Any recommendations - significant loss

Hearing Aids
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So I have significant (-85db across all) hearing loss in one ear due to Meniere’s. Obviously this has changed over time but where it stands now I am struggling for an option that works. I have an Oticon More also Philips 9030. Custom molds.

Both aids (different fitters) bring in some sound but not necessarily words. The Oticon in the car I can hear the words to songs and understand but it sounds very far away. The Philips can get that people are talking but more like Charlie Brown. LOL

I am being told that for my hearing it isn’t reasonable to expect more.

Coming here to see if anyone has ideas or something that I can ask for/try etc. Different Oticon (Exceed/Own?), Virto Infinio, ?

Thanks all!

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I have a few thoughts. 1) I’d consider a cochlear implant evaluation. 2) I’d ask about a CROS setup. In this the sound that comes to your affected ear is transmitted to your good ear. 3) This one probably should have been first. How long have you tried the aids? Sometimes your brain can adjust and the sound “normalizes.” If you can understand the words I’d give it some time. If not, go back to 1 or 2.

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@kevels55 might have more information since you are dealing with Meniers disease. He has dealt with this desease and profound hearing loss.
Good luck

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Another question I repeat here to the point of boredom—what is your word recognition score (WRS) in quiet? In each ear separately (especially the left) and binaurally?

If the percentage in word recognition score in quiet is low in the left ear, it answers why the hearing aid couldn’t help.

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Up until recently while not perfect the HA’s were able to assist enough so I was told I wasn’t at a point for CI. I am going to investigate that.
CROS - my concern with that is right now I have one good ear; if I put in a hearing aid to carry sound from my left to right I now block the good ear. And as important I would still only have “one” ear. If I am only going to have one ear I might as well just not wear anything?

Piece that has me truly wondering is WHY if I turn the sound way up can I hear/understand words. Doesn’t make sense if that is happening “why” the volume of the aid can’t simply be adjusted.

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I don’t recall that score. But I am getting tested again in a couple of weeks.

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There isn’t much advice you can give to a Meniers Disease sufferer Rick, much depends on the frequency & severity of the attacks, I suffered approximately 8 years of cluster attacks, twas fairly mild for the first couple of years, then it gradually increased in severity, until about year 6, then it gradually abated, over the next 2 years, and then petered out… Classic MD burnout… Took most of my residual hearing on the left, and a fair chunk of the right, plus my balance is now fairly dodgy, especially in the dark! Not every MD sufferers will be the same, some might have relatively mild symptoms, others might get the full blown symptoms, extremely loud tinnitus, extreme distortion, both visual & hearing, extreme vertigo, sickness and diarrhoea, extreme fatigue, I would be literally in my bed for days, hearing aids around this time were absolutely useless, everything was distorted, I could hear a noise, but there was no contextual information… @nicmger I wish you well… @Bimodal_user here in the UK, very few A.uD’s perform WRS, it’s just not done here much in the UK, perhaps most UK A.uD’d don’t find it beneficial? I can only recall having it done once in a CI assessment, I wasn’t given my score, but it was likely very poor unaided? Cheers Kev :wink:

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Kev - thank you. Knock wood the frequency and severity of my vertigo attacks have lessened over the past 10 years (vs the first 9). Thankful for that absolutely - the vertigo attacks and the issues connected were awful. So definitely appreciative of my “today” world just keep hoping for an answer to my left side hearing. Unfortunately while I think fitters try their best my top of hearing loss isn’t the norm and therefore they don’t have as much experience. Thus coming here to a place where often folks that have experienced situations can give me advise and questions/direction to ask my dr!
Sorry you had to experience Meniere’s. Appreciate you taking the time to respond.

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You may be right. I have just realized I cannot recall a WRS test from my childhood, when I did not live in a big city. I probably only had multiple tonal ones.

From what I remember, I had a WRS test for the first time during my first CI assessment in 2011 (I was 21-22 yo then), in a hospital’s audiology ward.

The only non-hospital WRS assessment was in a private audiology practice near THAT hospital :face_with_hand_over_mouth:
(in wasn’t accidental coincidence😇, but tests were performed with quality.

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You are very welcome @nicmger… For me, the visual distortion, hearing distortion & vertigo were some of the worst aspects of Ménière’s Disease, throw in the depression, then I still wonder how I survived that period of my life, but we eventually adapt to whatever life throws in our direction… Another aspect was the sheer unpredictability of MD, you couldn’t plan anything, I couldn’t work, whom would employ me? I recall going on holiday from hell, with my wife & kids for a week, 7 days of cluster attacks followed, I was permanently laid up in bed for the week, it had a terrible knock on effect, on my families wellbeing, they suffered because of my MD, and I always felt guilty! Eventually, I had an early warning system in place, I sussed out, every time my tinnitus got extremely loud, an MD attack was very imminent, it was time to lie down or go to bed… I am glad you are over the worst, hopefully you will find a suitable solution, for your hearing! Good luck… Cheers Kev :wink:

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Some people benefit from CROS; some don’t. I think the benefits are more directional but I can also imagine if somebody was speaking softly into bad ear that sending that signal to the good ear could help. I’m only guessing but I think what may be happening if you turn the volume up way high that it may be transmitting to your good ear via bone conduction. It might also be that you just need more gain. Ask your Audi. Edit: As Neville points out below, CROS shouldn’t be considered unless one has ruled out Cochlear implant. I believe the reason for this is that CROS doesn’t stimulate the nerve for that ear and that stimulation is important for the success of cochlear implant.

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Thankfully I was able to keep my job; numerous times coworkers had to drive me home. Humbled me as I had to learn to ask for help. The anxiety of wondering “if” an attack was going to happen was no joke. My hearing could plummet, ringing go crazy and not have a vertigo attack. But of course both of those would be there prior to an attack. It truly started to get to me. What kept me going was knowing that with the ativan under the tongue at least my attack would be limited to under two hours (two hours of h#ll but at least not the prior 6-8 hrs). And trying to be focused on at least my attacks didn’t stretch for days like some. Depressing disease - especially as drs have nothing to offer basically sucks to be you.

I still get some episodes with the ringing and visual distortation; but not full vertigo so happy for that. There are “bad ear” days where I stay home to be safe.

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It’s good to talk @nicmger, although these days were at times, a living nightmare… I also recall, praying deeply around the hight of MD, that I would just accept total profound deafness, if the vertigo would just go away, it took me years to accept, my vertigo was gone! Perhaps 4 years after, before, I accepted it was no more, anxiety & stress over the least bit of dizziness or unusually high tinnitus, but eventually, I was emboldened to believe it was no longer present, it was an unbelievable relief! As far as the Ativan goes, if that’s what I took under my tongue, my memory of that time if fairly hazy, I definitely remember taking these tablets, (whether they were called Ativan, I am unsure?) but I didn’t take them for long, they made me very ill, dizziness, blurred vision & constant nausea, (Strangely, almost similar to an actual attack) to me the cure was far worse than the symptoms, so I just rode out each attack without them… An attack for me, could last 20 minutes, but invariably 4 to 8 hours was the norm, a few hours respite, then it would start again, this could be repeated over many days, then suddenly it would stop for no apparent reason, I would then go, a week, a fortnight, perhaps a month, then wham, MD was back with a vengeance, it wasn’t until approximately year 6, that I noticed the attacks were becoming less intense, up until that point, they were very gradually becoming more intense, more frequent, building up to a crescendo, or so it seemed, I was most fortunate to be a member of the “MD Society UK” at that time, we got a monthly newsletter, it wasn’t a massive magazine, but there was a lot of useful information, and you didn’t feel so much on your lonesome! Strange as it may seem ( MD is not believed to be genetic) it doesn’t run in families, although some schools of thought say otherwise, in truth they are really unsure what actually causes MD… My brother was diagnosed last year with MD, the odds must be quite large, there are approximately 120k sufferers with MD in the UK. Cheers Kev :wink:

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This reminds me of the malaria pills we were supposedly required to take when in a certain land that was rife with it. You learned pretty quickly to choose your poison.

WH

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Have you ever taken betahistine for vertigo?

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Yeah @Bimodal_user, I have taken Serc, there is very few actual drugs I can take, any side effects, then I normally get them, if I recall correctly, Serc reeked havoc with my stomach! That being said, not all drugs adversely effect me, for instance Metformin, which can have horrendous side effects for Type 2 diabetes sufferers, I can take this no problem, apart from a severe dry mouth, I’m fine… Cheers Kev :wink:

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I take 4x Metformin a day. They certainly can affect my digestion, to the degree of ‘being worried about wind!’

I’ve not really noticed much else with them

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No CROS until you’ve ruled OUT a CI.

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If you read the list of Metformin possible side effects @PeterH its quite extensive… Speaking of which, my wife Elspeth says I shouldn’t be allowed near the possible side effects note, you get in all medication nowadays, she recons if I read this, then I am almost bound to get some of the side effects, psychosomatic perhaps :rofl: :upside_down_face: :joy: I am on 1000mg a day, you’ll be on 2000mg, I believe is the maximum dose, so I still have some headroom with Metformin, I also take other meds for type 2 diabetes… Cheers Kev :wink:

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What I can say is that metformin’s gastrointestinal side effects could be alleviated by gradually increasing the dose since starting therapy.

There is no better cost-effective drug for type 2 diabetes mellitus. There were patients without metformin who needed MASSIVE doses of insulin with rather mediocre effects on serum glucose levels. After starting metformin, glucose levels achieved the target range with significantly lower insulin dosing.

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