05 January 2012

Let me introduce you to my enemy Meniere's....

Ok, so the idea of writing a blog about what its like to have Meniere's Disease seems kind of whiny to me, but I know for a fact that most people haven't heard of it, and if they have, they have never experienced the drama and trauma of every day living with a balance and hearing disorder. 

So let me give you a quick run down on what Meniere's is:
Ménière’s disease is a disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. Ménière’s disease usually affects only one ear.

Attacks of dizziness may come on suddenly or after a short period of tinnitus or muffled hearing. Some people will have single attacks of dizziness separated by long periods of time. Others may experience many attacks closer together over a number of days. Some people with Ménière’s disease have vertigo so extreme that they lose their balance and fall. These episodes are called “drop attacks.”

Ménière’s disease can develop at any age, but it is more likely to happen to adults between 40 and 60 years of age. The National Institute on Deafness and Other Communication Disorders (NIDCD) estimates that approximately 615,000 individuals in the United States are currently diagnosed with Ménière’s disease and that 45,500 cases are newly diagnosed each year.
  (quoted from http://www.nidcd.nih.gov/health/balance/pages/meniere.aspx )

That's the short, description.  It sounds lousy to be sure, but not life changing right?  Wrong.  The description doesn't do justice to the weeks of feeling sea-sick, not being able to walk straight, the pain in the ears, the hearing loss, and the seemingly at random attacks of full-blown world spinning puking your guts out vertigo.  It doesn't describe the need to reschedule your life around having to take a "water pill", or the having to let go of salty foods to help prevent another attack.  It doesn't describe how you have no balance in the dark, or how even standing during the national anthem gets you funny looks because you sway as if you had been drinking.  The new onset of car sickness is always a treat, and the exhausted feeling you have most of the time when you have "bad dizzy days" is never seen in those medical journals, but most of us that have Meniere's deal with it.  You see our bodies have to work SO hard to compensate for the false or missing information our vestibular system sends to the brain, it is physically exhausting.  Then there is the hearing loss.  You don't know how bad it is until you don't hear a car coming and step out into its path.  You cant hear conversations in a slightly noisy place anymore, and as weird as it may sound, even though you cant hear, loud noises hurt.  Bad.

For me, most days I'm a little off balance, my ears ring (yes both ears are affected) and the TV has to be turned up really loud.  I get "looks" because I stagger a lot when I walk because my balance is so bad, and I cant close my eyes at church to pray because most of my balance now is visual and I will tip over. My ears feel full all the time, and on not so good days, they hurt.  On the bad days it feels like an ear infection.  On really bad days, I'm too sick to get out of bed for several days really, but I try to anyway.  On the vertigo days, I spend those in the bathroom throwing up, or on the couch too tired to move from the meds that stop the spinning for a while.   I am not active as I once was.  Going for a walk can set it off for me, and sometimes it takes several days for it to set off a full blown attack, so I get in a good week of walking before the puke-fest begins.  Then its a couple of weeks before I feel like doing anything again. 

Today is a good day.  I only have the normal ringing and only a mild discomfort in my ears.  My balance is shot, but that's everyday. My hearing is slowly sliding towards deafness.  Its a slow decline, with the lower frequencies dropping off first. I notice things like not being able to hear alarm clocks, and not hearing cars, or the radio volume in the car is now set at "33" where it used to be set at "19".

(Oh and there is a distinct difference between "vertigo" and "dizzy".  Dizzy is a feeling of being off balance.  Vertigo is a full blown room spinning nightmare.   )

No one knows what causes Meniere's for sure.  Some think its genetic (it tends to run in families), others think its viral or an autoimmune reaction, others think it is caused by some type of trauma to the inner ear.  For some diet and medication is enough to keep it at bay.  For others surgery is required.  Many will need hearing aids, others will go totally deaf. Some rebound and have a remission for no reason, others are plagued with the beast for the rest of their lives.  There is no "cure".  Only treatment of symptoms and surgeries to eliminate the inner workings of the ear are available for this monster.  Although some people I know and love think it is caused by being overweight, there is NO evidence that this is the case. Just thought I'd clear that up.  :-)   Its a little different with every case so just because "Aunt Suzie" was able to master it, doesn't mean that "Billy" will. 

Some of you know it was because of Meniere's I lost my job as a firefighter.  It got that bad.  Because of the uncertain nature of the disease, we don't know how bad it will get, how deaf I will become, or anything other than what I feel day to day. 

So there you have it.  Meniere's from one who has it.  You have now had a short introduction to "The Beast".  I hope you never get to know it like I have.

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