This is weird...but then..what isn't with this disease?

Good to know, since I was 'stumped' at this may not be due to a 'virus'! I do hope he replies. I know he's busy--with his own patients, but sure hope he replies to my questions--at least once more!

Yes, I have seen many possibilities, but wanted his 'expert' opinion. Sort of thought he felt MM was always caused by a virus--attacking in different ways! I may have understood that wrong. Anyway--going to take them for another week--just to see if any improvement occurs! thanks for the comments!

 

Contact SS. It's your health and your condition. You can treat it with whatever you like.

 

I never had vertigo...I felt "unsteady" and out of it, but my hearing in the affected ear is what was the worst...the distortion, pitch discrepencies and the sound sensitivity...

I've had some tinnitus my entire adult life from playing music. Basically that is all I am dealing with. I can live with the ringing though. It's mild and a little annoying but no big deal.

 

So much is unknown. My dr told me that allergy was not thought to be the origin of the disorder but allergy could exacerbate the symptoms of it so if there are allergies present,, then treating them helps a lot. Perhaps the same is true of virus? I am told, the origin of mine is autoimmune yet treating virus and allergy help. Maybe for another person, there is a third or fourth thing exacerbating the symptoms. Wishing you luck in tracking down what will help you.

 

Unless I am incorrect but it seems the same few things keep coming up when people get some or a lot of relief from their symptoms.

antivirals-(includes JOH)
allergies-including food allergies and food intolerances
fungal infections
autoimmune(which includes migraines etc.)

Has any thing else ever been treated that brought relief from MM symptoms?

 

A lot of people get relief from the first line treatments of prednisone, diuretics, serc (outside US) ... Not me, but a lot of people.

 

Bubba, I totally agree with you on this one. The anxiety over being told you have this, I know, makes it worse for me. Doctor's really don't know what we have, that's why they call it Meniere's. I'm sorry this is frustrating for you, it is for me as well. Every little new feeling i ask "oh gosh, is this the disease? is it anxiety? Am i about to have a vertigo attack? Is this the end of my life as I've known it? will i have to go on disability one day for this?" I know, all these thoughts go through my mind. People have been through much worse with this disease than i have and they handle it with such great strength and determination. I admire those who go through this and just "keep on moving" and living their life. Sure wish i could. I'm starting to become obsessed with the whole thing. Just can't get it out of my mind....... I have almost constant lightheadedness and pressure in my head. Not sure what that is. It's really getting on my nerves Hang in there Bubba, you're not alone in your anger and frustration.

 

+1000

I hear ya sister......same here.

 

yup...the worse part is the fact that it's most likely for life and keeps coming back....prior to this, we've all been sick before, but no matter how sick you know you will get better, and even a few days/weeks/or even months you heal. Not with this sucker...you might get a few days of feeling better, but you can't even enjoy it because you know it's coming back soon...and eventually get worse (deafness, permanent loud tinnitus)

 

My tinnitus increases drastically when I tip my head back, and it decreases when I tip my head forward. My doc says this has to do with blood circulation. Perhaps you have some version of the same thing?

Bless all,
Ron

 

Reading

Reading you have 'almost constant lightheadedness and pressure in your head sounded like I posted it! Guess we're all in this 'boat' together. Getting a bit overcrowded--but 'it is what it is'! Hang in there to all of us--that's all we can do, and 'keep on keeping on'!

 

Vicki thanks for information. I have suffered with vertigo for almost 30 years never been told exactly what I have. Just bilateral hypovestibular function. No response on ENG, VEMP results showed SCD but Cat scan was normal. Doctor won't say I have Menieres because I don't have hearing loss. I have tinnitus and vertigo fall all the time. Now I wonder if its what doctor Gacek says it depends on what end of the nerve is affected. Very interesting.

 

Dr. Timothy Hain, one of our foremost Meniere's experts, said, "Meniere's won't kill you, but it will make you wish you were dead." To me, this shows a profound understanding of the mental and emotional damage done by Meniere's. I'd love to talk to this guy sometime. He's in Chicago.

Anyway, regardless of the frustration, depression, anxiety, fear, misery, etc., it seems that most all of us have this fervent hope that this thing will someday go away and we can get back to normal. That's why we hang in there.

We at least have this forum where we can share our frustrations and bitch about our condition. Keep on bitching! We're all listening and understanding.

Bless all,
Ron

 

BTW, Dizzybee (and others), I'm reluctant to say this, but here goes anyway:

I saw a counselor several years ago who recommended antidepressants. He saw how upset and obsessed I was, and he said, "They won't cure your Meniere's, but they will give you a better attitude toward it."

I felt like slapping the guy. Here he is sitting behind his desk in his nice office, perfectly healthy---what the f%$# does this jerk know about Meniere's? "A better attitude?" .....I thought, "You get this frigging disease and then talk to me about attitude!"

After I cooled down, however, I kind of understood. A negative attitude and anxiety can exacerbate Meniere's symptoms.

So I tried a couple of different antidepressants. They didn't work for me; they made me feel like jumping off a bridge. But we're all different, chemically and emotionally. Some Meniere's people say they really help.

Bless all and curse the enemy,
Ron