Understanding Meniere’s Disease and the Classic Meniere’s Disease Symptoms: Dizziness, Vertigo (or Vertigo Disease), Inner Ear Pressure, Tinnitus, and Hearing Loss.”

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 of Meniere’s Disease. 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.

What we 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.

HOWEVER……

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 you.

How do 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 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 loss or problems
• Ear pain and pressure

and comes up 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 cause: no effect. Learn to search for the underlying 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!

A more hopeful outlook

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 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

You and YOUR body

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.

What does 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 your symptoms.

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.

Is 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 same terminology.

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 confusing.

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”.

Meniere’s 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 enhance hearing.

How doctors think

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. 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 disease.

Our 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 respond shortly.

A very 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 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;

• The health of your body’s immune system
• 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.

Your immune system

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 cause.

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.

Fluid, pressure, and common sense

Now…..balance and hearing nerves

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 it.

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 story

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 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 this condition.

Role of 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 favourite 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.