Recently I found that a friend of mine has a daughter that is suffering from Meneiere's Disease. I was doing some research online and found this printed on
Menieres.org I thought maybe someone will find some solace in it. I am looking for forums and support sites that are formed around Meneiere's. If anyone has any to add for me, please contact me @ acunniff4852@gmail.com or add a comment to this post.
Thank you, and enjoy this post:
MENIERE'S DISEASERaymond Hines, the owner of Menieres.org, recently had an article published in the Spring 2008 issue of "Hearing Health" magazine by the Deafness Research Foundation. They asked him to write about how he coped with the vagrancies of Meniere's Disease and it is being reprinted here in the hopes it can also help you or at least give your friends and family what it's like to battle with Meniere's Disease.
Coping with Meniere's Disease
I'll never forget the day my world literally turned upside down, sideways, and then some. It was my first vertigo attack and even to this day -- more than ten years ago -- I can vividly remember being thrown into an emotional and physical tornado. I remember the violent spinning as if on a carnival ride gone awry in the worst way possible, the seemingly endless vomiting, and my bewildered mind crying for the spinning to please just stop.
Eight hours later the world finally came to a still and I was able to get back on my wobbly feet. At the time, I shrugged this off to a very bad case of food poisoning, not knowing back then that this was just the beginning of a lifelong struggle with Meniere's Disease. Over the next few years I would be plagued with the Pandora's box of aliments that came with it - violent vertigo attacks, further loss of hearing and balance, loud ringing in the ears, heavy brain fog, and the ensuing emotional trauma resulting from dealing with it.
Dealing with the physical part of Meniere's Disease is bad enough, but dealing with it emotionally can be even harder. Imagine the impending fear and anxiety that pours in when you feel an imminent vertigo attack coming - for many, panic attacks kick in at the same time, further worsening the situation. Imagine lying in bed riding out a battle royale going on in your ears and balance system. You're totally helpless and just trying to hang on for dear life, hoping against all odds that it'd be a mercifully short ride.
Then there's the damaging long-term effects of having to deal with Meniere's Disease that inexorably changes your life. There's the fear of going out into public places, even grocery stores whose floor patterns and row after row of aisles can make one feel woozy due to being overloaded with visual stimulus. There's the need to alter your lifestyle where you can't do the things you used to love and have taken for granted, such as riding roller coasters or even flying on planes for some. Plus, your own mind starts to question a lot of things that come with any life changing event - agony, sorrow, anger, despair, "why me?", and wondering how to deal with this the rest of your life.
It truly does seem like it's the end of the world for many of us that have to deal with Meniere's Disease and it is perfectly understandable given all the horrors that come with it.
Yet, the good news is there's thousands of us out there that have learned to deal with it and even live with it somehow. Although Meniere's Disease is considered incurable, there's lots of ways you can try to manage it the best you can. The key is to keep trying to find that right combination of factors that can help you, be it certain medications, or specific lifestyle changes such as reducing the amount of sodium intake, or even just getting in better shape health wise by exercising more. Due to the idiopathic nature of the disease, many different things work for many different folks, so it's important to explore every option available by doing your research and discussing it with your doctor.
It's also very important to come to terms with your disease emotionally and mentally. Do not let it control your life! At times you can feel all alone in the world with it, so it's essential that you find a support group that can include your friends and family to help you cope with Meniere's Disease. There's also plenty of places on the internet to find a group that suits you and provides you with the support you need. There's no greater feeling than finding a like group of fellow sufferers who understand exactly what you are going through that embrace you, give you a virtual hug, and then share their ways of coping with a chronic illness.
Above all, a positive attitude can go a long way, especially once you're past the "why me" stage. Knowing that you're not going to let this thing beat you and that you're still going to try to live your life to the fullest can be an enormous mental boost in coping with Meniere's Disease.
I'm a good example of a success story when it comes to living and coping with Meniere's Disease. Early on, it was a big struggle trying to learn how to deal with it mentally and physically. I was mired in a period of mourning and self-pity and I was letting the disease dictate my life. I even almost lost my own business due to an inability to run it. Fortunately, I decided to plow forward with my life and take it back. My doctor and I researched and found the best ways to control my symptoms, I changed my attitude to one of "I cannot" to "Do the best I can", and as with my profound hearing loss since birth, treated Meniere's Disease as just another obstacle to work around. As a result, my life is as normal as it can be, my business as flourished, and more importantly, I live a happy and fulfilling life.
You can do it too! Stay positive, surround yourself with a good support group of friends and family (including on the internet), and don't ever give up - you are not alone. Just remember that the down moments you'll encounter with Meniere's Disease are just speed bumps in the road of your life.
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