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Anyone else have Meniere's disease?


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#1 of 42 Bob McLaughlin

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Posted July 27 2007 - 04:03 AM

A couple times this year I had a stuffy feeling in my ear which I just figured was a head cold. I had a few short dizzy spells and just figured it was related to my stuffy ear, but I assumed it would go away by itself.

Last Friday I got a really nasty dizzy spell, the room was spinning like I was drunk, and my eyeballs kept darting around. I sat down for a while but that didn't help. I ended up violently throwing up in a parking lot and couldn't stop retching. My wife drove me to the hospital where they said I had vertigo, they gave me motion sickness pills and referred me to an ear nose throat specialist.

They said I have Meniere's disease, an inner ear condition that has no known cause or cure. I have some hearing loss in my left ear which may or may not be temporary. This can go away at any time, within weeks or last for years. They gave me some eye/head/neck exercises to get me used to dealing with dizziness so I do not become incapacitated by it.

Does anyone else have Meniere's disease? Has anyone had it before and it went away? I want to know how bad this is going to be. Certainly last Friday was awful and I hope a major episode like that doesn't reoccur. I have had slight dizzy spells every day since then but nothing too bad.
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#2 of 42 Carlo Medina

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Posted July 27 2007 - 04:44 AM

I don't have it, but I do know what it is and wanted to offer my sympathies.

A few years ago when I first started having tinnitus (or probably more accurate: I first started noticing it) I did a lot of research for causes of tinnitus and Meniere's was one of them. I did a lot of reading on it, fearing (the hypochodriac that I am) that I might have it, but ended up convinced I did not.

Just out of curiosity, how old are you? Just interested in when your onset was. Had there ever been any previous symptoms that, now that you know what they are and can look back on your life, happened earlier?

Best of luck to you!

#3 of 42 Bob Graz

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Posted July 27 2007 - 05:00 AM

I had a very good friend who had a similar episode and was diagnosed with Meniere's. He went to a second specialist who diagnosed it as something far less severe. I don't recall how it was treated but he hasn't had a problem since.You may want to seek out a second opinion.

#4 of 42 Bob McLaughlin

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Posted July 27 2007 - 08:00 AM

Thanks. To clarify, the doctor said "All signs seem to be pointing at Meniere's", so it's not 100% certain at this point, but highly likely. I'm going back in three weeks for a follow-up.

I am 39 years old. With the benefit of hindsight, I have noticed that over the past 5 years or so I have gotten much less tolerant of many of the spinning amusement park rides that I used to be able to ride without having any problems. In particular, I recall a simulator ride at Busch Gardens that made me so dizzy I had to close my eyes during the second half of it. Less than an hour later I felt like I was going to faint and had to sit down for 20 minutes or so. At the time I thought it was due to the extremely hot weather and the fact that I had drank 2 coffees and a Mountain Dew that morning, but no water! Looking back, that could have been an early manifestation of Meniere's, it fits everything (including the caffeine trigger).
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#5 of 42 Steve Schaffer

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Posted July 27 2007 - 08:03 AM

I was diagnosed with Meneire's 2 1/2 years ago. I've only had 2 or 3 vertigo attacks, all within the first 3 months.

The fulness in the ear is caused by fluid buildup in the spemicircular canal in the inner ear. This canal is split into two parts, one for hearing and the other for balance. The two parts are filled with different fluids, when buildup occurs the fluid from the hearing part contaminates the balance part and causes the vertigo.

I was prescribed a daily dose of diuretics and put on a restricted sodium diet to prevent the fluid buildup, and have been free of dizziness since June of '05.

I have meclazine for the dizziness and diazepam to help me sleep through attacks, but luckily haven't needed them a long time.

I do have a constant tinnitis in my right ear, with both a high pitched tone and something that sounds like a sort of low rushing noise as when you hold a seashell up to your ear. I also have about 40% hearing loss in that ear.

Initially I tried to keep my sodium intake down to under 2000 mg a day--very difficult to do when an average slice of bread is 400mg. In the last few months I've eased this up to about 4000mg a day with the occasional pizza binge (but avoiding cured meat toppings).

All I can recommend is that you keep salt intake as low as possible for as long as you can, get some diuretics (diazide works for me and is cheap), and try to maintain a good attitude. My ENT guy recommended against using the anti-dizziness medication except when an attack actually occurs as it can have a bad effect on the balance mechanism in your good ear.

There are forums specifically for Meneire's sufferers but I avoid them as I also tend toward hypochondria and there are some real horror stories on them, along with all kinds of quack ideas for remedies.

Early on I was desperate for a remedy, wanted an operation, etc. and really hated my ENT guy for not doing a "Dr. House" magic cure.

There has been some indication that this disease can be related to an auto-immune disorder. My ENT tried steroid therapy in the hope that it was an auto-immune problem, this caused fluid retention and led to my 2 or 3 attacks of vertigo.

The disease is much more prevalent in Japan than here. Some Japanese doctors have theorized that the cause might be viral and have had some success in some cases by prescribing Acyclovir, a medication prescribed to control herpes outbreaks. I could not persuade my ENT to prescribe it so bought some off the internet, no real effect in my case.

I wish you the best of luck. Stay as active as possible and watch your sodium intake.
Steve S.
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#6 of 42 Fredster

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Posted July 27 2007 - 08:04 AM

I've had it for nearly 40 years. I don't have too many violent dizzy spells. There's always some feeling of vertigo like when I close my eyes in the shower, etc. I have long since gotten used to the constant buzzing and whistling in my right ear. Plus I can't hear very well out of that ear either, especially higher frequencies.

No medications have ever helped me very much. I've heard that if the vertigo gets bad enough they can surgically disconnect the nerves (leading to total deafness I believe). I just hope it doesn't get any worse as I get into my senior years.

#7 of 42 JohnRice

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Posted July 27 2007 - 08:57 AM

Bob, I had the exact same experience about 6 1/2 years ago. I couldn't move all day Friday and finally went to an emergency care type place run by the local hospital on Sunday. Doc guessed it was positional vertigo and there was not much to do about it. It took at least a couple weeks to mostly go away. I still sometimes have mild vertigo if I suddenly look straight up. I am convinced most of these types of things are stress induced. Divorce eliminated 90% of the avoidable stress in my life, so maybe that is why it hasn't returned.

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#8 of 42 CRyan

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Posted July 27 2007 - 08:59 AM

Yeah, I have it as well. Sucks because you never know when it is going to strike. Luckily I only get 2 major episodes a year with several small ones mixed in between. But the major ones knock me out for a day witht eh nausea lasting usually another day past that. My mom has it as well. Funny, I get small reactions to changing weather. If I am paying attention I can tell if there is a possibility of rain etc...

But I have gotten used to it mainly. But there are certain things I stay away from like carnival rides. Can't do them at all.

#9 of 42 ChristopherG

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Posted July 27 2007 - 11:49 AM

I am hoping I don't. I recently blacked out while driving (on the Interstate in the Boston area no less). Thank God I didn't hurt myself or anyone else, although the AVIS people weren't very impressed Posted Image .

Anyway, since then I have had several bad episodes of Vertigo while driving (only on the freeway not around town) so something with higher speed straightaways and peripheral vision seems to trigger it. Long story short, MRI indicated chronic and severe sinusitus of all things. Am still taking antibiotics to take care of that and I am hoping that the severe sinus issues have caused some sort of inner ear thingy...so far the vertigo seems to be going away. Read all about Meinere's and am hoping that isn't the issue. Also a severe case of tinnitus but that was my own doing with too much loud music as a younger man - I have learned to live with that, more or less.

Good luck
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#10 of 42 Steve Schaffer

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Posted July 27 2007 - 03:56 PM

There's also an operation to releive inner ear fluid pressure that has mixed success. My doctor advised against it unless vertigo and dizziness became unbearable. I wanted it in the hopes that the noise and hearing loss would be reduced but he nixed the idea, I suspect because HMOs don't like to pay for it.

In my case I found that acceptance and maintenance have been the most effective therapies.

I just wish that there would be a new "fad" diet (ala ATKINS) that demanded extremely low sodium so I could again nuke my meals instead of having to cook from scratch to avoid excess salt.
Steve S.
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#11 of 42 Jeff_CusBlues

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Posted July 28 2007 - 01:19 AM

Quote:
Originally Posted by Steve Schaffer
There's also an operation to releive inner ear fluid pressure that has mixed success. My doctor advised against it unless vertigo and dizziness became unbearable. I wanted it in the hopes that the noise and hearing loss would be reduced but he nixed the idea, I suspect because HMOs don't like to pay for it.

Is this the operation that Alan Shepard had? In the From the Earth to the Moon miniseries, they did a whole episode about his Meniere's disease and how he overcame it and was able to go to the moon.

#12 of 42 Bob McLaughlin

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Posted July 31 2007 - 02:12 AM

Thanks for all the responses. There may be truth to the stress theory, I have been under a lot of stress lately at work. Over the weekend I stopped all caffeine and aspartame, and I have reduced my sodium intake as well. I almost felt back to normal over the weekend with no dizzy spells, not even when doing the balance exercises they recommended. But on Monday when I went back to work I started feeling slightly dizzy again. I wonder if it's the lighting or my computer screen.
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#13 of 42 Steve Schaffer

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Posted August 02 2007 - 01:31 PM

Bob,

Hope you're doing better now. Meneire's is a nasty disease in that anxiety over the possibility of having a vertigo attack can lead to symptoms similar to an actual attack. This can lead many to overmedicate with tranquilizers of some kind, i.e. Valium.

It helps to keep your blood sugar stable with regular small high protein snacks--unsalted dry roasted peanuts are good. Early on a handful or two of them would get me past a minor anxiety driven dizzy spell. Above all try to maintain a positive attitude, stay as active as possible.

Good luck!
Steve S.
I prefer not to push the subwoofers until they're properly run in.

#14 of 42 Randy Tennison

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Posted August 03 2007 - 07:01 AM

Bob,

I'm going to knock on some wood here, but I had Menier's attacks last year, but haven't had one since Sept of last year.

My first one came early in the year. Dizzyness, eyes darting (honestly, I had to re-check your posting to make sure I hadn't posted it earlier). I had another mild one, and then, the mother of all attacks. Dizzy, nausea and vomiting (and I never vomit). I managed to drive myself to the doctor (Stupid decision, in hind sight. I was more disabled than most drunks). They sent me home.

I had experienced intermittent fullness in my right ear for a couple of years. It was very annoying, and my ENT chalked it up to tinnitus. Nothing but time alleviated the pressure feeling and hearing loss. Then the dizzy spells hit.

I got meclazine and valium (which my doctor says helps stop the ear nerves from firing). One thing that seemed to help my dizzy attacks was to put on my CPAP (for sleep apnea). For some reason, the pressure diminished the room spins.

But then, last year, my right ear popped loudly one day, and since then, I've had no fullness and no dizzy episodes. My doctor said it might burn itself out, and hopefully, it has.

So, don't give up hope. I know how badly it sucks, waiting, never knowing if you are going to have an attack. And the anxiety when ever you feel something like an attack is horrible. Still today, if my ear rings, I'm freaking out on the inside.

Also, from what I read, there is no external force that seems to bring on an attack. I was at Walt Disney World, and dared to ride Mission Space. While the initial start up of the ride gave me some anxiety from the slight vertigo feeling caused by the spinning, it never started an attack. I've ridden several times since then with no problem.

So, don't give up your life. Carry your meds with you, explain it to your friends and co-workers, so they know that you may need them to drive you home, and go out and live your life.
Randy T.
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#15 of 42 Steve Schaffer

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Posted August 03 2007 - 05:29 PM

^^
Randy,
Are you on a low sodium diet and do you take diuretics (diazide)? I stayed on my low sodium regimen religiously for a year and a half and just recently have eased up a little with no bad results. I think I'm averaging 3000mg of sodium a day right now.

I cannot imagine trying to drive while my eye was darting like crazy and I couldn't even stand up--you have my admiration!

I gotta admit that to me right now the worst thing about this is that the tinnitis and 40% hearing loss in my right ear really plays havoc with enjoying the audio aspect of this hobby.
Steve S.
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#16 of 42 Randy Tennison

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Posted August 06 2007 - 02:29 AM

I started out trying to limit caffeine. Sodium was not possible (just couldn't do it). No drugs other than a nasal spray for congestiong (for the CPAP) But, truthfully, I don't think anything I did changed my ear. I think it was just a case of the ear correcting itself (again, knocking on wood around me).

As far as driving, man, that was the dumbest thing I ever did. I still remember just concentrating on the right shoulder, thinking that if I swerved, at least it would be on the shoulder, and not into oncoming traffic. I would HIGHLY NOT RECOMMEND anyone drive during an attack. I never will again. I layed in the car at the doctors office for 20 minutes hoping the attack would subside. It didn't, so when I got out to try to walk in, that's where the projectile vomiting started. Just thinking back to that day really increases my anxiety.

I guess I'm fortunate in that the hearing loss has been minimal. It's there, but it's not really apparent to me. It shows up on the hearing tests, but thankfully, it's nothing I notice.
Randy T.
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#17 of 42 Bob McLaughlin

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Posted August 09 2007 - 07:51 AM

That's quite a story, Randy. It's easy in hindsight to say you shouldn't have driven, but at the time of the attack all you really wanted was help, so I can see why you did it.

My ear is only slightly full feeling now, and sometimes not at all. I've still not had any caffeine or aspartame in 2 weeks. Reducing sodium is tough but I think I at least have reduced it from my snacks. I made the mistake of thinking a chicken salad would have less sodium than a hamburger, later I found the nutritional information online and it was actually higher (dressing/cheese/chicken). At any rate I'm trying to eat more fruits, which is good for me any way.

Interestingly, I had a nasty stomach flu on Monday and Tuesday, and my ear felt fine on those days...must have something to do with being dehydrated or not eating!
"I'LL SHOW YOU THE LIFE OF THE MIND!!!" - Barton Fink

#18 of 42 sweski

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Posted January 31 2008 - 02:56 AM

Hi Bob,

I came across your post just after you placed it, and in the day it took me to join the forum, I see that you have already had numerous replays. I have had Meniere's for about 10 years, and can relate to piratically everything others have described. I have tried about everything, and the best help I have has come from 5mg of Valium - before the attack gets started. I generally have some warning signs, which, if I ignore, lead to an attack. If I notice an increase in the instablilty I have, or some dizzyness, accompanied with some ear pressure and and increase in the tinnitus level, I will take a Valium or a promethazine immediately, and that will usually abort the attack. If it goes beyond that, it is hard to even get the Valium down. I then resort to a phenergran suppository (Unfortunately these must be kept in the fridge) so they are not always available, or someone has to go get it for me, because there is no way I could get it myself.

I have also learned to avoid some triggers I have found might set it off. For me, they are: noise - like a noisy restaurant, party or a roomful of kids running around, stores with high shelves - like a supermarket, or a very busy visual field, like inside a Walmart, Antique Shop, etc. I also have to be very careful of head motions, like bending down and looking up into something, like looking under a table or shelf while bent over. I do not go shopping unless I take some meclizine, and always carry my little crash kit of valium and phenergran. These things can impair your driving, as you know.

If I watch the sodium (I just do not add extra salt) and avoid salty snacks and caffeine, and avoid the triggers, I am OK. But I always feel like a bomb ready to go off ! I am 68 years old and had to quit my post-retirement "career" job in Walmart Electronics due to the Meinere's and a peripherial neuropathy condition.

I found an ENT that specializes in Meinere's and vertigo, and try to stay current with him. There are several surgical and treatment options, some with a significant risk of total deafness or constant vertigo, so for now, I am continuing with my current plan, unless the vertigo gets much worse. If I was still trying to work, I would probably go for having a nerve cut. This is almost a sure fix for the vertigo, but then you have total deafness in that ear. As it is now, I have about 10% or so left and it is a notched loss, so I still have some degree of 3D sound. Stereo sound normal with headphones, with the phones on both ears. With one on the bad ear, it sounds distorted and very low in volume, but when I add the other ear, it sounds fairly normal. With a notched loss, you lose bands of frequencies in the audible spectrum, much in the same way it would be visually, if you were to look at a scene through a picket fence... This can sometimes affect both ears, and is so, that 10% or so of hearing I still have could be valuable, so I dont want to risk losing that at this time.

Hope you are one of the lucky ones with this, and only have one major incident - as some do.

Jerry

#19 of 42 ChristopherDAC

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Posted January 31 2008 - 06:13 AM

Astronaut Alan Shepard was grounded for nearly ten years, from Mercury-Redstone 5 to Apollo 14, because of Meniere's Disease. Perversely, this made him both the longest-serving and the least experienced of NASA astronauts — he got his space wings before anybody else, but he had not a single orbit to his credit when he set off for the Moon. He and Deke Slayton, another of the "Original 7" who never got to fly at all until Apollo-Soyuz (heart trouble), were put in charge of personnel assignments for space missions, but they were both constantly looking for ways to get themselves onto the flight roster.

My understanding is that Shepard eventually had surgery to drain the fluid from his semicircular canals into his cerebrospinal fluid, a bizarre-sounding procedure which (at the time) supposedly had equal chances of success and death or permanent disability. Now, medicine has advanced since that time, but it certainly doesn't seem like something someone without a very compelling reason would want to have done.

#20 of 42 Jeff_CusBlues

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Posted February 01 2008 - 12:04 AM

I never knew Deke Slayton made it into space. Thanks for the info Christopher.




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