Meniere's misdiagnosis?

[Plapnab]

Over the past three years I have seen several doctors and specialists regarding problems I have been having in my left ear.  I have been diagnosed with Meniere's disease.  However, I'm really starting to question this because I have never had any episodes of vertigo problems.  Basically, what's going on has similar symptoms of Meniere's (i.e. pressure, tinnitus, low and high frequency loss) but, I don't know...I think it might be something else.  Over the past year I've found that "popping" (opening the eustation tube) has been the most effective in relieving pressue and bringing back clarity, frequencies, and volume.  Specifically, it's the worst in the moring.  Most days I wake up with what I would describe as 50% hearing loss and by mid morning after popping my ears a couple times it goes up to 20-30% percent hearing loss.  And sometimes, for whatever reason, the pressure just disappears and my hearing is 100% accompanied by extremely loud ringing which lasts a couple hours then goes away.  Then after two or three days they cycle starts over and the problems begin again.  No doctors I have seen have really been able to put a finger on what's going on and I'm starting to feel as if I'm some sort of an enigma.  It's important to add that I make a good deal of my living playing in a rock band.  And, have not ruled out that this my be a cause of the problem.  However, I've always gone to great lenghts to protect my hearing with earplugs and expensive noise cancelling in-ear monitoring systems.  I'm at my wits end...can someone give me an idea of what might be going on here????

[bigbossgreen]

Hello, OP and JRC903

It has been a few years since you started this thread. Can you update your conditions right now.

I am suffering from the same problem. My right ear feels full, and the tinnitus or the humming refrigerator sound on my right ear, with low frequency hearing loss, where humans sounds like robots, monotone telephone dial tone etc. It comes and goes every 3 days for the past 2 months. The doctors disregarded it saying I only have Sinus issue and gave me Avamys but nothing helped.

I never had vertigo so far ever in my life. So I dont know if I have MD. I am only worried so much because of the symptoms of this ear fullness comes and goes (another word fluctuation) which seems to be what they use to diagnose MD, but I dont have vertigo so it is confusing.

Another doctor denied it is MD and said I might have Eustachian Tube Dysfunction. I can't deny that cuz when I get up in the morning I do have stuffed nose and have to clear throat for a couple of hours.

Anyway, I am horrified to think that I might get a veritgo any time if this is MD indeed.

Can you please update about your condition, if you ever end up getting an episode of vertigo or it stayed just like that without vertigo. Did it get better.

Please update.

[JRC903]

Update: I wrote last in October of 2010. Since that time much as changed. The eustation tube problem has disappeared. PERIOD.  Apparently It was a complete change in my diet habits brought on by the discovery of high-blood pressure condition that caused me to examine exactly what I was eating. One thing that was cut from my diet was regular visits to fast food places-- The other thing had to do with finding a suitable substitute for taking Ibuprofen. While I have no science proof as to WHY-- I do have prove as to WHAT. And that "What" is that I have had five months of trouble free hearing from my left ear--- the best in at least 10 years. A complete abolition on eating fried stuff from MCDs and taking one table spoon of  extra-virgin-olive oil tends to reduce inflammation clearly caused my pressure problem in the first place.  I tested the fried food theory exactly once.    

[villandra]

If your hearing loss goes away when you pop your ears, I'd say you might be looking at allergies - except that the amount of hearing loss you describe seems a bit extreme for that problem.  I could be wrong.

However if it partially goes away, maybe it's that, but menieres disease can actually affect eustachian tube function.  It does so with me.   Doctor said that the swelling in my inner ear might be impinging on the nerve that works the muscle that allows the eustachian tube to open.  

Menieres disease is an often controversial diagnosis, and many ENT's are about at the level of witch doctor in practical diagnostic ability.   In truth menieres is a basket diagnosis based on symptoms and can include a number of problems.

However, it is always an inner ear disorder.   Hearing tests should have located the source of the lesion in the inner ear - or atleast as sensineural, which is very different from any hearing loss a blocked eustachian tube could cause.

Yours,
Dora

[hamada68]

get an allergy or reflux evaluation for ? Eustachian tube dysfunction

[JRC903]

I would like to add a couple more things to the mix: for me the use of Ibuprofen definitely helps normalize the hearing/pressure situation in my left ear. The use of hot showers applied primarily to the back of the neck also helps loosen mucus. These two things are about the only thing that I have found that offers even temporary relief from this problem. Ibuprofen is by its nature anti-inflammatory. it may therefore be helping ME by reducing swelling in area of the throat and neck associated with the eustation tubes. The other thing that I wonder about sometimes is the issue of swelling caused by infected gums. I sometimes suffer from outbreaks of soreness in the gums-- when I forget to floss etc....Fortunately they clear up fast once i take care of the "root" problem. Nevertheless, I have not been quite able  to pin my hearing issues with the periodontal thing.. but again.. swelling and hearing problems both are reduced by Ibuprofen.. so anyway... i just wanted to throw that out there..

[JRC903]

As It turns out, the symptoms you describe are almost exactly what I experience. I have underlining hearing loss--so the numbers for me are much lower. But when my left ear is clear(no prressure)-- my hearing is 100 percent of 30 percent---at least.  I am very sensitive to changes in air pressure. just riding in car going over moderate mountain passes of Vermont is enough to give me great discomfort. Sometimes when I sneeze or cough-- I get almost instant relief, and my hearing goes to that 100 percent of 30. I also get that loud refrigerator type humming nose for about 2 hours. Then, if i am lucky i have three days in which my left ear produces clear natural sounding sound. But slowly-- the hearing degenerates until it is muffled and distorted beyond anything that a sane person would enjoy. I have hearing aids. the amplified sound the left unit produces it almost enough to give me normal hearing--but only when that ear is clear.. the rest of the time.. it is like fingernails on blackboard kind of thing--only it it sounds like someone is putting 100 watts of audio power into a ear piece type speaker... that is about to explode.At any rate, i have lived with this for a while now. and have not found the answer yet.. I am sure, the answer is related with mucus buildup in the throat for sure.. but fortunately, it does not affect the right ear.. at least.  Because, I am used to using the phone with my left ear.. this means trouble when I am in the mist of a bad ear day.. I usually have to rely on the speaker phone option and use the right ear only..Otherwise... the crappy frequency response of phone lines only adds to my problem..  Voices are not clear at all. I have now blown several phone interviews, because I just could not hear well enough to respond intelligently in near real-time. It was bad enough to lose hearing in both ears as i did.. but hearing aids solved that problem-- until this thing cropped up... So--- if this happens to get posted and reviewed by anyone.. I would be very interested if anyone can put the dots together on this situation..

[Plapnab]

Been back on Dyzide for about a month now.  And, it's been bitter sweet.  It appears to be working.  About two weeks ago I had an episone of about two and a half days of fullness in my left ear accompanied by some really midrange distorted hearing.  But, like I said it only lasted a couple of days so, I guess it has been tolerable.  I suppose the bottom line is that in my case Meniere's is somewhat manageable.  Looking at the big picture I have to say that this disease has taken a significant portion of my hearing and left me with an annoying ringing that will certainly follow me 24/7 for the rest of my life.  Salt is a major factor in this.  Last night I ate at KFC...and, holy cow do they put a lot of salt in there products.  About an hour after eating there, my ear was rocking.  I do my best to stay away from stuff like this but hey, I have to live to :).  I try to look on the bright side of these things and one silver lining in this is that the hearing loss seems to have stablized...if that makes any sense to anyone.  In other words, it hasn't seem to get worse in the last year.    

[Plapnab]

Yes, when it gets really bad I'll take Sudafed.  That usually takes the pressure off.  Dyzide seems to work the best.  Was on steroids a couple years ago when the symptoms first occured and they cleared it up the first day.  But, once my perscription ended (one week) a couple of days later it just came back.  It seems to go in cycles...two weeks of clear hearing with minimal tinnitus then about 3 to 7 days of misery.  Alcohol, salt, caffeine all seem to have an effect on it.  Still, no vertigo.  I remeber my dad having the same problems when he was the age I was now.  And, he says his mother had it as well.  May be hereditary.  

[Wear/a/Jimmy]

"My theory is that her Cochlear was filled with fluid"


The cochlea, is suposed to be filled with fluid. That is like saying her skull is full of brains.

[luv2sew]

Oh, just one more thing.  I know you don't suffer from the Vertigo.  Have you ever just taken Sudafed (the red tablets), its a decongestant and a Zyrtec at night.  The Zyrtec is helpful because it will dry the sinuses, as we know the sinuses can effect the ears & the Sudafed will open things up (just like the steroids would, but the steroids are better for a short duration).  I have a friend who has severe tinnitus and this seems to help him. He blames it on years of loud rock music & drag racing...LOL!

[luv2sew]

Oh my gosh, you sound just like what my daughter went through.  She already has a hearing loss & the same symptoms started with her in her sophomore year in high school.  She went to many, many doctors, special salt free diets, pills etc., even to a special clinic who put special electrodes on & diagnosed her with Meniere's Syndrome.  They couldn't do tubes, she had too much scar tissue. She lived with the constant Vertigo & ringing in the ears.  But, then we went to Shands & the doctors their said she did not have Meniere's.  My theory is that her Cochlear was filled with fluid. This went on for almost 18 months. She had gone to her ENT for something else & he had put her on a dose of steroids & her symptoms where gone!  But, then a few months latter she was diagnosed with a Thyroid disorder, her thyroid antibodies where sky high.  Could this be related to everything else she was experiencing? I don't know.  JUST DON'T GIVE UP!  Good luck.....

[Plapnab]

I've had several audiograms.  And, they all vary regarding exactly what percentage I've lost.  And, that's the problem with diagnosing me is that it depends on what day you do it.  I have horrible days, I have tolerable days, and I have exellent days regarding my hearing.  So, audiograms don't really say much.  I have to go on to communicate what I'm feeling is to guess where I'm at.  Last Friday I had them test for fluid in my ears but that came back normal...so, I don't think tubes will help.  Probably because I spent the morning popping my ears and opening my eustation tube.  The last couple of days I went back on Dyzide and that coupled with the "popping" has really improved things greatly...maybe I do have Meniere's and just don't get the vertigo symptoms that most people have with this disease.  I think I'll stay on this routine (along with a low sodium and low caf. diet) and see if things improve.  I'm guardedly optomistic.  

[Wear/a/Jimmy]

Have tubes placed in your your ear drums and if your problems go away, then you know for sure you do not have M.

It is not humanly possible to guess the % of your hearing loss without an audiogram. Not even a "ball park" estimation would be possible.