meniere's disease

walshy123

Hey all

Does anyone have any experience with the above, or more specifically know a doctor who does?

I have been suffering with my right ear for over two years now and have not been diagnosed with anything. The problems are sporadic and it can be weeks/months between episodes. However, its happening hourly today and Im not happy with the wait and see approach that has been adopted by the 4GP's and 1 ENT consultant that have seen me.

At first my symtoms were dizziness, nausea, sweating, and loss of hearing. as time went by i am now just left with dizziness and loss of hearing (to a lesser degree). it is always in my right ear.

as i said episodes are sporadic and have ocured in all types of situation. which can be embarrasing and dangerous.

I have been on medication but no improvement, have had an MRI, been put on nasal spray, but still no clue what the problem is.

what I want to do know is go to someone who has dealt with meniere's and let them rule it out or diagnose it or just in general get to the bottom of this

larko

I read your question a few weeks back but didn't respond as I was going to a Audiolgy conference and Menieres was going to be covered. I thought I would find out for you while I was there.

Menieres- high endolymph pressure in inner ear. Feeling of fullness in ear, hearing loss, tinnitus, vertigo etc.

First of all, have you actually been diagnosed with Menieres by the ENT? Menieres is actually quite rare but a lot of people get told its Menieres when it could be something else (blood pressure etc). The fact of the matter is that nobody knows what the cause of Menieres is. But the results for sufferers is dramatic and from what you said you seem to have a lot of the symptoms.

I assume you must be on anti-vertigo or diuretics for the medical part of it. The only thing that I have heard suggested is a low salt/spice diet,

What you have is a build up of pressure (fluid) in your inner ear and this is causing you the problems. They say that salt retains fluid and cutting down on it may help but again it is all just guessing. There is surgery available but they are unlikely to do that.

It looks like anti nausea drugs and maybe diet are the only things you can do for the moment until the ENT decides what can be done.

All the best.
Larko

walshy123

no like i said i would like to go to someone who can diagnose it or rule it out and hopefully figure out what the problem is. it has been mentioned to be but not diagnosed.

im not really happy with the treatment i have received so far and do not like the wait and see approach that has been adopted by all the medical professionals i have attended.

if you know of any ENT consultant or GP who has good experience in the area i would really appreciate contact details!

Dizzyblonde

Hi, if at all possible you need to see an ENT who subspecialises in vestibular problems. These are sometimes called neuro otologists or otolaryngologists. There's a MR. McConn-Walsh in Beaumont hospital (I haven't seen him myself but you could get your GP to look into him). To diagnose inner ear problems you'd need vestibular testing - I have an inner ear disorder and had these tests years ago.

I'm a moderator on a very good online support group for people with inner ear problems -nobody there can diagnose you but you'll find lots of helpful information and coping tips, and support. You can read about other peoples' experiences too. It costs nothing to join, you should take a look.

www.dizzytimes.com

RobFowl

Menieres is a horrible condition and for what its worth you have my full sympathy. The is no one definitive treatment but Doctors including ENT specialist have no problems with people seeking second opinions.
Mr McConn-Walsh has an excellent reputation but you should go back to your GP first and ask their advice.
Just be aware Second opinions threaten no-one and Doctors have no problems at all facilitating them.

treecreeper

i have mitochondrial disease and was an inpatient at Queens Square London neuro hospital. the consultant there said i was suffering from secondary menieres but its dreadful and i still wonder is this the problem at all.
i get gushing mad tinnitus and feel as if the whole ear is disturbed. its sudden.
i feel it usually comes on with stress and i need to lie down and be very very still. its the most ghastly sensation.
testing my ears i had hot water poured into them and then cold, gorgeous torture.
i am severely deafened in one ear and profoundly deaf in the affected ear.
i also get blinders with this.
is there a professional i can make contact with to get some help, i think i further need investigation on the vascular system as i was once a heavy smoker
i now am using a powered wheelchair and basically i am fu........ed!

Vorsprung

treecreeper wrote: »

i have mitochondrial disease and was an inpatient at Queens Square London neuro hospital. the consultant there said i was suffering from secondary menieres but its dreadful and i still wonder is this the problem at all.
i get gushing mad tinnitus and feel as if the whole ear is disturbed. its sudden.
i feel it usually comes on with stress and i need to lie down and be very very still. its the most ghastly sensation.
testing my ears i had hot water poured into them and then cold, gorgeous torture.
i am severely deafened in one ear and profoundly deaf in the affected ear.
i also get blinders with this.
is there a professional i can make contact with to get some help, i think i further need investigation on the vascular system as i was once a heavy smoker
i now am using a powered wheelchair and basically i am fu........ed!

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