A Hearing Loss & Late Deafened Blog

Life Can Be Hell With Menieres Disease

In Uncategorized on November 9, 2010 at 12:08 am

(This was previously posted in my personal blog, Face Me. )

Earlier this week I wrote a little bit about some of the difficulties you can have living with hearing people when you’re deaf.   I am not sure if I ever mentioned my husband’s hearing loss.

About twelve years ago he started having spinning vertigo attacks accompanied by loud tinnitus and fluctuating hearing loss.   There was a specific pattern to it where the tinnitus and plugged ear feeling would begin.  Then he got a headache, then full-blown vertigo and vomiting for hours.  Then exhaustion, headache, lethargy –and finally he would feel OK.   Within weeks or months the cycle would start all over again.  This went on for about ten years.  At its worst he would throw up for hours non-stop and was having weekly attacks.

Usually the attacks happened at home  because he had a good twenty-four hour warning period before they hit.  When I tell people he was throwing up for eight hours, they think it was like the flu where you throw up once or twice during an eight hour period with nausea in between.  That’s not how it is.  During the worst of it he was throwing up for eight full hours with his head in the toilet the entire time and he was unable to move.  He would throw up until there was nothing left but dry heaves, and he still couldn’t let go of the toilet.  Eventually he would collapse on the floor out of sheer exhaustion.   Then I would put blankets on him and leave him there on the bathroom floor because he didn’t want to move.

He has Menieres.

Sometimes it would hit more suddenly.   One time he had an attack just as he pulled in to work.  He spent the day in his parking garage at work hanging onto his steering wheel, so paralyzed that he couldn’t even get his cell phone out of his pocket to call for help.  He said it felt like if he let go of the wheel he would fall off the end of the earth.

Another time we were at a family picnic for our son’s college orientation.  I looked out my son’s dorm window to see my husband staggering across the lawn.  People thought he was drunk, but I knew he was on the verge of an attack.  He rarely drinks alcohol of any kind except the occasional beer with spicy food.   The college infirmary wasn’t staffed so he couldn’t go there.  Driving him home wasn’t an option since we lived hours away.   He ended up in an out of the way spot on the lawn puking his guts out.  I assure you this did not make a good impression on my son’s dorm mate or his parents, who wondered why my husband was staggering around and throwing up.   I couldn’t stick around to explain and didn’t care what they thought.

The worst part for me was not being able to help him.

It was pure hell.

After years of trying many, many different treatments it just sort of petered out on its own.   He hasn’t had an attack for two years now, other than some minor bouts with vertigo and motion sickness. We’re still very nervous about doing things that might cause an attack.

The majority of  Menieres patients can be treated with diuretics and a low salt diet, but that never worked for my husband.  There are many other treatments a person can try with varying results.  It’s pretty much a crap shoot.

Some people say Menieres can be caused by stress, but we didn’t find that to be true either.    There was no rhyme or reason to the attacks.

The problem with Menieres is not everyone presents the same symptoms or to the same exact degree.   For example a horizontal spinning attack is different from a vertical up and down attack.   If your doctor doesn’t ask  exactly which direction you spin he might misdiagnose.   An attack can come on gradually or violently.  Attacks can last days or minutes.   Diagnosis depends on ruling out other conditions that can cause vertigo.  There is no specific test for Menieres.  It can take years just to get a diagnosis, and more years to figure out a treatment that works.

The hearing loss was permanent unfortunately.

The hearing loss was minor compared to the vertigo.

I still worry about it, and prepare for the worst whenever we go somewhere together.

We have found menieres.org was a good source of helpful information.   Not all of it the information on this site is reliable, but it gave us some good talking points to discuss with the doctors we saw.

*Five minutes after I pushed the ‘publish’ button on this post, I discovered he was having a minor attack.  Hence the crossed out sentence in paragraph seven.  We’re still living this nightmare, though it’s not as bad as it used to be.  I’m afraid I jinxed him by writing about it.

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  1. I’m sorry to hear about your husband’s ordeal. I’ve been deaf all my life BUT I have a history of Meniere’s Syndrome. I’m now in 50’s. My symptoms were at their worst during my childhood with acute attacks of vertigo accompanied with tinnitus and vomiting. I’ve had three inner ear surgeries which helped only a little. Subtle symptoms persisted like floating sensations, mild vertigo attacks, nausea and occasional tinnitus over the years. Then I learned from an ENT specialist at Kaiser about wonders of MENIETT low pressure generator device. There’s no need for invasive surgery for that. Just tiny openings in eardrums with tubes to keep circulation open. Plug with Meniett device regularly as instructed by the specialist. Keeps the fluid inside cochlear circulating like it’s supposed to. It HAS WORKED like a MIRACLE for me past four years. I feel like I’m having my life back. I even no longer cringe in pain during flights due to intense ear pressure at high altitudes. I definitely recommend it and tell your husband to try it!!!! Ask the insurer to COVER ALL EXPENSES, insist on them! http://www.medtronic.com/your-health/menieres-disease/device/our-menieres-disease/meniett/ Good luck, Wanda

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