Breaking through the mis-information and mis-perceptions of Meniere's
Below is a general description of what Meniere's Disease really is and insight as to what it means for you the sufferer.
Firstly this condition is not really a disease in the same perception we have for more defined conditions such as cancer or heart disease. Rather it is a name given to a set of symptoms that the medical community claims the origin of which is unknown. This is what is known as an 'idiopathic' condition. A medical dictionary would define this as 'self originated' or of an 'unknown cause'.
Of course by very definition if you find the cause of your symptoms then it is no longer considered Meniere's. Therein lies the problem. We are told there is no cure for Meniere's because the origin is unknown; they don't know the cause.
Everything has a cause. Cause and effect is undeniable law of nature. The very reason they say they don't know the cause is because once you find your cause, in their thinking or linguistic terminology and reasoning it is no longer considered Meniere's. Once you find your cause and cure yourself they simply say it wasn't Meniere's because that doesn't fit into the definition of Meniere's. "Meniere's" therefore is simply a label for a set of symptoms.
So if you understand this, it is only considered Meniere's, when they haven't found the cause, but that does not mean there is no cause. And more importantly it doesn't mean you can not find your cause and deal with it. It is a matter of identifying that cause or causes in your individual case and dealing with it accordingly.
Click here to learn how to identify the causes of your Meniere's symptoms and what you can do about it.
The general perception is that the cause is unknown, but as stated above, this is very deceptive and if we are honest not the whole truth of the matter. The general perception is also that Meniere's is a degenerative condition, meaning it gets worse with time. It is even spoken about in terms of "early stages" or "latter stages" of the degenerative state of a Meniere's patient.
If you think through this deeply enough, the symptoms you are experiencing are a result of something causing the problem. So the longer that cause goes not searched for, undetected and not dealt with the more damage it is having on the affected ear. Meniere's is not a degenerative "disease" that is un-stoppable just to be accepted and the symptoms to be treated as best we can.
Sufferers are of course anxious to get a real diagnosis and have explained what disease it is they have. In a sense, Meniere's is simply a label given to a set of symptoms your doctors don't know the root cause of: An idiopathic condition. There are many possibilities as to the root cause or causes that are triggering inflammation within the inner ear and the consequent build up of fluid.
It is only referred to it as Meniere's Disease or Meniere's Syndrome once they have ruled out other more sinister possibilities such as a tumor. Blood tests, CT scans, an MRI and audiologist tests. Amongst a few other things the blood test may include checking for auto-immune traces and evidence of the syphilis. The MRI and CT scans are to discount the presence of a tumor.
So if doctors' guidelines and instructions for checks related to Meniere's are so limited and you end up "diagnosed" with this, then you have to take things into your own hands to get checked for the many other real possible causes of your symptoms.
The name "Meniere's" comes from Prosper Meniere, the physician-in-chief at the Institute for deaf-mutes in Paris in the 1800's
Meniere's is described by the medical community as a disorder of the inner ear. But that may not be where the origin of the cause is. The underlying root cause may be in one of several other parts of the body that show up in the ear as the end result of a knock on effect or domino effect.
It is believed that a build up of fluid puts pressure on the hearing and balance nerves. The fluid gathers in the 'endolymphatic sac' at the end of the labyrinth that is the inner ear. The sac balloons, which results in the pressure on the nerves. You may hear this referred to as 'endolymphatic hydrops'.
We sometimes have people contacting Meniere's Help stating that they have been diagnosed or think they have "hydrops". You have to understand that hyrops is just another term for edema or in more simple language, inflammation or swelling.
So when your doctor talks about hydrops, he is simply telling you that you have swelling in your inner ear. Medical dictionaries define hydrops as: "edema: swelling from excessive accumulation of watery fluid in cells, tissues, or serous cavities"
We have such cavities within our ears.
So when you see or hear these terms, endolymphatic hydrops or secondary endolymphatic hydrops and feel in awe, afraid or confused by this medical jargon, please understand the simple explanation is: you have inflammation (or swelling) inside your inner ear.
The inflammation process is a natural biological reaction from your body's immune system to any disturbance in an area that needs help from the immune system. Under normal circumstances the immune system sends its agents to deal with pathogens disturbing whatever part of the body is being attacked or disturbed. There is some swelling (as in when you have a bruise for example), as a surge in oxidation takes place as a result of the frantic activity of your inner defenders and all the excess energy produced (like a fire spitting out sparks). Your body's supply of antoxidants then cleans up the mess and gets that part of the body back to normal as your new cells are regenerated healthily.
In medicine, there is a term called silent inflammation. This is when the inflammation process goes on for over-extended periods of time without being detected. The body's supply of antioxidants cannot keep up with the demand and it starts getting messy in there. This is how degenerative diseases and conditions occur. Your body is losing the inner battle and the inflammation becomes chronic. At this point you begin to notice your symptoms.
Studies have shown that systemic inflammation is involved in at least 22 serious health conditions, including heart attacks, arthritis, diabetes and Parkinson's disease.
What we need to look at is A. What is the source of this resulting inflammation and B. How can we make sure the body can keep up with the demand for antioxidants needed.
In terms of B. This would explain why high quality supplementation, which provides potent antioxidants helps the Meniere's sufferer keep the symptoms at bay. It may not address the underlying root cause in most cases but it does deal with the resulting cause of the symptoms. It reduces or stops the inflammation occurring. It strengthens your immune system and makes it more efficient.
You can read more about the inflammation process here and more on the use of supplementation here.
The theories as to the cause of Meniere's and the focus of scientific investigation include possibilities such as noise pollution, viral infections, middle ear infections, head injuries, syphilis, bacterial infections, stress, fatigue, alcohol, smoking and allergies.
None of these have been clinically proven yet. Though there is strong evidence and proven statistics in some areas that at least some of these are either underlying causes or contributing triggers. One of the problems is that everyone is looking for a definitive answer as to what is the cause. One single cause, when clearly there are many candidates. What may be causing the symptoms in one person may be very different in the next.
The list of possible underlying root causes is much bigger than the above however. Learn more on root causes and how to deal with them here.
There are many other possible triggers that seem to have a common theme among sufferers.
What does all this mean for the actual sufferer?
Well, this condition is not fatal, nor is it contagious. It is a chronic condition however. It seems to affect everyone slightly differently and can range from troublesome at best to totally debilitating and terrifying at worst. Some people only experience one or two symptoms; others the whole lot.
If there is such a thing, classic symptoms of Meniere's disease include: fullness in the ear, tinnitus (ringing in the ears), dizziness, vertigo (shocking abnormal sense of movement, usually spinning uncontrollably) and hearing loss.
Most medical websites and the countless sites full of copied material quote the accepted triad of symptoms: dizziness, tinnitus and hearing loss.
That hardly paints the full picture though, as anyone who suffers with the full blown symptoms of Meniere's can testify.
Meniere's sufferers can experience brain fog, disorientation, confusion, inability to concentrate, sudden exhaustion, light sensitivity and noise sensitivity. It is a very lonely condition to have to live with and can lead to depression and a sense of hopelessness. Suicides are not unheard of, which is a crime when we now know how you can find your cause and deal with it, or at the very least control the symptoms with dietary manipulation, lifestyle changes and the use of supplementation.
A bout of vertigo can lead to severe exhaustion and the sufferer can be incapacitated for the rest of the day afterwards, sometimes longer. This makes holding down a job very difficult and people often find themselves having to give up work altogether. Some are even afraid to go out of the house alone for fear of what may happen. Even the lights and aisles of the supermarket may spark attacks. It can be a miserable existence.
Anybody can suffer from Meniere's, male or female, young children to old age pensioners. The general consensus is that the largest demographic of sufferers is middle aged people. One explanation for this might be that whatever is causing the silent inflammation has had a long time to build up and tire the immune system out.
Existing mainstay treatments vary from drugs like antihistamines, anticholinergics, sedatives, anti-emetic agents, diazapam or diuretics, to surgery like endolymphatic shunt implants, vestibular nerve sections and various steroid injections into the ear.
All of these are designed to try and relieve symptoms. They are not cures. They do not tackle the root cause and none of them have a particularly good track record when it comes to success.
The bottom line is, despite your symptoms being so hard to deal with and despite the mainstream medical community's very narrow view on how to deal with this, you can find your cause, you can deal with your triggers, you can keep the symptoms away by managing your condition or you can identify and deal with the cause or causes in your individual case and never have to worry about it again.
You need to educate yourself and take the appropriate action in your individual case.
Because if your doctor has told you, there is nothing more to be done then you must take things into your own hands and not rely on such narrow perceptions to help you.
The fact is, you do not have to live with Meniere's disease. It's down to you to take control of your own health. You can accept there is nothing more to be done, learn to live with it, or you can do what many readers of Meniere's Help have done and learn to live without it.
Click here to read Managing Meniere's Disease - How to Live Symptom Free
Click here to read The Need for Balance - Dealing with the Causes of Meniere's
Further reading: https://pubmed.ncbi.nlm.nih.gov/27083887/
What is Meniere's disease?
Supporting Meniere's Sufferers Since 2004