What Is Meniere's Disease?
Info from VEDA Life Rebalanced - Vestibular.org
Ménière’s disease is a chronic, incurable vestibular (inner ear) disorder defined by the Committee on Hearing and Equilibrium of the American Academy of Otolaryngology—Head and Neck Surgery as “the idiopathic syndrome of endolymphatic hydrops.”1 In plain language, this means that Ménière’s disease, a form of endolymphatic hydrops, produces a recurring set of symptoms as a result of abnormally large amounts of a fluid called endolymph collecting in the inner ear.
The exact cause and reason why Ménière’s disease starts is not yet known. Many theories have been proposed over the years. They include: circulation problems, viral infection, allergies, an autoimmune reaction, migraine, and the possibility of a genetic connection. Experts aren’t sure what generates the symptoms of an acute attack of Ménière’s disease. The leading theory is that they result from increased pressure of an abnormally large amount of endolymph in the inner ear and/or from the presence of potassium in an area of the inner ear where it doesn’t belong. These conditions may be due to breaks in the membrane separating endolymph from the other inner ear fluid, perilymph. Some people with Ménière’s disease find that certain events and situations, sometimes called triggers, can set off attacks. These triggers include stress, overwork, fatigue, emotional distress, additional illnesses, pressure changes, certain foods, and too much salt in the diet.
Common symptoms of a Ménière’s disease attack do not reflect the entire picture of the disorder, because symptoms vary before, during, between, and after attacks, and also during the late-stage of Ménière’s disease.
Ménière’s disease may start with fluctuating hearing loss, eventually progressing to attacks of vertigo and dizziness.
Oncoming attacks are often preceded by an “aura,” or the specific set of warning symptoms, listed below. Paying attention to these warning symptoms can allow a person to move to a safe or more comfortable situation before an attack.
Symptoms: balance disturbance, dizziness, lightheadedness, headache, increased ear pressure, hearing loss or tinnitus, increase, sound sensitivity, light sensitivity, vague feeling of uneasiness.
During an attack of early-stage Ménière’s disease, symptoms include: spontaneous, violent vertigo, fluctuating hearing loss, ear fullness (aural fullness) and/or tinnitus.
In addition to the above main symptoms, attacks can also include: anxiety, fear, diarrhea, blurry vision or eye jerking, nausea and vomiting, cold sweat, palpitations or rapid pulse, trembling. Following the attack, a period of extreme fatigue or exhaustion often occurs, prompting the need for hours of sleep. The periods between attacks are symptom free for some people and symptomatic for others. Many symptoms have been reported after and between attacks: appetite change, clumsiness, concentration difficulty, distractibility, tendency to grope for words, diarrhea, fatigue, malaise, sleepiness, headache, heavy head sensation, lightheadedness(faintness), loss of self-confidence and self-reliance, nausea, queasiness, motion sickness, neck ache or stiff neck, palpitations or rapid pulse, cold sweat, sound distortion and sensitivity, unsteadiness (sudden falls, staggering or stumbling, difficulty turning or walking in poorly lit areas, tendency to look down or to grope for stable handholds), vision difficulties (problems with blurring, bouncing, depth perception, glare intensification, focusing, watching movement; difficulty looking through lenses such as binoculars or cameras), vomiting.
Late-stage Ménière’s disease refers to a set of symptoms rather than a point in time. Hearing loss is more significant and is less likely to fluctuate. Tinnitus and/or aural fullness may be stronger and more constant. Attacks of vertigo may be replaced by more constant struggles with vision and balance, including difficulty walking in the dark and occasional sudden loss of balance. Sometimes, drop attacks of vestibular origin (Tumarkin’s otolithic crisis3) occur in this stage of Ménière’s disease and are characterized by sudden brief loss of posture without loss of consciousness. Some of these late-stage symptoms can become more problematic in conditions of low lighting, or with fatigue, or when a person is exposed to visually stimulating situations.
My Meniere's Disease story starts back in 1981
I was having symptoms of extreme imbalance, vertigo & motion sickness. The symptoms continued for over 2 years. I went to the doctors on and off and no one was able to help me. It became so debilitating that in early 1983, I was a working and I was a young mother of a 2 year old and had been very busy and very sick. Once again I went back at the doctor's office. He was very puzzled with my symptoms, which through the years, that reaction from docs have been the trend, but I was finally sent to an ENT doc. Through a very thorough examination, somewhat torturous, it was decided that I needed further testing for a diagnosis and I was sent for my first VNG test (Videostagmography), a test so horrific in and of itself, that I prayed whatever I had would not ever give me cause to have the test done again! The VNG was beyond any test I'd ever been through in my life. For 45 minutes in ear each, they spray a high powered stream of water, all different temperatures and they induce severe vertigo and imbalance to such an extreme that you can be sick for days afterwards. There are many people, from I was told, that cannot get through the test and some people get violently sick during it. I, fortunately, got through it but when is was done I swore I would NEVER go through that again. Time proved me wrong and although I have been asked to do it again a number of times, I only allowed it to happen one more time. A new doc, around the early 2000's needed updated documentation and a progression of my disease and so I went through the horror for one last time! After the original test results came back, I had to go back to my ENT's office for the news of my diagnosis. I remember very vividly, sitting in his lobby waiting to be called back and on the table was a pamphlet about Meniere's Disease. I read through it quickly and I remembered thinking, "God, I hope I don't have that!" and sort of shuttered to myself, never having any idea the fate that was about to slam me in my face. I was called back to the office, doctor came in, stone faced and very cold, and extremely business-like said, and without cushioning the blow and definitely void of any compassion, he said "You have Meniere's Disease. Do you know what that is?" His words took me by more than surprise, they took me by shock and I remember responding that all I knew about it was what I had just read about in his lobby. He proceeded to tell me that there was no cure, no medicine and it was a progressive disease and that I'm just going to have to learn to live with. After a few more rigid rules and expectations from him, for instance no more driving, because now he explained I was a hazard and a liability on the road, He proceeded to take me out to his lobby, instructed the receptionist to type me up a letter stating that he has advised me to not get behind the wheel of a car and if I did and killed myself or someone else, it was not his responsibility. He then told me I was to carry that letter in my purse so I always had that evidence on me to protect him. Then he walked out of the room. As a young 23 year old woman, who just received devastating news, this was an enormous burden and too much information to process. Needless to say, I NEVER went back to him again! Guess what, for years I carried around that letter! Go figure!
My diagnosis was frightening and I had no idea what to expect. There were no internet at the time and very little info on the books. THAT DIAGNOSIS PYSICALLY & MENTALLY CRIPPLED ME FOR YEARS. That doctor instilled immediate fear, frustration and put me in a world of so many unknowns, and planted a seed so far deep in me, that it would come to haunt me for years. I was scared to death I was going to hurt someone and I became a hermit. It took years away from my now 3 children and husband and my whole family. I lived in a tiny little bubble and was so afraid of what my disease was going to do, I became stifled and did not live life as it should have been. It was a torturous 15 years!!! When my oldest daughter was turning 19 and was moving away across the country to go to college, she, my husband and family had been my life lines and drivers all those years, but a trigger went off when my first baby was leaving, and my two younger girls were several years younger than her. I knew I had to change and DO my life much more valiantly than I had for so many years. It was time for ME to take over a disease that had taken me over for too long. I had let the words of an incompetent, unfeeling, heartless doctor take away my life. Instead of me understanding my disease and how it works and what control I do have, I allowed him to dictate my journey with the first installation of it being sheer fear. Enough was enough! A whole new chapter started almost immediately. That move in the right direction proved to me day after day that there is life after a horrific diagnosis. From that moment on, I chose to NAVIGATE through my disease and to this day, I live by that and honestly I has saved my life.
Now, let's jump ahead. In 2015, I had my first drop attack. That is one of the most frightening events in all of the ala carte symptoms and problems this disease causes. That particular day I was taking a shower and felt like I was passing out. I coudn't really regain my normal consciousness and couldn't walk. After about 30 minutes or so, when I still was unable to stand, we had to call an ambulance. The paramedic asked me if I could stand to get up on the stretcher and I was still unable to do so. They had to lift me onto the stretcher and I had a two day stay at the hospital with MRI's, Cscans, bloodwork, etc. I have had numerous attacks since then and they never appear with any warning. Its called drop attack because you literally collapse from the life that was just drained out of you. Many people have had very serious injuries from their drop attacks. Mine have left me unable to stand, focus, function and I keeps me bed ridden for a few days. The drop attacks have left me severe, residual symptoms, such as very advanced motion sickness and chronic imbalance that of course are lifelong.
Now into my 39th year with Meniere's, I am among thousands of other Meniere's WARRIORS who conquer each and every day. This disease is NOT for the faint of heart. Like my fellow warriors I fight my daily battles and I make sure I WIN! That is not to diminish or underplay what the disease does and the daily toll it takes on us, it just simply means, every day that I am alive and have achieved another day under my belt with Meniere's, I win! I have learned to take it one second at a time and I manage whatever it dishes out. There are days that are tougher than others, some are so tough they stop me in my tracks. Are there days I feel discouraged and disheartened...YES! But those days become my BEST conquests. At the end of that day, even if small, I accomplished the tasks at hand and give myself a tacit little pat on the back. Today I am in Stage 4, which is the last of the 4 Stages of this disease. Its not a fatal diagnosis but it does means that I am never symptom free. I am symptomatic 24/7. I still choose to live every moment that I have to IT'S fullest.
I choose to forge ahead and "DO" my days.
I love the saying, as stated below, "I'm not faking being sick, I'm faking being well!" That's us in a nutshell.
My constant thoughts and prayers go out to all my fellow Meniere's sufferers and for all their families that live the disease also.
Stay strong and God bless.