Living with Ménière’s Disease

Never heard of it? Neither had I 18 months ago, it is a “silent” disease. Now it’s a daily presence in my life.

The Ménière’s Society (http://www.menieres.org.uk/) describes it as “a long term, progressive condition affecting the balance and hearing parts of the inner ear. Symptoms are acute attacks of vertigo (severe dizziness), fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear. The incidence is between 1:1000 and 1:2000 of the population; depending on the source. Both sexes are equally affected and it can occur at any age. About 7-10% of sufferers have a family history of the disease.”

  • Ever been swimming and had the feeling you have water in your ear you can’t shake? That’s what I have every day. Some days it’s so bad it feels like my head is leaning to one side with the weight.
  • Ever got up from sitting down and felt dizzy? Had one too many drinks and the room wobbles? In the midst of an attack that’s what it feels like permanently. Add to that a hangover style headache and you’re there.
  • Had ringing in the ear when you’ve had your MP3 player too loud? Yep once again pretty much every day, varying degrees depending on where in the cycle I am. Sometimes so bad I want to claw my ear off. Thank god for audio books at night to distract me! Ménière’s causes damage to the hair receptors in the inner ear.
  • Increasing deafness. I am that annoying person who says “Pardon” pretty much at least once a conversation. See me turning my head so my left side is facing you? That’s because the right has a “moderate to severe hearing loss” It is believed this is caused by an increase in pressure in the endolymphatic space.

No-one knows what causes it.  Mine came on suddenly.  I had been feeling a bit dizzy on and off for a few days. Suddenly I was sat at my desk and felt sick, next thing I knew I couldn’t even lift my head off the toilet seat or even open my eyes I was that dizzy.  Work ended up calling an ambulance as I couldn’t move. *Embarrasing*

It took me 18 months from that day to get a diagnosis with attacks averaging every couple of months.

Symptoms vary for each sufferer. The main symptoms are unpredictable attacks of vertigo with nausea and vomiting. Attacks can last from a few minutes to 24 hours. There may also be tinnitus, hearing loss and a feeling of fullness in the affected ear.  Usually only one ear is affected (in my case the right), but up to 50% of sufferers may develop the condition in both ears.

My symptoms are a feeling of pressure in my ear which steadily gets worse, along with “louder” tinnitus. Followed by increasing dizzy spells finally culminating in a severe headache and not being able to walk in a straight line.  Strangely once I vomit the symptoms abate within hours.

There is no known cure for Ménière’s. I have anit-vertigo and “travel sickness” tablets that I carry round with me permanently. The hearing loss is too far gone in my case so inevitably I will end up with a hearing aid.  When I was first told this I had visions of the massive hearing aids that you used to see elderly men wear, but I am reliably informed they are a lot smaller now!

hearing_aid

 

For more information on Ménière’s contact the Ménière’s Society http://www.menieres.org.uk/

Hearing aid picture from www.csrinaction.org

 

 

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