My Meniere's Story

Hi, my name is Sharon.
And I have a disease called Menieres Disease. I believe I have had MM almost my entire life. I am over 50, and have gotten dizzy off and on since I was approximately 15 years old. That is 35 longggg years!! But I was only officially diagnosed about 2 ½ years ago!! I could be going along just fine, and all of the sudden I would get violently dizzy, sick to my stomach, and the world would start spinning!! This didn't happen too often, thank the lord!! I remember being in a grocery store one time when I was 15 or 16 years old, and all of the sudden I got so dizzy, I had to sit down in the store, and put my head down between my knees for about 15 or 20 minutes. Then it passed, and I was fine. Can you imagine how hard and embarrassing this was to a young girl? This happened to me off and on all my life. But most times, I would get dizzy for the average of from two to three weeks at a time. And this would be continuous. No let up!!

Then about 1985 or 86, I started to get these weird feelings.
It is very hard to explain. I would start to perspire, and shake, turn very white!! And feel like I was going to pass out! I would feel like I was "not here". This happened off and on for approximately 2 years. I had to sit or lay down wherever I was, or would have fallen down!! I would usually come home, and lay down. I even had to lay down on my office floors a few times. After a few hours I would feel fine again! Never have known for sure what those attacks were. As I usually didn't get real dizzy with them!! But my different doctors said I should have come into their office to see them while in this condition!! Can you imagine going to a doctor when your tossing your cookies (throwing up) dizzy, etc? It is NOT easy to do anything at this time! Even get yourself to the restroom! I would to be brought home from my jobs numerous times, as I was not capable of driving my own vehicle. I would have to find someone to bring me home, or take me to the doctor, and by then, the attack of whatever it was would be over. Other than the weird feeling. And the doctors took MRI's, Cat Scans, blood tests, the usual battery with no findings.

I never understood what was happening to me,
and I would get very scared, fearing I was dying, or that I had a brain tumor, or any number of other terrible things! And after a while, I sometimes wished that I did have a brain tumor or something, so that the doctors could find out what was wrong with me!! And do something to correct the problem!! It is very hard to live with a chronic illness, especially not knowing what you have wrong with you!! Sometimes I would get dizzy for up to three (3) months at a time! This happened 4 or 5 times, this severely.

One time I woke up in the middle of the night from a sound sleep, so dizzy I started throwing up!! Another time I woke, and stood up and literally fell right back on my bed, I was so dizzy!! Another time, I got really dizzy that I had to lay perfectly still for about 4 hours. If I moved even to turn my head, I would get sick!!

Finally...
Then, a little over 8 years ago, I was sent to an ENT ( Ear/Nose/Throat doctor) who was able to put a name to what has been wrong with me all my life. Morbus Menieres. What we call MM for short. This is an inner ear disorder that causes the symptoms you will read here in these stories. But almost each one of us in these stories have other symptoms that are not considered regular symptoms of MM!!

I have almost continuous mild dizziness, severe headaches,
pain in my neck and upper shoulders. These are not even considered symptoms of MM, but are caused because we have to try and compensate for our balance, we strain our necks trying to stand up straight, and our eyes, ears, etc are fighting with each other trying to balance our bodies, which makes our dizziness worse. My left ear (bad ear) rings/hisses and clicks quite often. The hissing/ringing I mostly hear when it is quiet. But sometimes just sitting watching television, it will all of the sudden happen. Or the clicking can happen at anytime. Nothing that I know of causes it. Many times my ears will feel like they do when you go up into a mountain, or flying, and your ears need to pop, due to air pressure. But they will not do this. The pressure just keeps building up! It can get very painful. I feel like I almost always have a sinus infection, with the pressure and pain in and around my eyes, ears, even my teeth might hurt! Many of us have this same problem. Yet is not considered an MM symptom!!

I was told that most people don't have the almost continuous mild dizziness that I have. But I don't necessarily believe this, as since being on our coping list, I have talked to many people who feel almost the same as I do!! We sometimes say that we, the people who have MM, know more than many of the doctors who are supposedly treating us for it!! As far as I know there is no known reason or cause for Menders Disease at this time. Many theories, but no proven facts. Ear infections, stress, allergies, pollen, smog, barometric pressure (weather) etc. are all thought to be contributors to MM. Salt and even sugar is known to affect MM. Some of us these things affect a lot, and others not at all. So even though we all have MM, we are all each very different in what affects us!! It is a very strange disease.

I also have severe arthritis in my neck and up and down my spine. Have spinal stenosis (which is the narrowing of the spinal column) where it goes up through my neck into my brain, compressing a lot of the nerves in the spinal column itself and TMJ, which is when your jaws are out of alignment. All of which can cause the dizziness, headaches, etc., etc., etc., So I am never sure which is causing what in my particular situation.

Many of us have tried numerous medications without any success at all.
Yet many of us have tried the same medications with GREAT results. I happen to be one that most of the medications don't do a lot for. I do take very low mg valium, and a diuretic. Niacin at times which opens the blood vessels. I take a multi vitamin/mineral supplement. I take Gingko, as it is suppose to help your memory. Many of us MMer's complain of what we call Brain Fog. This is losing your concentration, or what you were/are talking about. Where you are going. I have forgotten things on the stove, and burned up pans more than once. Put things in the refrigerator that do not belong there!! I have post its all over my home to remind me to do things! It is funny in ways, but very serious in many ways as well!!

It has also affected my private life to a great deal.
I missed doing many things in my life due to MM! Social engagements, being able to do things with my son, etc. As some of us get a little afraid to go places, never knowing what or where we might have an attack. Large crowds have always bothered me. I have a girlfriend who always said I made myself sick, because I didn't like to Christmas shop!! And this was not true!! It is the crowds that bring on the attacks!! The noise, pushing and shoving, etc. As does driving on curvy mountain roads, or freeways!! I have only driven (the car itself) on a freeway probably 15 to 20 times in my life!! But it took finding the coping list that made me realize this, and that I was as "normal" as many of the others with these feelings!! My son, as a little boy, took care of me many times.. I was always afraid that I was depending on or relying on him too much. So much so that I asked a doctor about it one time. He said my son was fine!! I wasn't overburdening him. But these are just some of the things that people with MM live with, besides the disease itself!! Some are even afraid to have children!!

Well, I am still living with MM. And probably will the rest of my life.
I finally was put on SS almost three years ago due to this Monster disease!! I could no longer even try to work. I go out very little anymore. And most of my family and friends know about my problems. They still love me, but they still can't truly understand, as they have never been through it themselves. This is why the coping list means so much to each and everyone of us! Because we KNOW, and can help each other through these bad times. We can vent our frustrations, anger and fears and know that someone out there truly understands what we are going through. But we also share the joys and love of each other. We are like a family within ourselves. We all hope to reach and help others out there who may be going through this same thing. That is why we are writing our stories. I hope this helps some of you at least a little bit in some way. And helps you to understand what you, or one of your loved ones may be going through in their lives.

Sharon Harness
October, 2002