Meniere's Update

A lovely flower from a grateful client

I am back with another update on my meniere's disease.  Please forgive me.  I don't mean to blather on and bore you to tears.  But I need to keep a journal of my symptoms and the way my house functions a hard copy journal would disappear.  So bear with me.  Skip over this post if need be.  I'll be back with crafty updates soon.

Over the weekend I felt GREAT.  As in 100% normal.  As in I was a perfectly capable and well human being.  As in I could HEAR. This is also remarkable as I was in the midst of working (last week I logged 65 hours in seven days; three night shifts and two day shifts).  No tinnitus or dizziness or head fog.

Work was busy and I had a surgery to perform (a GDV on a dog).  I made an effort to appreciate the experience.  If this disease continues (especially if it worsens) I'll no longer be able to perform surgery.

Fast forward to Tuesday, my first day off work.  The tinnitus in my left ear returned (why does it always come back when I have days off?).

Then yesterday.  Yesterday Middle and I went to get allergy shots (I've been getting them for five years so this is nothing new).  After shots we went to pick Little up from dance class.  We were nearly there when my tinnitus increased.  Not only did it increase but I had it in both ears.  This seems to be my warning sign that a vertigo attack is impending.

I spent a good 30 seconds trying to convince myself I was imagining the tinnitus; that it was simply a sound my car was making.  Then I spent another 30 seconds inwardly chanting I will not have an attack, I will not have an attack.  Then I had an attack.

Fortunately we were nearly there.  I was able to pull over in the dance parking lot. The actual vertigo portion was relatively short-lived (maybe 45 seconds).  Middle went in to get Little and I sat in the car waiting to see what was going to happen next.  My head was foggy, I was a little off balance but felt okay so long as I didn't quickly turn my head from side to side.  I was able to drive home.

The upside?  No real nausea and no vomiting.  Seriously.  This is a very good thing.

Now, as I type, I feel slightly off balance (even though I'm sitting in a chair).  I again feel as if I'm on a boat -- swaying slightly back and forth.  Not like I'm going to fall over, just slightly off balance.

So here are the dilemmas (and there are a multitude of them).

•  Do I keep driving?  For now, for me, the answer is yes.  I seem to have fair warning before and impending attack and should be able to pull over.  Of course if I'm feeling particularly off balance then I won't drive.  If I start having drop attacks then driving might be out.  
• Do I allow other people's children in my car?  On a good day, a day without tinnitus,  yes.  When my ear is ringing - no.  It's just not a good idea.  
• Should I get a cell phone?  Yes.  I probably should.  There may be a time in the future when I need someone to come pick me up.  
• Was this caused by my allergy shots?  Who the heck knows.  Certainly the tinnitus preceded the injections but they could have pushed things over the edge.  Allergy shots are recommended for people with meniere's as it is thought to reduce overall body inflammation. 
• How is this going to affect my ability to work?  Thus far I've had one mild vertigo episode at work.  I was able to lay down and it passed.  If these episodes become more frequent and more severe they will be a problem.  If I'm having tinnitus and have to go into surgery I may have to have someone on call.  Someone to come in should things go south.  This doesn't make me feel particularly capable. 
• Can we save enough money to get us by should these attacks get worse?  Good question.  We certainly don't have that three months pay set aside (the amount of time until disability would kick in). 
• At what point would my disability insurance consider me disabled?  Now I am working and functioning.  But has this been sheer luck?  My attacks have happened mostly during my off hours.
• How much is work, and my schedule, affecting this disease?  I don't know.  I'm sure a lack of sleep does not help. 
• How long would it take and how difficult would it be to file a disability claim?  I have no idea.  I'm not ready to file a claim just yet but am wondering and worrying about the future. 
• When do I notify my disability insurance about an impending problem?  Again I have no idea.  

And there you have it.  More questions than answers. 

Tomorrow I have another doctor's appointment at the ENT.  This time with the meniere's specialist.  Truth-be-told I feel silly going.  There is not much they can do.  I'm capable of reading up on this disease on my own.  But, again, I want documentation should things get worse. 

For now I'll just appreciate things as they are.  Appreciate my ability to work.  Appreciate driving. Appreciate walking.  And it looks like that cell phone I've been wanting but haven't quite been able to justify is also in my future.  I'm going to have fun with that too.  

xo. 

Oh vertigo!

Meniere's Disease:  a incurable disease of the inner ear that causes spontaneous vertigo along with fluctuating hearing loss, ringing in the ear (tinnitus) and sometimes a feeling of fullness or pressure in the ear.

For the past several months I've had all the above symptoms except the vertigo.  As of Saturday I can add vertigo to the list.  I was sitting in my chair, had a sudden increase in ringing in both ears and felt like I was sinking into my chair.  Then came the dizziness and the nausea.  And let me tell you -- I do not like being nauseous.  Not one bit.  I went to bed, slept for eleven hours and woke up feeling normal.

Mind you normal contains moderate tinnitus and aural fullness in my left ear.  But, thankfully, normal does not yet contain dizziness and balance issues.

Sunday I stayed in my pajamas and laid low.  I was afraid to go out as I'm not one to cause a scene.  And I believe falling over in Costco, vomiting and being carried out would constitute a scene.

Monday morning I rolled over in bed and bam -- another episode.  Thankfully Mr. Peculiar had the day off.  He took the kids to school and, again, I slept.  After another couple of hours back to normal.

Yesterday I managed to take the kids to school.  And I managed a trip to Joann's.  But I was afraid -- afraid of  sudden dizziness, afraid of nausea, afraid of causing a ruckus.  If this continues it will become very  debilitating -- sheerly from the not knowing.

Last night my left ear was roaring.  I felt a little off balance. But I went to book club anyway (we were discussing The Fingersmith by Sarah Waters).  Why did I go?  Because I'm not ready to give up my life.  I'm not ready to submit to this insidious disease.  And it was fine.  I was fine.  In fact today I have less ringing in my ear.

The problem with menieres is there is nothing they can do.  "They" being the medical professionals.  They give you a diuretic and tell you to lay off salt.  Off on a wing and a prayer.  It will get worse before it gets better.  Better is total ablation of the inner ear (i.e. no more vertigo but no hearing either, oh and your balance may never be the same).  Fun, eh?

In an attempt to stave off the inevitable I'm trying a new diet, a low glycemic index diet, that might help.  The key is to keep blood glucose at even levels and therefore prevent spikes in insulin.  Hyperinsulinemia (high blood insulin) may play a role in the tinnitus and vertigo.  Emphasis on the may.

As of Monday I am eating every two hours.  Holy moly -- it's going to be hard to be food creative when eating this often.  Balanced fat, protein and carbs with each meal.  Which reminds me -- time to eat my oatmeal with nuts and berries.

Wish me luck!

xo.

The Trouble with Being a Nerdy Nerd

 I am a type A nerdy nerd when it comes to tests.  I want to do well.  I want to pass.  No, not just pass, I want to pass with flying colors. This neurosis applies not only to academics but to medical testing as well.  As a result this week was chock full of anxiety.

First I had an MRI.  A brain scan.  I am not claustrophobic, thankfully, and had no fear of the procedure. They packed my head neatly into a head rest and rolled me into the machine.  There was a mirror that showed a view of the outside. The view, however, was less than exciting (a fence) so I simply closed my eyes.  I did my best to be still and regulate my breathing.  All sorts of sounds emanated from the machine and, truth be told, it felt silly.  I could hardly imagine how the grunting and groaning around my head was going to elucidate any viable information.

Halfway through the exam they pulled me out of the tube for a injection of contrast material (gadolinium).  I expected to feel something, anything, beyond the prick of the needle.  But I didn't.  The remaining scan was uneventful and I went home to await the results.

And the results were good, the all clear, I think.  I can definitively tell you there is no mass or tumor in my head.  This is a very good thing.  I do have "asymmetry of the temporal horn to the lateral ventricles".  My doctor felt he needed to point this out to me.  He could not tell me what, if anything, it meant and I was left to do my own research.

From what I can tell this can be a normal variant on an MRI (especially if the positioning were a touch off).  It could also be an indication of schizophrenia or early parkinson's disease.  Schizophrenia I'm ruling out -- I think by now that would have reared it's ugly head.  Parkinsons?  We'll have to wait and see.  I do have a family history and do not want to dismiss it off hand.  But chances are it's nothing.

 I am clinging to two parts of the report.  1) "there is no significant difference in the size of the hippocampus between sides" -- i.e. my brain isn't squished and 2) there is no retrocochlear mass or other finding of significance.

This week I also had another test, a hearing test.  They put me in a sound proof booth and put on head phones.  That was the moment, when all was quiet, I realized how much noise was in my head.  My left ear was (is) a cacophony of sound with both low and high pitched ringing, as if someone left the radio on between stations.

In my hand was a buzzer, one like the contestants on Jeopardy hold.  I was to press it each time I heard a beep.  Anxious to do well I held the buzzer at the ready.  It was hard, though, to distinguish the beeps from  the noise in my head.  Was that beep?  Or was that ringing of my own accord?  I was once again struck by the idea that deafness is not an absence of sound.

Soon enough I figured out the sounds from the headphones caused a vibration in and around my ear.  Then I could distinguish external beeps from internal sound.  Has my body compensated that much that I am now feeling sound as much or more than I am hearing it?

At any rate I completed my test and was deflated to find that my hearing loss is just the same as before.  I took some solace knowing it hadn't worsened.  I am to return in six months for a recheck.

And that, my friends, is what I was up to this week.  I am now looking forward to delving into normal life.  Filling my autumn with baking and crafts and all the things that make me feel warm and fuzzy inside.   To start I need to figure out what is for dinner -- something appropriate for the first day of fall, yet simple and quick.  Hmmmm ....

xo.