This website has Meniere's
Disease information and resources to help you understand what you are
going through with this terrible condition. We put this site together
from personal experience of David's (husband and father) suffering with
balance and hearing problems.
We also did a lot of
research to help us understand the actual symptoms. We discovered that
there wasn't a lot of positive information about it on the Internet, so
we decided to share our knowledge and ideas of balance and hearing
issues with others so affected.
discovered about Meniere's disease
There are thousands of
websites discussing the balance and hearing SYMPTOMS, yet no one really
explores WHY they happen in the first place. We are told it is Meniere's
disease and there is nothing to be done about it. and we are all
expected to believe that.
We have found out it is very
different once you know what to look for. Now you can have hope and use
your own critical thinking skills to help yourself. You may decide to
carry on or you may decide to find ways to alleviate your
Meniere's disease symptoms.
But now at least you have a choice!
As a nurse, I've seen people
with Meniere's disease (sometimes referred to as Meniere’s syndrome,
vertigo disease or Endolymphatic Hydrops) spend years looking for relief
from this UNPREDICTABLE torment.
And it's even worse to watch
this happen to someone close to you. This isn't just a condition for the
patient: it affects the entire family.
So when David started to get
relief, so did we. We feel LIFE is pretty wonderful! Years later, things
are still great.
But now we have also learned
a tremendous amount about this condition and we want to share that with
people find us? Why is this important?
One person may find this
site having had a long standing diagnosis of
Meniere's disease, no problems, and suddenly experience what they
feel is a flare up. The internet is a handy place to look for more
information and hopefully a “cure”.
Yet other reader finds us
after hearing a word quietly spoken in an ER following a collapse and
the advice to see your doctor in the next two weeks, all tests having
We hear from people who have
an elderly parent who now has this “additional diagnosis”. On top of
everything else, they are now exhausted and dizzy and falling down. So
the son, or daughter, Google's words like vertigo,
hearing loss or problems,
ear pain and pressure and comes against the
Meniere’s disease name over and over. The follow up discussion is
usually pretty discouraging.
We hear from readers who
truly believed they had a long-term disease that had no hope of any
resolution. Suddenly someone mentions that there are things to be done.
Word of mouth is very powerful amongst this “community”.
Because the medical
community insists on calling this Meniere's disease and they continue to
treat the symptoms rather than looking at potential causes of Meniere's
disease, many people use the internet to do more research. I can’t tell
you how many people sit in the cars at a medical clinic and search for
more information after receiving this unpleasant future “sentence”!
no effect. Learn to search for the underlying causes of Meniere's
What few people help you
understand is that nothing happens in our bodies without a cause and
that cause has an effect (a result or an outcome or a symptom). One
“hearing” effect or Meniere's disease symptom is tinnitus. “Balance”
symptoms show up as vertigo or nausea and even
drop attacks! Again, these are effects: outcomes.
In any case, they always
have to have an underlying cause. Know that as a scientific fact:
nothing ever happens in our bodies without a cause. Absolutely NOTHING!
Would it not make more sense
then to look for and get rid of the cause? Would you then not also be
rid of the symptoms: the results or the effects? I am not making
promises. I am holding out hope for you to consider some other ways of
looking at your situation so that you look at your Meniere's disease as
This website was created with several perspectives in mind
The Meniere's disease
sufferer seeking hope and understanding
The family seeking
Medical side: the tests,
perspectives and terminology
Most of all, we would like
to know how your body and health interact so you can feel more in
control of your life. Health is your natural state. And this is YOUR
body: no one else’s. of course you can ask for opinions: it would be
foolish not to.
Many people come to us when
they first have been given a diagnosis of Meniere's disease. This could
be after having experienced occasional symptoms over a relatively long
and bothersome period of time, often years. Some sufferers have
experienced months of discomfort, but not all day, every day with the
exact same intensity.
it all mean?
You have had the
diagnostic tests for Meniere's disease explained.
Test results have been
explained. Keep this in mind as you read further.
You have explored
numerous links to the major medical facilities. And as you read and
understand more, you also get a feeling that if several facilities
or professionals are saying this it has to be true.
More doom and gloom, or
is there another way out? Yes, there is.
Ultimately, the prognosis is
doom and gloom: “you have to live this way, there is no cure, no one
knows how it happens”. But the human mind is more creative than blindly
accepting this long term UNPREDICTABLE future. Most of us do not settle
for this kind of defeatist answer. We seeks more from other sources,
especially with the availability of the Internet.
What is next?
Another way to help you look
at this from a completely different perspective is to learn how your
body actually functions -
your bodies anatomy
and physiology. Its built in systems are meant to PROTECT you. Why
then would it allow this to happen? This is where science takes over and
you can use it to your benefit. Knowledge is very important: it is very
freeing. It allows you to ask different and more specific questions.
The more you become aware of
how your body works SCIENTIFICALLY, the better decisions you can make.
Now you can take back control. Now YOU have some choices.
Here is a better question to
ask is “why is this happening”? Sadly, that is a question that gets
pushed aside and only symptoms of Meniere's disease and the subsequent
treatment choices are discussed. Keep in mind that you did go because of
Once you realize that this
phrase “Meniere's disease” may NOT be a disease after all, you are much
more inclined to search for your own underlying cause. You also feel
more courageous to ask for more information.
Meniere’s disease a disease? Or not?
Why do we use the term
"Meniere's disease" throughout our website and in our emails? It’s the
most common way for you to find us and recognize our emails. It is a
very common search phrase.
Please understand that the
medical community has the responsibility to TREAT any “disease” which is
often seen as symptoms. We can’t and won’t do that, but term is very
recognizable and we want to make things easy for you: so we will use the
For instance, I hear from
many people who tell me their diagnosis is “vertigo” or “tinnitus” or
“hearing loss”. Those are actually symptoms, but as a diagnosis they are
now seen it as a disease. Therefore, using the same words is far less
In our research we came
across many excellent in-depth articles on Meniere's disease, full of
medical jargon. The problem was that I had to spend time "deciphering"
the medical terminology. I suspect it's a challenge for many others.
We put this website together
for the non-medical reader to simplify the. Hopefully that medical
jargon, explained in more ordinary ways, ends up being a little less
confusing and disheartening. So for the purpose of this website and our
desire to help readers, I need to use the term "Meniere’s Disease".
Let's make this a comfortable website “conversation”.
disease is a firmly-entrenched diagnosis
We have found that Meniere’s
disease is a firmly-entrenched diagnostic term with an equally firmly
entrenched treatment plan. I am constantly suggesting to readers that
when they discuss how they feel with their healthcare professionals,
that they only use terms related to the “balance” and “hearing”
symptoms. If you avoid using the term Meniere's disease, you may find
this leads to a more objective discussion. Then you can ask for possible
underlying causes. By now, you know that there has to be a cause.
We started the website in
2000 and just like you, we found a lot of negative information about
future “expectations” with this condition. Incidentally, the correct
medical classification is “idiopathic syndrome”. That means no one
really knows what sets off the symptoms of Meniere's disease. But
because they are so unpleasant, doctors want to help alleviate them.
Hence the use of drugs, surgeries, and devices to rebalance pressure and
I want to share a bit of
insight. I actually found a book on how doctors think. Truly! It took me
a while to really understand that they have a different way of looking
at our health than, I suspect, most of us do. Once I understood this, it
made more sense, but it didn't change what I wanted to teach people. In
fact, I think it strengthened my desire to help you look at your health
in a more positive and encouraging way.
Doctors are trained to treat
symptoms, as are all “health” specialists, be they a chiropractor,
naturopath, holistic practitioner or the general ENT and of course your
family or primary care doctor. This is really, really important to
You do NOT seek professional
medical help for what to eat for dinner tonight. You figure that out for
yourself to the best of your present knowledge and inspiration. So it is
with how you feel. If you are fine, you do not go to anyone to keep
feeling fine. That is your responsibility. You go to an Emergency Room
(ER) when you have broken a leg or have appendicitis, or feel really
dizzy. You do NOT go when you have no symptoms.
Therefore you can expect the
medical professional to be very knowledgeable about “symptoms”: they
TREAT symptoms. This website is traditional in the sense that it helps
you understand the terminology, the testing, the treatments and other
concepts that the medical profession practices regarding Meniere's
Meniere's disease observations email
Once you become aware of our
Meniere's disease observations
list (an email we send to people) and read about so many
undiscovered and unacknowledged potential causes, your entire thinking
shifts. This flies in the face of all you read from medical facilities
and chat room groups. Yet it is true!
We have found that there are
many possible underlying causes and to this end, we spend a lot of time
helping people understand what might be happening to them. This not to
say we are treating anyone or diagnosing them. Once you have some
direction to follow, it takes the loneliness and the fear away. This is
not as hopeless as you are led to believe.
There is always a reason, a
cause, for the balance and hearing symptoms of this condition to appear.
Although it may take some time to find them, at least you know there is
something to do.
We have found that dental
issues (root canals, mercury fillings, dental decay), sinus problems,
and chemicals such as drugs often seem to be underlying causes for the
symptoms. We have collected quite a list of many possible causes from
people who wanted to spare others the same “experiences". If you would
like this list of “observations”, please contact us. Someone will
different way to look at your body and how it reacts
But I would like to explain
a little as to why you might have these Meniere's disease symptoms.
You have a balance
(vestibular) nerve and a hearing (acoustic) nerve in each ear. When they
are not working as they should, they show up as balance problems
(vertigo, dizziness, etc) and tinnitus (noise) or hearing fluctuations
If you understand that,
doesn’t it then make sense to try and find out what could be giving you
these changes? What could be upsetting or irritating them? Your body is
all about cause and effect. Nothing more or less. The cause, obvious or
hidden, always results in an effect (be that a minor or major impact).
Two additional “parts” of
this understanding have to include;
There are many other parts
to your body’s automatic desire or automatic intent to keep you healthy
OR to restore you to health. All are interrelated, but these two play a
The immune system plays an
enormous role in helping your body function healthily or normally. That
is its purpose. That is what it is for. That is what it is meant to do.
It is one of your body’s very crucial protective mechanisms. It
constantly rebalances itself to serve that purpose.
Many of us glibly speak
about our immune system, but do we really know what it does and why we
WANT to depend on it? It is your main defense mechanism and if it not
healthy, “things” break down. It takes time to break down your immune
system. There are several articles on this site to help you understand
what breaks it down and what helps it to be healthy.
You may wonder how your
immune system relates to your Meniere's disease (balance and hearing
symptoms). You know the ear houses the balance and hearing nerves.
You feel “something”
because something isn’t right.
You know that the
“disturbed“ balance nerve gives off balance symptoms (dizziness
lightheadedness, etc.) when bothered.
You know the hearing
nerve deals with sounds or lack of them if things aren’t right.
And you know this is a
all part of your body.
If you were fine, your
immune system would be handling all this. Therefore your immune system
needs your help just like any other health issues to correct the
problem. But you can’t correct the problem because you don’t know its
We are trained to believe
that if you can’t see “it”, “it” doesn’t exist. But most of what happens
in your body can’t be seen to the ordinary person’s eye.
But that doesn’t mean
something isn’t happening that you personally can’t think about, or try
to fix. Most of the time, you just need to know how the body responds
and then apply that knowledge.
Your body needs you to think
about the possible reasons or causes for this change to your body. After
all it is YOUR body, not anyone else’s.
Here is a simple, quick
example of how your body responds immediately. You get a sliver in your
finger: it automatically gets red and swells. What is going on? This is
your body’s automatic protective system called the inflammatory response
(part of your immune system) instantly responding. Your body is ALWAYS
protecting you, no matter where the invader shows up. This is the first
step to the HEALING process.
Let’s suppose the invader
shows up in the inner ear. Obviously you won’t be able to see what is
going on, but you could certainly feel (symptoms) what is going on.
“Something” causes this sort
of action in your inner ear, with its very limited space. It could be a
chemical reaction, pressure from some inflammation, or some other
irritant, or something else (trauma?). So your body tries to wash it out
(clean up fluid/inflammation) or fix the problem. That is what it does
immediately and without hesitation.
pressure, and common sense
Now.....balance and hearing
This resulting fluid has
little room to expand, but the buildup is relentless as it tries to wash
away (heal) the irritant or problem. And that equates to pressure.
Picture (my favourite) a worm, lying happily and relaxed in a small pot,
enjoying the gentle rain. Along comes a deluge of rain: this previously
happy relaxed worm is now under intense pressure. Is it still relaxed?
No, it is now reacting strongly to get out of the way of the water.
Unless it can get out of the way of more water, it will be affected by
This worm is soft and
pliable, just like parts of your inner ear. And just like the worm, you
pay no attention UNTIL you realize that something is causing your
balance or hearing to be different. The two major soft tissue structures
in the inner ear which give you symptoms are the balance (vestibular)
nerves and the hearing (acoustic) nerves.
Would common sense then not
tell you that something is wrong with that nerve? These effects are your
symptoms. But ask yourself why you have to combine both nerve symptoms
when each nerve acts independently. Could they each have their own
different cause? why not? I know this is very simplistic, but sometimes
the simple explanations give you more hope and more insight. But this
explanation is correct.
The letters we receive from
people with Meniere's disease are obviously from by people who are
looking for help and support. People don't usually search the Internet
for Meniere's Disease or the symptoms of vertigo and symptoms of
dizziness, sudden falls, loss of hearing, etc., without a very good
reason. Then they want this information quickly, without complicated
language or medical terminology that requires a dictionary.
Sometimes it is not easy to
get a clear understanding of what is happening in our body. As a
clinical instructor, it was my job to clarify such ideas, treatments,
and procedures. Many times if someone has a better understanding of why
their body is behaving in a certain way, they can accept it or find a
different way to cope. At least they have some choices.
Demystifying Meniere's Disease
We also thought that
Meniere's Disease should be "demystified". How does one come up with a
Meniere's disease diagnosis? There are specific things doctors look for.
Your specialist would be asking about congestion or inner ear pressure.
They would ask if you hear noises or can hear sometimes and then have
changes in hearing occasionally. You would certainly discuss balance
symptoms such as vertigo or lightheadedness or dizziness. Can you see
how the "feelings" from these two nerves are combined into one name? Yet
these are two distinct nerves.
The term "degeneration" is
defined as the gradual deterioration of normal cells and body functions.
That explains Meniere's Disease to me. Does it to you? Your ear was
working nicely and now through some occurrence, it isn't. But from our
experiences, this can happen at any age. We have worked with children 4
years and older...and "serious" seniors. Keep in mind please that this
is NOT anything to do with aging.
In other words, the ear
function can gradually degenerate or it can have sudden deterioration
(at any age), again back to the cause. One thing I find in my calls is
that few people seem to equate the balance and the inner ear. Your inner
ear has TWO nerves: not just the hearing nerve. And the balance
(vestibular) one is just as important as the hearing (acoustic) one.
In fact, if I had a choice,
I would choose a healthy BALANCE nerve over a healthy HEARING one. It
would mean standing up without losing my balance, but maybe not hearing
very well. A personal choice for sure, but did you know you had these
two individual independent nerves? They may live in the same area, but
they different functions.
A major vertigo episode in a
public place causes quite a scene. It is very embarrassing. You can then
understand why most sufferers become reclusive. Several million people
in North America suffer from symptoms that are said to make up the
definition or diagnosis of Meniere's disease. (Dizziness, Vertigo, Inner
Ear Pressure, Tinnitus, and Hearing Loss.) That means that many, many
families are affected by this problem. Can you imagine all those people
plus their families trying to live normal lives again?
Our life was pretty
representative of everyone else's. We felt our experiences and
subsequent new knowledge could offer additional insight. Having
personally handled the thousands of emails and phone calls from
Meniere's Disease sufferers around the world, I have found many, many
commonalties. It is time to speak out about them.
As human beings, we have a
lot of ability. Often our brains just need to be exposed to different
ideas or encouragement. Then our creative juices take over and we come
up with very workable and practical ideas. It helps us take back control
of our lives.
We have had this web site up
since April 2001. At that time we told people "My husband has Meniere's
disease and he says, "some days, life just wasn't worth living!" If you
have this condition, or if you know anyone who has this horrible
condition, I bet they also feel like that. David still THINKS he has
Meniere's disease, despite me trying to tell him he never had a disease.
It is really hard to get past all the negative programming and the
medical community’s power to call anything it likes a disease.
But really, if you remove
the pressure or the irritant from the nerves, what is left? You already
have no other problem as proven by the diagnostic testing you went
through. You decide what is left.
David no longer has the
symptoms that made his life so unbearable at times."
So what has changed?
Our discoveries from
people who told us what caused their Meniere's disease symptoms (our
We also learned
firsthand that we could help our bodies
We also found hope and
the courage to share this knowledge with many others
Maybe Meniere's disease was
not so hopeless after all?
Throughout this time, we
have been very privileged to meet and work with many, many people whose
families have been affected similarly by the kind of uncertainty,
inconvenience, and frustration that goes along with having this
nutritional supplements and Meniere's disease
In July 2002, the American
Medical Association (JAMA, July 2002) released a review statement
acknowledging the role of nutritional supplements in the reversal or
prevention of degenerative conditions in adults. Now finally, the
medical community was acknowledging the value of nutritional supplements
for disease prevention.....or more accurately, recognizing that your
immune system could be supported to a healthy level to be healthy enough
to handle possible problems. And if "optimum" amounts of a "balanced and
complete" nutritional supplements can be seen to prevent this sort of
thing, would it not be an idea to try it?
Let me explain what
“nutritional supplementation” is. It is not a diet. It is a set of
vitamins/antioxidants and minerals to top up or complete what you are
already eating: to enhance what you do now. What is its purpose? If your
immune system is not able to handle what your body needs to be handled,
then you need to help it along. That is what their purpose is. You are
not “treating” anything with any one vitamin. That is treatment and its
purpose is very different.. That is NOT supplementation.
Not many doctors are trained
to understand this concept. They are trained to TREAT symptoms. Little
has changed since I looked up Meniere's disease in my old nursing texts.
Let me include a short
paragraph from a reader’s email (I corrected some spelling). “I have
seen three Otolaryngologists. Two of them are apparently the best we
have in the field of Meniere's. They have all suggested a diuretic and
SERC, both of which I have tried and neither of which I take now. One of
the ENTs has taken the time to read your website. None of them approve
or believe the vitamin/regimen has anything to do with me feeling
better. They talk about no science to prove that it helps. One of your
favorite topics is the detection of triggers. Again, few of the medical
professionals believe in triggers except possibly for stress”.
I am quite sure you have had
similar responses from your doctors: many sufferers believe it. be more
aware now of how your body functions and keeps healthy.
WHY DO WE
SAY SOMETHING SO DIFFERENT?
Then why do we say something
so different? And so boldly? Because this has affected our family
greatly. We have learned so much about the symptoms and their underlying
CAUSES. To be told there is nothing more to be done, to have to live
like this, isn’t what you want to hear. We chose to take a different
course of action. We offer you our help. We are always willing to share
our Meniere's disease information and experiences.
Please realize that this
site is to help you learn about Meniere's disease but not in the usual
doom and gloom belief. Be hopeful. Keep searching for your cause. And
above all, get back to health. That is your birthright. That is your
body's natural state. It's doable. Instinctively, your body is trying to
help you all the way.
By Karin Henderson - Nurse, Retired.