New Here. Is this a MAV site or Meniere's Site?

If it were me, I would print out some of the anti-viral studies you read in the database section and show them to your doctor and see if he will give you a script for Acyclovir. Especially the ones from the Japanese doctor and Gacek.

 

Good advice CGR.

 

Be careful with steroids.

 

Read here for virus related info http://www.menieres.org/forum/index.php/topic,22570.0.html

Were you diagnosed by a neurotologist (ent who specializes in the inner ear)? Did the dr do a full work up including mri etc? There are things that mimic Menieres and they all have to be excluded before a dx is made.

 

Have you had everything ruled out?

 

June is right. Make sure you rule out everything.

 

I've been to allergists, ENT's, neurologists, neurotologists (didn't know there was a difference). Everything's been ruled out. The ENT told me that's how you know it's Meniere's.

 

This place has a lot of information gathered in the database section.
What is interesting about this forum is --- most people have been initially diagnosed with Meniere's, either correctly or incorrectly (or else with malingering) and for many people it turns out to be something else entirely. There is a lot of help and information here, more than you will ever get at your doc's office.

Some folks find a solution for their symptoms by changing doctors or medications, others by trying various other things, and many of us remain a mystery forever and are support to each other no matter what. This is a good place.

 

I have MAV; misdiagnosed with Meniere's. This site has helped me SOOOOOOOOOOO much. I stick around because I'm a success story and I like to help others!

 

bump

 

Uspin,

Do not assume that your Meniere's diagnosis means that you have any particular underlying condition causing your symptoms. The Meniere's diagnosis does not include any particular condition. It only includes a certain set of symptoms, the causing condition of which is not known. That is why Meniere's is an idiopathic diagnosis related only to symptoms.

On another hand, cochlear hydrops is a suspected condition thought to bring about Meniere's symptoms. But no one knows what causes cochlear hydrops. Therefore C H is an idiopathic diagnosis relating to a certain suspected condition.

So between the two, we have two idiopathic diagnoses, one involving only symptoms (Meniere's) and one involving a certain suspected condition (cochlear hydrops) believed to cause Meniere's symptoms.

There is no certainty in imagining that any two individuals who have been diagnosed with Meneiere's have the same underlying condition causing their symptoms. In fact, there is very little certainty that these same two individuals will even have the same symptoms. That is because when the underlying condition is not known, then because the symptoms are idiopathic, that fact alone may be the controlling factor for a particular MD to assign a Meniere's diagnosis.

Curiously enough, if one who is assigned with a Meniere's diagnosis ever discovers what the underlying condition is that causes his or her symptoms, the medical protocal requires that the original diagnosis was a mistake.

But you don't really care about all that. You want to know how to get rid of whatever symptoms you have. Here is my best advice. Try any treatment, that is non-invasive, and that you reasonably believe has helped someone else who has similar symptoms. That is the best advice I can give.

So that said, what are your symptoms?

 

Here is another summary of resources re viral etiology.

http://www.menieres.org/forum/index.php/topic,23217.0.html

The database board contains a lot of information that you may find helpful if you have not already looked it over.

 

One answer is take better care of yourself and ride it out.

http://www.menieresresources.org/Profiles/LindaAndSherry

 

Welcome to our second home.

 

Welcome aboard, uspin!

I hope you won't be spinning for long.

I tried to organize all the potential known causes and therefore potentially successful treatments of Meniere's symptoms (which overlap an enormous amount with those of MAV): http://www.menieres.org/forum/index.php/topic,25945.0.html

Some of us have more than one underlying cause of our symptoms. I hope you find something here that totally works for you! And remember, as Henry Sullivan said above, if you DO find a direct cause of those symptoms, and successfully treat the cause, the medical community then assumes that it never really was Meniere's "Disease," because over 50 years ago, it was defined as a diagnosis of exclusion. It's assumed that when it is diagnosed, EVERYTHING else has been ruled out.

But 50 years ago, nobody had heard of celiac disease, food intolerances, or systemic herpes infections, B12 deficiency (which is STILL not correctly understood by most doctors) was only diagnosed when one was close to death, and nobody had heard of cervical misalignment.

We know now that the results of any of those can be the exact same symptoms of Meniere's "Disease." Yet, none of us here had doctors who thought to even consider those as possible causes of our symptoms. THEY DIDN'T RULE OUT EVERYTHING, YET THEY GAVE US A DIAGNOSIS OF EXCLUSION.

Welcome to Western Medicine.

 

A warm welcome to you uspin!

 

Yep, MAV can cause the vertigo/tinnitus/hearing loss, which can be diagnosed at MM (Menieres). I came here because of being diagnosed with MM, but it ended up I think I have more like MAV caused by a systemic yeast infection.

Keep in mind that Meniere's is not really a "disease". It's what they say when you have those symptoms and they've eliminated other known causes. So it's not surprising that anything with vertigo/tinnitus gets diagnosed as MM.

 

I've taken your post from the mega-C thread so I could make a comment or two.

I was diagnosed by a neurotologist at Barnes Jewish in St. Louis as having migraine-associated dizziness. (He says M.A.D. instead of M.A.V. because it's his belief dizziness is more common than vertigo as a rule.) After trying the diet & a couple drugs - nortryptiline & something else, can't remember - he sent me to a neurologist/migraine specialist. He tried everything he was aware of & they were either totally unsuccessful or mostly unsuccessful with unacceptable side effects. I ended up taking a supplement suggested by a friend & had complete relief until I added some other things to the mix this month. (Plus un-officially-diagnosed allergies could be causing me problems ... & arthritis in my neck might be aggravating symptoms according to my rheumatologist ... who knows.)

Having been misdiagnosed with meniere's, obviously diuretic & low salt didn't help me either.

My main point is that migraine is extremely 'personalized' - what bothers you may not bother others. What helps you may not help others. Many people can control their diet & find relief - I'm not one of them. Then again, nobody can control barometric pressure - a big trigger for many of us.

I was under the impression that the majority of people with meniere's are on the low-salt thing. Everybody - is that true? If so, then uspin, perhaps the MAV diagnosis was correct.

 

Joy,

No it is not true. Not all meniere's people are on low-salt diet. And I have the report to show you....

NO I don't have such report...who do you think I am. My stab at humour.

Seriously, I am beginning to think I have menieres and not MAV(I am experimenting something). I like to go back and forth. Second time trying low salt and it doesn't seem to effect my symptoms.

Warm welcome uspin.

Dave

 

Hi Dave,

Either way, you have a bunch of symptoms and the docs don't know why. It is even conceivable that the cause of Joy's symptoms, called MAV, or MAD, or even MAYDAY (my stab at humor) may be the cause of your own symptoms whatever you might call them. And it is the cause you would be interested to try to treat, not just the symptoms.

Good luck!