Meniere's is winning- faster than I expected

Hearing Loss
#1

I knew Meniere’s would cause my hearing to get worse over time, but it seems to be speeding up. I had my first Meniere’s “attack” last Jan (2020). Audiogram from Jan 2020 shows right side went from 35 to 45 in the lower ranges. Test in Sep 2020 shows right side going from 45 to 55-60. Test from today shows it now hitting 75 and WRS now at 36% @ 95db (right side). AuD is saying that I’ll probably be looking at Cochlear Implant in next 2-4 years. This was rather depressing news. I already have severe/profound loss in the higher ranges to start with. (all audiograms are uploaded here)

I met w/ ENT in Mar 2020 and went through basic recommendation of changing diet. Though honestly, I can’t say I’ve followed it. I think today’s test was the wake up call. I think it is time to make a follow-up appt w/ ENT and start paying more attention to what I eat. I can’t really stop what Meniere’s is doing, but maybe I can slow it down.

#2

Welcome TXPE, you have my understanding and empathy, as a former sufferer for about 8 years or so, fortunately mines burnt out, but unfortunately in the process it took most of my residual hearing with it, every attack is progressive, and gradually erodes your hearing until there isn’t much left, well that’s how mine evolved… Strangely my younger brother developed Meniers and was diagnosed about a month or so ago, I say strange because I am unaware of it being hereditary, so perhaps it is just a fluke of nature? I am afraid you might have to curtail your diet and avoid all stimulants, tea, coffee, alcohol and salt intake should be stringently avoided if possible, it can make a difference! Good luck, cheers Kev.

#3

Thanks. What do you mean by “former sufferer”? I didn’t realize it could go away completely but may lay dormant for some time period.
Interestingly, I was diagnosed with “severe endolymphatic hydrops” in 1998 by a ENT. At the time, my issue was that I couldn’t hear due to fluid. My (different) ENT last year said that is also same as Meniere’s. Other than the fluid issue in 1998 (lasted about a month), I’ve never had any major issues until Jan 2020 (22 years dormant?) with what I considered to a significant Meniere’s attack. I’ve had several since then. It would be nice if it went dormant for another 22 years.

#4

Hi TXPE, you may have went on to develop “Bilateral Meniers”? Around 50% of folks only get Meniers in one ear, the other 50% will go on to develop Meniers in both ears, the “Burn Out” stage is common, it is explained in more detail from a copy paste below; personally my Meniers experience started off fairly low key, and then building up to full blown Meniers with severe cluster attacks lasting, days, weeks and sometimes months, at it worst I would be in bed for a week or so as I was unable to remain vertical, dizziness, vertigo, fullness of ear, severe hearing distortion, nausea, visual distortion, the walls and the ceiling would move, tinnitus would be off the scale, twas a living nightmare, and for approximately 8 years I was unable to function properly as a human being, then inevitable depression and anxiety kicked in, unable to work, I was to all intensive purposes a total recluse, but I survived with the loving help of my family, it was a horrendous time for them as you could never plan anything, everything was up in the air… Looking back, perhaps Meniers never truly leaves you, I still have the occasional balance problems, my hearing has severely deteriorated, I have a curious habit of occasionally walking into walls in the dark for some obscure reason? Anxiety left it’s indelible mark, but for the most part I am fairly content with my lot. Everyone is different, and like hearing loss, Meniers will effect everybody differently, symptoms will vary, but thankfully it is quite a rare disease! Take care, cheers Kev.

Burn Out

The term burn out is frequently used to describe Meniere’s as though it is the end of the line, that it has finished. However, it really means that the vertigo attacks have disappeared as the vestibular function has now been destroyed. The disease continues to progress as hearing is completely lost, tinnitus and fullness will continue even after burn out.

Vertigo tends to reduce as the disease progresses. On average 50% of people are vertigo free after 2 years, and 71% are usually vertigo free by year 8. Others continue to experience attacks for up to 20 years. These figures are based on a unilateral suffer. For bilateral menieres unfortunately this is per ear.

Doctors disagree as to whether or not burnout will happen.

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#5

Thanks for the informative post! It sounds like you are past the hardest parts.

Up until recently, I thought Meniere’s was affecting both ears. Now, I’m not so sure.

#6

You are very welcome TXPE… Hopefully the vertigo will ease off, and you can return to some resemblance of normality. Good luck, cheers Kev.