I was first introduced to Meniere's Disease four years ago when my mother started to develop symptoms of it. I was a Sophomore in high school at the time, and my family and I were getting ready to go on a cruise that summer for our vacation. My mother started getting symptoms she would call "dizzy spells" and she found it very hard to balance herself when these symptoms would come over her.
Soon my mother started to realize that she had a constant ringing in her right ear that never seemed to go away. She went to the doctor, and they said that this could be from her migraine problems causing the dizzy spells but the ringing in the ear and the hearing loss was a separate issue. My mom is a nurse practitioner, and goes to long term care and rehab facilities everyday. Part of her job entails traveling from these different nursing homes, which she found to be very hard once she developed symptoms of her Meniere's Disease.
The internet defines Meniere's Disease as "an inner ear disorder that causes episodes of vertigo." Well, this was exactly what my mother was experiencing, and exactly what has changed her entire life.
When she would experience the vertigo, she would have a sudden onset of dizziness accompanied by profuse sweating, then the nausea and vomiting would start. She would be completely frozen in a chair, afraid to move and unable to get herself to the bathroom without help. She had an episode at work where she had to be taken out in a wheelchair and driven home by a co-worker. Her vision is affected, and you can see her eyes jumping during these attacks. She would say how embarrassed she would be when this would hit her at work. She found it hard to operate her car and sometimes would have to pull over to the side of the road until the dizziness would stop. Not being diagnosed with any problems and not knowing what was wrong with her scared my mom very much, because she wasn't sure what could be causing her to feel so sick all of the time.
As the disease progressed, her symptoms only got worse. She found that if she overexerted herself in any way such as cleaning, or doing any physical activity, she would suffer from a terrible dizzy spell that would last for hours. The dizziness would cause her to feel nauseous and she would be in and out of the bathroom vomiting for two to four hours. The hearing in that ear continued to diminish and she would say, "stand on my left side, 'cause I can't hear you if you are on my right side."
Finally, with some research of her own and continuous doctor visits, she was diagnosed with Meniere's Disease. Okay, so now what? I guess you're wondering and waiting to hear what the doctors did for her, and how she was cured, right? Well, the doctors basically told her that there is no definite cure for the disease and that maybe in time it would burn itself out, or she will have to learn to live with it. One doctor told her she may need to go out of work on disability. They said there is some treatments that may help, but nothing could cure it. One possible treatment was an ear surgery that would take what little hearing she had totally away. This was heartbreaking for my mom to hear, because at the time she had gotten to the point where she was scared to leave the house because she never knew when the vertigo would come over her and if anyone would be there to help her.
She made simple life changes that the doctors said would help reduce the amount of vertigo she would experience, such as reducing the amount of salt and caffeine in her diet. But even still, that hasn't helped her out too much. She says there are some days where she will feel okay, but she never feels 100%. Can you imagine living your life each day never feeling like yourself?
What people do not understand is how life changing this disease is. My mom says that the simplest things can cause one of her dizzy spells and she has to be extra careful with the way she lives her life. A simple turn of her head, the lighting of a room, or a loud noise can effect my mom and set off one of these spells. She thinks about the future and the possibility that one of these episodes could cause her to miss something big in the lives of myself or my sister. She imagines missing one of our graduations or wedding because of this disease. Not many people are aware of this disease, and I'll admit before my mother had it I never even heard of it before. My mom being a nurse, barely knew anything about it either.
My mom says that you never realize how fast your life can change and you take for granted the little things you are able to do on a day to day basis without even thinking about it. My mom can't go to concerts anymore because the loud music can cause her to have an episode, and we always loved going to concerts together. She can't go to amusement parks and ride on roller coasters, which she always loved doing with her father ever since she was a little kid. She even has trouble bending down and picking something off the ground, because the tilt of her head messes with her balance and can cause her to experience the vertigo. Not only did this disease change my mother's life, but it changed my whole family's as well.
There is no cure, and my mom has been living with this disease for four years and I've seen how much it has affected her life. I think this disease needs to be more acknowledged and researched by professionals so that they can find some type of way to help people who suffer from this like my mother. Living in constant fear of doing the things you love because you're not sure if one of these dizzy spells will come over you is no way to live. There needs to be something more that we can do to help.
