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.
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. We have found out it’s 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 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)
spending 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
my husband 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 you.
However, the medical community insists on
calling it Meniere's disease and they continue to treat the
symptoms
only, rather than looking at potential causes of Meniere's disease.
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 not then 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
you look at your Meniere's disease as symptoms only.
This website was created with several perspectives in mind: the
Meniere's disease sufferer seeking hope and understanding, the family
seeking support, and 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.
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, most of the time many months.
Diagnostics
are explained. Tests are explained. You have 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.
So
another way of making you aware of what you might want to look for is
how your body actually functions. Knowledge is very important, it is
very freeing. It allows you to ask different and more in-depth
questions. The more you become aware of what goes onto or into your
body, the better decisions you can make, by taking back control. Now YOU
choose what goes onto and into it.
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 been
“normal”.
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, tinnitus,
dizziness,
hearing problems,
ear pain and pressure
and comes against the Meniere’s disease name over and over. The follow
up discussion is usually pretty discouraging.
A
much better and healthier question to ask anyone 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. Once you realize that this phrase Meniere's disease may NOT
be a disease, you are much more inclined to search for your underlying
cause.
Once you become aware or our Meniere's disease observations (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 groups. Yet it is true!
Hopefully that medical jargon, explained in more ordinary ways, ends up
being a little less confusing and disheartening.
So
why do we use the term "Meniere's disease"? Because it is a very common
search phrase.
Each website section provides brief overviews of different subjects. It
is not our intent to recreate any medical documents. 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 jargon and make it easier to understand the symptoms.
Although I am always telling people that this is not a disease, for the
purpose of this website and desire to help readers, I need to use the
term "Meniere’s Disease". Let's make this a comfortable website
“conversation”.
Let me clarify something at the beginning of this website. 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
people that when they discuss how they feel with their healthcare
professionals, that they only use terms related to the “balance” and
“hearing” symptoms. Avoid the term Meniere's disease, you want
objective thinking and then always ask for possible underlying causes.
By now, you know that there has to be a cause.
We
started the website in 2000 and we found a lot of negative information
about future “expectations” with Meniere’s disease. 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
enhance hearing.
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 future. It doesn’t
settle for this kind of defeatist answer. It seeks more from other
sources, especially with the availability of the Internet.
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 “get”!
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.
So
this site 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 disease. But 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 for the balance and
hearing symptoms of Meniere's Disease 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 respond shortly.
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 or loss. 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 a) the health of your body’s
immune system
and b) the
inflammatory response. (Let’s call this the
clean up fluid.). 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 major role.
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 this relates to your Meniere's disease (balance and
hearing symptoms). You feel “something” because something isn’t right.
You know the ear houses the balance and hearing nerves. You know that
the balance nerve gives off balance symptoms (dizziness lightheadedness,
etc.) when bothered. You know the hearing nerve deals with hearing or
lack of it. And you know this is a part of your body.
Therefore it needs your help just like all other health issues. 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.
Suppose something causes this sort of action in your inner ear, with its
very limited space. It could be a chemical reaction or some other
irritant, or something else (trauma?). So your body tries to wash it out
(clean up fluid/inflammation) or fix the problem: its normal response.
The resulting fluid has little room to expand, but the buildup is
relentless as it tries to wash away the irritant or problem. And that
equates to pressure. Where is it to go? It can only put pressure on any
soft tissue. It can’t put pressure on bone or cartilage as they aren’t
flexible. And the soft tissue could include either the acoustic nerve or
the vestibular nerves: one or both.
Would common sense not then show that the effects this nerve(s) could
easily be distorted? And that any messages to and from the brain, would
also then be distorted? And the effects are symptoms. 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. Without confusing sentences. Or by using
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.
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 they 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 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, and maybe not hearing very well. A personal choice for sure,
but did you know you had these two nerves?
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 offer additional insight.
Having personally handled the thousands of emails and phone calls from
Meniere's Disease sufferers around the world, I have found so 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 concepts or encouragement. Then our creative juices
take over and we come up with very workable and practical ideas. It also
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 has Meniere's disease, but he 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 observations email). 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 Meniere's disease. Of course the unusual ones are the medical
professionals who were completely skeptical and now are healthy again!
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?
However not many doctors paid attention to this concept. Little has
changed since I looked up Meniere's disease in 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.
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.
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