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????

[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.

[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.  

[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.....

[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!

[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.

[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.  

[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.