Thursday, July 28, 2011

Shrinking Life

The summer's kind of been a bummer for me.

I got some of the painting done that I had planned, but not nearly as much as I had hoped by this point.  The living room has multiple color splotches painted on the walls, like some sort of abstract color-blocking. Instead of painting the living room red, I opted to paint the front hallway red, deciding that a red living room would be more red than I could handle.

I haven't gotten as much done as I hoped because I have been battling episodes of vertigo and nausea. This is something that began very subtly about six months ago.  My ears became congested and were causing me some faint dizziness.  I chalked it up to a head cold that had moved into my ears and figured I would wait it out.

It went away after a week or so.  Until it came back a few weeks later.  Same thing.  Congested ears. Reduced hearing because they were congested. Occasional moments of dizziness.

These annoying but minor symptoms seemed to come and go with no rhyme or reason.  I wondered if I was developing allergies or had a lingering ear infection that my body couldn't quite kick.

Mid-April, while driving to see my father-in-law who was in hospice, I turned my head to check for traffic before changing lanes and the whole world went swirly. Luckily, I was almost at my destination.  By carefully keeping my head straight, and driving extra cautiously, I was able to safely get where I was going.

I stepped out of the car and had a hard time walking a straight line without feeling like I was going to fall. I made my way inside and sat very still for about an hour until the vertigo passed.....and then I was fine.

It was very strange.  Once again, I blew off the episode because it was isolated, seemed to magically resolve itself after a couple of hours, and seemed to be tied to my ears becoming congested.

Things went along smoothly except for minor moments of congestion/slight dizziness. Fourth of July weekend found me lying in my niece's room by myself, in the middle of a huge party, because I was experiencing so much vertigo and nausea that I simply couldn't interact with anyone.  That was the first life-altering episode.  It passed after an hour or two and I got up, feeling perfectly fine, and joined the party. Everybody around me was a little freaked out and worried about me.....but I truly felt OK once the vertigo stopped, so I tried to reassure everyone that I was fine.

Fast forward to one week later...I'm lying on the floor in the bathroom, unable to make my way back to the bed I had been hiding in for two hours, trying to make the world stop spinning around me.  I was shaking, and on the verge of throwing up, and feeling so sick that I started thinking the emergency room was in my future. The only reason I didn't ask my husband to take me was because I didn't think I could stand up and walk to the car, let alone endure the ten minute drive without dying......that's how sick I felt.

The level of "unwellness" and the helplessness that I felt and the fear of what the heck was happening took me back to my days of chemo and emotionally crushed me. I hadn't felt this terrible and out of control of what was happening to me since then.  And, the finger of fear, about whether this might be a recurrence or a metastasized brain tumor, poked around in my head.

It was frightening.

And yet....a couple of hours later.....I was mostly fine, though exhausted form the ordeal and worried about what it meant for me.

A trip to an urgent care later in the evening supplied me with a course of antibiotics and Antivert, although the doctor didn't see any signs of an ear infection or any inflammation, or any physical reason for my ear congestion and episodic vertigo.  Still, I thought that maybe this would solve things.  Maybe I had an infection in my inner ear that wasn't visible.

A week later, the antibiotics proved useless. Another episode of vertigo, and the loss of my entire day to laying still in a dark room waiting to feel normal again, motivated me to see an ENT specialist.

In the meantime, I scoured the internet for clues as to what might be wrong with me. My symptoms didn't seem brain-tumorish, but these events were so bizarre that I needed some kind of explanation.

Unfortunately, what I found wasn't encouraging. I happened across the term Meniere's Disease and when I investigated it found this.
The symptoms of Ménière's are variable; not all sufferers experience the same symptoms. However, so-called "classic Ménière's" is considered to have the following four symptoms: 
1. Periodic episodes of rotary vertigo or dizziness.
2. Fluctuating, progressive, unilateral (in one ear) or bilateral (in both ears) hearing loss, usually in lower frequencies.
3. Unilateral or bilateral tinnitus.
4. A sensation of fullness or pressure in one or both ears.
Ménière's often begins with one symptom, and gradually progresses. However, not all symptoms must be present for a doctor to make a diagnosis of the disease. Several symptoms at once is more conclusive than different symptoms at separate times. Attacks of rotational vertigo can be severe, incapacitating, and unpredictable and can last anywhere from minutes to hours, but generally no longer than 24 hours.

Crap.  That sounded exactly like what I was experiencing.  And the good news?  No cure.  No understanding of what causes it, or why it happens.  Once it starts, it doesn't stop....unless you are one of the few who might have spontaneous remission after many years.

I promised my husband that I wouldn't mention all of my internet research to the doctor in order not to influence his train of thought.  I would just go, describe what had been happening, let him examine me and see what he came up with.

This was one of those moments when I wanted to be proved wrong.  I wanted him to look in my ears study the results of the ear and hearing tests that he gave me and say, "Aha! I know what's wrong and it is easily solved!  You have a giant ball of wax in your ear!"

Or maybe,"'s an earwig living in your ear!"

Or maybe," is an infection.  You just need a different antibiotic than the one that you had!"

Alas, he merely looked at me and said, "You have a disorder called Menieres Disease."

Great. Tell me something I don't know.

At this point, the only thing that seems to help people with this disorder, sometimes, is a low-sodium diet. The idea is that the inner ear is overproducing fluid which cause a membrane in the inner ear to break, leak fluid into all the wrong places, and cause vertigo, aural fullness, tinnitus...yada, yada, yada. Keeping your body from retaining too much fluid by drastically reducing your sodium intake is supposed to help

Have you ever tried to eat a low-sodium diet?  It's extremely hard. No pre-packaged foods, sauces, soups, restaurant food, soy sauce, ketchup, most salad dressings, definitely no shaking of salt over anything. It doesn't make for an easy adjustment.

Yet, I'm doing it. And...I resent it.

I feel like I'm a 75 year old person, accumulating sicknesses and conditions like some kind of weird collection.  The list of things I have to do, and take, and watch out for is growing larger.

The list of situations in which I must be extremely cautious is growing.  I have to evaluate before I get in the car how my ears are feeling.  Do I think I might have an episode?  Will one happen to me in the middle of the store? What would I do if it did?

To make matters worse, I'm really worried about whether I will be able to work.  My job, which follows the school calendar, requires me to drive to and from locations every day.  It requires me to be on my feet, twisting and turning and bending and rising up and down as I perform in front of hundreds of people.  If an attack hit me in the middle of a show, I would be incapacitated. I wouldn't be able to finish and no one could fill in for me. I would have to lay down on the floor while making a spectacle of myself and my "condition".

Not Good.

And yet...I need this job.  I need to work.  The condition is wholly unpredictable. I might be perfectly fine for months on end and then get hit with an episode.  Which would be OK as long as the episode happened in the afternoon or evening.

It's possible to work around it.....but I resent even having to.

I feel as if my life keeps shrinking. The circle containing future possibilities keeps tightening around me.

I guess I am mostly feeling sorry for myself and wishing that things would be easier, that there wasn't always some new obstacle on the horizon.

It's not even the obstacles, in and of themselves, that are frustrating.  It's the feeling that my own body keeps letting me down...that the obstacles are intrinsic to my physical being, not some external problem that I could try and conquer.



Like a Child said...

My husband has this. It started with a head cold. I'll ask him what the technical name is. initially they put him on a dose of steriods for maybe a week (not sure). It comes and goes but has lessened over the years. There are "head" exercises you can do to minimize the symptoms. I will ask him if he has any other advice. I will say to make sure you go to an ENT who is experienced with treating this.

James F. McGrath said...

So sorry to hear about this! I'm glad to see that people with more useful things to say are already beginning to chime in!

JS Allen said...

Really sorry you're having to deal with this.

My co-worker just told me last week about his father-in-law who was having dizziness and loss of hearing. Turns out it started because he has an allergy to aspirin, and had been given aspirin by his doctor as a way to reduce risk of heart attack. When he stopped the aspirin, the dizziness stopped. He was saying that his doctor said this can happen because of food sensitivities as well. Apparently there can be inflammation or swelling inside the ear that causes the vertigo and loss of hearing.

Please keep us posted on what you learn.

terri said...

Thank you.

LAC, I'm going for a second opinion soon just to try and see what another doctor has to offer in the way of suggestions.


I'll be OK....just a case of self-pity right now. ;-)

james said...

You have our prayers that this is solved quickly.