Me and My Meniere’s

Barbara Mikus Nealon

Thinking about Meniere’s Disease, putting it to the forefront of my mind, is difficult for me to do.  For many years now I have worked at putting Meniere’s out of my mind, or at least losing it somewhere there in the back.   Of course, that is a mind over matter deal.  I was diagnosed with bilateral Meniere’s Disease in 1993.

Over the years I have learned that for me, if I am constantly worrying about this illness and how it affects my life it can become quite depressing.    Having had this now for quite a few years I know what usually triggers episodes.  I know what to do and what to shy away from to keep myself as episode free as possible and I choose to do those things as part of my everyday routine, the same as showering, having meals and remembering to take my vitamins.  By making this a part of my daily ritual I am then able to put the Meniere’s away.  It has become a part of who I am.  When my symptoms become more severe, or I do experience an episode, I deal with it, get over it, and then think about other more interesting things—in other words I try to forget about it.   I am not saying that my Meniere’s is not there just because I choose not to think about it.

Meniere’s Symptoms

I have occasional episodes, sometimes quite severe with no rhyme or reason to why or when or how often. I have symptoms daily.  I can barely remember not having symptoms every day.  I wake each morning with fullness in my ears like I was just in the mountains or deplaning from a flight (but with no memory of a beautiful mountain trip).  I also wake with noises (tinnitus) in both of my ears—ringing, shushing, and other sounds that I can’t even really describe because they are just too weird.  I almost always have a headache.  Sometimes my hearing is decent and sometime it is not. The symptoms I have are not usually the same in each ear on the same day.  I used to have one ear that was always the worse ear.  They must have become politically correct because now they are equal opportunity ears taking turns on which will be the bad ear on a certain day. I remind myself that there are worse things in life than Meniere’s Disease, I try to be positive.  However, I have bad days that I feel I am ugly towards others.  I have bad days that I feel sorry for myself.  I have bad days that I don’t want to do anything no matter how fun and exciting it may be.  But I try to make those few and far between.

You may wonder why I am writing about Meniere’s Disease when I have admitted to not wanting to think about it.  Well, people that know me may say it’s because I am a little crazy—doesn’t Meniere’s do that to all of us?  That’s what I tell myself anyway!  Actually I was asked to do this by a friend not only because I have Meniere’s, but also because I am an audiologist. My friend thought I might have more insight about the disease because of this.  I guess we shall see.  I have titled this Me and My Meniere’s.  The reason is when I write about this, I want to write about my issues with it, my problems, my ideas, and dealing with it from being a patient and an audiologist.  Each person with this disease is different than the next.  Yes, overall we all fit into one category but we all wear different stripes…or polka dots, whatever.  There are plenty of web sites for Meniere’s regarding the anatomical, medical, and surgical aspects of this disease.  That is not my intent.  Maybe my writing about it, having had it for quite a while and also having dealt with it in a professional setting will help you or others not to feel alone with it.  Maybe it can help you deal with it in a better or different way.  I hope so.

A little background on myself.
1975. University of Michigan, BA
1976. Central MI University, MA, Audiology
1977. Certificate of Clinical Competency, Audiology
1976 – 1993.  Audiologist in MI working with ENT physicians.
1993 – 2003.  Audiologist in TX working with a Neurotolgist.