Meniere's — What Do You Think?

Let me start off by saying how I came to have Meniere's.

It was 2013, I was 18 (turning 19) & my life was average. A little stressful (okay, a lot) due to being bullied and an abusive ex-partner, but otherwise, my life was normal. My hearing was great, well above average for someone of my age. So nothing out of the ordinary there. I went to bed that night feeling fine, & was suddenly awoken around 3am to hear a beeping noise in my right ear. It sounded like morse code. I couldn't fall back asleep & when morning finally arrived, the noise was still there. By the next day, I had cracked it & grabbed a q-tip & stuck it in my ear as far as it would go. Obviously not a smart choice but I was at my wit's end. It did, however, stop the beeping! I thought "okay, was probably a bug or something." But just a couple of days later, in the middle of the night, the beeping returned. & within just a few days, the beeping had developed into an extremely loud roaring in my head/both ears. The beeping remained as well.

I went to the doctor & while my doctor is brilliant, he's not exactly... knowledgeable in tinnitus. He referred me to an ENT who said it was one of three things. Brain tumour, MS, or Meniere's Disease. I was then sent to an audiologist who tested my hearing & said it was in wonderful condition, & that the tinnitus is coming from my brain. After going back to my doctor, he diagnosed me with Meniere's & sent me to another audiologist just to be sure, who also said it was Meniere's. I was put on serc which did NOTHING for the tinnitus.

But this is where I have questions. I have had episodes of vertigo/dizziness, but I also have another health condition which if not looked after, can cause those episodes. I don't believe they came from Meniere's. I have minor balance issues (standing on a chair to change a lightbulb isn't possible anymore) but it's nothing serious, as well as headaches here & there. At the same time I was diagnosed with MD, I was also due to have my wisdom teeth surgically removed as some are impacted in my jaw & cause a lot of pain (I've also become a teetb grinder!). All this time later, I still never had a head scan nor have I had my teeth removed. After two years, my hearing is still in excellent condition. The tinnitus is louder, but that's all I've noticed. I've never had serious vertigo attacks, never had a major balance issue. I just find it strange that a progressive condition hasn't progressed at all? I do have "attacks" where my ears feel stuffy & hearing is challenging, but even during that, there's no dizziness, nausea, headaches, etc. & it just leads me to wonder... is it possible I have been misdiagnosed? I thought I had learned to control all the symptoms but then realised... were they ever truly there to begin with, at least from this condition?

The problem is, I live in a state that's not very well, uh.... educated on tinnitus. I feel going for another opinion wouldn't do much for me. But if I could find someone who is trained, do you think it would be work checking out, or is it just wishful thinking on my behalf? But honestly, something just doesn't seem right here.

 

Im assuming youve had an MRI? Anyways, it wouldnt hurt getting a second opinion. Preferbly in a state where they know what theyre talking about.

 

Маybe it perylimph fistula, but u do not have cause for it. Meniere in 18 years - is very rare condition.

 

Is your T low and roaring?

 

No, I never had any form of scans done on my head. I'm going in to get checked about TMJ (which I'm sure isn't the cause but it doesn't hurt to rule it out) since I do have a few symptoms similar to that, as well as FINALLY getting an MRI (though I'm really scared about that), & lastly finding a better ENT specialist who really knows what they're talking about. The one I saw... you know, he's good at his job but he's not exactly trained in Meniere's & tinnitus. It's costly but I think it's worth it to find out if there is another problem at hand instead.

 

My tinnitus is incredibly loud & roaring. It feels like what TV static sounds like, that's the best I can describe it.

 

Your hearing typically fluctuates with Meneires Disease. Additionally, ear pressure or fullness is consistent with MD.

 

Mine sounded like that...It was horrible. It was two toned...Like a ringing noise with a CRT static noise..Horrible. With hyperacusis and reactive tinnitis.

 

Yes.

Where in Australia do you live, if I may ask.

 

I'm in Hobart, Tasmania

 

Well, it's not exactly next door, but there is an extremely knowledgeable audiologist in Melbourne with considerable experience in tinnitus. Her name is Myriam Westcott. I know her very well and recommend her unconditionally. Why don't you give her a call and explain your situation to her? See if she thinks it would be worth your while to fly over for an evaluation so you can obtain an accurate diagnosis.

 

Thank you. I've sent off an email & will see what she says. Sadly Tasmania is not the place to get an accurate diagnosis in most areas.

 

Great. I hope it works out for you.

But on the other hand, I understand that it is a place of unsurpassed natural beauty.

 

If that was the case she definitely would experience hearing loss!

But if it's Menier's disease look for Regenokine.

 

i do not speak that Lady have it. BUT
Hohoho. u not right. is case maybe with three symtoms - T, hearing loss and dizzzines, it can be together and also only one-two of this.
injury may be small or large , the symptoms depend on the location -
it is logical.

 

@Max_fcktr , so you I mean she had a minor perilymph leakage and air trapped inside the cochlea?

 

it is only "for example".ENT however never diagnostic it, but is cause of T, if u know afterstory with barotrauma or smthg different factors u must thinkin about this.

 

Well I went to the doctor. He's incredibly thorough & strongly believes it is NOT Meniere's after all. I need to get a full head scan done in a few days & we'll go from there. He's suspecting MS but just wants to rule it out, but he's rather confident that it isn't Meniere's.

 

Its a very good thing if its not Meniers. Lets just hope its not MS either. MS is rare, and many things like anxiety can mimic MS. Crossing fingers for you

 

It's definitely not anxiety. I had my fair share of that several years ago & it was a completely different feeling. I'm hoping it's not MS & I suppose after two years there may be other symptoms apart from just tinnitus if it were that. But who knows. Every test will probably come back all clear & I'll be back where I started with no answers but I'm happy this doctor is taking me seriously!

 

How can he tell?
And yeah, an MRI is all about tumor(s).

Can you put foam ear plugs in and walk, jump and tell me if you hear bubbling/droning noise?

 

menieres occurs at any age - just for the records

 

An MRI is NOT all about tumours. It can show many other things. Tumours are always what people think of because they think of the worst.