The Real Cause of MAV and/or Meniere's

This is a little letter I wrote to some friends and acquaintances tonight.

"Since 1861, no doctor has been able to trace the exact cause or cure of Meniere’s Disease. As most of you know, I have a so called double whammy diagnosis of Migraine Associated Vertigo and Meniere’s Disease. I’ve tried just about all of the conventional and unconventional treatments to put it—or them—at bay. I’ve improved, but medically speaking, I’ll probably never be completely cured.

Over the last 3 years, after firing several doctors, two “good” docs have told me I have Meniere’s. They said it’s severe and atypical, which isn’t a good thing.

Another doctor, my best doc thus far, told me I have both Migraine Associated Vertigo (MAV) and Meniere’s. Recently, he added some complexity by telling me I might have a perilymph fistula (PLF), which is a small tear or rupture in the inner ear that can wreak all sorts of havoc, and can actually create a cerebral spinal fluid leak. If I have a fistula, it can be repaired surgically, but then again, it can re-open. Moreover, there have been several cases where patients actually have all three ailments: Meniere’s, MAV, and PLF.

Lots of fun if you like being dizzy and disoriented.

There’s all sorts of theories—none completely proven—as to why people acquire these ailments. They also have one thing in common: No real, true silver bullet test to confirm that’s exactly what the patient has. Great if you’re a clinical, scientific-type curious about elusive, incurable afflictions, but not so good if you’re a patient who just wants a good ol’ fashioned straight answer or cure.

Some say Meniere’s and MAV may be caused by an autoimmune virus. I probably had that back in 2005 when I was in the hospital a whole bunch of times after being enviably healthy for most of my life…but the docs couldn’t figure it out. It could be caused by multiple/chronic ear infections, ultimately causing intractable damage to the inner ear. Had that, too. Might be some distant ramification of Lyme Disease. One health practitioner—a good one—thought I’d had it in the past, but docs gave me the wrong blood test. Could be caused by head trauma. I’ve had 3 concussions. Could be caused by an upper respiratory tract infection. Had that real bad in 2005. Might be barometric pressure issues. Weather is definitely a trigger. Some foods can put me under, but docs say I’m not allergic to anything but dust. Cincinnati is #1 in the nation for migraines, so I guess that’s somewhat of a hint for me, but I don’t exhibit all of the classic symptoms of MAV…or for that matter…Meniere’s…or PLF. It’s a combination of a bunch of things. Some say Meniere’s is caused by too much salt. A little bit of correlation there, but not real, hard, true causation after experimenting on myself. Some say stress…maybe a little bit of that, but not too much. Some say ischemia…nothing at all like that. Too much caffeine. Never was a big coffee drinker. Too much alcohol. Never was a big drinker.

In line with geopolitical issues with America’s most potent competitor, maybe it’s all part of a vast Chinese conspiracy. No…not cheap, lead paint-laden toys. MSG in Chinese food kills me.

Hmmmm…

After all of the tests, constant study, interaction with fellow patients, and all sorts of fascinating and sometimes meaningless conversations with doctors over the last 3 years, I’ve finally have a good idea as to what caused all of this:

MY BOSSES & EMPLOYEES. THAT IS, THE MACHINATIONS OF CORPORATE AMERICA & CONTEMPORARY AMERICAN SOCIETY.

LOL. AFTER ALL THESE YEARS, IT’S FINALLY DAWNED ON ME.

Yes. It’s quite simple. Since 1994, my bosses—mostly MBAs from a far distant palace of intriguing balance sheets and interesting ways of interpreting taxation and compensation— always seemed to always be putting me into the weirdest, whackiest, craziest situations. Some of it was indeed fun and adventurous, but some of it was…well…just a little bit crazy when I look back at it.

Always having to turn around some troubled account. It usually went something like this from a boss who just bought some real expensive new toy or a big house he didn’t really need. “Listen, if you can’t take this account in San Francisco and turn it around, we might lose the whole $30 million account across the country.”

Managers kept quitting…mostly for the right reasons. The problem…predictably… was simple: The contract was just bad.

Got it turned around after fixing some simple things and getting some price increases. A few good truck drivers actually educated me on that during my first two weeks on the job.

That was it.

Simple.

Always having to fly somewhere to fix something after getting a real complex financial spreadsheet from some guy at corporate HQ who never visited the account.

Always being put in charge of the most difficult—and sometimes borderline narcissistic and psychotic—customer who never seemed to understand that $1 million in cost savings is roughly equivalent to $10 million in sales, and that return on equity—not his bonus based on sales quotas or exploiting the tax code—was the ultimate measure of business success.

Always having to “re-engineer” some account with well paid, but curiously militant employees whose collective goal in life was to do the exact opposite of John F. Kennedy’s famous speech in the early 1960s.

Interestingly, with many of these accounts, I always seemed to have some underperforming vendor who wanted to give me tickets to the next big game, but wanted a price increase at the same time. Another vendor—often saddled with all sorts of debt---- wanted me to experiment with his latest breakthrough in their technology, but always seemed to fail to mention that beta tests always have too many bugs to be properly functional & provide a real return on investment.

Uh oh…I’m starting to sound too much like whining Woody Allen.

Sorry.

Let me put it in more proper, sensible perspective.

As Ross Perot once said about management: “The principles of leadership are timeless because in a rapidly changing world human nature remains constant.”

Folks just want something for nothing.

It was kind of like being involved in some bizarre, morphed, amalgamated version of Seinfeld, The Office, Office Space or Curb Your Enthusiasm.

A comedy of errors that should’ve never happened in the first place.

So, in sum, it’s basic and simple…just as most things really are. After all, the elite power players in our society ----lawyers, doctors, politicians, and corporate executives---- always seem to try to make things more complex and mysterious than they really are.

In this case, as far as my three year odyssey with the medical establishment goes----it has nothing to do with some sort of exotic etiological agent…no elaborate epidemiological study will explain this. In the case of these diseases, new medical technology or advances in biophysics or medical physics only seem to add unnecessary complexity to the fray instead of narrowing it down to what everyone really wants: A Real Cause & Real Cure.

“Progress”, after all, especially in the early 21st century, is often an oxymoron.

I do have some proof of this. Patients have a gut instinct about what caused their ailment, and doctors continue to argue amongst themselves without listening…and curing.

Below is the best explanation I’ve ever read. It’s from the blog of a Meniere’s patient, and lends credence to what I’ve noted above. I got a kick out of this, and strongly believe it’s at least partially true based on my experiences.

It explains a lot about the disease, and the contemporary world of business.

In the end, the counterintuitive nature of the world has just made me plain old dizzy.

Enjoy. "

The 10/20/30 Rule of PowerPoint
by Guy Kawasaki

(Link to Kawasaki’s Biography: en.wikipedia.org/wiki/Guy_Kawasaki)

I suffer from something called Ménière’s disease—don’t worry, you cannot get it from reading my blog. The symptoms of Ménière’s include hearing loss, tinnitus (a constant ringing sound), and vertigo. There are many medical theories about its cause: too much salt, caffeine, or alcohol in one’s diet, too much stress, and allergies. Thus, I’ve worked to limit control all these factors.

However, I have another theory. As a venture capitalist, I have to listen to hundreds of entrepreneurs pitch their companies. Most of these pitches are crap: sixty slides about a “patent pending,” “first mover advantage,” “all we have to do is get 1% of the people in China to buy our product” startup. These pitches are so lousy that I’m losing my hearing, there’s a constant ringing in my ear, and every once in while the world starts spinning.

Before there is an epidemic of Ménière’s in the venture capital community, I am trying to evangelize the 10/20/30 Rule of PowerPoint. It’s quite simple: a PowerPoint presentation should have ten slides, last no more than twenty minutes, and contain no font smaller than thirty points. While I’m in the venture capital business, this rule is applicable for any presentation to reach agreement: for example, raising capital, making a sale, forming a partnership, etc.

Ten is the optimal number of slides in a PowerPoint presentation because a normal human being cannot comprehend more than ten concepts in a meeting—and venture capitalists are very normal. (The only difference between you and venture capitalist is that he is getting paid to gamble with someone else’s money). If you must use more than ten slides to explain your business, you probably don’t have a business. The ten topics that a venture capitalist cares about are:

Problem
Your solution
Business model
Underlying magic/technology
Marketing and sales
Competition
Team
Projections and milestones
Status and timeline
Summary and call to action

You should give your ten slides in twenty minutes. Sure, you have an hour time slot, but you’re using a Windows laptop, so it will take forty minutes to make it work with the projector. Even if setup goes perfectly, people will arrive late and have to leave early. In a perfect world, you give your pitch in twenty minutes, and you have forty minutes left for discussion.

The majority of the presentations that I see have text in a ten point font. As much text as possible is jammed into the slide, and then the presenter reads it. However, as soon as the audience figures out that you’re reading the text, it reads ahead of you because it can read faster than you can speak. The result is that you and the audience are out of synch.

The reason people use a small font is twofold: first, that they don’t know their material well enough; second, they think that more text is more convincing. Total bozosity. Force yourself to use no font smaller than thirty points. I guarantee it will make your presentations better because it requires you to find the most salient points and to know how to explain them well. If “thirty points,” is too dogmatic, the I offer you an algorithm: find out the age of the oldest person in your audience and divide it by two. That’s your optimal font size.

So please observe the 10/20/30 Rule of PowerPoint. If nothing else, the next time someone in your audience complains of hearing loss, ringing, or vertigo, you’ll know what caused the problem. One last thing: to learn more about the zen of great presentations, check out a site called Presentation Zen by my buddy Garr Reynolds.

Written at Atherton, California

MS,

Well written and entertaining - and right on!

I’ve been wondering how you’ve been doing. Sounds like you’re feeling good enough to be composing.

How did your PLF get diagnosed?

Continued best,

Julie

Hi Msdxd,

Enjoyed reading what you shared with us. Yes…there are alot of theories. Besides the dizzy condition (MAV) i also have another chronic condition that doctors believe is caused by an Autoimmune Disorder. For many years i thought my (MAV) condition may have been caused by STRESS…because in the beginning just prior to the vertigo episodes i was going thru tremendous stress at work trying to learn a new job. Both of my chronic conditions began a few months after the stressful episode. Also…i have never outgrown Motion Sickness…when i was a young kid i was not able to experience the carnival rides that go in circles because i would become horribly sick. Plus…a couple times on a boat was not pleasant. Driving thru curvey mountains also made me sick…and to this day i have never outgrown this. I stay away from Cruise ships, carnival rides and if i have to drive thru curvey mountains i make sure i’m the driver. My doctor at UCLA said a fairly high percentage of MAV folks never outgrew motion sickness. When i look back my symptoms were similar to Benign Positional Vertigo(at the beginning of this dizzy mess). Maybe i have both.

Thanks for sharing…you made some good points.

Joe

In the end, the counterintuitive nature of the world has just made me plain old dizzy.

Enjoy. "

Well put. I have MAV/vestibular hypofunction secondary to viral infection/BPPV/ mal de disembarkment–and when I go to work where the pressure is unrelenting, and I have no control over my work environment, I feel worse. Surprising?

Kira

— Begin quote from “Julie”

MS,

Well written and entertaining - and right on!

I’ve been wondering how you’ve been doing. Sounds like you’re feeling good enough to be composing.

How did your PLF get diagnosed?

Continued best,

Julie

— End quote

I was doing real well until one of my ventilation tubes came out. It had been in for over a year. I started having a lot of problems with disequilibrium after it came out. I felt that with MAV, and with how well I’ve responded to verapamil since I started seeing Dr. Hain in August, it shouldn’t do that.

I contacted Dr. Hain, and he felt it was the sign of PLF. I told him I had a negative fistula test back in 2005—when things were much worse—and he said that just because one has a negative fistula test doesn’t necessarily mean they don’t have a fistula. Asked him how we should proceed, and haven’t heard back from him yet. My assumption is that we’ll do some additional testing when I see him in a little over a month. I researched PLF quite a bit on his site, and found the information to be intriguing. We’ll see.

tchain.com/otoneurology/diso … stula.html

Obviously, the little e-mail I wrote up is tongue and cheek. When one puts all of those factors together, it’s obvious—medically speaking---- that MAV is a definitely present, as well as perhaps Meniere’s and PLF.

— Begin quote from “joseph0952”

Hi Msdxd,

Enjoyed reading what you shared with us. Yes…there are alot of theories. Besides the dizzy condition (MAV) i also have another chronic condition that doctors believe is caused by an Autoimmune Disorder. For many years i thought my (MAV) condition may have been caused by STRESS…because in the beginning just prior to the vertigo episodes i was going thru tremendous stress at work trying to learn a new job. Both of my chronic conditions began a few months after the stressful episode. Also…i have never outgrown Motion Sickness…when i was a young kid i was not able to experience the carnival rides that go in circles because i would become horribly sick. Plus…a couple times on a boat was not pleasant. Driving thru curvey mountains also made me sick…and to this day i have never outgrown this. I stay away from Cruise ships, carnival rides and if i have to drive thru curvey mountains i make sure i’m the driver. My doctor at UCLA said a fairly high percentage of MAV folks never outgrew motion sickness. When i look back my symptoms were similar to Benign Positional Vertigo(at the beginning of this dizzy mess). Maybe i have both.

Thanks for sharing…you made some good points.

Joe

— End quote

Truly, for me—we’re all the same and all differnt I guess—the main driver was that nasty virus. Nonetheless, since then, I’ve noticed multiple triggers. Stress will indeed exacerbate the symptoms.

— Begin quote from “kira”

In the end, the counterintuitive nature of the world has just made me plain old dizzy.

Enjoy. "

Well put. I have MAV/vestibular hypofunction secondary to viral infection/BPPV/ mal de disembarkment–and when I go to work where the pressure is unrelenting, and I have no control over my work environment, I feel worse. Surprising?

Kira

— End quote

Not surprising at all. I know exactly what you mean. Very fast multi-tasking will cause me problems. Before the onset, I loved multi-tasking and fixing things despite some of the tongue and cheek things I noted above. After the onset, I’m pretty one-dimensional.

One of my wife’s former co-workers had Guillain-Barré . Before he got it, he was a great worker. After he came back from medical leave, he couldn’t do his job.