Well, ask away. I’m home over winter break, and I’m not going anywhere any time soon.
What the hell is Meniere’s disease?
I am sorry(?)(happy, indifferent?) that you have it, by the way.
:eek:
Umm…wait. The second half of my OP is missing.
I’m starting this thread in the interests of fighting ignorance. Meniere’s is an inner ear disorder, and it can affect both your sense of balance and your hearing. My hearing never really suffered, but for a long time I had what my first ENT pronounced “a moderate to severe” loss of balance function in my right ear. Balance disabilities are among the zillions of invisible disabilities that hardly anyone knows about, and having problems with your sense of balance can be truly devastating. For several months, I was pretty nearly totally incapacitated. IME, lots of people don’t truly believe that you’ve got a vestibular disorder, even when when you’re very clearly struggling to stay vertical and don’t reek of booze. Many also seem not to believe that you’re not bobbing, weaving, and shaking expressly to make them uncomfortable. My experiences with colleagues, now ex-friends, and losers on the street have been almost as frustrating as my lack inner ear function was.
My hearing is fine, and I only rarely get a little ringing or pinging. My balance is fine, now, too, since I got my Meniere’s diagnosis in August. I started some new medication (Singulair–a mast cell inhibitor–and a diuretic) and made some changes in my diet. So far, everything seems to be working great. For the last 3 months or so, having Meniere’s hasn’t affected my life in any significant way at all. But I can’t forget what my pre-diagnosis experiences with this sickness were like, both in the physical limitations I had and in the reactions of the people I dealt with during that time.
For Ilsa_Lund: Here’s a website that has very good information about Meniere’s disease.
For Scribble: As an audiologist, I already know a lot about Meniere’s disease, and have seen many patients with it in the past. I am sorry to hear that you have this ailment. As for questions, I have a few:
How long have you had Meniere’s?
How much of a hearing loss do you have at the present time?
Do you use hearing aids?
Have you had vertigo?
What treatments (if any) are you currently taking to manage the symptoms?
Feel free to ignore any or all of these questions if you would rather not answer.
OK, Scribble, I’ll ask - how is yours?
Here’s a great discussion forum for Meniere’s:
http://www.menieres.org/forums/cgi-bin/forumdisplay.cgi?action=topics&forum=Your+Living+Room&number=1
Ilsa, here’s the hell what Meniere’s is:
It’s a disease affecting the sense of balance wherein the organs of balance in the ears malfunction. These tiny organs have fluid filled loops that sense rotation and also chambers with tiny stones that sense the direction of gravity. In Meniere’s, they typically rupture and cause catastrophic motion of the fluid or mixing of one type of fluid with another, or else they keep leaking. So Meniere’s patients can get insanely powerful but brief dizziness spells, or on the other hand they can get mild dizziness and disorientation, perhaps for long times or even permanently. Many Meniere’s patients also struggle with absentmindedness and “brain fog” because the brain devotes lots of attention to synthesizing more of the balance sense from visual and other clues. Also, a large fraction of Meniere’s patients eventually go deaf, at least in whichever ear is affected (it’s usually not both). The disease is very unpredictable and in bad cases it’s debilitating.
Does that sound about right, Scribble?
BTW, If you know somebody with Meniere’s, stand in front of a featureless wall, and get them to stop and talk to you. Then, start leaning slowly to one side while you’re talking. They will automatically assume you’re vertical and will keel right over trying to keep up with you. This one is great at weddings and funerals.
Well, thanks. But I’m doing really well. I truly am symptom-free most of the time.
I suspect I’ve had it for about two and a half years. One day, in June, 2001, I got out of the shower and felt like I had water in my ear. None of the methods people use to get water out of their ears worked for me, and many caused blinding, horrible pain. Within a day, I found I couldn’t burp without severe pain. (Yanking on my earlobe to open my eustacian tube whenever I had to burp or there was a serious change of air pressure helped a lot.) A day or two after that, I found that the only thing I could do was lie on my side with my eyes closed. I did a lot of clutching the carpet and praying that it was, in fact, impossible to fall off the floor.
None that I know of, actually. Now and then, on a day with very low atmospheric pressure, it hurts to hear loud sounds, but that’s as far as it goes. Oh, yeah–and on the rare occasions that I get a little ringing in my ears, sometimes hearing subtle sounds over the ringing can be challenging.
No need, luckily enough.
Yes. Oh, yes.
At one point, I truly couldn’t keep my eyes open for more than a few minutes at a shot. Have you ever ridden the Tilt-a-Whirl at an amusement park or fair? Well, imagine living on a Tilt-a-Whirl run by a psychotic carnie. The ride’s sped up and never, ever, ever slows down. You have to live, work, sleep, eat, dress yourself, etc. while being whipped around, feeling massively seasick, and always feeling like you’re about to be thrown off your feet.
Singular and Triamterene/HCTZ. The Singulair I take every day; the other drug, a diuretic, I take every other day. Unless I’m on my period, or doing things where I sweat a lot, or otherwise won’t have a problem with fluid levels in my inner ear.
The biggest thing that’s helped, really, has been cutting back the sodium in my diet. Sometimes, if have lots of food that’s loaded with salt, I’ll take a diuretic and drink lots of water afterwards. After a bunch of the sodium’s been flushed from my body, the pressure in my ear goes down, and my balance comes right back. That’s meant that there are some cuisines I can’t eat much of anymore (Greek, Chinese, and Jewish–much to my chagrin), but there are lots of other truly delicious kinds of cooking (Indian–especially South Indian–and some Ethiopian, for example) that I enjoy whenever I can.
When I first started getting sick, I was prescribed oral steroids. Those worked for a couple of days, and a steroid injection gave me perfect–completely perfect–balance for 24 hours and pretty darned good balance for about 48 more. (Oddly enough, I remember those 24 hours with great clarity and fondness. I don’t think I’d ever felt so wild and free as I did then. But I digress…)
I used to use a steroid nasal spray. (For those of you who are now completely confused, there are ways to kinda, sorta, sometimes get the steroid up into the area of the sinus that joins the inner ear. The methods you have to use to get the steroid where you want it to be are torturous and often unsuccessful. Now that I’ve got my manual dexterity back, I want to work improving the dispenser bottle, modifying it for people who need the steroid to hit the far regions of their sinuses rather than the nasal passages. I can’t be the only person who would or would have benefitted from a modified dispenser.) When the spray worked, it didn’t really clear up my symptoms all that much, but it could make the difference between being able to sit up and having to stay lying on my side all day.
I have no problem at all with answering any of your questions whatsoever. I hope I haven’t told you more than you wanted to know.
These days it seems almost nonexistent, actually. It’s been pretty nice.
I never suffered from hearing loss or from the brain fog you describe, but I found that I got exhausted very, very quickly. I’d often need a full several hour’s sleep after having been upright for only an hour or two. And if I hadn’t slept for hours and hours before I tried moving my head, I sometimes couldn’t do it at all. Just having my eyes open was exhausting.
Nowadays, my balance isn’t quite as good as it was, but, then again, I used to do gymnastics and dart in and out of rush hour traffic on my bike. For fun, no less. Now, I’d say my balance is probably average–maybe even slightly above average on a high-atmospheric pressure day–for my age. (I turn 30 in January.) There are still times when I can flip over backwards, ha ha! But I find that, unless the weather is really, really, good, I need 8 hours of sleep in every 24-hour period, or I have trouble with staying vertical, with pressure or pain in my ear, and with crappy reaction times.
Apparently, everything but the pressure and pain in the ear stuff is very typical of another disorder called “vestibular neuronitis.” In VN, the nerve in the inner ear that controls your sense of balance is inflamed, but the rest of your inner ear is OK. Because I had no hearing loss, had ringing in my ears only very rarely, and was less dizzy with my eyes closed and lying down than with my eyes open in any position, my first ENT thought that VN was a better bet. My symptoms and story might not be all that typical of Meniere’s, but, then again, Meniere’s is incredibly loosely defined. And I’ve found that the treatment prescribed for Meniere’s seems to be working, so I’ve accepted Meniere’s as my diagnosis.
Thanks for pointing me to that forum. I’ve checked it out once or twice.
Ooh, I hadn’t thought of that. I’m going to have to get a friend of mine to try that with me some time to see if it works. Now I’m really curious to check it out.
I had a bad inner-ear virus in high school, and I have been Unbalanced ever since. I have to hang onto the railing when going up or downstairs, and frequently have to stop, close my eyes, and get my bearings before I can conitnue.
Also have to spend way too much time explaining to people that “vertigo” is not a “fear of heights.”
Of course it’s not fear of heights! It’s a Hitchcock masterpiece!
D&R
Eve–Have you gone to an ENT (preferably one who’s also an inner ear surgeon) and gotten your balance problems checked out? There’s a pretty wide range of sicknesses and injuries that can screw up your sense of balance, and the difference in symptoms between one balance disorder and another is often very subtle. The etiologies and effective treatments can be very, very different, though. This is definitely a case where self-diagnosis is not a good idea.
There are a couple of things I’ve learned, though: If your only symptom is a feeling like you’re spinning (not rocking and spinning, not like you’re living on a Tilt-a-Whirl–more like you’re living in the middle of a merry-go-round), and your balance is always better with your eyes closed than it is with your eyes open, chances are you don’t have Meniere’s.
Similarly, if you find that your balance gets worse when you turn your head in a particular direction, you probably don’t have Meniere’s either. If you’ve got problems with muscular coordination and motor skills along with a lack of balance, you probably don’t have Meniere’s, and an ENT will probably send you off to a neurologist.
I know a pretty good method for temporarily improving your balance when things get bad. Your stability can get better pretty dramatically once you really figure out how to get it to work for you, but the effects tend not to last for more than an hour or two. Feel free to e-mail me for details. Or, if anyone else wants to know (I’m not sure it would be of that much interest to most people), I’d be happy to post it.
Ilsa–Hey–ya gotta have a sense of humor about this stuff. I tell my friends that I don’t have a real disease. I’m just spoiled; I think the world revolves around me. 
Personally, I think “Exploding Otoliths” makes a great band name.
Well, whatever I have, I’ve had it for 30-some years and it hasn’t gotten worse or killed me yet (aside from some nasty spills), so I think I will just let it be.
If a neurologist looked inside my noggin, goodness only knows what he’d find. It probably looks like the Last Days of the Collyer Brothers in there . . .
My aunt was diagnosed with Meniere’s disease about three years ago. She is currently 80% deaf in one ear. For about three weeks earlier this year, she lost the hearing in her other ear completely, then it returned.
I am pretty familiar with what she has gone through, but I have to ask: Scribble, were you subjected to a battery of allergen tests? My aunt was, but nothing seemed to develop from the tests.
Duke–Nah, no allergen tests. I already know that I’m allergic to some dusts and molds. I take Zyrtec as needed for that stuff. I know that, while steroids work to make me more stable, taking Zyrtec does not, if my sinuses were empty to start with. So I’m pretty sure that my allergies don’t really have all that much to do with it.
Incidentally-I’m not sure my otoliths are busted, either. If that were true, wouldn’t I see no reduction of symptoms from steroids? After all, steroids can get rid of inflammation, but they can’t mend ruptured tissue. Hmm…
Ilsa–Exploding Otoliths is a pretty cool band name. I see them as a group on the fringe of London punk in the 70s. “Oi! We’re the Exploding Otoliths!! Blowin’ out yer ears fer over 20 years!!”
Duke–My best wishes to your aunt. I hope everything goes as well as possible for her. (I could swear I put that in my first post. Don’t know why it’s not there now.)
hi there
wanted to see if you guys had any update on how you are doing with your Menieres
thanks in advance
Jonathan
I’m kinda curious too. I have horrible tinnitus and my sense of balance kinda sucks. I’ve starting to think it’s related.
@Scribble last posted about 2 years ago. Maybe this will bring them back.