menieresmommy











{December 19, 2011}   “What’s Up Doc?”

I am so excited to have my CT scan.

It is scheduled for a Saturday afternoon at 4:00.

Weird right?

Problem.

I have 3 children home on a Saturday. 

My husband needs to babysit while I have my CT but

I am frightened to drive to the hospital.

This is about a 25 minute drive on the freeway.

Oh well.

Take my chances.

Smash cut to me VERY patiently waiting with my

hospital gown on in the radiology waiting room.

I have noticed that my patience with anybody in the

medical field that could possibly help me in someway

is remarkably 

high.

Take as long as you Sister.

I get walked in to the enormous CT scan machine.

It’s beautiful matte finish with the words SIEMENS

beautifully

etched just above the opening.

“Just lay back and relax.”

My head was placed between two boards with foam

padding for comfort.

Okay, this isn’t too bad.

A plastic crate/face cover was place over my entire

face.

The shadows of tic tac toe were cast above by a

bright light shining in my face.

Okay, now I want out.

“This is to hold you head in place and help me with

the scan.”

“Are you ready?”

I am slowly pushed in just past my shoulders.

“Hold VERY still.”

“Okay.”

After a series of strange noises, I was done.

The tech was really nice to me.

I thought to myself, he must have seen something on

the computer screen.

What if he saw a brain tumor?

Now I must wait a week for the radiologists to read

the scan and send a full report to my ENT.

At this point, I am having 1 sometimes 2 HORRIFIC

attacks per day.

I cannot wait to get this show on the road.

Hurry up Mr. Radiologist, hurry the hell up!

I get a phone call from my ENT 3 days later on a Wed

afternoon.

“Hello Mrs. Ahlea, this is Dr. Wong.”

“Your CT scan results came

back.”………………………..Drum Roll Please

“SUSPICIOUS for 

superior semicircular canal dehiscence .”

Huh?

“What’s up Doc?”

“This means that there was no concrete evidence of

SSCD, just some small areas of suspicion.”

Swell.

“So what do I do?”

“Well nothing really. At this point we would not do

anything to treat this.” If you do have SSCD, it’s not

bad enough to

treat with surgery.”

I started to cry.

Back to square one.

WHAT IS WRONG WITH ME?

My  ENT said she was sorry that she couldn’t help me.

“Good Luck.”

OMG, I want to die.

I have to find an answer.

Every single moment of my life is lived in constant

fear of an attack.

This is no way to live. No quality of life.

Here comes the fun part.

Happy Spinning,

xoa

 

 



{November 4, 2011}   “I Can See Your Halo.”

I am counting the days until I get to see my ENT.

I am so excited to find out what is “really” going on.

Get the “magic” medication and put this nightmare behind me.

I walk in to the waiting room, check in and patiently wait for my name to be called.

Here I go.

The MA takes my weight 106

Blood pressure normal

“So your still having vertigo attacks?”

“yeah” just get me in that room NOW………

“The Dr. will be right in.”

Okay sighhhhhh

I see a flash of white light from the halo hanging over Dr. Wong’s head. (or are those horns?)

“Hello, what’s been going on?” 

I proceed to recap the last few weeks of my life.

I don’t leave out one miserable detail.

She is typing on her computer as I speak.

My eyes well with tears.

“It sounds like you have what’s called 

Superior Semi-Circular Canal Dehiscence Syndrome”

http://www.californiaearinstitute.com/ear-disorders-semi-circular-california-ear-institute.php

YES!!!!! Sound the bells, blow the whistles. We have a diagnosis friends.”

Dr. Wong then proceeds to show me a 3D model of the inner working of the ear.

WHAT IS SUPERIOR SEMI-CIRCULAR CANAL DEHISCENCE?

Superior Semi-circular Canal Dehiscence Syndrome (SSCD) is a very rare medical condition where a thinning or complete absence of a portion of the temporal bone overlying the superior semicircular canal of the inner ear causes hypersensitivity to sound and balance disorders. One unique characteristic of SSCD is that audiologically, the hearing loss appears to be conductive, though it is actually sensorineural. Computed Tomographic scanning (CT) and Magnetic Resonance Imaging (MRI) may be used to diagnose SSCD, and distinguish it from more common diseases with similar symptoms such as Meniere’s disease.

“This can be completely fixed with a small patch during surgery.”

Yes!!!!

WHAT ARE THE SYMPTOMS OF SUPERIOR SEMI-CIRCULAR CANAL DEHISCENCE SYNDROME?

Symptoms of SSCD include dizziness and balance problems which increases with activity and which is relieved by rest. A cardinal symptom of this disorder is vertigo produced with a loud sound. Other symptoms may include hearing loss, tinnitus and a fullness of the ear. The symptoms of SSCD can get worse with extended episodes of coughing, sneezing, or blowing of the nose. Sometimes the use of ones own voice or a musical instrument can also aggravate SSCD.

Yes!!!!!!!

“You need to have a CT scan in order to be sure and to be able to see exactly where the Dehiscence is located.”

“Okay, let’s do this sister.”

“We will have the nurse schedule the CT scan and I will speak to you when I get the radiology report.”

Excellent.

“Thanks Dr.”

“Your CT scan is scheduled for 2 weeks from now.”

YES!!!!

Finally, I know.

I have a name.

Finally, I see light at the end of this dark, lonely tunnel.

I am not excited about getting a CT scan.

Especially one of my brain area.

CT scans produce a HUGE amount of radiation.

Now I worry that I will get a brain tumor from the CT scan.

I Google.

I wish I didn’t do that.

Why do I do I do that?

I have no choice.

I can’t live this way.

Happy Spinning.

xoa



{October 30, 2011}   “I will just rest”

I will be Okay, (no I won't)

Approximately 3-4 days since the “school drop off from hell.”

I was driving home from dropping my 5-year-old off at school again.

The last horrific vertigo attack was since long gone from my memory.

It’s weird how vertigo attacks are like giving birth. You slowly forget over time how horrific they were. I think the human body has a way of anesthetizing the brain from horrific events. I’m sure this will materialize as Post Traumatic Stress Disorder in therapy soon.

I was about 1/4 mile from my house. I had one more child to drop off at another school. Husband gone to work for the day.

As I sit at the light, patiently waiting to turn green,

“What was That?”

Oh shit, nOOOOOOO

Not again

Please no.

My vision started to get blurry.

My hand went to shield my squinting eyes once again.

Please make it home, please make it home.

My head started to get heavy and lean-to the side as I came around the corner.

Do I seriously have to pull over 3 houses from my home and have an hour session of vertigo all alone in my car?

What about my daughter? She will think I am hurt or just forgot about her. I will make her tardy for school. Ruin her proud perfect attendance.

You all understand the when I’m down, I’m down?

Doesn’t matter where you are.

At Disneyland? Down.

At PTA meeting? Down.

In the car out front of your house? Down.

You may as well be in Alaska, Even if in your driveway down with an attack.

I fall out of my car, on top of the concrete.

I crawl on my hand and knees to get to the front door.

Even this is impossible.

What “normal” people don’t realize is that even crawling cannot be done when you have no sense of direction or gravity.

You don’t know which way to crawl and if you did, you can’t pick up your head to even do that.

As if just crawling normally from your car isn’t bad enough.

My daughter finds my lifeless body half in the house, half out the front door.

“Mom, are you okay?”

“No, mommy isn’t feeling well. Can you pull my body to my bed?”

Am I really saying this?

As she drops my body off at the edge of my bed, I gather every ounce of whatever it is I have in me to get onto my legs and fall into my bed.

I pull the covers up over my head.

I ask my daughter to please close the curtains.

I get into the fetal position

Start to sweat

Start to rock (not in the roll way)

Okay, I can get through this.

Here is the extra twist of the knife for a Meiere’s Mommy.

“Mom, aren’t you going to drive me to school?”

Shit.

“Ummmm, not today sweetie. Can you ask Mr. Harrison next door if you can grab a ride with him today?”

Okay.

The front door shuts.

I feel a sense of relief now that she is gone.

I can be alone to suffer.

The first pang of guilt is felt throughout my body.

I moan and groan and I rock.

What is going on?

What is happening to me?

I have to get this fixed ASAP

After a good hour, I wake to the feeling of Habanero peppers being rubbed into my eyes and this burning and throbbing pulsating from my temples.

Every muscle in my body is exhausted.

I need to sleep.

Okay, I will sleep.

Wait, who will pick my 3 children up from school? They all 3 go to different schools and get out at different times.

I need to schedule an emergency appointment with My ENT STAT.

I call and tell the receptionist this is an EMERGENCY.

She repeats, “you’re having vertigo sweetie?”

No, well yes but it’s REALLY bad.

We have a lot of people with the same problems unfortunately.

Seriously?

Am I a total pussy?

She schedules me for the following week.

In the mean time, I have a few more attacks.

All bad.

Is this “just vertigo?”

Is this just Benign Paroxysmal Position Vertigo?

Is this just some stupid crystals displaced in my middle ear like my Father-In-Law told me?

He said I just need to do these simple exercises. They are on You Tube.

After all, this is what got rid of his “vertigo” in just a couple of days.

I decide to try the exercises.

I barfed for 4 hours after.

I’m starting to feel a little anxious to leave the house.

I think I will try to stay home until I see Dr. Wong next week.

Well except for the 6 daily trips to drop off the kids and pick them up.

The shopping 3 times a week.

The dog to the vet.

The birthday party on Sat.

Getting a gift for the party on Sat.

PTA conference on Thursday night

I was just voted onto the school site council that meets monthly.

Ugh, okay nevermind.

I have to get this thing cured immediately…..

Can’t wait until my next appointment so my ENT can tell me what I “really” have and give me the medication to make it all better.

I have no choice in the matter.

I can’t live this way………..

Happy Spinning

xoa

 



{October 27, 2011}   “Yes or No?”

Best car for Meniere's Mommy.

I left the ENT office that fateful day. You know that feeling in the pit of your stomach? The one that tells you that your diagnosis of regular old vertigo is for sure something much more……..

I get on with life as usual.

The following week, I was driving my 5-year-old to Preppy K. This being the only Preppy K in our town, it was 8 or so miles from my house. I drive a Volkswagen Eurovan. One of those LONG vans.

It was about 7:45 am. It was cold outside and there was frost on my windshield. We pulled up to the main street, where there was never any place to park. There is a fire station across the street with an empty parking lot behind where all the “Preppy Parents” parked for drop off.

I was driving toward that area, in elementary school traffic. You know the kind… Stop, go, stop, go again….

I look at my 5-year-old through the rear view mirror, all strapped into his 3 point harness car seat.

Oh my god, what was that?

My hand instinctually smacks flat against my forehead.

It’s like a bright light flashes into my eyes for just a nano second.

It is HAPPENING……

My heart starts beating fast,

what do I do?

Okay, I have to pull over.

There is nowhere to go.

My head is slowly getting heavier,

like a 20 pound weight is pulling it down.

The world starts to spin vertically.

With my head tilted sideways, squinting eyes, trying to focus

just a tiny bit.

I make it to a red zone in front of the fire station.

At this point, all bets are off.

I am in a full spin,

head laying down on the door panel of the rolled down window.

My poor baby says, what’s wrong mommy?”

“Am I going to be tardy?”

Ummmmm, yeah.

I no longer have use of my arms, head or vision.

I have to blindly feel around in my purse for my phone.

I find it after 5 minutes of pure panic.

I blindly push the button to call my husband at work.

Please pick up, please don’t be in Los Angeles on a job site.

“What’s up babe?”

“I ‘m having another vertigo attack”

“It’s really bad.”

My tongue is thick.

I can hardly speak.

I explain where I am.

“Be there in 10 minutes.”

I fumble around for my oh so important glamorized generic Dramamine.

I take 2. This should help.

Dr. Wong said so……..

I hear someone yelling at me.

“Excuse me miss? You are illegally parked in a red zone. I’m going to have to write you a ticket.”

My head turns to look out my window.

It’s parking control, pulled up right next to my drivers window, blocking me so I can’t “ditch um”.”

My face must have said enough.

“Are you okay mam?

I am profusely sweating, pale as a ghost.

I think to myself, am I okay?

How do I answer this question?

(This will be the most complicated question I will be asked by everybody I know for the next two years.)

How do you answer?

Yes but no?

No but yes?

I choose “no.”

“I am having a vertigo attack with my baby in the back seat. Go ahead and write me a ticket.”

This chick isn’t goin’ anywhere.

“Do you need medical assistance?”

Yes but no.

No but yes.

“Ummmm no, my husband is on his way.”

“Okay mam, you just stay parked right here, DO NOT DRIVE ANYWHERE.”

(again, my face explained a lot.)

“Don’t worry” I say.

What seems like an hour, but only about 15 minutes, my husband knocks on the passenger window.

“Are you okay?”

Yes but No

No but yes.

“Take the little guy to his class, number one.”

I certainly have traumatized him enough for one day.

Husband drops our son off.

“He got a tardy.” Husband tells me.

“Great” (talk about being kicked when your down.)

Husband- “What do you want me to do?”

Me- “I have to lay down flat NOW”

“I cannot lift my head, let alone walk.”

He opens the driver side door and scoops me up like a toddler.

He opens the slider door to our van and lays me on the back seat.

I put my hand over my eyes, get into the fetal position and rock back and forth.

Husband- “Where do we go? There’s no parking on the entire street.”

Me- “Just go find anyplace to park, NOW.”

I have absolutely no idea of where we are parked.

He gets out and opens the slider again.

“What do I do?”

Me- “I don’t know, just sit here with me. Help me get through this.”

“Do you want a drink of water? Here, have a drink, it will help.”

Me- “Are you kidding me? I cannot lift my head up, let alone sit up to take a drink. Just stop.”

Right on schedule, after about 45 minutes ish, I feel a gentle, slow release.

It’s VERY slow. I start to “come to.”

“Okay, I think I am starting to feel a little bit better.”

I slowly squint with one eye covered by my hand.

The spinning is slowly coming to a halt. Like the end of the worlds worst merry-go-round.

Another half an hour and I am sitting up. Drinking water.

I feel my head pounding. A burning at my temples.

I am once again EXHAUSTED.

My eyes are burning. Every muscle in my body is exhausted.

I need to go home and sleep.

I tell my husband to go back to work.

I’m totally fine to drive home.

I get home, climb into my bed and instantly fall asleep.

I wake up several hours later.

I feel fine.

Like nothing ever happened.

The scariest event to ever happen to me in 35 years (health wise) and with a little nap, I’m fine.

WTF?

Here we go……..

Happy spinning.

xoa



{October 22, 2011}   “Just a little Vertigo”

Moving right along……

Guess what happened the next night while sleeping?

Yep, same time, same place, same thing.

Just a horrific as the night before,

only this time I was a little panicked.

Spinning,

Rapid Eye Movement,

sweating,

head stuck to my pillow.

After about 45 minutes,

muscles slowly release as I fall into a deep sleep.

Morning breaks.

What is going on?

Must call my ENT immediately.

Made an appointment for later that week.

Drive 30 miles to see Dr. Wong.

She will help me.

Tell me to take this pill.

Make this spinning stop.

No problemo.

Me- “Hi Dr. Wong”

Dr.- “So you’re having some spinning?”

Me- “Ummmm no, more like having seizures or a stroke, two nights in a row last week.”

Dr.- “Tell me your symptoms.”

Me- “Blah, blah, blah.”

Dr.- “Sounds like vertigo. Let me see here.”

Dr. checks my ears-CLEAR

Dr. check my eyes-Clear

Dr. checks up my nose-Clear

Dr.-”follow my finger.” Back and forth, up and down.- Clear

Dr. “Now lay down in this chair. I’m going to turn your head very quickly, tell me what you feel.”-Clear

Dr. “Hmmmm. sounds like you are having a little bout of vertigo.”

Me- “But I’ve had little bouts of vertigo before, many years ago. This was not that.”

Dr.- Anywhoooo, I will write you a script for some anti nausea pills, take them as needed.”

Me- Umm, okay. If you say so.”

I go downstairs to the pharmacy.

I wait in line for 20 minutes and give the tech my “prescription.”

Tech- “Oh these are over the counter, you don’t need a script for these.”

WTF? This is nothing but generic dramamine.

Here goes nothin’

Happy Spinning….

xoa



"I'm dying and i can't get up"

I slowly open my eyes.

What the hell?

My entire bedroom is spinning vertically.

Hard

Fast

My eyes are rapidly moving up and down, up and down.

I can’t control the movements.

I can’t focus.

My head feels like the world’s largest magnet is pulling and holding it down to the center of the earth.

I’m sweating.

My heart starts to beat like a drum.

I touch my husband on the shoulder to try to wake him up.

“What?” He says.

“I’m having a stroke, call 911″

This is it, I am dying.

My babies are sound asleep in their cozy beds while Mommy is dying in her bed.

My husband being the calm, cool and collected guy that he is says, “wait a minute, let’s Google this.”

OMG, I’m dying and my husband wants to GOOGLE?

“Okay now, what are the symptoms?”

“The room is spinning”

“My eyes are tracking uncontrollably.”

“I’m sweating.”

“Totally having a panic attack.”

“Head feels like a bowling ball.”

All I could do was close my eyes and rock back and forth in the fetal position.

Husband says, “looks like your having a vertigo attack.”

“What?” “Can’t be possible. I’ve had vertigo in the past, and this is NOT it.”

By this time, 30 minutes had gone by. 4:00 am now.

I slowly begin to feel a slight release of my tensed up muscles.

My eyes slowly stop the pacing and relax a bit.

I no longer felt the need to rock.

I slowly opened one eye.

Blurry but not spinning.

“Wait, I think I am feeling a little bit better”

Next thing I know,

alarm goes off at 6:15

Time to get lunches made,

kids dressed and ready for school.

I am fine now.

After doing a lot of Googling myself that day,

I think my husband was right.

I had a vertigo attack.

Everything I read says they are harmless.

Oh, well.

That was weird right?

Why does my body feel like it was run over by a train?

I didn’t find that anywhere on GOOGLE.

Happy spinning……xoa



{October 19, 2011}   Charlie Brown’s Teacher

I absolutely LOVE comedian Adam Carolla. He has a daily podcast chalked full of quick wit, sarcasm, and raunchy humor. (Did you know he has the #1 downloaded podcast of all time?) Consider yourself warned, he uses extremely foul language. I adore him……

My night-time ritual

download AC Podcast

enter ear buds

good nite.

I thought there must be a short in one of my buds.

The sound coming out of my right bud was sounding extremely muffled. I couldn’t even make out what my Adam was saying.

New buds, same thing.

Why does Charlie Brown’s teacher keep calling me on the phone?

Must be a head cold.

Smash cut to 9 months later (this head cold is really sticking around)

Maybe I should see my Dr.

One week later, I see my GP.

Here’s how that appointment went:

Dr.    “What seems to be the problem Mrs. Armstrong?”

Me    “I am not hearing well out of my right ear.”

Dr.    “Okay, how long has this been bothering you?”

Me    “Ummmmm, like 9 months.”

Dr.    (Scooby Doo head turn) “Hmmmm, okay then, let’s see what we have here.”

He looked inside my ear with an otoscope, “all clear”

He took out a tuning fork, hit it on the table and held it to my ear.

Dr. “Can you hear this louder here or here?”

Me. “Neither, it sounds the same both places.”

Dr. “Why did you wait so long to come in? I could have given you a steroid injection, but now it’s too late.”

Me. “Shit”

Dr. “You most likely have what we call unexplained hearing loss. I want you to see an ENT just to be sure,I will send over the referral”

Two weeks later I see an ENT. That’s an Ear Nose and Throat specialist.

Little did I know that Dr. Wong would soon be my new best friend or worst enemy. Depends on how you look at it.

Dr. Wong asked me the same exact questions as my GP, did the same exact tests and gave me the same exact diagnosis.

I have Unexplained hearing Loss.

Okay then.

For those wondering why or how I could wait so long to see a Dr.? When you slowly lose function of a body part, you unconsciously start to compensate for that loss. When you have two of the same body parts, you slowly just start using the good one.

This is called COMPENSATION. Little did I know at this time, how serious this word would become in my life.

Happy Spinning xoa



"I have a friend that had that."

I am a wife.

I am a mom.

I am a spinner.

I have Meniere’s Disease.

This is my journey.

For those of us lucky ones, that were blessed with this inexplicable disease, the words we fear the most:

“Oh you have vertigo?”

” I have a friend that had that.”

” She went to the chiropractor, he gave her some exercises to do, she’s all better now, you should try that, she swears by it.”

“Have you tried acupuncture?”

“try some ginseng candies.”

“Aromatherapy?”

My favorite “Herbal supplements”

Why didn’t my General practitioner, ENT, Audiologist or Otologist that specializes in Meniere’s think of that?

Meniere’s is not vertigo.

Meniere’s does not go away.



et cetera
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