Saturday, March 28, 2015

Brain Fog: Exposed

Brain fog: that moment in time when you are having a discussion and ............Wait what was I writing about again????

Oh, yeah. Brain fog.

That moment in time when you meet and old friend and................Who was I talking to?????

Oh, yeah. I am trying to explain brain fog.

This should be easy. It's right on the tip of my tongue..................or fingers.............or???

You get the point.

But there may be a logical explanation of why we Menierians (I stole that word) have trouble remembering things.

It was recently explained, although not directly, to me as it pertains to hearing loss.

You see, our brain is an amazing computer. One that cannot be copied for it's complexity.  Each part of the brain is created with it's specific portion to do a specific job.

But here is the interesting point.  If a part of your brain is not doing the job it is designed to do, it doesn't just sit there waiting for something to do, it does something else.

Brain scans have been done of people who are born deaf. In the beginning, the portion of the brain that is supposed to understand hearing just sits there. But as time goes on, that portion of the brain is used for something else.  Maybe it is sight. Maybe it is taste. Maybe it is reflexes. The point is, the brain finds itself too valuable to just sit there doing nothing. And in the case of deafness, by the time a person is 12 years old, the entire brain is occupied doing something and the portion of the brain used for hearing may be lost. Permanently.

I have been in some Deaf (note the capital D for Deaf Culture) groups where I hear them saying that they have better eyesight or other senses than hearing people, and that may very well be the case because the brain is using more than the originally planned "space" for those senses.

Now, for my interpretation, with some scientific backing, for "brain fog".

Being a computer, your brain loves information. The more the better. It can't get enough.

Also being like a computer, it goes by the same rules that I learned in my first exposure to them: GIGO- Garbage in, Garbage out.

If the information that your brain is receiving is "garbage", it doesn't know what to do with it so it spends a lot of time and energy trying to figure it out.

And when something completely new and foreign is introduced into your brain, such as tinnitus or vertigo, it needs to find someplace in the brain to try to figure out what it is supposed to do with it. That means something else it was doing, it no longer has time for.  The more intrusive the "new garbage" the more space and energy it spends figuring it out.

Again a computer analogy.  How many of us love our brand new computer? It runs fast! It never locks up! But over time, as new programs are added, and errors occur, it slows down, s l o w e r, and s  l  o  w  e  r  and s   l   o   w   e   r.

Here is my scientific backing.

In the case of people who are born deaf, and later in life (past that magical 12 year old point) get a cochlear implant, the part of the brain that is supposed to understand hearing is busy doing something else that the brain finds important. It doesn't stop doing that because it now is hearing things. It doesn't know it is supposed to. Therefore, the sound is going to a different part of the brain. Brain scans are showing it going to the part of the brain responsible for short term memory! AHA! Brain fog!

The same may very well be the case when we start having tinnitus and vertigo. The brain is using a part of the brain not designed to figure out what the heck is going on, so it uses the energy from short term memory to try to sort out why there are birds chirping in my head 24/7 and why the world spins.  No time for things like memory anymore!

Now, wasn't that a great (in my humble opinion) explanation of brain fog?!

You remember it, right?

Yeah, I didn't think so.

'Til next time

Dennis

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

Tuesday, March 24, 2015

Snake oil salesmen: Fact or Fiction?

At it's worst this disease is miserable. There is no denying this. You're life can spiral out of control very rapidly. Desperation can come upon you. You may search everywhere for something, anything that gives some relief from the vertigo and nausea.  Modern medicine can only offer so much.  But one must proceed with caution in pursuing alternatives.

It is a sad fact that some people in the world are vultures. They circle above every day just looking for the weak, and when the opportunity presents itself, they are more than willing to step in and, under the guise of helping, take advantage of desperate people.

Not all alternative methods are bad, or ineffective. Some have some scientific backing to their claims, others are just pure bunk!

This disease has been around for a very long time, and if some of these so called "cures" actually worked, the medical professionals and health remedy companies would have latched on to them years ago.

What's dangerous is the people promoting these "cures" are setting themselves up in a manner in which they claim to be able to diagnose and treat something they are not.  You cannot diagnose anything over the phone. You cannot treat someone you have never met. Even real, natural remedy specialists know this.

What makes it difficult to accept many of these "cures" with Meniere's disease is the nature of the disease itself. The disease comes and goes in a series of "attacks" and "remissions" all on its own.  There is no proven way to tell if what you did was really the reason for the attacks to slow or quit for a time.  I say this even though I have gone under some medical intervention.  Even my ENT agrees with this point in a general way when he said to me, as I asked about trying a course of supplements which some people claim to have helped, that he was not opposed to me trying them, but there was no scientific proof that any of them help. He continued by saying that Meniere's is probably the most difficult disease he has to deal with because he has seen things that in no way should help, bring relief, and tried and true treatments do nothing in patients.  He said he has had patients who have left him scratching his head for reasons on both sides, many times.

Supplements seem to be the most common way most people seem to attempt to self treat. One of the most common regimens consists of a number of different supplements that a person must remain on at all times.  The person who promotes this as a potential treatment at least has the decency to say, straight out, that it does not work for everyone.

The challenge I see with people who claim relief from this course is they still complain of mild attacks, imbalance, brain fog, vision problems, etc. But yet it "is the best thing they have ever done for Meniere's". HUH?

One of the most bizarre claims I have seen is from a man who can "cure" you by sending "healing energy" over the phone. Call me a cynic, but yeah, I don't think so.

There have been people who "give" away the cure for free, yet ones who try it are still on social media and none of them are talking about being cured.

Don't get me wrong, I am a huge supporter of doing natural remedies and I certainly hope people who do try some do get legitimate relief.  It just shows that now, more than ever, it is a case of  Caveat emptor- let the buyer beware.

'Til next time

Dennis

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

Tuesday, March 17, 2015

They're coming to take me away

When I was is in my 20's I had a "go get them" perspective on life.  I was determined to live as normal a life as I possibly could. I still did all the work I had done prior to diagnosis. I pushed, dreamed, lived.  When opportunities presented themselves I took advantage of as many as I could.  That doesn't mean that I didn't need to make changes in HOW I did things.

We had always been very involved with the dairy co-operative that we marketed our milk through. My father served on various boards and committees, and I was beginning to become involved as well, so when I was asked to serve as a delegate to the annual meeting held at the Minneapolis Convention Center, I gladly accepted the offer.

Of course, this also meant that, for the first time since the attacks had began, I would be away from home, by myself.  I also needed to figure out how I was supposed to get to and from Minneapolis. This was during a time period where there was no way I was going to attempt to drive the hour and a half each direction. The traffic and lack of knowledge of the roads, along with the fact I would be by myself, during a time when attacks were unpredictable did not appeal to me. I chose to take The Greyhound Bus and then a cab to my hotel.

This is a 3 day convention attended by thousands of people. There is a huge trade show set up displaying all of the co-op's product lines and no shortage of people to talk to.

At the close of the convention, there was a farewell lunch with a keynote speaker. We had finished eating and legendary college football coach Lou Holtz was the speaker. I remember his speech well. He began the talk by asking what people noticed when they went into cemeteries. What were the things that people noticed on the gravestones? How could you determine what was important to the person in the grave?  He then gave this inspiring thought. The most important thing on a persons gravestone is not the day they were born, nor is it the day they died. The most important thing on a persons gravestone is the dash. That little line between when you are born and when you died. If you don't do anything with that dash, if it doesn't make a difference, then maybe, just maybe, you haven't really lived.

He was an entertaining speaker. Honestly, more entertaining than I expected. I am not much of a RAH! RAH! kind of guy, and it takes a lot to impress me when it comes to speakers, but he had struck a cord with me.

As I got to the meal a little towards the end of the line, my table was situated near the back of the ballroom. I was seated with people I had never met before. We had nice conversation, but certainly not enough to get to know them.  Lou was finishing up his speech and was using a magic trick as a visual. It was the standard- fold the newspaper into quarters and tear it and when you open it back up, it is in one piece, trick.

He had just completed the trick when it hit. Wham! The entire ballroom started spinning counterclockwise. I found myself between a rock and a hard spot. I knew what was going to happen. I would either fall out of my chair, or I would get so nauseous I would vomit. I think I left fingernail imprints in the underside of the table to keep me from falling over.  My choices were clear.  Do I stay? How do I explain to people I don't know what is going on? Will it cause a scene if I do fall or vomit?

I chose to leave the ballroom. I have no idea if the people at my table could tell that something had happened, I just knew I could not stay.

Perhaps it was out of self-consciousness, but it sure seemed as though folks were staring at me as I walked/staggered down the hallway. A security guard happened along, so I motioned for him. I asked him to take me someplace dark and quiet. He continually asked if I was OK and what was going on. So much for the quiet part.   Several times he asked me if he should call an ambulance. It is very difficult to explain, in the middle of an attack, that you are completely aware of what is going on and do NOT need medical attention. The last thing I needed was for him to call an ambulance, and be taken to a hospital ER for a disease that they can't treat anyway. The most they would have done was something for the nausea and released me anyway.  I don't blame the guard, he was very in tune with trying to help, it just is something that I needed to deal with on my own.

After the attack had settled down a bit, I convinced him that I was well enough to go home, or at least to my hotel room.  Of course I had now missed my bus back home and needed to rely on my sister that lived in Minneapolis to leave work early and take me home (another condition from the guard in exchange for not calling the ambulance).

It would be impossible for every person involved in an event to know and understand all the medical conditions that they could possibly face, but my experience certainly showed that there was a huge need for general awareness in Meniere's disease.

'Til next time,

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

Tuesday, March 10, 2015

Vestibulopathy, and another big word you will never use again

A nice thing about being a patient at a large clinic like Mayo is that you can look up your clinical notes online to see what your Drs. have written about you.

A while back I decided to just go back through my notes from when I first went back in 2013.I came across a word I really didn't know or understand- vestibulopathy. After the first visit, my ENT wrote in my notes that he believed that I had "significant vestibulopathy".

Of course I needed to know just what that meant, so I googled it.  What I found was both reassuring, in the fact that there was reasons for some of things I was experiencing, and troubling at the same time.

The definition of vestibulopathy I found was this:

"Bilateral vestibulopathy occurs when the balance portions of both inner ears are damaged. The symptoms typically include imbalance and visual problems. The imbalance is worse in the dark or in situations where footing is uncertain."

This was actually reassuring. It meant that the reasons I have trouble walking in the dark or on uneven surfaces was not in my head, or because of getting older, but because of the damage to my balance from Meniere's disease.
View from Memorial Park, Red Wing, MN


For my second daughters birthday, last October, we went to a park with hiking trails along some of the bluffs on the Mississippi river.  The view was incredible with the changing colors of the leaves. The hike, not so much. This was a true nature trail. No paved trails, just rocks and dirt and fallen trees. I struggled down it about 200 feet and back up was not much fun, either. I had noticed similar things walking around our farm, but just chalked it up to general clumsiness. 

Oscillopsia


What I read next was also reassuring:

"The visual symptoms, called oscillopsia, only occur when the head is moving (J.C., 1952). The illustration [above] shows what a person with bilateral vestibulopathy may see when driving over a bumpy road. Oscillopsia is often common during walking (Kim et al., 2011). Quick movements of the head are associated with transient visual blurring."

Over the last couple of years, the picture above has become more and more common to me. I have gotten so I dislike driving at night, especially on bumpy roads.  When I mow my lawn (large lawn in the country on a riding lawn mower) I have a hard time focusing after a while and have even become nauseous to the point of vomiting, then getting back on the mower and finishing the job.  Doing fieldwork on a tractor would cause the same effect, as would running the skid steer loader, which all weighed in to my decision to find a different career. Life is too short to feel like vomiting all the time.

What is troubling is what else I read:

"This is a condition that realistically often causes some permanent disability. "

And:

" Individuals with moderate vestibular loss are usually able to continue to work productively, with some modifications in their behavior. For example, most people with moderate or severe loss never return to driving at night. In situations where there is complete or near-complete loss of vestibular function, vision and balance usually remain impaired permanently; however, most individuals do return to work, especially if their job does not require good head/eye coordination or balance. Frequently, job modification or accommodation occurs."

And:

"While balance is poorer than normal, with normal vision and sensation in the feet and ankles present, most patients with bilateral loss appear, at least on casual inspection, to have a normal gait. Falls are more frequent in persons with bilateral vestibulopathy (Herdman et al, 2000). Reading is generally more difficult than for persons with normal vestibular systems, but quite feasible, as the head can be steadied during reading. Many people with bilateral vestibulopathy complain of a mild confusion or “brain fog,” which is attributed to the increased attention needed to maintain balance and vision. This reduces the amount of attention that is available for other thinking tasks."

And finally: 

"You will want to change your life style to adjust to your reduced balance, and inability to see when your head is in motion. You will want to take precautions to avoid falls. You may need to change your occupation if your present one requires good balance, and an ability to see while the head is in motion. For example, it would not be safe to continue as a truck driver, construction worker, or a roofer if you developed a significant bilateral vestibulopathy. A job where you work at a desk is usually a good choice"

This is not to say that I cannot or do not have a great life, but it does mean that my life is forever different, and definitely more challenging than it would be without Meniere's disease.

**All quotes courtesy of http://american-hearing.org/disorders/bilateral-vestibulopathy/** 

'Til next time

Dennis

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

Wednesday, March 4, 2015

Changes

There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.

Ecclesiastes 3: 1-8


In every persons life there are changes. Some we make ourselves, some are a natural part of life, and some we have no control over. We are born, grow,find interests of our own, pick a career, lose a job, age, and develop injuries and illnesses along the way.

Everyone experiences change. Some good, some bad. Some easy, some very difficult. 

As a young person, I was blessed to "know" what I wanted to do for a living. I always loved my cows, and decided a future in dairy farming would be my life.  I didn't need time to "find myself".  My sincerest solicitude goes out to all young people I talk to that have no idea what they want to do for a living. I can't even imagine what they are wrestling with.

I attended school for dairy production and then returned to the family farm where I took an average herd of cows and made it one of the top 5 in our county, then to a grass based dairy, then certified organic.

Part of the reason for the the changes in management came from my disease. I no longer was willing to climb 70 foot tall silos or operate potentially dangerous machinery, so we switched to a different way to feed them. Different, easier, safer ways to manage them.

When Meniere's decided to rear it's ugly head again in 2013, there were more changes in store. I have to admit, I fought them.  Stubborn pride and not wanting to accept the changes caused an internal battle.  My head told me one thing, my heart another.  Farming was my life, but it no longer made sense.

It is safe to say that from June of 2013 to June of 2014 was the worst year I have ever put in due to Meniere's. It caused more mental anguish than ever before, along with the physical ridiculousness of being deaf in both ears and complete inability to know if, or when, the next attack was coming.  It was just no way to run a business when I could barely run my life.

I reached a point where I just needed a break. A chance to regroup and catch my breath. Regain some perspective on my life.  Many I have talked to have applauded me on being able to recognize this. They see far too many hang on far too long, regardless of the career they are in.

It was decided in the fall of 2014 to seek a change of careers. The cows were sold, the land will be.

Easy? Not on your life.

I still miss the cows every day. I miss many of the blessings of being my own boss. I hate that I am now just another "statistic", another farmer who is no longer one. As a farmer, there is the culture of passing on the farm to the next generation, something I can no longer do, and I feel terrible for my children because of it.

I, for the first time in my life, don't know what I am supposed to do with the rest of it. It is incredibly humbling.

For the best? Yes.

I have a new outlook on life. I am much less stressed. I am, over all, happier.  I could see what was happening to my confidence. I was just no longer comfortable working around large animals or large equipment. 

Will it have any influence on my disease? Doubtful, but that is not the reason I did it in the first place.

A good friend of mine reminded me of a saying from the past that if God is knocking, maybe you should open the door.

In my case, I guess he needed to use a wrecking ball.

'Til next time

Dennis

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