Intermittent hearing loss

My hearing loss is intermittent, I found this old thread which didn’t spark much interest so I guess it’s not common:

https://forum.hearingtracker.com/t/intermittent-hearing-loss/23835

I am 83 yrs now. By May 2017 (my hearing had been deteriorating (though I could converse, hear phone/tv etc Ok) and I had some tinnitus and had attacks of (quite extreme) vertigo over the preceding months/year.

A hearing aid (BTE+ear mould) was prescribed for my left ear and I had an MRI scan and balance investigation. The vertigo was declared not to be BPPV or similar but due to some unknown brain problem, nothing showed on MRI.

Mid November I started a new chemo (I’ve had CLL, chronic lymphatic leukaemia, for 25yr & a lot of chemo :)), Ibrutinib which is 1 pill daily forever and Lamivudine for a lurking remnant of hepatic B which might get excited by the chemo. There is no known association of either of these with hearing/tinnitus/balance.

Mid December I suddenly lost all hearing in my right ear, ie my good one. Audiologist later prescribed a BTE+ear mould for right ear.

Early March 2018 (before hearing aid received hearing in my right ear returned to normal (and left ear was possibly better) and tinnitus had disappeared!

Late March 2018 hearing re-tested & right ear pronounced OK, so not my imagination!

Early 2019 hearing in both ears has deteriorated again and now so bad I cannot use a phone or hold a conversation, hear tv etc — can hear the sounds but not make sense of them unless the subject is known.

Mid 2019 new hearing aids for both ears (BTE + thin tube), work OK, not perfect of course :(.

Tinnitus has got much worse, almost “deafening” at times but I think it comes and goes and I think it is somewhat “positional”, ie better lying down, worse standing up.

So, I am writing this today (May 24, 2020) because my hearing in my left ear (the original bad one!) has retuned, to the extent I am not using the aid and can hear tv on the iPad. I should mention that throughout this time I have found the sound from my iPad to be vastly more intelligible than the regular tv to the extent that I haven’t used the regular tv for months — this may help someone.

I don’t expect there will be a sudden rush of responses to this but I’ve written at length as it may find someone with a similar experience or help in some way.

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You have had a rough time.
I am not a doctor of any sorts. Just reading through your post the first thing that came to mind is Meniere’s Disease. We have a few members who have it and the symptoms sound similar to yours.
@kevels55 might be able to comment on this.

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Thanks, I didn’t mean to come across as “rough time” because even my hearing problems are much less than many on here and of course no problems financing since it is covered by our NHS.

Menieres was the consultant’s first thought and he prescribed the (usual?) medication for it pending investigations but the balance centre where I went for testing ruled it out.

Thanks again!

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Hello Sphexx

Somethings are similar to my old symptoms of Meniers, others are not, but Meniers displays itself in different ways depending who has it? I know it is a very difficult disease to actually diagnose in a definitive clinical way, it can have major debilitations in some People and not so in other folks, I first heard the name Meniers in 1993 when my Doctor at the time said; “he thought given my symptoms, that I had Meniers”! Now at that time I had no idea what Meniers was… Suffice to say I soon read up on what to expect, for me it lasted approximately 13 years, it was a gradual increase in “All” of my symptoms, it just got progressively worse year by year, it was probably at it height in 2003, Balance problems, Nausea, Dizziness, Extreme Tinnitus, Severe Vertigo, Extreme Distortion in my hearing, I could not comprehend anything spoken to me, in was just a garbled noise! I had to lay down and close my eyes as the walls would be moving and the ceiling coming down to meet me, I got what was called cluster attacks, these could last a day or 2, perhaps a week and occasionally 2 or 3 weeks, at first it was a living hell, but eventually I came to understand when an attack was imminent, my “Tinnitus” would go off the scale and the “Distortion” would would start and I would just lay down and ride it out till the symptoms started to ease off, you could never actually tell how long each attack would last, might be an hour or 2 it might last all night or all day… It was such a relief when it stopped but you were acutely aware it would be back sometime soon, I could plan nothing, I was unable to work for anyone, whom would employ me? I remember going on holiday we were staying in a caravan near a very beautiful beach for a week, me and the wife, 3 kids and one of the children’s friends, 6 of in the van and it rained nonstop for the week and I couldn’t move from my bed for a week…My wife still calls it the holiday from hell. There are triggers that do not help, stress is a major one and it can lead to a vicious circle with worry over Meniers… Try to avoid salt, tea, coffee, alcohol, shopping malls with uniformed flooring can also set it off… Doctors told me each attack was gradually destroying what little residual hearing I had left, but thankfully it gradually burned itself out, attacks got less and less, maybe once or twice a month, then every month or so, eventually 6 months and then nothing by 2006, I was probably attack free by then, but I would say it was years before I actually believed it was gone, by that time my hearing was challenging to say the least, my balance not so great, but that was heaven in comparison to where I had been! You said you have been on Chemotherapy, Chemo can and does sometimes reek havoc on certain folks hearing, it can leave some people with a mild/moderate or severe loss. Hopefully you do not have Meniers and there is some other logical explanation as Meniers can be a living nightmare, if you recognise your own symptoms in my old ones ask for a referral to ENT…Edit here… Just noticed your other post on you seeing a consultant and visiting the balance centre, apologies! Good Luck, cheers Kev.

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Hi Kevel, Thanks for the reply. A lot of what you say resonates with me but I don’t think my symptoms have been as extreme as yours and I am very sorry to hear how bad it was for you. My tinnitus in particular is sometimes so bad it makes me feel sick/confused and I have some disturbance of vision (bits of the visual field shimmering or ‘pixellating!).

I think I’ll have to look again at Meniers (although it was excluded) since the tinnitus was only minor back then.

Thanks for sharing your experience,

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Hi Sphexx

You are welcome… In truth, humans are rather resourceful creatures, we adapt to any bad or poor situation, pick the best bits from whatever is thrown our way, although I have to admit there are times when you say to yourself, is it worth it? Truth be told, life is full of hope we just have to look for it, although when you are in a dark place mentally, it is difficult to see any light… I read somewhere that Meniers could burn itself out and I clung to that thought like a limpet mine :slight_smile: eventually this came to fruition, I think life makes us stronger and more so if you can help others, perhaps with some kindly advice to those whom are going through the same or similar situations, hope is most definitely a good thing! Like you and millions of others “We are survivors” and ultimately that is what human nature is all about, you take it on the chin, dust yourself down, access the new you and try to move on as best you can… The very Best of luck in your quest to find some answers to your symptoms and all the best in defeating the Big C, you have my extreme admiration! Cheers Kev