Stages of Meniere’s

According to my Neurotologist, he believes I am in burnout or the last stage of Meniere’s.  The stages of Meniere’s are controversial and if you aren’t familiar with them, perhaps after reading them, you’ll see why.  I happen to follow the stages fairly well.  I’ve talked to a few other Menierians who do as well.  However, there are numerous patients who do not fit it whatsoever.  According to this description of Meniere’s-Australia, I am squarely in Stage 3.  Somewhere out there, there is a better description of the stages, I just can’t find it right now.

What about you?  Do you fit into any of these stages?  Do you think it’s possible to classify people in a disease that’s so random to begin with?

I think my only qualm with this description of stage 3 is the “mild” dizziness and problems with balance.  The other description (that I can’t find) describes it as much more severe which has been what I have experienced.  It makes it sounds as if you’ve reached stage 3 as if you’ve reached relief and that’s not always the case, in my humble opinion.

http://www.menieres.org.au/stages.php

Three stages

Meniere’s disease generally progresses through three distinct stages of symptoms. However you can’t predict the timing of stages and severity of symptoms at each stage for a particular individual – these vary from person to person. This can make diagnosis of Meniere’s disease complex.

Symptom-free periods (remission) may also occur naturally. As well as making diagnosis difficult, all these variations make it difficult to judge the effectiveness of treatments in controlling symptoms.

Stage 1

Vertigo is a form of dizziness where your surroundings appear to ‘spin’. Vertigo is usually the main symptom at this stage and may be accompanied by severe vomiting. Vertigo attacks can last for hours – sometimes days – tending to occur in clusters. Balance returns after each attack but you can feel ‘washed out’ for days after.

Often, by the time you present for diagnostic tests, the ear has returned to normal. But because life style and dietary changes (eg reduced salt and caffeine intake) can lessen the long-term effects of Meniere’s disease, it is important to get an accurate diagnosis as soon as possible.

Patient history is one of the most important factors in making a diagnosis of Meniere’s disease. However, often the vertigo is so distressing that you can fail to notice other symptoms such as changes in hearing or tinnitus (ringing noise in the ear). You need an astute doctor asking the right questions!

Around half the people who are affected with this stage of Meniere’s may experience a remission of symptoms – that is, symptoms will ‘disappear’. This remission may last weeks, months or many years. Remission can occur even though you have experienced several attacks.

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Stage 2

It is easier to diagnose Meniere’s disease during this stage, as the symptoms are ‘classical’:

  • Attacks of vertigo continue.
  • Tinnitus increases with attacks of vertigo and becomes continuous.
  • The feeling of pressure or fullness in the ear may be worse before and during a vertigo attack.
  • Hearing fluctuates, but never returns to normal levels.

Periods of remission (ie. no symptoms occur) between vertigo attacks can vary from a few weeks to several years during this stage. About 50% of patients will progress to the next stage of the disease.

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Stage 3

This stage is often referred to as “burnt out Meniere’s”. Your hearing loss may be severe at all frequency levels to the point where it is difficult to recognise speech. There is no longer fluctuation in hearing levels as the hair cells of the inner ear have been destroyed. Although you may feel that your hearing is useless, it is rare for an ear to become completely deaf.

The tinnitus (noise in the ears) remains but may seem less of a problem because you’ve got used to it.

Attacks of vertigo (dizziness) occur much less frequently and eventually cease. Usually you no longer vomit and the nausea and dizziness is mild. Unfortunately when the ear has lost 50% of its balancing function, a persistent feeling of unsteadiness may replace attacks of vertigo. This lack of balance is more noticeable in the dark or where you cannot use your vision to orient yourself.

A few people may experience ‘drop attacks’ (Tumarkin’s crises) in which balance is lost for a few seconds and you fall to the ground – a particular concern for the elderly. Drop attacks occur without warning and with minimal vertigo. It’s unusual for these attacks to continue happening for longer than one year.

About Nicki

wife, mother, teacher, full of rambling thoughts, long-time Meniere's fighter
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10 Responses to Stages of Meniere’s

  1. deb says:

    Nicki,
    If you are instage 3, wow…you are almost done! That’s fantastic :) I have followed that exact list with my case and I figure I am somewhere between 2 and 3. Perhaps with the Meniett I will stay at this stage for awhile.
    But, I know that burnout does happen. My father-in-law had Menieres for about 12 years and then it was gone. I am about 9 years right now and can’t wait for the burnout! Hope you are feeling better these days,
    Deb :)

    • Nicki says:

      hey deb,
      still struggling a bit but it’s easing up some. is your father-in-law having any symptoms now?
      ~nicki

      • deb says:

        Sadly enough he struggled with cancer and passed away before I was diagnosed so I was never able to have a conversation with him about it. The info I do get is from my mother-in-law. She has the spousal perspective which is also a bad place to be but she can’t give me the details about his specific feelings etc. Its nice though that she can support my husband through this. I don’t think he actually ever recieved any medical treatment. He just rode out every attack. I think he was one to not complain. Most men of his era were quite private that way. Not me…bring on the meds!

        Be well
        Deb

  2. wendy says:

    Well, from what I’ve read, you may be on the way to feeling much better, but you won’t be able to hear much.

    I think I’m still in Stage 2 with both ears. And I’ve had Meniere’s in my right ear for about 17 years now, maybe a little longer. My hearing I think has pretty much leveled off in my right ear, but sometimes it still seems to go down even more….for example, sometimes the little amplifier that I use sometimes doesn’t seem to work as well on some days. I know the right ear was causing a lot of vertigo until my surgery in April.

    I think I may have been in Stage 1 for a very long time.

    Dr. Kaylie has said that my Meniere’s isn’t typical. But it has progressed a lot in the past 2 years. I’ve gone from having an attack once ever couple of months or less, to having an attack at least once a week. And becoming bilateral after 15 years is kind of unheard of.

    I hope your dizziness settles down soon. I think with Stage 3 you have more disequilibrium, kind of like I have in from my right ear since the surgery. Actually, since the surgery, my right ear does act more like Stage 3. But my left ear is still in Stage 2, big time. : )

    Good luck!
    wendy

  3. Anthony says:

    Hello,
    Could anyone help me. I have had what I call a Muffled Hearing attack with NO other symptoms for 5 years ( 1 to 2 attacks per year). The attacks come on suddenly.
    In the last 12 months I have had a muffled hearing attack with roaring Tinnitus. Once again No other symptoms, The first attack was 8 Hours and the second was 2 hours.
    After these attacks my hearing seems to be really sensitive. The Higher frequencies are very very clear , Possibly a bit too loud.
    I feel that i may be in a second stage in whatever I may Have
    Thankyou
    Anthony

  4. rach says:

    My husband has recently had steriod injections into his ear after experiencing ringing in his ear, vertigo and dizziness. Things are not getting better. We spent christmas eve in the ER. Nothing is helping, no answers from doctors. He is becoming depressed and he is only 31. What can I do to help him? any suggestions at all, this is significantly affecting our quality of life. thank you.

    • Nicki says:

      1) find a neuroTologist. that T is important. they specialize in the relationships between the inner ear the brain. even then you may have to go through a couple to find a good one.
      2) get a prescription for valium. it’s a miracle drug for many meniere’s sufferers and may save your husband trips to the emergency room. if you get the prescription, (i have 2mg pills, some have 5mg), take half the pill under the tongue AS SOON as you feel an attack coming on. for many, it can stop the attack completely or at least slow it down and shorten the duration a great deal.
      3) get suppositories if vomiting is an issue. many people us phenergan. i’m allergic.
      4) research. research. research. do your homework. know of all the alternatives out there. don’t let a doctor rush you into anything destructive like the vns or the gent injections, etc.

      • Lisa says:

        Well, I apparently am reading a blog established 2 years ago, so I really don’t expect a response. But it is worth a shot. I’m curious as to how valium is helpful to Meniere ‘s symptoms. I was diagnosed over 35 years ago and not once has a doctor suggested valium. How can it stop an attack? Are we discussing dizzy spells or the extreme ringing/roaring in the ear along with intense fullness and pressure? Another question, has anyone experienced a period of years ( and I mean more than six) of remission only to be thrown back into agressive symptoms? Also, has anyone experienced a feeling of vibrations in the head, signaling the onset of symptoms after a period of symptom-free?

  5. D says:

    I was diagnosed over 15 years ago and wish I knew of the stages sooner. I fit squarely into stage 3. At this point hearing in my right ear is all but gone and distorted at best. Left ear ( I’m bilateral) is ok but need to find a hearing aid that works for me. I hear but speech recognition is not good. My ENT says I’ve lost over 80% of my balance. Tinnitus is still very loud and loud noices are very hard to be around.
    BUT- the vertigo and vomiting have stopped. They are replaced now with infrequent drop attacks and milder spells. I’ve fallen in public once but usually somewhere I can hang on.
    Hearing loss is hard for me and others. I find myself withdrawing from some social situations
    But work hard to keep my spirits up
    Good luck all

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