Meniere's in your 60's

[peach-purls]

Hi Everyone

Just wanted to ask this question - is there anyone one on here that has been diagnosed with Meniere's in their 60's or is it one of those conditions that will happen well before you reach that age ?

Thanks

[RobWG]

Hi

I'm 60 and menieres was one of the suspects when my T and associated "head" symptoms started 4 years ago.

I'm still undiagnosed but it was determined I haven't got menieres. At the time it seemed considered relatively normal for somebody my age to develop it.

All the best

Rwg

[noisynora in reply to RobWG]

Hello, I was diagnosed with Menieres 4 years ago by an ENT consultant. However, after vestibular tests, a different consultant said not. I was told to take tablets for 6 months straight(by first consultant), which he said would keep it at bay. However, I could not tolerate the drug and stopped using it. Periodically, over these 4years I have experienced severe unsteadiness, and mild vertigo, which has lasted a week. This was very unpleasant, disorienting alongside a feeling of fear. Thankfully these episodes have been 2 to 3 times per year. On these occasions I did take the drug prescribed by the first consultant which did alleviate symptoms after 3 days but affect on my stomach was not pleasant, as before, but I just put up with it. I still don't know if these 'episodes' were due to Menieres but if not, guessing it was inner ear fluid buildup. I do have tinnitus which I manage well (do have severe spikes sometimes too), and am deaf in the tinnitus ear. I have written this in case some of it is helpful. I was 67 when diagnosed with Menieres and 63 when I had labrynthitis which, the second consultant said was possibly the cause of the reduction in hearing in left ear and then the tinnitus afterwards.

[Chumpiechops]

Hi, I was diagnosed in my 60’s

[PABLR]

I wasn't diagnosed until my late sixties but suspect I had had it for over a decade before it was diagnosed. Long story there....

[noisynora in reply to PABLR]

Hello Pablr. I have only just seen your reply. It would be really helpful to me if you could explain your experience of having Menieres in detail as I still don't know if my symptoms are Menieres or something else. Thank you

[PABLR in reply to noisynora]

I just wrote a huge long reply and went to check something and lost it. Can you send me an email address and I'll get back to you that way. I'll check [e-mail] which I don't usually use but it'll get us started.

[PABLR in reply to noisynora]

I found the reply I had lost! Here you go. Still happy to be in one on one contact.

For me, being diagnosed with Meniere's was a very long journey. Partly because the symptoms weren't always concurrent, partly because they came and went, and partly because I lived and worked abroad in two different countries, Japan and Egypt, while this was going on. I am British by birth and upbringing, left the UK in 1983 to live and work overseas and have only been back since for visits. Now retired in the USA.

Presumably you know the 'Four' of Meniere's. 1) deafness, usually starting as single-sided and often fluctuating. 2) Tinnitus 3) Vertigo and 4) a feeling of fullness in the ears. I have had the last of those only very rarely. Later deafness will also move to the other side, vertigo may go into remission.

The first indication for me, was one sided deafness that would get worse with different triggers, of which the most noticeable was differences in pressure, which meant every plane ride was a crap shoot of 'Will I be hearing at the end of this journey?' I'm not sure when the tinnitus appeared. I seem to have had it for ever, and I'm assuming around the same time as the initial hearing problems. In 2009 the vertigo started. I was very lucky, I had it off and on for two years, and then it stopped and I've only had one episode since 2011, which was last year and wasn't terrible in the grand scheme of things, but was before my cochlear implant and therefore worrying. Vertigo would last for anything from a couple of hours to sixteen hours and I would spend all of that time lying on the bathroom floor waiting to vomit and have diarrhoea; it was pretty extreme. My hearing continued to deteriorate and I was fitted with a HA in my right ear, which was moderately deaf, the second side to lose hearing and therefore my 'good' ear. Worked with that for a couple of years and then some hearing reappeared in my left ear which they hadn't given me a hearing aid for, but then did. Hearing aids proved to be less than stellar as although I could hear sounds I couldn't make sense of them. Last year I qualified for a CI and got that in December. It was the cochlear implant surgeon who I had been seeing off and on for four years who first joined all the dots. I told him about the deafness sequence and the tinnitus and then mentioned the vertigo and he was immediately - Bingo! Meniere's.

Betahistine can help with vertigo, possibly with deafness. It was only prescribed to me after the doctor's Bingo moment, and by that time I had no vertigo and it did nothing for the deafness. I can't get it in the USA, it has to come from Canada or the UK and I no longer take it although I keep an emergency stash in case the vertigo ever starts again in earnest. Other than that you live with it trying to find things that act as triggers and avoiding them. For me certain head movements seemed to presage a vertigo attack. I still don't do fast 360 degree turns.

If you want to contact me directly feel free. I wrote a blog which gave this background, maybe more, and chronicled the whole CI journey if you're interested.

Good luck. It's not fun.

[noisynora in reply to PABLR]

Thank you for clarifying your symptoms. you will get fed up of me soon as I am earnest in 'defining' your experience of vertigo. Mine was no dizziness as such but being totally 'out of sync' - my whole body felt light as a feather - it was difficult to stay focussed as if I turned my head it felt like I was about to drop from a great height. More bizarre symptoms followed. First attack only lasted two days. I was having dinner and stood up to leave the table and I felt as if I had no control of my body. It kept veering to the right. Anyway, since that occasion I have had 3 incidences which were really bad but wirst of it was a strong feeling of impendng doom. If you have had any one of these experiences of mine please let me know as it will be helpful. Last June was the worst of all but that said - after a week or so I woje up one mirning and it was gone and since then, thank God, I havn't had an attack since. Out of all these symptoms I have to say the 'impending doom feeling' was the hardest to deal with. The behistamine upsets my stomach to the point I can't eat anything so I'm pleased to hear it works for some people.

[PABLR in reply to noisynora]

I have had nothing like that and that sounds nothing like Meniere’s. Do you have hearing loss, tinnitus and a feeling of full es in your ears? Those are the symptoms used to diagnose Ménière’s disease.

[PABLR in reply to noisynora]

And vertigo is a feeling the room is spinning around you. It is really weird. I couldn’t stand. I taught on the third floor of a building. When an attack started I had five minutes to reach ground level before I was completely incapacitated. Luckily I taught middle school!

[Girkins]

hi I’ve got Ménière’s disease diagnosed in 2019 and my tinnitus is getting worse I think you get in old age rather then younger

[noisynora in reply to Girkins]

hello Girkins- this is a very late reply. I wonder if you could explain your experiences of having Menieres as I was disgnosed with it several years ago but two consultants disagreed with diagnosis - so iv'e never known if I actually have it. Over the years Iv'e had experiences of unsteadyness, general feeling of foreboding, walking to the right and visual disturbance. I had 3 bouts of it last year which were very unpleasant and I lost my confidence for a month after one particular episode last June. I was meeting my sister at railway station and she said she didn't recognise me because I was so different. I did recover a few weeks after as I woke up one morning and it had vanished.

[PABLR in reply to noisynora]

I would say this doesn't sound like Meniere's to me. Sent you a long reply.

[noisynora in reply to PABLR]

PABLR, I can't locate your long reply. please advise.

[PABLR in reply to noisynora]

scroll up. I see it higher in the thread.

[noisynora in reply to PABLR]

Thank you very much for your time with regard to your detailed and helpful reply. I agree, compared to your symptons, I don't think I have Menieres either. You mentioned the full ear feeling and that did trigger a memory of having that full feeling in both ears so thank you for that. Cheerio for now and kind regards.

[Britomartis29 in reply to noisynora]

Noisy Nora, I was diagnosed with Ménière’s in 2020-2021 and it doesn’t match your symptoms either. But I wanted to write and say that my cardiologist said that women’s heart problems and symptoms differ to men’s quite a bit and one difference they have found is a strong sense of impending doom! It was one of the first questions they asked me at the Mayo Clinic in the US when I was sent there for a full cardiology work up. “Do you have a sense of impending doom?” I burst out “what a bizarre question!” and laughed. But no one even smiled and they said, “in fact for women this is a major predictor of certain kinds of heart disease, we now know.“ I apologized of course and told them no, no doom, just severe chest pain and the inability to breathe or move much. It was not a heart attack or heart failure as feared; it turned out to be acute myocarditis. (Which they cured.)

So please do get your heart checked.

Vertigo isn’t dizziness; the world flips and spins and one is unable to stand or even sit; extreme and violent vomiting follow, usually for hours at a time; it is entirely incapacitating. You lose hearing in the affected ear but it can return some after the attacks. Tinnitus is a feature as well, louder before the attacks, as is ear fullness. Consider other causes, perhaps neurological? If you can see a good neurotologist (neurologist specializing in the ear) it can make a difference. Good luck; all this is no fun.