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Old 09-23-2006, 12:01 PM   #1
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Meniere's Disease?

Three weeks ago I was hit with a severe vertigo attack, I was spinning out of control, had no balance and was vomiting. My husband took me to the hospital where they told me I have Vertigo. I was sent to an ENT who basically told me I have a virus that needs to run it's course. He did a hearing test and other inner ear tests that were all normal (VNG and ABR). I was in bed for four days without being able to move my head or I would start spinning and feeling nauseous. After that, it did seem to get just slightly better everyday. Besides feeling slightly off balanced when I bent forward or looked down. After 2 1/2 weeks I thought the worst was over. Until Monday...I was driving and all of sudden I was spinning, not as violently as the previous time, I made it home, took a meclizine and was in bed for another 24 hours. My ENT saw me again and said he thinks I have Meniere's disease, but wanted to rule out a tumor, so sent me for an MRI, it was normal. Since then, he has told in about 30 seconds, that he will be treating me for Meniere's disease, and I need to start a low sodium diet ( I weigh 100 lbs.) while taking Diazide? My questions are: How is he sure that I have Meniere's disease, I don't think he has tested for any fluid in my ear? Is there a clear cut way to test for fluid in the ear? What are the side effects of taking a diuretic? I know it can throw off Potassium levels, so that concerns me. Plus, I have low blood pressure. If all my inner ear tests were normal, why does he still think I have Meniere's? I don't know, this is completely frustrating. I have two children, ages 7 and 5, they are hard to keep up with on a good day! Right now, I'm still in a constant state of off balance, I wake up in the middle of the night spinning from changing positions, I wake up in the morning to the whole room moving. I can't bend down or look up or move too fast! Is there anyone else out there with this?!! Please give your advice or thoughts or suggestions!! Thanks so much for listening!

 
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Old 09-23-2006, 02:14 PM   #2
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Cool Re: Meniere's Disease?

Quote:
Originally Posted by ndl
Three weeks ago I was hit with a severe vertigo attack, I was spinning out of control, had no balance and was vomiting. My husband took me to the hospital where they told me I have Vertigo. I was sent to an ENT who basically told me I have a virus that needs to run it's course. He did a hearing test and other inner ear tests that were all normal (VNG and ABR). I was in bed for four days without being able to move my head or I would start spinning and feeling nauseous. After that, it did seem to get just slightly better everyday. Besides feeling slightly off balanced when I bent forward or looked down. After 2 1/2 weeks I thought the worst was over. Until Monday...I was driving and all of sudden I was spinning, not as violently as the previous time, I made it home, took a meclizine and was in bed for another 24 hours. My ENT saw me again and said he thinks I have Meniere's disease, but wanted to rule out a tumor, so sent me for an MRI, it was normal. Since then, he has told in about 30 seconds, that he will be treating me for Meniere's disease, and I need to start a low sodium diet ( I weigh 100 lbs.) while taking Diazide? My questions are: How is he sure that I have Meniere's disease, I don't think he has tested for any fluid in my ear? Is there a clear cut way to test for fluid in the ear? What are the side effects of taking a diuretic? I know it can throw off Potassium levels, so that concerns me. Plus, I have low blood pressure. If all my inner ear tests were normal, why does he still think I have Meniere's? I don't know, this is completely frustrating. I have two children, ages 7 and 5, they are hard to keep up with on a good day! Right now, I'm still in a constant state of off balance, I wake up in the middle of the night spinning from changing positions, I wake up in the morning to the whole room moving. I can't bend down or look up or move too fast! Is there anyone else out there with this?!! Please give your advice or thoughts or suggestions!! Thanks so much for listening!
Hi Ndl

Go to this web site---from the Information Archive(sticky)---first post on the board----and this web page---from Northwestern Univ:

[url]http://www.dizziness-and-balance.com/disorders/menieres/menieres.html#diagnosis[/url]

Scroll down to:

..."How does the doctor know I have Meniere's disease ?"....

The Northwestern Univ Meniere's page was last up dated 9 Sep 06---with information in the following cat's:

"What is Meniere's Disease?
What Causes Meniere's Disease?
What Damage is Done by Meniere's Disease?
How Common is Meniere's Disease?
Is There a Cure?
How Does the Doctor Know I Have Meniere's Disease?
Medications for Meniere's Disease
How to Manage an Attack
How to Reduce the Symptoms
Surgery and Destructive Treatments of Meniere's Disease
How Might Meniere's Disease Affect my Life?
Hydrops Diet
How Does Diet Affect Dizziness?
Dietary Goals
Drug-diet Considerations
Where can I Get Additional Help in Modifying My Diet?
Other Resources
References"

Have to say---while possible I suppose---tends to be overdone by Doc's---from the Northwestern Univ Web site:

...."There have been several studies of the US population. In the Framingham study, (Framingham, Mass, USA) 1.48 % of the population claimed to have a history of Meniereís disease (Moscicki et al, 1985). This large prevalence figure likely derives from a tendency of many physicians to lump all cases of recurrent vertigo into the category of Meniere's disease (Slater, 1988). Wladislavosky and associates, at the Mayo Clinic reported a prevalence in 1980 in the Rochester Minnesota population of 218.2 cases/100,000, and a incidence rate of new cases of 15.3/100,000/year. They also reported a diagnosis rate basically proportional to age up to the age of 60, with a decline thereafter. Bilaterality was found in 34% of their cohort. They commented that rates in Rochester MN appear less than those reported in England and Sweden."...

U will find a "hyper link" to that and other data on the Meniere's page---I posted above

 
Old 09-23-2006, 06:43 PM   #3
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Re: Meniere's Disease?

If you can find a neurotologist in your area, I would strongly suggest seeing one before accepting this ENTs diagnosis or treatment.

Menieres Disease is not the only cause of recurrent vertigo, and it is certainly quite rare. It also requires hearing loss for diagnosis - some ENTs who have been dealing with vertigo before the American Academy of Otolaryngology changed the diagnostic criteria to require hearing loss will ignore this.

To put it in perspective, migrainous vertigo has a 2% incidence in the general population (mostly episodic vertigo, and some with chronic vertigo) and Menieres disease has an incidence of less than 0.2%.

 
Old 09-23-2006, 07:27 PM   #4
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Re: Meniere's Disease?

ndl,

I would definatly see a neurologist.

my neuro is sending me to an ENT that specializes in meniere's disease.I have severe bilateral ringing in ears,diminished unbalanced hearing in both ears and a loss of balance.I have no vertigo.I am currently on meclozine 3 times a day.I just had a series of MRI's on brain and ears.I also have MS.With the symptoms above it could be from the MS but neuro wants a more conclusive diagnosis.

 
Old 09-24-2006, 06:04 AM   #5
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Re: Meniere's Disease?

Hi there
Sorry you are suffering with this, my kids were the same ages when I came down with my inner ear disorder.
One thing you wrote that sent some lightbulbs going off was the rolling over in bed and spinning which is a very strong symptom of BPPV. There is lots of info on this in the very first thread on this board (sticky) which you can find articles on BPPV...your ENT may have tested you for this already, but if he hasn't he should do so. The website Subs gave you will also have info on this condition which is the most treatable of all inner ear conditions.
HOpe you find the help you need, this is a scary time and you will get better, hang in there and do your research.
FC

 
Old 09-24-2006, 02:28 PM   #6
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Re: Meniere's Disease?

Thank you so much for your kind words and information. I have decided NOT to start the diuretics, what do you think? With all of your advice and research I've done on the internet, I believe I could have Labyrinthitis with BPPV? since I do not have any of the typical symptoms such as hearing loss, tinnitus, etc. associated with Meniere's. I think I am going to go into Philadelphia to the only other specialist in this area and get my second opinion, hopefully this time I will find someone who is willing to take the time. That seems to be hard to come by these days. It is so eye opening to realize how much of your health care is up to you! Especially with vestibular disorders, there doesn't seem to be any clear cut answers, which is so frustrating. So, thank you for your replies, good luck to all of you. I will keep you posted! In the meantime, I'm keeping my fingers crossed for no more violent episodes!

 
Old 09-24-2006, 02:58 PM   #7
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Cool Re: Meniere's Disease?

Quote:
Originally Posted by ndl
Thank you so much for your kind words and information. I have decided NOT to start the diuretics, what do you think? With all of your advice and research I've done on the internet, I believe I could have Labyrinthitis with BPPV? since I do not have any of the typical symptoms such as hearing loss, tinnitus, etc. associated with Meniere's. I think I am going to go into Philadelphia to the only other specialist in this area and get my second opinion, hopefully this time I will find someone who is willing to take the time. That seems to be hard to come by these days. It is so eye opening to realize how much of your health care is up to you! Especially with vestibular disorders, there doesn't seem to be any clear cut answers, which is so frustrating. So, thank you for your replies, good luck to all of you. I will keep you posted! In the meantime, I'm keeping my fingers crossed for no more violent episodes!
Yep---one of the best Center of Excellence in the USA---for Vestibular Problems---from both a research & clincial standpoint is Univ of Penn's "Balance Center" the web page is:

[url]http://pennhealth.com/ent/balance/hi/vestibular.html[/url]

Which is where I ended up.


Last edited by Subs30; 09-25-2006 at 04:08 PM.

 
Old 09-24-2006, 05:15 PM   #8
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comeandrelax HB User
Re: Meniere's Disease?

why don't we see alot of people on these boards that have menieres. i know of a few but really its not something you see alot

 
Old 09-25-2006, 03:47 PM   #9
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Re: Meniere's Disease?

I think there are quite a few other forums for menieres sufferers - and I suspect it's something to do with age (menieres is more common in the elderly (though it can occur at any age), who aren't as computer literate as the youngsters)

 
Old 09-25-2006, 06:58 PM   #10
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Re: Meniere's Disease?

Hi, my user name has changed, but it's still me (ndl). Just wanted to give an update: I have an appointment at the Univ. of Pennsylvania for a complete balance study and then an appointment in the dept. of Otorhinolaryngology. It will take a month just to see the Dr. to get any kind of results, so I'm a bit concerned that I should be having some type of treatment in the meantime, especially since I am not taking the diuretic, and am still not sure if I need to be! Can anyone out there give some insight into the differences between Labyrinthitis with BPPV or Meniere's? Anyone with Meniere's? Would Labyrinthitis last this long? As much reading as I've done, I still can't seem to figure it out! Right now, my symptoms have not subsided since my second episode one week ago today. I become dizzy with head movements, looking up or looking down mainly. I've learned to roll over in bed very slowly, no fast movements, that's for sure! Well, thanks for listening.

P.S. I am 35, if that makes a difference to anyone's ideas about when Meniere's can strike.

 
Old 09-26-2006, 03:19 AM   #11
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Re: Meniere's Disease?

Age isn't too much of a factor as it can strike at any age.

Endolymphatic Hydrops is thought to be a problem with fluid level regulation in the inner ear (basically the inner ear accumulates too much fluid and the storage reservoir bursts bathing the balance and cochlear apparatus in fluid- this not like fluid in the middle ear, you cannot feel the innerear as it has no pain/touch sensors..), which stimulates the inner ear producing vertigo,tinnitis and deafness. Sometimes there is an obvious cause to this syndrome (autoimmune disease, secondary to infection etc), other times it's idiopathic (ie has no known cause) and in that case it's known as menieres. Typical menieres is characterised byt symptom free periods interspersed with violent attacks of vertigo and tinnitus, which subside over a short period (typically lasting minutes to hours), over time it can lead to more constant vertigo/balance problems and gradual loss of hearing (as the inner ear becomes damaged and accumulates), however for the majority of people it can be controlled through diet (low-sodium to stop the fluid fluctuations) and attacks minimised.

Labyrinthitis, is a viral (or bacterial) infection of the inner ear, where the balance apparatus becomes inflammed... Often (or always depending on the research you believe) this results in damage to the vestibular system (balance apparatus), which has no propensity for healing, so the damage is permenant. However the patient recovers as the brain adapts and learns to interpret the signals in a different way (central compensation), the acutall virus is not thought to last more than a few days, but the compensation process usually takes a month or two. However, for some this compensation process can take months or years, and for a time after recovery it's not uncommon to have decompensation (where your brain forgets what it's learnt and resets itself).

Most ENT docs don't know enough about this stuff, and they are taught that labs gets better in 6 weeks and never returns, and if it keeps recurring then it's probably menieres - the reality is very different, which is why it's best to see a neurOTOlogist who specialise in the inner ear and it's connections to the brain..

 
Old 09-26-2006, 04:40 AM   #12
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Re: Meniere's Disease?

meniero,

My neurologist suspects I have Meneire's disease.

I have no vertigo as in nothing spins.I am however off balance and heve ringing in my ears.The ringing in my ears has been constant bilateral for 2 months now.It was only in my right ear for the longest time.I do have some minimal hearing loss.

I feel like I'm in a constant state of drunkeness!

I'm waiting for MRI results back any day now.My neuro wanted to rule out aucustic neuromas and otosclerosis.I see a neurootologist in a couple of weeks.

If you have any concerns You should see a specialist.

Billy--great info.

I have MS(autoimmune disease) neuro wants to make sure there's not 2 disease processes going on.He's very aggressive in treatments and referrels.

 
Old 09-26-2006, 05:29 AM   #13
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Re: Meniere's Disease?

hey to everyone! i am new here to the board. hey nuffs3, talked with you a week or so ago about the buzzing in your ears. hope you are feeling better.
i was diagnosed about 7 years ago with meniere's disease. seems like a lifetime since then. my journey started out with severe allergies. would end up on steroids (yuk) to stop the sneezing which could go on for 10 hours at a time. then one day i started this horrible spinning. my left ear started ringing louder and louder and then the vertigo. after my attack my ears seemed to recover a little but my hearing would get worse after every attack. had all the tests and flunked them all for meniere's. it was very upsetting to learn that at the age of 38 i had 'an old person's disease' but i have read that allergies can be a factor in meniere's.
the vertigo got better as my hearing got worse. now i am deaf in my right ear and loosing some hearing in my left. the buzzing noise is constant.
i had a very bad vertigo attack a couple of weeks ago that was real bad. was weird, cooking dinner and out of no where the world just started spinning and i managed to turn the dinner off before i fell to the floor.
i had stopped taking the dyazide because it really makes my insides feel awful. when i went to the doctor i had fluid behind my ear. i had suffered an allergy attack about a week before that i figure started the ball rolling again for me.
i have also been checked for ms. had some spots on the mri, but the neuro said they were "ubo's" unidentified bright objects. nero said 10% of population has them and they were not ms.
low salt, no caffeine, no smoking. that's what i was told could help. and dyazide and antivert.
i have personally heard of 2 other people who were diagnosed with meniere's. both are not elderly. i think it is one of those 'we are not sure so we will call it meniere's.'
glad i found this board. at least i'm not alone in this.
cupoftea

 
Old 09-26-2006, 06:03 AM   #14
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Re: Meniere's Disease?

cupoftea,

Well I wish the buzzing would stop,it just gets louder.I'm still trying to figure out why my neuro is suspecting Meneire's.I don't have no vertigo.My balance is bad.He has me on meclizine,it hasn't helped.The buzzing in my ear co-insides with buzzing in my spine and right leg.I feel like I swallowed a bee hive!!
Even if the neuro ear doc comes back with meneire's I will get a second opinion.I agree with you,sometimes DRs.have no clue and they throw a name at us.Its this or that.

 
Old 09-26-2006, 07:28 AM   #15
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Re: Meniere's Disease?

Meniero:

As you described, without being an expert, it doesn't sound like Meniere's, and I agree with the others both in checking out more info on the net so you can see what it could be, but most important, get a second opinion, better if yu can reach a Neurotologyst.

Problem with the Inner ear disorders is that most of them share common symptoms,and is not unusual for, let us say for VN(Vestibuar Neuronitis), to have a relapse, usuallly in a lower intensity(like in your case) specially in the early stages, what's called the acute phase, of the disease, where what is called chronic compensation starts.

This is also normal since you're taking antivert medicine, and it could be posible that some time in the future, when you stop taking it you'll feel like a "new attack", because you're brain will start to deal with the new signals coming out of your injured ear, without the "mediation" of meclezine, but that is also normal with this stuff.

I'm not telling that I'm 100% sure that your case is not Meniere's, but after all the cases I've read here, and all teh einformation about the disease, sounds unlikely, so for me a second opinion is a must for your case.

If you haven't already read about it by now, there is a mostly common pattern on Meniere's Disease wich mainly involves episodic attacks wich lower in intensity through time, as hearing loss is present, in a directly opposite evolitive pattern where as vertigo decreases, hearing loss increases.

Much like Cup of Tea's case, wich, without being an expert, do sounds like a classic Meniere's case:

Quote:
i started this horrible spinning. my left ear started ringing louder and louder and then the vertigo. after my attack my ears seemed to recover a little but my hearing would get worse after every attack
Quote:
the vertigo got better as my hearing got worse. now i am deaf in my right ear
Again, from what I've read, it's usual to have this "roaring tinnitus" before a MS attack, so this also matches MS, and this hearing loss associated with Meniere's starts with the low frequencies, something that is quite easy to check with an audiometry. Sometimes Tinnitus(from what I've read, again) in MS it's more in the low pitch, than in the usual high pitch sound, commonly found in Loud Noise Trauma(the one that you have after a rock concert).

And as far as I've read(for cup of tea), totally agreeing with Billy, age is not necesarilly a factor in Meniere's, or in any other Vestibular Disorder for that matter, so MS it's not always an "Elderly disease".

What really happens with age is that one or more components of the vestibular system: ear, vision, propioceptive, etc. might take a toll for the years of service, causing balance problems, wich could be more associated with age than with a virus, infection, autoinmune disease, MAV or fluid in ears, as usually is the case with this stuff.

Finally:

Meniero: You should take a second opinion, I maybe would'nt take the diuretics, but a low salt, no caffeine diet won't hurt you at all, so I'd do that instead, and just in case, untul you get a complete check up on your condition by an specialist.

And just for the record, labs and VN symptoms could last, as an unofficial average 2 year time span, even BPPV, wich is easilly ruled out or diagnosed by the Dix-Hallpike Manouver, performed in the office by your doctor, could give you some little trouble along the way even after the acute phase is finished.

So If you do have Labs, wich is my bet but I'm not a doctor, you're at the beginning of it, make it clear that the actual disease, viral or infection, will be cured in a short period of time, some weeks at the most, but what we know as the compensation process, where your brain needs to adapt or compensate fot the vestibular injury, might take longer, that's the 2 years I mentioned, wich are not a rule because some people take less to fully recover but you could have some dizzy trouble along this process, and that would be normal.

Cup of Tea: What's the take of your docs in your case?, I believe you did have Meniere's in your most affected ear, your symptoms match almost by the letter a common MS case, Now you're being checked for Meniere's in your other ear?

And you should see an Allergologist, if you haven't already, to control your strong allergy atacks, wich most of the time might give unwanted extra fluid in your ears(not necesarrilly MS), wich with any vestibular disorder present, will give you some extra trouble.

Hope everyone get better soon.

Last edited by stargrave; 09-26-2006 at 07:32 AM.

 
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