ENT Suspects Meniere's Disease — Already Suffer from Unbearable Tinnitus

Discussion in 'Support' started by Joakim Skomsvoll, Sep 5, 2019.

    1. Joakim Skomsvoll

      Joakim Skomsvoll Member

      Tinnitus Since:
      Cause of Tinnitus:
      Possibly Cochlear Hydrops
      Hello, folks. There's no real point or conclusion and the end of this text, I just need to vent some steam in a situation that to me still seem totally unreal.

      I've had mild to moderate high pitched tinnitus in my left ear for about ten years. About five years ago it started bothering me so much that I got a hearing aid with masker. Hearing tests from this period was within normal range/values.

      Then, about a year or so after getting the hearing aid, I started having periods of muffled hearing, unbearably loud and intrusive tinnitus. These symptoms would always subside after a few weeks, but it would leave me scared and confused, not knowing the underlying cause. Two specialists and MRIs later, and still no answer.

      For about a year there was no sign of this coming back, until may this year. Slowly, over a couple of days, I noticed this feeling of pressure and ultimately muffled hearing again, alongside roaring tinnitus so loud that nothing could mask it. I have never been so scared in my entire live, and I was contemplating admitting myself to a psyciatric hospital. It was either that or ending it there and then.

      Days became weeks, and weeks became months, and for the first time the symptoms would not subside, although the tinnitus got a little better/lower. So yeah: Absolute torture from May to late August.

      A week ago I went to a third specialist, who - when I told him about my history of symptoms, immediately suspected Meniere's in its initial stages, as I have no history of vertigo or dizziness. I'm already very depressed by my current symptoms, and have difficulty coming to terms with them now being permanent. And the more I read about Meniere's, the more likely it seems that not only are these symptoms permanent, they will become progressively worse. WORSE? I am barely dealing with the the current situation as it is (suicidal), and now I have to brace myself waiting for this to get worse? Most likely more hearing loss parallelled with louder tinnitus. I could not come up with a grimmer outlook even if I tried. I'm truly terrified, partly because of the upredictable nature of this disease, and partly because this is forcing me to prepare for death if this get's any worse.
      • Hug Hug x 6
    2. GregCA

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      I'm surprised you got diagnosed with Meniere's since you have no history of vertigo or dizziness. Hasn't your doc mentioned "endolymphatic hydros" instead?

      There are things you can do. Learn more about it, and it may be a good idea to talk to @glynis

      Good luck!
      • Informative Informative x 1
    3. nicole76

      nicole76 Member

      Chicago, IL
      Tinnitus Since:
      07/17 / Worsened 04/19
      Cause of Tinnitus:
      One-Sided Hearing Loss (of unknown origin)
      I'm so sorry for your diagnosis. Before you think of doing something irreversible, please check this out. It seems to have worked for many people in your situation! It's at least worth trying vs ending your life.

    4. spinnaker

      spinnaker Member

      Tinnitus Since:
      Cause of Tinnitus:
      Unknown / hearing loss
      I was also diagnosed with Meniere's. Yes I do have periodic bouts of dizziness if I get up too fast from a prone position. But I also have mild afib and some circulation issues. I know I am in trouble with my afib, when I am dizzy just from sitting up. I also have problems when I crouch down with knees bent for a long time but never when doing something like deep knee bends so I attribute part of it to some circulation issues too.

      I never get dizziness or vertigo while standing or sitting.

      My complaint going in was fullness in the left ear that would not go away. That is how she diagnosed me with Meniere's for some reason. Turns out I figured out the problem on my own, hyperacusis. I noticed that if it was noisy the fullness and pressure would increase. Turns out there is a muscle in your ear that tightens in the event of a loud sound. It was that muscle causing the discomfort. I mentioned sound sensitivity and he said NOTHING about it. :(
      • Hug Hug x 1
    5. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Unknown, possibly medication
      I thought about hydrops too in reading this. There are ways to treat / manage hydrops.
    6. glynis

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      Meniere's Disease
      How are you doing now?

      Try not to google Meniere's Disease as it can make your fear worse.
      Meniere's can take a year or two before given the diagnosis as tests and time and symptoms need gathering together.

      Cinnarizine 15mg, 2 tablets taken three or four times a day can reduce tinnitus for Meniere's and the only medication that states can reduce it.

      love glynis
      • Like Like x 1
    7. dan

      dan Member Hall of Fame

      Toronto, Canada
      Tinnitus Since:
      Cause of Tinnitus:
      Loud noise
      Relax, you don't have Meniere's, your ENT needed a diagnosis.
      Your girlfriend is very cute though... I hope you are Ok mate.
    8. Palmolively

      Palmolively Member

      Tinnitus Since:
      Cause of Tinnitus:
      Viral, noise induced
      Meniere's is just a term ENTs use when everything generic is ruled out and they don't know what's causing the symptoms. There's always something that causes it. Here's few:

      - Ongoing infection such as Lyme
      - High virus load (EBV, Herpes etc.)
      - Something else wrecking immune system (allergies, mold)
      - Migraines (can cause hearing problems as well)
      - Cerviogenical/blood flow issues
      - Autoimmune issues

      All of these have treatments to reduce/eliminate episodes. ENTs don't care though, so if MRI is clear, you could try to diagnose yourself and try different things.

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