Approaching Meniere's Disease Positively.

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. 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’s a 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 this condition (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 it is a disease and they continue to treat the symptoms only, rather than looking at potential causes.

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 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.

This website was created with several perspectives in mind: the 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 Meniere's diagnosis. 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 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.

Another person may find this site having had a long standing diagnosis, 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 Googles words like vertigo, tinnitus, dizziness, hearing problems and comes against the Meniere’s 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 and the subsequent treatment choices are discussed. Once you realize that this is NOT a disease, you are much more inclined to search for your underlying cause. Once you become aware or our “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.

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, 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. And then to 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. 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. 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 these balance and hearing symptoms 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 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 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 irritant).

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 plan 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 (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 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" diagnosis? 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 be gradually or have suddenly 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. (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, 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 symptoms (our observations email). We also learned firsthand that we could heal our bodies. We also found hope and the courage to share this knowledge with many others.

Throughout this time, we have been very privileged to meet and work with many, many people whose families have been affected similarly by this kind of uncertainty, inconvenience and frustration. Of course the unusual ones are the medical professionals who were completely skeptical and now we 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 restored 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 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.

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 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.

Thank you for taking the time to visit our website.