Support and Advice Needed for Ménière’s

[slipware]

Good morning fellow Tinnitusites.

Having had the SSHL six years ago now, caused by a TIA from a previously undiagnosed heart condition, I have now been diagnosed with possibly Ménière's. I know @glynis has this.

I'm having vertigo in the night, nausea and aural fullness, distorted hearing and horrendous tinnitus.

Is there anything I can do to help myself please? I know low sodium diet is recommended. I'm almost at my wits end, it's bad enough having tinnitus, but the rest is flooring me.

Need help, advice and some luck.

Thank you.

 

[glynis]

Cinnarizine 15mg for Menieres can help and Betahistine.
Sorry to hear you possibly have Menieres so make sure ENT and your doctor get you on medication as soon as they can.
Love glynis

 

[dingaling]

Meniere's is a horrible condition and "gets you" from time to time when you have an attack. The good news is that Meniere's usually "burns itself out" in the end. The timescale however is not known and depends on many factors including its severity and one's diet.

 

[glynis]

@slipware ,
Welcome pm me and I will reply as soon as I can.
Love glynis

 

[glynis]

@slipware
How are you doing with your other symptoms and tinnitus, I remember what I went through and would not wish it
on anyone and can imagine how your feeling and not knowing when an attack will rear its ugly head and plans that have to be changed and day to day living is hard going .
I'm here if you need me or by PM.
love glynis

 

[1MW]

@glynis what symptoms do you have?
Meniere is a non existent disease, in fact it's a symptoms list that have a specific cause like herpes, autoimmune, allergic etc but Meniere is not a real disease.

Some doctors told me that I have Meniere because they must make a diagnosis...

My symptoms was 2 times sudden hearing loss + tinnitus, the hearing came back with corticosteroids. Also before sudden hearing loss (7 years and 1 year before) I had 2 episodes of vertigo without hearing loss symptoms.

Glynis your tinnitus & hearing responds to corticosteroids?

 

[glynis]

I had all the full blown symptoms and under a hospital Meniere's Disease specialist for many years.
It is a progressive disease and over time you reach burnout!

My inner ear balance has almost gone and left with severe Bilateral tinnitus and hearing loss and have duel purpose hearing aids and also a pair of white noise generators.

I went through hell over the early years with constant attacks and to put it in full detail could upset anyone thinking they may have it.

I'm fully geared up on Meniere's and yes it is a progressive disease.
Love glynis

 

[1MW]

Have you tried antiviral treatment or corticosteroids?

 

[glynis]

With Menieres I also suffer with breathing problems and under the hospital and consultant.
Steroids I have taken for many years and from a week to months at a time and now steroid dependant .

 

[1MW]

Your hearing & tinnitus improves with corticosteroids?
My tinnitus stops/lessens with corticosteroids

 

[glynis]

Hearing ? No
Tinnitus through the roof 24/7 damadge due to menieres...it will never go ....
thats all im saying about it now as it's really hard going and knowing it will never stop .....
I need to look after my mental health and not look back..

Love glynis

 

[GregCA]

Hearing ? No
Tinnitus through the roof 24/7 damadge due to menieres...it will never go ....
thats all im saying about it now as it's really hard going and knowing it will never stop .....
I need to look after my mental health and not look back..

Love glynis

Props to you Glynis for all the crap you've gotten from this )(#@^*$)@# disease and yet not only deal with it with such courage but you also are mindful of keeping some details untold to avoid unnecessary anxiety upon others.

I hope you find some relief soon.

 

[PaulaO]

This is what I will probably be diagnosed with, once my GP finds an ENT with an opening in their schedule! Sheesh.

My symptoms was 2 times sudden hearing loss + tinnitus, the hearing came back with corticosteroids. Also before sudden hearing loss (7 years and 1 year before) I had 2 episodes of vertigo without hearing loss symptoms.

I am not a doctor. I have only researched my symptoms extensively and discussed this with my doc. Sudden hearing loss is more along the lines of the acoustic neuroma, isn't it? This is why GP and I are leaning toward Meniere's.

The pain was intense with sudden increase in ringing, along with being dizzy. I couldn't watch things move or it got worse. The dizziness decreased by the ringing and ear pain continues (with the pain being sporadic).

 

[GregCA]

Sudden hearing loss is more along the lines of the acoustic neuroma, isn't it?

It isn't.

 

[slipware]

Thanks for all the replies. I'm not sure I have attacks as such, yes, I have dizzy spells, but I'm constantly feeling nauseated and fuzzy, with as @glynis says, severe bilateral very very high pitched tinnitus. A feeling of fullness in my right ear and my face feels odd. AND IFFY BALANCE. I'm struggling some days, but other days I cope, the tinnitus is the least of it I think. I have another referral to ENT to come. Reading what people are saying, Ménière's presents differently.

Glynis. Will pm you.

Ps. I've joined the FB Hub. I dint want to post publicly on there as I'm not sure who sees it. Is it everybody or just the members of this terrible affliction?

 

[slipware]

@glynis I can't see how to pm you. Will do it via messenger

 

[glynis]

The Tinnitus Hub face book group members can only see your posts and if on your main fb wall only group members can see them.
Love glynis x