For you latenened-deafened/hoh people...

I am one of the members on here with Meniere's. I had violent vertigo attacks with my left ear. I MAY be going bi-lateral but have not been having vertigo...just dizziness. I go to see my neurotologist today. (that's a specialized ENT with extra training.)

Feel free to PM me. I will be gone today as I have to travel to see the specialist and he's going to give me an audiogram as we think my hearing has really deteriorated.

Holly
 
::hmm:interesting about the high-sodium diets. I don't eat heavily-processed fast food or add table salt to what I eat so for me I don't think it would be a factor.
It is nearly impossible to avoid sodium unless you cook your meals from scratch. No soups, salad dressings, processed foods.
 
Is there some hesitation from the medical community to diagnose Meniere's? I've studied what's been published and there seems to be a "tastes-great/less-filling" divide over whether or not it's a legitimate disease.

Which kind of pisses me off -- since the "classic" symptoms are far-ranging and different from individual...

For example, my hearing has steadily deteriorated over the past twenty-four months. I've charted it and it's a rapid decline, faster in the left than the right. Right is now at severe-profound loss, but db loss is in upper, not lower freqs. Speech discrimination is about 40-60 I think. (r/l) next audiogram is in Feb but I can already tell the difference in my hearing from the last one as my aids seem to be getting less and less effective...

Ringing in the right ear started at zero and has progressed to constant, loud, and can drown out my harley. Left ear is beginning to ring, but I have to concentrate to hear it over the right - it's definitely there.

Dizziness is periodic -- have only tumbled over a couple times - but it doesn't last. Usually comes in waves - longest period has been about 30 minutes.

Still can't get my primary care physician, or the audi to say the "M" word....

Is this ... um, normal?


BTW....to answer OP -- I listen to alternative music -- commented to wife one day: "I love alternative music - I just wish they'd sing it without mumbling the words...." That was my first 'clue'...
 
Wyntr, that's strange, my problems are with my left ear, too. Possibly my right and I'm just not noticing yet, but even now with my heater below me running, I can't hear very much on my left side. Weird, right?

And I really don't know, up until I started this topic I had no idea it even existed. I noticed it last night but thought it was just the way I was laying on my pillow. I'm starting to get worried. My mom wont' believe me because I'm a hypochondriac, so getting an appointment behind her back is going to be a hassel, but it's got to be done.
 
saywhatkid, yup, you're right.
I do make my own salad dressing and generally avoid commercial soups. I don't eat lunch meat or cheese.
 
Sallylou, that's very cool that you posted the link. I myself don't have Meniere's, but I didn't even know that there is a specific gene attached to it.
 
I'm not saying Meniere's isn't legit - not at all -- I was only pondering why the mainstream (or established) medical centers <koff>Kaiser<koff> appear (at least to me) to be so reluctant to diagnose....
 
I'm not saying Meniere's isn't legit - not at all -- I was only pondering why the mainstream (or established) medical centers <koff>Kaiser<koff> appear (at least to me) to be so reluctant to diagnose....

$$$
 
what were the first signs? I'm pretty sure I have problems with my hearing, but I don't have any proof, nor do I know that, if I do, that it's getting worse. .

I don't have Menieres, I have otosclerosis, and tinnitus. The signs of hearing loss I had were

-dh and kids were 'mumbling'
-So was everyone on the tv :aw:
-I thought I had a 'low-grade ear infection' causing the ringing
-I often completely missed co-workers questions or comments and my supervisor thought I was ignorning her.

If you have the opportunity to see an ENT, you should.
 
Cayisgreat, I'm sorry you are having problems and understand your search for an answer. Please remember there is no substitute for a professional examination. People will post their own experiences and toss our potential diagnoses with just enough knowledge to be dangerous. When you get free opinions, you get what you paid for. Please find a doctor, clinic, or audiologist to explore your symptoms.

No offense to the many well-intentioned ADers.
 
Cayisgreat, I'm sorry you are having problems and understand your search for an answer. Please remember there is no substitute for a professional examination. People will post their own experiences and toss our potential diagnoses with just enough knowledge to be dangerous. When you get free opinions, you get what you paid for. Please find a doctor, clinic, or audiologist to explore your symptoms.

No offense to the many well-intentioned ADers.

Well said.
 
Well said.

Oh, I know, I'm not trying to DX myself, but thank you. :) This was mostly just a me-complaining and/or asking-for-similar-experiences for the in-between time before I can actually get to someone. It could be anything- wax buildup, for all I know.:P When I get the time/money I'll definitely go see someone about it.
 
Just wanted to update everyone (and myself, I'm horrible at keeping track of things). My mom says it was gas (I have to laugh at this). Even if it was gas, it was the scariest thing that's ever happened to me.

I hadn't eaten anything but a piece of kraft cheese the whole day, until about 5:30-6PM, when I (stupidly) ate 4 pieces of pizza. I didn't scarf them down, though I had them over the course of the evening. I may have had one more, I don't remember. Around 10, my upper stomach started to hurt sort of. It felt like someone had dropped a bowling ball in the middle of my stomach (like RIGHT under the breast area, so not really in the chest, but really high up in the stomach). It wasn't in my lower stomach at all, which I thought was weird, as I'm on my period right now and first chalked it up to cramps. I felt the urge to be sick, but there was no gagging or retching.

It got worse and worse, until I started to feel dizzy. At that point, I went to my parents room and told them something wasn't right. I made it to the bathroom where I quickly had to strip down, because it had suddenly gotten very hot.

My vision started to get really bright, I wouldn't really say it was blurry, because it wasn't, but it seemed like everything was moving in slow motion. My hearing dropped considerably, and I heard a loud ringing. It felt like there was a ball of pressure around my head, like my mom was really far away. It's hard to explain. It wasn't muffled, but it just sounded like when you mess with the dials on the radio, and it comes through very quietly, but clearly. I don't remember if it was one ear or both. My arms started to feel sort of tingly, and my mom told me it was a panic attack. I've had anxiety my whole life, and NEVER have I had a panic attack like that.

Everyone insisted it was gas (my mom and sister both said they'd experienced the same symptoms before, my sister a year or two ago, and my mom when she was younger,) so naturally they talked me out of going to the ER saying it was gas.

The whole world was spinning, my neck was weak and slack, my arms wouldn't cooperate with my body. My esophaugs burned and my tongue felt like sandpaper and I was on fire. When I looked in the mirror I was paler than I've ever been. After it started to subside, I got in a cold cold shower, then laid down the rest of the night. I felt mildly dizzy the next day (probably not from eating, and from sleeping all day), and today I feel fine.

I have a physical coming up, and I'm bringing it up. I'd rather hear it was gas or something than go on thinking I had a minor heart attack, brain tumor or stroke at 21 (leaving me afraid I'll die in my sleep at night).

Anyway, I wrote this, like I said, to update you guys and myself, and because I wanted to know if anyone else had these symptoms. The stomach ache seemed strange to me, maybe it was unrelated. Oddly enough, I have been belching a LOT lately, so maybe it WAS gas/gas was one contributing factor. But the hearing dropping out just didn't seem to fit in.

So a lot of things are fitting in with Meniere's, the tinnitus, the hearing drop, the dizziness, the nausea; but some things aren't: the stomach ache, the paleness, the tingly arms, the belching.

So, yeah. I'll talk it over with my doctor. Thanks for the suggestions and advice, I'll bring it up when I go, and we'll see what happens. :)
 
cay...I also started losing my hearing similar to yours except mine started with a bad cold...the loss has come in at least 3 significant drops, worse in my left ear to the point where i have virtually nothing left in it and the right is not much better. I have ringing 24/7 while I am awake, thankfully lets me sleep ok though..

The ENT thought maybe Menierres but after completing a balance test they figure it was just a virus that knocked out my hearing...

I also have occasional bouts of "disorientation", I hate to call it dizziness case its not that bad...it feels like someone boxed me on my ears, but only lasts seconds and it is gone...happens a few times a day.

Unfortunately even with an aided ear I still have very poor speech recognition and therefore I am going the CI route
 
Big Smile , as you can see members here are eager to offer help and information, as well as share personal experiences. I hope all of this helped.
In my case , I had NO warning of any kind, came home from work, took a shower, hit the bed, When I opened my eyes in the morning I knew something was wrong..pressure in both ears..I ran into the bathroon..whoa!!
spinning, vertigo and started screaming..That's when I realized I could not hear my own voice....I made my way to my neighbors...told her what was happening, she said shhhhhh! your screaming..lol..I told her I could not hear my own voice she freaked to me to ER. They immediately sent me to Johns Hopkins here in Baltimore, I was admitted and the Drs there ran tests for 2 weeks. I was finally given the bad news. I have a gene in my DNA screen that matches one in my maternal grandmother, who also went stone deaf mad aged. So since it was no disease and I was tested and unable to used any type of hearing aid. The final word is that I could have gone deaf at any point in my life, I carry an extra gene. My advice is don't wait another day. Go and get an exam by a professional, perhaps get a few referrals from your local hospital or trauma center. I wish you the very best...I can tell you that day I thought was the worst day in my life. I was very wrong. But thats another story....I now am in the position where i hear nothing out side my gead, not even my own voice, BUT inside is full of constant noises, dogs barking, radio stations , people talking to one another, someone whistling and all kinds of bands and whooooshes! Drs thought I was hallucinating, until I was sent to a neuro-psychiatrist, who after testing me assured me and my Drs I was not hallucination I had what is called Memory Recall. This happens when the brain recieves sound, and then is suddenly shut off from the sound, it actually recalls noise from my past. whew! So please, go asap and if you dont get answers try someone else until you do. I will keep you in my thoughts and prayers...hope you find your answers..Peace to you M♥♥♥
 
Big Smile , as you can see members here are eager to offer help and information, as well as share personal experiences. I hope all of this helped.
In my case , I had NO warning of any kind, came home from work, took a shower, hit the bed, When I opened my eyes in the morning I knew something was wrong..pressure in both ears..I ran into the bathroon..whoa!!
spinning, vertigo and started screaming..That's when I realized I could not hear my own voice....I made my way to my neighbors...told her what was happening, she said shhhhhh! your screaming..lol..I told her I could not hear my own voice she freaked to me to ER. They immediately sent me to Johns Hopkins here in Baltimore, I was admitted and the Drs there ran tests for 2 weeks. I was finally given the bad news. I have a gene in my DNA screen that matches one in my maternal grandmother, who also went stone deaf mad aged. So since it was no disease and I was tested and unable to used any type of hearing aid. The final word is that I could have gone deaf at any point in my life, I carry an extra gene. My advice is don't wait another day. Go and get an exam by a professional, perhaps get a few referrals from your local hospital or trauma center. I wish you the very best...I can tell you that day I thought was the worst day in my life. I was very wrong. But thats another story....I now am in the position where i hear nothing out side my gead, not even my own voice, BUT inside is full of constant noises, dogs barking, radio stations , people talking to one another, someone whistling and all kinds of bands and whooooshes! Drs thought I was hallucinating, until I was sent to a neuro-psychiatrist, who after testing me assured me and my Drs I was not hallucination I had what is called Memory Recall. This happens when the brain recieves sound, and then is suddenly shut off from the sound, it actually recalls noise from my past. whew! So please, go asap and if you dont get answers try someone else until you do. I will keep you in my thoughts and prayers...hope you find your answers..Peace to you M♥♥♥

That is quite a story! Mine was only half like that. My right ear hearing went overnight as I slept. Woke up to ringing telephone. Picked up, thought the caller hung up. Rang again. Picked up, phone sounded dead. Hung up. Third time put phone to left ear. My brother hollers at me "What the heck are you doing to hang up every time?"

Very wise to advise all people with suspected hearing loss to get it checked right away. Hearing loss is a sly thing. You don't notice it until a lot has been taken. If you notice any loss, it is much greater than you suspect. I learned this lesson.
 
Not sure if I qualify for this thread, but I was hoh for a long time. Had hearing aids for part of the time. Almost 5 years ago, I went from profound loss to total deaf in the blink of an eye.

I was working on the computer, had headsets on with the volume up so I could hear my music. All of a sudden, there was no sound. I unplugged the headphones and asked my family if there was sound. They said yes and to please turn it down. I could not hear them. Went to audiologist and found that I was total deaf and had no ear drums. Now I have no cochlea either. Had a recent test and there are more problems with the ears, but I am still total deaf. I do "hear" sounds from memory. Right now, I am hearing sounds that were playing when I went to Disney World's Haunted Mansion when I was 10. That was over 30 years ago. I hear music a lot from all those years I could hear. I hear conversations that I had with my father who died in 1991. It's amazing what I "hear". I am thankful for those memories. What I find amazing is, this evening while driving home, there were police cars rushing down the road, and even though I did not actually hear them, in my mind I could hear the sirens. My kids will forever have the voices they had when I lost my hearing, not after they change for adulthood.
 
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