artigo.asp?id=474
       
      Last edited: Oct 3, 2016
      • Like Like x 1
    25. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Thank you Jkph75,
      Yes i believe the same, wich is weird...
      after reading the horror stories about people going to for the first time to a loud concert and then getting full blown tinnitus.
      and me... well i have gone to at least 40 loud concerts in these past 8 years and also clubbing every weekend.
      but if the did saw some loss in the low frequencies, then.. his diagnosis might be possible.
      for some reason, he never showed it to me...
      i had a glance at it and it was all straight lines...
      but it was just a glance, and he only told me... it came out good.
      soo mm i dont get it? but who knows. i hope i have that audiogram by tomorrow.
      at the other hand im hoping that this is just a protocol he follows... to run more test...
      "if its not acustic trauma then its something neurologic"
      but lets hope for the best, to me.. my tinnitus have been so much better, ive been feeling so much better in these past 7 months, so... the idea of things getting worse its a bit scary.

      and also from what i have read... is that when you have endolymphatic hydrops things get gradually worse over time.
      and in my case has a i said... "no vertigo, no dizzy spells, tinnitus lower, hearing steady"
      but lets just wait for that audiogram and just hoping to good that things dont get that bad so quickly.
       
    26. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      whenever i have salt or sugar my tinnitus spikes the whole days, no matter if i drink lots of water.
      but it only gets louder... they dont trigger any other symptom.
       
    27. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Well yeah,
      before this appointment with my ENT, i came to the conclusion that i had hidden hearing loss... but who knows?
      i dont think you need a great deal of a trauma for a noise injury.
      there are many stories of young people going to a concert for the first time and getting tinnitus.

      so, i think some people might be prone to have that kind of problems.
      ill wait for the audiogram. and hope for the best thanks coyotesheaven.

      its just that its very unclear for me. for example you have describe how losing your lower frequencies have had an impact in your hearing and all the other symptoms.
      i have had this for 7 months and i have never had any form of attack only my constant tinnitus (from what i have read in hydrops it comes and goes) mine is STEADY all the time is there.
      and also i havent struggle to hear...
      tinnitus=hearing loss
      but i dont percieve that loss...
       
    28. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Acoustic Trauma, Dysautonomia/Vascular
      @Mario martz

      I agree with you in that many people, even adolescents, can acquire tinnitus and ear damage from a single concert. It is cochlear hydrops that would be exceedingly unlikely to occur from a one-time exposure, or even multiple exposures. Just think of all the drummers in rock and heavy metal bands; their hearing is often trashed by the end of their career and they might well have fearsome T and H, but they usually do not come down with Meniere's like symptoms.
      If hydrops happened there would no doubt have to be a genetic predisposition relating to abnormal fluid regulation in the inner ear/acquiring a more serious inner ear injury in the individual, something science cannot yet tell us about.

      The hidden hearing loss idea sounds more valid. Loud noise tends to go after the synapses between the hair cells and the spiral ganglion neurons before the hair cells are destroyed themselves. So you may have preserved hearing on the audiogram, but in reality sounds at certain frequencies may not be processed as efficiently by your brain because of the lack of connection between the hair cells and the brain. I guess you can test this idea out by monitoring your speech comprehension and your ability to pick out softer sounds in noisy places. People conversing with you may not sound as clear as it once did.
      On that matter I am wondering why they did not, despite the fantastic audiogram, perform a speech-in-noise test for you to look for that hidden damage.

      You probably also have losses in the very high frequencies, most likely above 8 and 12k. I'm shocked that they were able to test you all the way to 20k; they must have really great equipment! But any loss even way up there can definitely produce tinnitus; that's what happened to me when I got blasted by that firecracker. There is also a bit of a misconception that this counts as hidden hearing loss when there can be hair cell damage way up in those rangers. It may appear 'hidden' for some people because not many are aware of how those frequencies color the environment around them, and will thus be unaware of when those frequencies are suddenly gone.
      I was completely aware of it when it happened to me, however. When I lost hearing 16k and below, the highest harmonics of my music were cut off and the world around me sounded very different, and felt like it lacked 'air'. Hissing air sounds are some of the sounds registered in those very high frequencies. Many musicians will notice the change too and realize that the quality of the music they hear has somehow been degraded.

      I am glad, however, that you have had no worsening of your tinnitus and do not see it come in waves (mine is all over the place every day) . It all goes to further support that you may just be suffering from a loud noise injury that has not quite mended itself. I certainly hope it does mend, in time.
      If you do have hidden hearing loss as your think you do, you also have reason to be optimistic about your situation. There has been a lot of promising research aimed at regenerated those damaged synapses, and that therapy is likely to come long before stem cell and gene therapy do for regenerating hair/supporting cells/auditory nerve fibers. Decibel therapeutics, in conjunction with one of the lead researchers in this area, already have one of these synapse regenerating drugs on the pipeline and it may be placed in the clinical trial setting in a few years.
       
      • Like Like x 1
    29. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016

      Thank you Coyote!
      they did test my hearing til 20k the doctor actually was like (im the only one in this city to test it til 20k)

      i do have my reasons to believe i could have "hidden hearing lose" or "endolymphatic hydrops /menieres or secondary)

      as i said before my hearing hasnt change, and i have my own history that could lead to "hidden hearing lose"

      in the other hand....

      i came across this article a few weeks ago...
      http://www.techtimes.com/articles/1889/20131208/cure-for-menieres-disease-discovered.htm
      http://journals.lww.com/co-otolaryn...sleep_apnea_syndrome_as_a_novel_cause.14.aspx

      i do have untreated obstructive sleep apnea for a year and a half
      and actually it was getting a little bit bad before the onset.
      so i guess if i do have "endolymphatic hydrops" they could be secondary to this problem...

      i wasnt having any other health issues.
      i think i need to wait for the audiogram, today for the 4th time i called the clinic to ask them for it again....
      so unprofessional.

      lets see what the futures holds, i cant believe im saying this but i do wish i have "hidden hearing loss" because its msot likely for a cure or treatment very soon.

      i have talked to marcelo rivolta and he was very positive about steam cells for hidden hearing loss and they told me they were gonna test them for menieres too, that there was some potencial...
       
    30. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      So finally he is my audiogram...
      my t is on my left ear..
      mmmmm
      i would appreciate your opinions
      2h88w79.png
       

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