I wrote this letter to one individual reader way back in 2004. He had responded to a website that David first set up in 2000. The website started off with “Do you suffer from dizzy spells? Have you been diagnosed with Meniere’s Disease?”
We had no idea that David was doing this! But it was his attempt to help others with this debilitating condition. He knew he could help. Then we had to hustle to deal with the influx of emails! (Here is the link to David’s very first website page in case you want to read it yourself.)
Like many other Meniere’s disease sufferers, this gentleman was very concerned at not getting any helpful and hopeful information about Meniere’s: the outlook for his future was dismal.
At that time, there were very few Internet sites discussing Meniere’s disease.
So in 2004, in response, I wrote this long letter, explaining what I knew about Meniere’s Disease, little realizing it would take a few more years before we realized that some THING(s) caused these symptoms…that you could track them, and that there would be things you could do to help yourself.
Sadly, the medical community still maintains this old thinking (“incurable, you have to live with it”), but luckily, we all know differently now.
Here now, in 2023, I thought it would be interesting for you to read “our thinking” and explanations that we had for these balance and hearing symptoms. I have made a few comments just to show how things have changed. In this newsletter I am also sharing the story that started me on the “cause and effect’ journey.
This is my original 2004 response to a very fearful reader. But I felt it was necessary to update the information a little for 2023. So the “new” information shows up just a little differently.
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Meniere’s (Syndrome) Disease “Meniere’s” is a condition affecting the nerves of one or both inner ears.
I want to share a little about a very disruptive and debilitating condition. I wrote about it a while ago, but not in much detail. Through thousands of emails, I have learned a lot: about health care and about people, and it’s time to say a little more.
Normal Ear Function
Each inner ear has two nerves running side by side: the balance (vestibular) nerve and the hearing (acoustic) nerve. Normally the balance nerve will send and receive messages twenty four hours a day to keep your body in whatever position you choose to be in…bending over, shifting your weight, turning your head, etc. And the acoustic or hearing nerve is there to receive and interpret sounds so they will have meaning for you.
For instance, if you are exposed to loud noise, you will be able to do some correction because it feels so uncomfortable. And, normally, sound-wise, you have a lot of silence interspersed with ordinary noises or unusual tones. You can handle all this nicely.
If you are exposed to some balance problem, chances are you won’t know about it, but the brain senses this imbalance and sends a message asking the inner ear’s “vestibular” or balance nerve to correct it. Unless you are “hearing -impaired” you will have these nerves working properly, but you most likely take their activities for granted. And it’s important to know that each ear and its parts functions fairly independently. Just as one hand can manage lots of activities, so can the ears.
Although it can be troublesome and often terrifying, Meniere’s is not something that’s contagious. Meniere’s symptoms usually occur in only one ear. It affects both ears in only about 30% of people.
Signs & symptoms that cause most of the difficulty are characterized by abnormal sensation of movement (vertigo), loss of hearing, and noises or ringing (tinnitus) in one or both ears, and pressure or fullness in the ear. Vertigo is most easily explained as the sensation of a room spinning out of control, but there are different degrees of this spinning. For some people it’s a very fast spin…for others, it gets to the point of dropping to the ground without any prior warning! And still for others, it’s a gentle movement, still unpleasant, but the person can “live with it”. For some, it’s a dizziness that comes and goes…usually without warning.
- Tinnitus is noise: again different degrees of loudness or shrillness.
- Hearing fluctuation is the changes of the sounds: high or low pitches.
- Pressure or fullness in the ear is the sensation that there is “something” in the ear…a very frustrating and uncomfortable feeling.
Our nerves automatically carry through with these messages or commands. It is your body’s intention to be “in balance” at all times, so it adjusts for any differences.
Why do some people get Meniere’s Disease? This is seen as a degenerative condition. This is not part of the normal aging process (otherwise we would all be getting this).
That means something has worn down or been damaged. Most people get some or all of these symptoms of Meniere’s disease in different degrees or intervals at some point in their lives and think nothing of it. With Meniere’s sufferers, these “normal” activities seem to be hindered, impaired, or completely incorrect. So messages are either not going to be received correctly or will it be misinterpreted and returned with a false command, because the nerves that should be receiving the “information” are not healthy (for whatever reason).
You may not think very much about these symptoms until you have someone close to you do something very strange.
But I would like to be just a bit clearer, so if you ever have an occasion to see this in real life, your reactions will be sympathetic, helpful, and resourceful. For instance, being able to hear someone speak (acoustic) to you one minute and not being able to hear them at all the next second, is rather unnerving and distressing.
But standing upright one minute and finding yourself on the floor, cut over an eye, is entirely another shocker! This is not a conscious or chosen activity. The person simply has no control over the episode. Something at that point has disturbed the inner ear’s balance nerve, in a very direct and severe way.
Causes? There are many theories, and none are definite. Some of the medical community feel this is the body working against itself (auto-immune), others feel it’s a virus, and many just feel it’s there because something has damaged the inner ear nerves or tissue. It’s virtually impossible to take a direct look at the inner ear’s working.
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2023 Comments: Always keep in mind that the body heals itself, automatically: it might be a bit slow, but that is its purpose. So when some “thing”, such as a cause or irritant, shows up, it is the body’s automatic response to heal. It simply does it, naturally, automatically. This is pure science.
The irony is that if you want something not to heal NATURALLY, you need to take drugs (anti-inflammatory) to stop this natural progression and you need to “replenish” them throughout the day.
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Let me explain this in more detail. For instance, you have a toothache and ask your doctor for help. Most likely you are given an anti-inflammatory drug. (It used to be an antibiotic, but that has changed.)
If you want to heal your toothache NATURALLY, your body’s own healing mechanism called the the “inflammatory response” is already set up to do it automatically.
But now, the anti-inflammatory prescription drug is also supposedly doing some healing.
Honestly, I have never understood the reasoning behind this idea, but it’s the standard nowadays.
Who Can Get Meniere’s Disease? And how does it happen?
Anyone can get Meniere’s Disease… male or female, and any age. We work with children as young as four and five and old as 88 & 92!
Treatments for Meniere’s Disease
Traditional treatment includes giving a diuretic: a drug that draws off excess fluid (feeling of fullness). It will most likely include a low salt diet…again to prevent fluid build-up. It will often include a drug to alleviate or prevent the vertigo or dizziness. And often it will include something to help the person relax or lessen their fears of facing the unpredictability of the symptoms. Because sufferers are willing to help each other in a somewhat hopeless situation, many “unusual” remedies are surfacing. One of the more hopeful ones includes a certain complete and balanced group of nutritional supplements as recommended by medical doctors. They are achieving surprisingly good results. Essentially, they are providing appropriate nutrients to the body to help itself.
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2023 Comments: The medically-prescribed treatments are still the same, but many people are now aware of other ways of looking at these symptoms and finding ways to help themselves.
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Why does Meniere’s disease return after a long period of peace and confidence that it has gone for good?
There is some thought, and ultimate hope, that an underlying inflammatory reaction is occurring to create pressure on one or both of these nerves. If this is real, then it follows that finding and dealing with this process could eliminate these very debilitating and unpredictable symptoms.
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2023 Comments: My “wool” story.
In 2010, our understanding changed dramatically! And it all started through correspondence with a lady in Australia.
As I recall, this lady was living on one (old) home and building a new one. In the daytime, she was working out of her office in the “new” home, and going home each night to “old” home. You understand what she is doing….spending time in each place.
As we shared more thoughts and ideas, here is what she discovered.
I admit to never, ever having thought this way before. (We are so programmed to believe what we are told, and in my case, that Meniere’s was a hopeless condition with no cure!)
So let me tell you what she discovered.
She was a perfectly healthy lady, who had a busy and successful home-based business. As the home building was progressing, she decided to use her new office. So she spent her days in the office and went back home to sleep. After a while, she began to feel unwell. After many tests, she was given this Meniere’s disease diagnosis.
What a shock!
A new home build underway and a business to run!
Naturally she turned to the internet to see what she could find….and she found David’s story.
As we exchanged ideas, science came into the picture. It became very, very obvious that something was not right in the new home.
To cut this email correspondence short, here is what we unearthed.
She felt well in the mornings as she went to the new home, but started to feel unwell as the day progressed.
Over the weekend, she felt progressively better and felt fine on Monday as she returned to her new office (by now a little reluctantly.)
It became obvious that something was making her sick in the new home, but what could that be.
In the end, she remembered her allergy to wool …. and guess what is used in Australia as insulation in some houses!
Wool!!
She then had the insulation tested and had the contractor remove every bit of it.
She was fine after a while, but it turned my thinking completely upside down!
Not only could we now help people get their health back on track, but now we also had ways of looking at what might be a cause of these SYMPTOMS!
Here we found something tangible to help for this “hopeless incurable disease.. which now is no longer incurable or hopeless.
It was the start of the Study Guide (the first of many editions, revised as new information came along.
Were we challenged? You bet! But science is pure: It’s all about cause (some sort of irritant) and effect, your symptoms according to the part of the body that is affected.
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Why does Meniere’s Disease affect people differently? Why is it more severe in some and not in everyone?
As I mentioned before, the symptoms can vary in intensity and severity. You have to realize that the human body is different for each person, so their reactions are completely “their own” No one CHOOSES to have these symptoms, and they cannot predict or prevent them.
How did it get this unusual name?
Ménière’s disease was first identified in the early 1800’s (1861) by Dr. Prosper “Menière”. He was a French physician who recognized the group of common symptoms and gave them his name. It is sometimes easier for the medical community to give things a name and then everyone can recognize the required treatment and follow through quickly without further testing. Sadly things (thinking) have not changed much since 1861.
Prognosis: what’s in store for the Meniere’s disease sufferer?
Most doctors, after exhausting their “traditional” medical treatments, will tell the person they “have to just live with it”…an immensely difficult and depressing “treatment”! Often this is seen or discussed as “all being in your head” or having an over-active imagination! How wrong that is! These symptoms are as real as having appendicitis: yet it’s not recognized the same way.
This condition has a negative effect on the entire family. Not only does the person have the attack and knows the very real loss of control and dignity, but they are also afraid to move in case any movement will set off even a more severe episode. Frequently they are speaking to a person that can’t hear them very well, in either one or both ears. That’s very frustrating and tiring. They feel physically exhausted and mentally terrified. Each episode’s onset is so completely out of their control and can come quickly without any warning. People who are not familiar with this condition tend to avoid Meniere’s sufferers, thinking they are drunk or dangerous. How sad and incorrect a perception!
Having a life like this, with all its unknowns and fears of the future does not give anyone a desirable quality of life. Many people will stop driving, as they feel unsafe. That limits or eliminates their freedom! They know how this affects their loved ones, but there is nothing they can do to make it better. So the family has to tiptoe around and be very quiet.
You will hear people calling this “the beast”. Can you imagine living with this degree of uncertainty every day? At the beginning of this article I hinted at a reason for updating this information. This condition has been a very real part of my life for almost ten years…fearful, unpredictable, and until a few years ago, hopeless…a round of tranquilizers, low salt diets, antidepressants, and little support from the medical community.
Luckily for us, all that has changed because the person who has it, decided to step out and find solutions rather than spend the rest of all our lives living from episode to episode. There is much to be learned and I want to encourage you to explore different avenues. There is hope and there may be a normal life in store for you, but you will need more information and a willingness to see beyond the traditional treatment. Once you understand the underlying body’s responses to “invaders”, you will find ways to deal with the challenge. But then the decision will be yours to make and the traditional treatment won’t be so final and hopeless. Wouldn’t it be good to realize you can have some control over your health? If you would like more information on this condition and possible ways to help, please visit the Contact Us Page.
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Back to today, 2023:
As you can imagine, I am so grateful for the “wool lady” and to the many people who have shared their causes and experiences with us over the years. The Internet has changed a lot of thinking, including how Meniere’s is managed.
As always, please let me know if I can help with ideas or if you would like a copy of the Study Guide. It’s due for another update, but I am also trying to finish the book about all this.
Please stay healthy and safe, and maybe not look at any news very often. Stick to your own tiny world and be happy in it.
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- If you would like a copy of our Meniere’s Disease Study Guide, please click here. This guide is a step by step journey exploring your symptoms and what may be causing them.
- If you would like more information on the system that David, and numerous others, have used, please click here; What Finally Worked.
- If you have any health questions or concerns, please feel free to Contact Us and we will be happy to share our knowledge and ideas with you.
Karin Henderson, Retired Nurse
(604) 463-8666 – Pacific Standard Time