Friday, January 30, 2015

Hello floor, I didn't see you lying there

One of the most frightening and dangerous aspects of Meniere's disease are what are known as Crisis Of Tumarken, more commonly known as "drop attacks".

Everyone's experience may be a bit different with these, and not everyone experiences them, but the general theme runs the same. You will be going about your daily life when suddenly, without warning, you will find yourself on the ground. Some experience vertigo prior, I never did.

The first one of these is permanently etched in my mind as well as my parents minds. I was having a chat with them in their kitchen following breakfast. I was mid sentence when it appeared as though the room had tilted to the left. Not just a slight tilt, but a full 90 degree tilt. I truthfully felt as though I was still upright and the room tilted. It was when I felt pain in my right shoulder from hitting the floor square, while tipping my chair over, that I realized that I had just fallen over.

The thing with drop attacks is that you never lose consciousness, unless you are unfortunate enough to hit your head on the way down. I always have been aware of what has happened. It doesn't change the fact that you now need to pick yourself up, though. They are usually gone just as quickly as they arrived. Sometimes mine would be followed by a full on vertigo attack and nausea, but not always.

I have lost count as to how many of these I have had.  In the early years, I always fell to the right, landing on my right shoulder. Usually I was standing on concrete when they occurred.  I am quite sure that I have done damage to my shoulder from them because of the lingering issues I have with my right side, but do not have on my left.

There was a period of time following some medical intervention during which I did not have any drop attacks. That all came to a screeching end in June of 2013.  I was in the barn milking when out of nowhere, it appeared as though the platform the cows were standing on just tipped away. I did not immediately recognize what was taking place. I actually had time to think to myself "what the heck? Oh, yeah, this is going to hurt."

I went straight back this time, landing squarely on a five gallon plastic bucket, dislocating a rib.

Again I am incredibly thankful because the outcome could have been much worse. The pit in our milking parlor is 7 feet wide with a concrete platform on each side. I am 6 feet tall. If I had not been standing next to one side of the pit I surely would have hit my head on the platform on the opposite side.

This was also the reason I returned to Mayo Clinic after not needing to be seen since 2005.  While the vertigo attacks can be quite uncomfortable and inconvenient, and disrupt your life, they by themselves are not all that dangerous.  I can can live with  occasional vertigo, I refuse to live with drop attacks.

'Til next time,
Just a guy trying to live with with an invisible, potentially debilitating illness.

Friday, January 23, 2015

I get by with a little help from my friends

Sometimes it takes drastic circumstances to realize who your true friends are.

 There was a time period in 1994-1995 where if I did not absolutely have to drive, I didn't.

 I had been feeling well enough, that when a friend asked me if I wanted to be part of a brand new bowling team, I agreed.  All things were going good for a fair amount of the season, then, as Meniere's is known for, I went through a very rough patch of attacks. I notified my friend that I would be no longer able to bowl because I was not comfortable driving the 30 minutes to the bowling alley. The response of my teammates was one I did not expect, and I am sure I did not acknowledge nearly enough. One of my teammates drove 5 to 6 miles out of his way to pick me up.  This was, after all, a local, non-professional, didn't really need to be there on my part, bowling league.

Even though I say I didn't NEED to be there, in reality I did. Not for the bowling, but for my mental health. Meniere's can be an incredibly isolating disease. You don't go out because of the attacks, then you start not going out because of the fear of attacks, then you just stop caring if you go out or not.

I would like to publicly thank my team for being more than just a bowling team and showing me that some things are more important.  So Thank You Mark, Lonnie, Jeff, Jason, Greg, Steve, and Ralph.

Oh, by the way, one year we even won the league championship!

'Til next time,

Just a guy trying to live with with an invisible, potentially debilitating illness.

Monday, January 19, 2015

And the winner is...........Meniere's Disease

I don't recall how long it took to get the consulting appointment at Mayo Clinic, but I do remember the attacks were beginning to ramp up.  I experienced the first full out vertigo attacks that would leave me drained for hours after the actual spinning sensation stopped.

The Dr. who was assigned my case was a jovial man named George Facer. I would later learn that he was the first surgeon at Mayo Clinic to implant a cochlear implant in 1983.  In order to achieve a diagnosis, he scheduled me for a litany of tests.

Here is a list and explanation of tests from their website that Mayo Clinic currently uses in order to get to a diagnosis:

A diagnosis of Meniere's disease requires:
  • Two spontaneous episodes of vertigo, each lasting 20 minutes or longer
  • Hearing loss verified by a hearing test on at least one occasion
  • Tinnitus or aural fullness
  • Exclusion of other known causes of these sensory problems
If you have signs or symptoms associated with Meniere's disease, your doctor will ask you questions about your sensory problems, order tests that evaluate the quality of inner ear function and order other tests to screen for possible causes of the problems.

Physical examination and medical history

Your doctor will conduct a physical examination and ask questions about:
  • The severity, duration and frequency of the sensory problems
  • Your history of infectious diseases or allergies
  • Medication use
  • Past ear problems
  • Your general health
  • History of inner ear problems in your family

Hearing assessment

A hearing test (audiometry) assesses how well you detect sounds at different pitches and volumes and how well you distinguish between similar-sounding words. The test not only reveals the quality of your hearing but also may help determine if the source of hearing problems is in the inner ear or the nerve that connects the inner ear to the brain.

Balance assessment

Between episodes of vertigo, the sense of balance returns to normal for most people with Meniere's disease. But there may be some degree of ongoing balance problems.
There are several tests that assess function of the inner ear. Some or all of these tests can yield abnormal results in a person with Meniere's disease.
  • Videonystagmography (VNG). This test evaluates balance function by assessing eye movement. Balance-related sensors in the inner ear are linked to muscles that control movement of the eye in all directions. This connection is what enables you to move your head around while keeping your eyes focused on a single point.
    In a VNG evaluation, warm and cool water or warm and cool air are introduced into the ear canal. Measurements of involuntary eye movements in response to this stimulation are performed using a special pair of video goggles. Abnormalities of this test may indicate an inner ear problem.
  • Rotary-chair testing. Like a VNG, this measures inner ear function based on eye movement. In this case, stimulus to your inner ear is provided by movement of a special rotating chair precisely controlled by a computer.
  • Vestibular evoked myogenic potentials (VEMP) testing.VEMP testing measures the function of sensors in the vestibule of the inner ear that help you detect acceleration movement. These sensors also have a slight sensitivity to sound. When these sensors react to sound, tiny measurable variations in neck or eye muscle contractions occur. These contractions serve as an indirect measure of inner ear function.
  • Posturography. This computerized test reveals which part of the balance system — vision; inner ear function; or sensations from the skin, muscles, tendons and joints — you rely on the most and which parts may cause problems. While wearing a safety harness, you stand in bare feet on a platform and keep your balance under various conditions.

Tests to rule out other conditions

Other tests may be used to rule out disorders that can cause problems similar to those of Meniere's disease, such as a tumor in the brain or multiple sclerosis. These tests include:
  • Magnetic resonance imaging (MRI). This technique uses a magnetic field and radio waves to create images of soft tissues in the body. It can be used to produce either a thin cross-sectional "slice" or a 3-D image of your brain.
  • Computerized tomography (CT). This X-ray technique produces cross-sectional images of internal structures in your body.
  • Auditory brainstem response audiometry. This is a computerized test of the hearing nerves and hearing centers of the brain. It can help detect the presence of a tumor disrupting the function of auditory nerves.

The first test would be the first of dozens of trips into the sound booth for an audiogram.  At this point in the progression of the disease I was still hearing quite well. My hearing had only dropped about 10 decibels from normal in the low tones, and the high tones remained in the normal range.  After reviewing this test I learned that losing low tone hearing first is a sign of "classic" Meniere's.

I returned at a different time for the vestibular testing. This series of tests are the ones which determine if your balance function has been damaged.  The tests included were: vestibular evoked myogenic potentials (VEMP), posturography, and caloric.

 The only test which really gives me any negative experiences is the caloric test. This test involves running warm water in each ear followed by cool water. It is designed to create a response from your balance system. I had vertigo in both ears, with both warm and cold water.  Not knowing what was going on, I naturally assumed this was a bad thing. Little did I know, but learned much later, this is a very good thing to have happen.  When I was tested in 2013, I had no response in my left ear from warm water so they ran ice water in. I again had no response whatsoever, other than wanting to punch the tech. The results of the test in 2013 mean that my vestibular function in my left ear is gone. The disease had destroyed it.

One last test that I needed was a MRI. This is used to make sure there are no tumors on a persons vestibular or hearing nerves.

I only started having the rotary chair test and the video recorded tests since 2005.

I listed all of these tests for one reason. It pains me when I hear of and read stories about being diagnosed on the first visit without any testing.  Meniere's is a diagnosis by exclusion.  The very nature of it makes it virtually impossible to test for it, therefore the tests are used to rule out any and all other possible causes. When no other cause can be found, then you get the diagnosis of Meniere's.

After a review of my tests and further discussion with me, Dr. Facer confirmed  in 1993 what my primary care Dr. had suspected. I had single sided, left ear idiopathic endolymphatic hydrops (Meniere's disease).

I was given the standard course of treatment at the time. A six week course of Prednisone (during which I went from 185 pounds to 210 pounds), a diuretic, Lipoflavanoids (which were supposed to help with the tinnitus), naicin (which is supposed to increase blood flow to the inner ear), and told to adhere to a low sodium diet, and told to avoid caffeine and alcohol. This is known as the CATS diet, or as some have labeled it, the "no fun" diet.

What makes a true diagnosis even more difficult is the fact that there is no known cause. There are several theories out there, but no one has been able to make a definite connection.  For a long time the was a belief that it was an auto-immune disorder where your body just starts attacking itself. This was the reason for using the prednisone. An attempt to calm your immune system down.  There have also been suggestions that it is related to poor circulation in the inner ear, hence the niacin. It gave me terrible flushing.  The only thing that the medical community is fairly sure of is that it has something to do with an excess build up of fluid in the inner ear, whether because of excess production, poor absorption, or a plumbing problem leading to the inability to effectively remove excess from the area. This is the reason for the diuretic and the low sodium. Anything to help with the removal or accumulation of fluid.  Caffeine and alcohol are to be avoided because they are stimulants.  No point in making an already stressed balance organ angrier.

Some people do find relief by using these, others do not. I wish I could say that the treatments that I was given at that time were helpful, but the attacks just kept coming and the hearing loss just kept getting worse.

'Til next time,

Just a guy trying to live with with an invisible, potentially debilitating illness.

Saturday, January 17, 2015

In the beginning.....

I recently read an article on a medical website that said people with Meniere's disease can tell you every detail of their first attack. It did not matter if the attack had just occurred, or if it had been decades since it had happened.  I would venture to say that most of us can catalog nearly every attack in vivid detail.  The reasons for this, at least to me, is the fact that it is not an illness that sneaks up on you, slowly causing you to wonder what is going on, until you finally seek medical advice. Rather it is a disease that hits you like a fully loaded semi tractor trailer combination, leaving you wonder if anyone got the "How is my driving" 800 number so you can call to complain.

My very first attack happened on a fall day in 1992.  On our farm, we were in the middle of harvesting corn silage for winter feed. I had taken a load of cow manure to a neighbors farm to spread and was driving home. 20 miles an hour on a tractor may not seem like a lot of speed, but when the road in front of you becomes a road that is shifting for no apparent reason, and you become unable to focus, and the nausea begins to build, 20 miles an hour scares the living daylights out of you. I was only 3/4 of a mile from home when it hit, but it was the worst 3/4 of a mile I have ever driven. Somehow I managed to get to the farm yard safely. After I got the tractor parked, I climbed off and immediately collapsed to the ground. It was if I had spent the night drinking to the point of falling down drunk.  I staggered to my parents house and my mother called my primary care clinic.  Next thing I know, I am in the backseat of her vehicle being driven 18 miles to the clinic on curvy country roads. Not a good combination. I vomited the entire way there. I was quickly wheeled (yes wheeled, I was still too nauseous to walk) into a room.  When the Dr. came into the room I described what had happened. Ringing in ear, pressure in ear, temporary loss of hearing in my left ear, inability to focus, nausea, vomiting, exhaustion.  His immediate response was "it sounds like Meniere's disease, but you are too young". I was 27. He strongly suggested following up with a specialist at Mayo Clinic-Rochester, gave me a prescription for Antivert, had the nurse give me a shot of something for the nausea and sent me on my way. I slept all the way home.

Looking back at that first attack I can now be incredibly thankful that it happened in the manner that it did. I did not know what this disease had in store for me in the upcoming few years, and had no idea just how bad the attacks could become.  I was driving a tractor without a cab and no seat belt. Had I had an actual vertigo attack, or worse, a drop attack, I easily could have fallen off the tractor and been run over.

Seems funny to be thankful for something that can be such a devastating part of your life.

'Til next time,
Just a guy trying to live with with an invisible, potentially debilitating illness.