There's an App for That! Meniere's, that is.

I just got a message from Max, a reader with Meniere's, who has developed an app for tracking our symptoms and potential triggers.  It's available at the Google Play Store here:

https://play.google.com/store/apps/details?id=net.radair.beatingmenieres



I'm super excited to try this.  Props to Max!

Rest and Meditation to Head Off Attacks

I'm a big believer in meditation and using relaxation techniques to quiet my mind and calm my body.  I've never really been able to tell if stress feeds my Meniere's attacks or if my Meniere's symptoms lower my resistance to stress.  I've tended to always lean toward the latter.  I still think that is true, but I recently read a book that resulted in a paradigm shift in how I see this.

The book is Meniere Man and the Astronaut.  I hate to be critical as obviously the author put his heart and soul into writing and publishing his account of his experience with Meniere's disease, but it is a very amateurish publication.  Nevertheless, he proposed the idea that listening to one's body and immediately backing away from all stressful situations at the first sign of an attack can potentially prevent a full blown episode.  As evidence, he cites another author's work, Full Catastrophe Living, by Jon Kabat-Zinn.

As I'd heard about Kabat-Zinn on an Oprah show some time back and recalled being piqued by whatever it was he was saying at the time, I downloaded the book and began reading.  This is a class act book which teaches meditation and coping skills to people with chronic illnesses.  I've started to implement the techniques suggested by Kabat-Zinn, especially the minute I notice my ear starting to buzz or my body feeling off-kilter.  So far it seems I've been able to halt my symptoms in their tracks after a brief meditation and full body relaxation session.  The key seems to be to catch it early.

I'm not sure how powerful this technique will be in all cases, but either way Kabat-Zinn reminds me that the very best thing we can do when we are suffering is to acknowledge the pain or discomfort and  acknowledge or embrace it.  It sounds counterintuitive but, as Eckart Tolle says, "what you resist, persists."  I have found this to be very true for all challenging situations and suffering I've experienced.  The hard part is to see that I am suffering or ,more specificially, fighting or denying what is real so I can meet it where it is and face it.  But with practice, I think I can master it.

A Mild Attack and an Observation

Post Script: I almost forgot to add the most important potential trigger and related comments about barometric pressure below.  Edited text is in italics.

After many weeks of feeling very well overall, I had a mild attack over the weekend.  Thank goodness, I am still vertigo-free after that little scare in Yellowstone this summer, but I still get random attacks that present as a warm, buzzing sensation in my ear, brain fog, and mini-spins.  For the uninitiated, a mini-spin is a dizzy spell lasting just a few seconds.  These are disorienting enough that they interrupt whatever I am doing and force me to focus solely on remaining vertical and calm until the disturbance passes.  During periods when I am having symptoms, I also have a general, persistent sense of dysequilibrium so I must be careful not to make any sudden movements that could bring on dizziness or a fall.

This latest episode began Friday evening with the telltale increase in tinnitus and that warm, buzzing in my ear.  Probably making matters worse, I stayed up until midnight reading The Good Earth, by Pearl S. Buck, as I just could not put it down.  I justified staying up well past my bed time by telling myself I would sleep in, but my body had other plans as I woke up at 5:30 am and couldn't go back to sleep.  When I finally got up, I could tell my balance was off and my ear was still buzzing, but I said I would just take it easy, no pressure to do anything that day.

As the day went on, we decided to get our Christmas tree.  But before we could do that, we needed to move furniture around.  With two cats, a dog, and three kids, that means a ton of dust bunnies flying around off the hard floors.  I do know that dust has a terrible effect on my ears and sinuses, so I took an extra allergy pill and shot of nasal steroids to head off the worst of it, but I could definitely tell I was feeling "allergic."

On the way to the tree lot, we stopped at Target for some new tree lights.  By this time, I was feeling very off balance and brain-fogged, so the crowds and noise were really doing a number on me.  At one point, I got separated from Phil and the kids and while turning this way and that, looking down aisles, I was hit with a pretty major, very disorienting spin.  I stopped mid-aisle and rested for a second.  Fortunately, it passed and I hooked back up with the fam.  I made it through the rest of the trip and rested when we got home.

In the end, I got through the evening, but cancelled plans to stop by a friend's holiday party.  I have found that I hate to use "not feeling well" as an excuse not to do something.  I feel like eventually people with think it is just an often-repeated excuse not do something I'd rather not do.  When I need to back out of plans because of my Meniere's symptoms or just because I know I need to rest instead, I prefer to give some other reason.  Weird?

I've never been one to find any tried-and-true triggers than invariably lead up to my attacks.  I tend to believe that, in my own case anyway, much of what causes attacks for me is beyond my control.  But I've recently decided to keep a detailed log of my activities, the weather, sleep, and food intake.  Looking back at the end of last week, if I had to try to identify one or more potential triggers for this weekend's attack, I'd have to narrow them down to:

1. Stress and overdoing it with shopping trips in the days prior.
2. A significant lack of sleep the night before.
3. The dust I was exposed to Saturday morning.
4. Being due for my weekly allergy shot.
5. Barometric pressure.  Specifically a drop in pressure related to storm fronts moving in.

The fourth variable, allergy shots, is one I want to track more closely.  I have thought on several occasions that in the day or two prior to my shot, I seem to have more, yet subtle, symptoms and usually within 24 hours, or less, of my shot, I tend to begin feeling much better.  In hindsight, I also wonder if this had anything to do with my attacks in Yellowstone.  While we were travelling this summer, I messed around with the usual weekly timing of my shots and delayed them a few times, taking them about 10 days apart.  It's something to consider and also ask Dr. Derebery about at my next appointment.

Barometric pressure is the one variable that I do feel triggers my symptoms.  Any time rain rolls in, in fact usually 24 hours prior to the rain coming down, my head gets foggy and I feel pressure in my ears and sinuses.  Often the tinnitus changes with the weather a bit, too.  I have asked for a digital barometer for Christmas to help me better track and correlate any symptoms with some objective data.

As I lay in bed this morning, dreading getting up, I wondered what it was I was feeling and why.  As I sat with my feelings and meditated through them, it dawned on me that what I was feeling wasn't depression, which was my first inclination, but rather it was fear.  Fear that I would feel bad again today (I don't, so far - yay!).  Fear that this might be it, the beginning of a long, unending downward spiral.  Fear of feeling nauseous, brain-fogged, off-balance, and isolated.  Once I knew that was what was stirring around in my mind, I felt I could get up and face it.  The biggest lesson that I have to continually relearn is not to place judgment on my physical and emotional feelings.  When I remember this, everything is so much more manageable.  It is what it is.

Health: The Good, the Bad, and the Ugly

After being knocked down and drug out by Meniere's disease and then eventually learning to cope (mostly) with the unpredictable and sometimes disabling nature of it's course, I began to wonder where we got the idea that we are somehow entitled to good health?  And why are we surprised when bad things happen to good people?  Where is it written that if we are good, our bodies will spare us suffering?

It is not just my own experiences which have led me to wonder about these assumptions, but also those of my patients, many of whom having varying stages of cancer, severe intestinal diseases, or have experienced a serious trauma.  For the most part, they seem to be good people from all walks of life.  Some are struck down in the prime of their lives and others seem to have skated along through many decades of abusing their bodies before suffering the cumulative effects of their habits.  There is no rhyme or reason to any of it, really.

Looking at this from another angle, I considered the experience of the human race before modern medicine came into being.  I suspect many, if not most, people experienced far more pain, suffering, and discomfort as part of their daily lives which they must have simply had no choice but to accept and live with as best they could.  They were probably surrounded by the suffering of others, as well, so perhaps the individual didn't feel their own circumstances were somehow unusual or undeserved, it was simply a part of life and they perhaps didn't dwell on the unfairness of it all.

Yet with the advent of technology, modern medicine has managed to prevent, cure, and effectively treat many of the things that have ailed us throughout history such that suffering for many ailments is now relatively short-lived or sufficiently masked by medications or surgical interventions.  So, for the rest of us who happen to win the rare-incurable-disease lottery, we often feel a bit like pariahs in our modern, first-world society.

As it turns out, when you join this club, you start to become more aware of the suffering around you and it becomes apparent that you are not alone in your misery.  In fact, when you look a little deeper, you find you know all kinds of people whose suffering is not much different than your own in the big scheme of things.  In my own personal life, I know, or have known, people with MS, cancer, dementia, Parkinson's disease, gluten allergy, ulcerative colitis, Crohn's disease, diabetes (types I and II), drug addiction, birth defects, and chronic, severe migraines.  Most of these people were walking around one day, leading normal, relatively healthy lives, doing the best they could for themselves and those around them, and the next they were either beset by subtle, odd omens that things were not well within or they were handed a sudden, shocking piece of news that turned their entire world upside down.

When you really look around, it becomes easy to see that the human body is rarely perfect in maintaining complete homeostasis, despite our best efforts to somehow ensure that it does.  It certainly does a fabulous job of keeping our hearts beating and the vital organs functioning in tandem just well enough so as to support life even in some very dire circumstances, but systems can, and often do, fail which can result in varying degrees of disability.  What doesn't kill us, can make us very miserable.

In today's environment, it can be relatively easy to overlook the suffering of others.  We don't live in multi-generational homes any longer, our interactions with people are buffered by email, telephones, texting, and a busy, hectic schedule that sometimes prevents us from getting to know our neighbors or even extended family members very well.  So when our body does let us down, it is easy to feel alone, weird, and guilty as if we did something we shouldn't have, or didn't do something we should have.  It has been beat into our minds that we control our destiny.  Well that turns out to be a pretty absurd assertion.  

What I've learned is, no, we don't have the control we think we have over our health or, for that matter, most aspects of our lives.  Understanding and accepting this is an important step in learning to cope with, and accept, the hand we've been dealt so that we can move on.  Learning to identify the things we can control and taking action in those areas can be empowering in a situation that can otherwise feel like it is spiraling down a dark rabbit hole.  Seek and follow the light and there is where you will find hope that you can, indeed, live each day to it's fullest potential within the confines of your imperfect body.