Meniere's Disease

what the hell! · 16-02-2013 7:03pm #1

Hey everyone, does anybody else suffer from this god awful disease. It is an inner ear disorder which causes vertigo, dizziness, tinnitus (ringing), deafness in the affected ear and also vomitting. Also it can lead to anxiety and depression because of not knowing when an attack is going to hit. I have had it in my left ear for about two years now and although the attacks are not as bad as when I first got it, I still have the dizziness and ringing in the ear. There is no cure for it and doctors don't even really know what causes it. Just interested to hear from anyone that may have this disease or anyone that you might know who has it.

Fuh Q · 16-02-2013 7:24pm

Hi, I had all those symptoms and was given medication for vertigo and was told to take paracetamol to help thin the blood. The doctor only ever said "it could be any of a number of things" (think I need a new doctor).
I was almost 20 stone and my cholesterol was 7.3 .
I went on a diet and list 4.5 stone in 6 months and got my cholesterol down to 5.3 .
My symptoms disappeared and have not come back.
My honest thoughts are the that the narrowing of the veins due to high cholesterol caused circulation issues which in turn caused my problems.

Back to you, how severe are your attacks ?

what the hell! · 16-02-2013 8:55pm

Wow well done to you that was great going! Yep it was probably the high cholesterol that was causing the problems. With this thing though it's very hard to know whats causing it! My attacks thank god are not as severe as about a year ago. I had major vomitting bouts, intense sweats where my clothes would actually be soaked and of course the dizziness and falling over. These attacks might last for an hour or two. After the attacks you would have 3 or 4 days of just feeling generally crap and with 'brain fog'. The way it seems to have gone now is just general dizziness and tinnitus with the constant brain fog. If it would stay this way without the vomitting and sweats and crazy dizziness I could nearly cope but obviously it would be better if it shagged off altogether!

Dizzyblonde · 17-02-2013 9:47pm

Have you had the full range of vestibular tests done? If not, you should ask your GP for a referral to an ENT/otolaryngologist. I sympathise with you because I've been living with an inner ear disorder for a long time although I have only slight tinnitus, and no deafness or nausea. I do have a degree of feelings of motion/disequilibrium almost all the time.

what the hell! · 18-02-2013 10:19pm

I've had no tests done to be honest! Got my hearing tested and that was it. Was sent to an ENT and I was in there for about 10 mins, he listened to the symptoms and said yep Menieres! Had a CT done maybe 2 years ago and that was all clear. I'm thinking of going back to the ENT but I dunno will he do anything differently

Dizzyblonde · 18-02-2013 11:32pm

what the hell! wrote: »

I've had no tests done to be honest! Got my hearing tested and that was it. Was sent to an ENT and I was in there for about 10 mins, he listened to the symptoms and said yep Menieres! Had a CT done maybe 2 years ago and that was all clear. I'm thinking of going back to the ENT but I dunno will he do anything differently

Some ENTs subspecialise in inner ear disorders. There's a public otolaryngology clinic in Beaumont, it's definitely worth getting a referral from your GP. There are vestibular trained physiotherapists who can give you exercises to do if the specialist thinks they'll help your condition.

GF2013 · 20-02-2013 6:11pm

I've been having inner ear issues since July and am starting to worry that it's Meniere's! Can't believe the ENT gave you that diagnosis without doing any tests, it's quite a scary diagnosis to give on such a whim!!! Go back to the ENT and ask him to send you to a physio who can give you vestibular rehabilitation exercises to do that can help with balance, or alternatively look one up in your area and go yourself. I'm doing these since Aug and they are definitely helping me to cope with the vertigo a bit better. I also find that ginger tea is a life saver for the nausea and vomitting and i've cut out coffee for the last two weeks and haven't had a very bad day since. Apparently it can be controlled to a degree with diet and lifestyle changes. I've also started to do tai chi, which is out of character altogether for me but it's supposed to improve balance and relaxation so i'll take all the help I can get. Did they give you any medication? I find serc and stemetil are good but they say these can hinder recovery in the long run. Do you find that busy/noisy places make it worse? Can you work? I work in a call centre and am getting worried I may not be able to go back there cos it's so noisy I don't think I could handle it. I hear ya on the anxiety/depression side of it too, i'm terrified going anywhere cos it's so uncomfortable even if i'm not dizzy i'm worried i'll get dizzy so i'm not really going to places I used to, and supermarkets are definitely a no no, for the time being anyhow. Defo find a physio for yourself and try the ginger tea it really does help!!!

what the hell! · 03-03-2013 2:16pm

Hey so I got back on to the GP and he contacted the ENT who's going to bring me back in and actually do some tests this time round! He said the symptoms I have right now (constant dizziness) doesn't sound like menieres so we'll have to see!

what the hell! · 03-03-2013 2:18pm

GF2013 wrote: »

I've been having inner ear issues since July and am starting to worry that it's Meniere's! Can't believe the ENT gave you that diagnosis without doing any tests, it's quite a scary diagnosis to give on such a whim!!! Go back to the ENT and ask him to send you to a physio who can give you vestibular rehabilitation exercises to do that can help with balance, or alternatively look one up in your area and go yourself. I'm doing these since Aug and they are definitely helping me to cope with the vertigo a bit better. I also find that ginger tea is a life saver for the nausea and vomitting and i've cut out coffee for the last two weeks and haven't had a very bad day since. Apparently it can be controlled to a degree with diet and lifestyle changes. I've also started to do tai chi, which is out of character altogether for me but it's supposed to improve balance and relaxation so i'll take all the help I can get. Did they give you any medication? I find serc and stemetil are good but they say these can hinder recovery in the long run. Do you find that busy/noisy places make it worse? Can you work? I work in a call centre and am getting worried I may not be able to go back there cos it's so noisy I don't think I could handle it. I hear ya on the anxiety/depression side of it too, i'm terrified going anywhere cos it's so uncomfortable even if i'm not dizzy i'm worried i'll get dizzy so i'm not really going to places I used to, and supermarkets are definitely a no no, for the time being anyhow. Defo find a physio for yourself and try the ginger tea it really does help!!!

I don't find noisy environments a problem which is good because I'm a primary school teacher

Jenson86 · 02-02-2014 8:17am

I am interested to see there is such little discussion on this from an Irish standpoint. I am 27 and have been diagnosed with this disease in my left ear last week. It started with tinnitus about 4 years ago and low frequency hearing loss. Had my first vertigo attack in December 2012 and have had a few sporadically since then. This is also accompanied by a feeling of pressure/ fullness in the affected ear.

My ENT did not want to label me with menieres right now because I am young but the way i describe the symptoms has led him to be 99% sure its what I have. I have not had any testing except for an MRI 3 years ago and a CT 6 months ago to rule out organic causes. Right now I am looking into a treatment by an Australian man who has researched into the immunological causes of the illness and believes that menieres is the result of an infection in the middle ear that never clears up because the immune system has become used to it being there.

Dizzyblonde · 02-02-2014 4:35pm

Hi Jenson86, I think our small population goes against us when it comes to meeting others with ongoing inner ear problems. I don't have Menieres but I have a long standing problem with vestibular dysfunction. I've been on a few forums over the years and haven't met many Irish sufferers. I don't think I've met any Irish Menieres sufferers.
Diagnosis and treatment for inner ear problems have come on in leaps and bounds in recent years though.
I'm surprised you haven't had any vestibular testing. Have you been offered the cloric test, rotary chair test or postural osteography?

Jenson86 · 02-02-2014 5:41pm

Hi Dizzy,

No i haven't been offered any testing only those mentioned in my previous post. I am not always dizzy but have occasional spins and sometimes vertigo with nausea and vomiting.

Dizzyblonde · 02-02-2014 8:44pm

No doubt you'll be offered vestibular tests at some point. Good sites for reliable information are www.dizziness-and-balance.com and www.vestibular.org

Jenson86 · 03-02-2014 4:55pm

Consultant hasn't offered any test so far. I asked him for a referral to Cambridge to have the TTEcog test done so he is willing to do that. Will have to pay for the test myself. I am planning on starting a treatment from an Australian man who was bilateral and is now free of the disease. He has some people in Ireland on the treatment with some very positive results.

Dizzyblonde · 03-02-2014 6:07pm

Good luck with the treatment, I hope it works well for you because I know that Menieres is a nasty condition.

grahamcpole · 04-08-2014 11:46pm

Hi Jenson86

I'd be grateful if you could tell me the details of the Australian guy that you mentioned above. My dad is suffering from the disease so anything to help would be great. Thanks.

dutopia · 29-10-2014 3:00pm

Over the last 6 months or so I have developed extremely loud tinnitus in my left ear. Sometimes I find it hard to pop this ear, it can also feel stuffy at times and this reduces my hearing - if the stuffiness goes away I can hear normally again. Sometimes I feel light headed and a couple of times I have had vertigo - twice in particular that was severe and caused nausea and vomiting. My left eardrum also looks sunken and is flappy, i.e. when I try to pop my eardrum it moves in and out but doesn't pop well.

When I was a child I had at least 2 operations installing grommets inside my ears, I don't have any more details on these surgeries.

I have had no other ear problems since I was a child until now.

All of these symptoms are in my left ear only, my right ear had never caused any problems.

It kind of sounds like Meniere's but i really hope it's not. I have an ENT appointment in 2 weeks.

jenson13 · 27-01-2022 7:13pm

https://www.boards.ie/discussion/comment/83480874#Comment_83480874

Hi there,

just wondering if you even had that follow up review with the ENT to get to the bottom of your symptoms?

Meniere's Disease

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