Meniere's– "As The World Spins"

An eddy of pain and tears is what I have been experiencing for at least the past five months.  For those not exactly sure what I mean by eddy, well an eddy is a whirlpool in a body of water.  It is usually accompanied by turbulence and can wreak havoc on any vessel nearby.  Six years ago I loved the changing weather.  Not really a fan of snow and sleet since the first snow I ever drove in was a blizzard and I know how dangerous snow and ice can be (not to mention C-O-L-D).  But I did enjoy rain and its purifying properties in the spring and summer.  I would occasionally sit out on the deck and watch the rain as it fell on the cemetery and playground of the church next door.  It was calming and relaxing.  Now, not so much.

If you live in the Knoxville area you know how much rain  (filled in with bits of snow here and there) we have had since December.  I gave up using umbrellas after being introduced to Meniere’s Disease.  You take a physically off balanced person and give them an umbrella, let a gust of wind come along and the result is Mary Poppins flying up the highway.  Getting wet is a better option.  Last June when my original grommets fell out, not only did I spin again for the first time in eight months, but I also gained a new trigger ~ the weather.  I really felt for those with Meniere’s who called themselves walking barometers, but honestly I hadn’t a clue what they actually went through.  Guess someone felt I should have first hand knowledge.  With all the rain and snow we have had, I have gotten to know my couch very intimately.

The incoming storm already has my ears going crazy

Sometimes I think I feel weather fronts moving in 100 miles away.  I can feel my ears crawling and start with a deep ache and look outside to see bright sunny skies.  However, by the time the front moves in, I am in so much pain from both my ears that I have a pounding headache to go with it and I am laying on the couch with the heating pad on my ears.  If I had to choose between this and having full vertigo at least once a month, I would choose my current situation.

I haven’t been able to afford to see my doctor regularly as he desires since I have no medical insurance and no regular income.  However, a couple months ago I was sitting on the couch with my laptop doing my usually Shabbat routine when all of a sudden the room began to spin.  It was all I could do to set the computer aside and lay down on the couch and remain still for a couple hours till it passed.  I knew I had to scrape the money together to go see the doctor.  I went in on a snowy/sleety/rainy day with the hopes that it was just a blockage that could be fixed with drops or suction.  My hopes quickly turned to tears when he said that the grommet in my right ear was dislodged with debris around it indicating blockage.  He couldn’t be sure about the left side so I had to have a pressure test run to detect the status of my eardrums.

I sat and cried.   When I was taken for the test, I walked through the hall clinging to the wall and crying.  It was determined that the right eardrum was closed over but we could not be sure that wax and debris had not gotten behind it to cause infection.  The left ear and grommet were intact and did not appear to be blocked.  I still cried.  I cried in part because I knew how much it would hurt to have the grommet procedure repeated and then it would take several days for me to get back to doing well.  The other reason I cried was recalling that it cost near $400 to have the grommets inserted last June.  I don’t have that kind of money.  One good thing was that it was found after reopening my right eardrum the doctor found that there was no debris, wax or moisture that got behind the eardrum to cause infection.  I have been caught in an eddy of pain and tears for  five months.  Hopefully now I can begin to maneuver out of the area and toward shallow waters if not the embankment.

The rain loves to wreak havoc on my ears and my head

A year ago I had grommets inserted into my eardrums for the purpose of being able to use a Miniette device.  However, I found it was the grommets and not the Miniette that put me into the “well controlled” category.  Before this, my known triggers were stress and being a girl.  the grommets were supposed to last about nine months.  This should have taken me to mid July.  However, as my neuro-otologist pointed out, I am not normal and have trouble following standards.

The third week of June, just one week before my scheduled appointment with my doctor, I decided to relax in bed for a while before getting up to enjoy the Shabbat.  I rolled over on my left side and tucked the pillow up under my neck.  At this point I felt a ‘crunch, crackle and pop’ in my left ear.  I lay perfectly still for a bit, afraid to move, not knowing what was happening.  When I finally sat up my world was spinning.  I had not felt this way since mid October.  I made my way to the couch and pretty much remained there until Monday when I could call the doctor.

Anyone who has Meniere’s or is close to someone with Meniere’s, knows how unpredictable this monster is.  by the time I got in for my Friday appointment, we had determined that I now have a third trigger ~ WEATHER.  Now I fully understand those who refer to themselves as “walking barometers”.  We got new grommets inserted and this time they should last two years.

While I didn’t have issues with the original triggers after the grommets were inserted, I still have minor issues with the weather changes.  It seems that when the weather changes now I get a dull ache deep in my ears and experience some fluttering.  In the beginning of September I was lucky enough to get H1N1.  This proved to have a bad effect on my ears.  I had lots of aching and it seemed my hearing worsened.  When the illness cleared I noticed that I now have constant tinnitus in both my ears instead of just the left ear.  My doctor sternly advised that I not get either versions of the flu again for the remainder of the season. (As if…)

Earlier this week I was getting over what I initially thought was a second round of the flu, but  thankfully, turned out to be Acute Bronchitis instead.  My left ear began doing weird things so I put in a call to my otos nurse.  When she returned my call, we talked.  She reminded me about the weather and advised I take it easy and keep an eye on things and call back if they don’t improve or get worse.  you know, the usual blah, blah, blah.

Everyday we have ups and downs.  Right now it appears that I am on more of a Merry-Go-Round.  For four years I felt as if I was on a very wild roller-coaster.  I HATE roller-coasters, so I am glad I am no longer on that part of this ride.  I will accept being on a Merry-Go-Round with Meniere’s although I wish I could be on a real one instead.  I will continue to research (for now with a clearer head) and write my book while educating anyone and everyone I can about this dragon that invaded my life five years ago.  one day, he will be totally defeated.  Until then, my sword stands ready to fight whenever he comes to prey.

One thing well known in the world of Meniere’s is how long it takes to figure things out. When I first presented in November 2004, I thought it was an inner ear infection. My second bout was February 2005 and I got the doctors involved. From there it took seven months to reach a diagnosis. Following the diagnosis it took several months longer to determine my triggers; stress and being a girl. Just this past June I added weather as a third trigger.

Diagnosis and triggers are only a part of the equation. I believe the longest process is determining treatment. While trying to determine what will help relieve your symptoms (if anything will) you work on treating the symptoms and the triggers. Since each person is different regarding their symptoms and triggers, so it goes that long-term relief is also different. Meaning, what works for one may not work for the next.

It took about four years from the time I first presented for me to find the one thing that helped me to return to my life nearly as if it were before Meniere’s found me. After many attempts at treatments, October 2008, grommets were implanted in my eardrums and I felt better than I have in longer than I can remember. I am moving in the right direction now and I hope that all those with Meniere’s can do the same.