Meniere’s Disease, or Endolymphatic Hydrops, Is A Condition Affecting the Nerves of One or Both Inner Ears.
Endolymphatic Hydrops (or Meniere’s disease) is the name of a disorder or condition related to the inner ear. The medical community suggests there is no cause. Elsewhere on this website, we will share what possible causes we have come across. It is not as hopeless as it’s made out to be.
The major symptoms of Meniere’s disease are very debilitating. Therefore, that is the focus of most research and treatments. Meniere’s disease has to do with the balance and hearing NERVES, located in the inner ear. One is called the the balance (vestibular) nerve and the other is called the hearing (acoustic) nerve. They control your balance and hearing.
Your balance and your sense of position (laying down, standing upright) are governed by fluid-filled canals called semicircular canals. For example, as your head moves, endolymph (this fluid) moves, causing nerve receptors in the inner ear to send signals to the brain about the body’s motion.
However a change of increase or decrease in this fluid can cause a change in this normal “behaviour” and possibly trigger a Meniere’s disease attack.
In a healthy ear, a message is triggered from the inner ear to the brain, letting the brain know that there is some sort of IMBALANCE. The brain sends a return message asking the inner ears’ nerve cells to correct this imbalance.
These cells automatically carry out this message or command. It is your body’s intention to be “in balance” at all times, so it adjusts for any differences.
If you have Endolymphatic Hydrops, these activities seem to be hindered or impaired. So any message is either not going to be received correctly nor will it be interpreted and returned appropriately. And that, in turn, creates an imbalance in the fluid levels within the inner ear. (a simplistic interpretation.)
There are many excellent medical facilities to elaborate on this condition. You can read all about the labyrinth and perilymph, (another inner ear fluid) and how they influence your Meniere’s disease symptoms.
You can also get very caught up (and confused) in all the medical terminology and “fine distinctions”.
It’s best to keep Meniere’s disease relatively easy to understand and find ways to help yourself. That is what we have been trying to do with this website.
Normally the healthy balance nerve will send and receive messages twenty four hours a day to keep your body in whatever position you choose to be in, such as bending over, shifting your weight, turning your head, etc.
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.
Our nerves automatically carry through with these messages or commands. It is our body’s intention to be “in balance” at all times, so it adjusts for any differences. So (brain) messages are either not going to be received correctly or are misinterpreted and returned with a false command, because the nerves that should be receiving the “information” are not healthy (for whatever reason).
If you are exposed to some balance problem, chances are you won’t know about it, because the brain senses this imbalance and sends a message asking the inner ear’s “vestibular” or balance nerve to correct it.
However the feeling of pressure or fullness in the ear, or even ear pain, is the sensation that there is “something” in the ear, a very frustrating and uncomfortable feeling.
Meniere’s disease symptoms usually occur in only one ear. It affects both ears in only about 30% of people.
Although it can be troublesome, Endolymphatic Hydrops (Meniere’s disease) is not something that’s contagious and it isn’t fatal. However, it’s a “chronic” problem, which means that it lasts a long time for some people. People with Meniere’s disease don’t have symptoms all the time.
And that is what we really try to get people to understand!
Why do they not? When balance and hearing symptoms occur, it’s called an “episode”. Episodes may happen often, or only sometimes. Some come totally without warning!
Episodes can last from minutes to hours, but rarely last a full day, but for some, there seems to be a lingering effect. They can occur during the day or wake you out of a deep sleep.
However, because of the exhaustion that follows one of these Meniere’s disease attacks, the person is usually “out of circulation” for the rest of the day, maybe longer.
The Meniere’s disease symptoms that cause most of the difficulty are characterized by an abnormal sensation of movement/balance (vertigo), loss of hearing, and noises or ringing (tinnitus) in one or both ears. We frequently hear about fullness and pain in the left 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. 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. For others, it gets to the point of dropping to the ground without any prior warning! This is known as a drop attack.
Tinnitus is noise/hearing. This comes in different degrees of loudness or shrillness. Hearing fluctuation is the changes of the sounds: high or low pitches. But in discussing “hearing fluctuation” with people, it seems to be measured in a few different ways.
It can be a change in hearing as the actual test results from one testing to another. It can also be evaluated as a change in hearing over a period of time. For many people hearing returns after a while: for others it does not.
Why Do Some People Get Meniere’s Disease (Endolymphatic Hydrops) and Others Do Not?
Anyone can get Endolymphatic Hydrops, male or female, and at any age. We work with sufferers as young as four and five and old as 88 & 92! Most of the people afflicted with Meniere’s disease are adults, but we see a few children and younger adults. This is a very discouraging situation for them. All phases of lives are “disturbed”.
Meniere’s disease 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 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.
You may not think very much about these Meniere’s disease symptoms until you have someone close to you behaving “strangely”. If you ever have an occasion to see a drop attack in real life, your reactions should 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 his body. Something at that point has disturbed the inner ear’s balance nerve, in a very direct and severe way.
There are many theories about the causes of Meniere’s disease (Endolymphatic Hydrops): none are definitive. Some of the medical community feels this is your 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 is virtually impossible to take a direct look at the inner ear’s working. Diagnostic imaging will show if there is anything anatomically incorrect such as trauma. (It is why you get a lot of testing done.)
Scientists are also investigating other possible causes of Endolymphatic Hydrops by looking at environmental factors, such as noise pollution.
They look at general factors such as infections, syphilis, stress, fatigue, alcohol, smoking, and allergies. But their focus is on treating the symptoms that result from these causes of Meniere’s Disease.
The traditional treatments for Endolymphatic Hydrops include a diuretic (drug that draws off excess fluid to relieve the feeling of fullness). It will most likely include a special “Meniere’s disease diet” seen as low in salt and avoiding things like caffeine and alcohol.
It will often include a drug to try 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 so willing to help each other in what is seen as 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. They are achieving surprisingly good results. Essentially they are providing appropriate nutrients to the body to help itself.
Meniere’s disease 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 Meniere’s Disease Get This Unusual Name? “Meniere” was a French physician who recognized the group of common symptoms and gave them his name. It is common for the medical community to assign a name to a group of common characteristics. A recognized protocol and treatment plan can be followed.
The “accepted” Meniere’s disease prognosis is rather gloomy.
Most doctors, after exhausting their “traditional” medical treatments, will tell the person they “have to just live with it”. That has to be an immensely difficult and depressing “treatment”!
Sometimes, 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 Meniere’s disease is not recognized the same way.
Meniere’s disease has a negative effect on the sufferer’s environment, including their entire family. Not only does the person have these unwelcome episodes 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.
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 disease sufferers, thinking they are drunk or dangerous. How sad! What a completely wrong perception!
Living with Meniere’s disease, with all its unknowns and fears of the future, does not give anyone a desirable quality of life. Many people will stop driving: 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. (Or so they are told.) 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.
Meniere’s disease had been a very real part of our lives for many years: rounds of antidepressants, low salt diets, experiments of all sorts, and little productive support from the medical community.
Where Can I Get Additional Information?
The NIDCD currently supports research on Endolymphatic Hydrops (Meniere’s Disease) in medical centers and universities throughout the nation. For more information you can contact:
American Academy of Otolaryngology-Head and Neck Surgery
One Prince Street
Alexandria, VA 22314
Voice: (703) 519-1589
TTY: (703) 519-1585
E-mail: entinfo@aol.com
Deafness Research Foundation
575 5th Avenue, 11th Floor
New York, NY 10017
Voice: (800) 535-DEAF
TTY: (212) 599-0027
E-mail: drf@drf.org
Ear Foundation
1817 Patterson Street
Nashville, TN 37203
Voice: (615) 329-7807
Voice: (800) 545-HEAR
TTY: (615) 329-7849
E-mail: ear@earfoundation.org
Vestibular Disorders Association
P.O. Box 4467
Portland, OR 97208-4467
Voice: (503) 229-7706
Voice: (800) 837-8428
E-mail: veda@vestibular.org
The National Institute on Deafness and Other Communication Disorders of The National Institutes of Health. NIDCD Publication: Because You Asked about Meniere’s Disease.
- 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