A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Monday, January 28, 2013

Choices That People with Chronic Diseases Have to Make

As I've mentioned before, I follow quite a few blogs for inspiration, as well as for practical information.  One of my favorite is Turning Straw into Gold, written by Toni Bernhard, J.D., for Psychology Today.  Toni suffers from chronic fatigue syndrome, if I am not mistaken, and is also a long-practicing Buddhist.  Her latest article, titled 5 Tough Choices You Face When Chronically Ill or in Pain, really articulates well the psychological agonizing we tend to put ourselves through on top of our physical ailment.

I encourage anyone with, or who loves someone with, a chronic illness to read the whole article, but I have listed Toni's 5 questions below followed by my own experience with each of them.

1. Do we talk openly about our health problems or do we keep them private?

I used to speak freely with just about anyone, sharing the fact that I have Meniere's disease and how it affects my life.  By doing so, I found lots of compassion, support, and understanding.  It also helped to explain why I tried not to over commit or that I might not always be able to keep the commitments I had made.

But this summer when I decided it was time to change jobs, I feared discrimination if I were to be open about my condition.  So I didn't offer it up.  I didn't lie, I just didn't confess anything either.  I understand where employers are coming from, they don't want to invest money hiring and training an employee that has an increased risk of not being able to perform their duties or, god forbid, becoming disabled.  On the other hand, I felt I was the best person to assess whether or not I could reliably do the job for which I was applying and not leave that up to a speculating employee health nurse or manager who has no clue about me or,most likely, this disease.  I had not missed any work days in the past year or more and, since starting my new job six months ago, I have only called in sick once for an unrelated illness.  Besides, there's no guarantee if, or when, my Meniere's symptoms will rear their ugly head again.  It could be a very long time from now.

I apologize for going off on a tangent, but I think it helps to illustrate why I felt I had to do a 180 regarding my policy of transparency.  Before this summer, I never thought I'd hide this aspect of myself from anyone, but then I had a change of heart.  In one way, I feel guilty and I hate keeping secrets (my coworkers now understand I am hard of hearing and know I have a hearing aid, but I have been vague as to why), but I am also free of all speculation as to why I might seem under the weather some days or feel I am under the microscope for potentially making errors related to my episodic brain fog.

I don't go out of the way to hide anything about myself,  I am still blogging, for instance, and someone could easily enough find it, but I am a little more private these days.  I guess I have been afforded that luxury from the Meniere's gods - for the time being.  And if word gets out, I'll cross that path when I come to it.  At least I now have a record of good productivity and reliability with this new group of people.

2. Do we ignore a new symptom or have it checked out by a doctor?

For months, I attributed my poor cognition and near-constant fatigue to Meniere's.  Then, being in my mid-forties, it dawned on me that I could have hypothyroidism or some other unrelated problem that might actually be treatable.  Wow, what a concept - a medical condition that might have a treatment!  So I made an appointment for a physical, had a whole panel of blood work done, and lo and behold... Nothing!  But at least then I knew with relative certainty that indeed my issues were most likely related to This Stupid Disease after all.
Working with cancer patients as I do, I know all too well the consequences of ignoring insidious symptoms.  But it's a fine line, as Toni elaborates on in the article.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?

This is a tough one for anyone with Meniere's disease who has not responded to traditional medical treatment.  I followed my doctor's advice to the letter.  I took every pill, avoided salt like the plague, and kept all of my follow-up appointments, each timing reporting another failure in his well-laid plan.  He was understanding, to say the least, but he also had little else to offer me, short of taking the next step with a destructive procedure (which I eventually did).
But before crossing that bridge, I ventured off the beaten path.  I took a bucket load of supplements peddled by well-meaning individuals and racked up my credit card with chiropractic treatments.  I don't regret either, but they helped me understand just how far this disease could push me toward desperation.  I can't say I won't ever feel that desperate again.  This is a miserable disease when at its worst.

4. Do we push our body to the limit or do we always play it safe?

Up until recently, I felt compelled to keep my life as normal as possible, living it as fully as my symptoms would allow.  In other words, I lived up until the second the vertigo set in, being completely unable to think or walk.  But last month I read another Meniere's sufferer's account of learning to cope with this Beast.  His approach was to put the brakes on all activities at the first hint of an attack.  This would be hours, or even days, ahead of when I would begin to slow down.  I took his advice to heart and started to make myself take a break and meditate any time my tinnitus started ramping up or when I started to feel off-balance or brain foggy.  It has made a big difference and I do think I may just have headed off a few attacks with this method.
My philosophy has been to not let Meniere's take away a minute more than absolutely necessary from my life, but now I realize I have to be proactive, too.  By doing so, maybe I will get more of those good (aka vertigo-free) minutes for myself in the end.

5. Should we aggressively fight to regain our health or should we accept our fate?

I am a big believer that once we accept our circumstances new doors will magically open.  If, on the other hand, we deny the obvious and simply wish things were different than they really are, it seems somehow that the powers of the universe know this and just needle us more.

What do you think of Toni's questions and how have you dealt with each of them?

Friday, January 25, 2013

Rock On, Dana White!

For those of you who don't know who Dana White is, he is the outspoken president of the Ultimate Fighting Championship (UFC) who also happens to have Meniere's disease.  He has been very adamant about doing whatever necessary to control his vertigo and last week he underwent what appears to be endolymphatic shunt surgery at House Ear Clinic in Los Angeles.  There have been several stories leading up to, including a video on YouTube of, his surgery.

Today this story was published quoting White on insisting on traveling, actually flying, less than a week after surgery despite being discouraged from doing so.  Love this quote from him:

“It’s like me and my ear are two different people now,” White said.  “My ear’s trying to make me do something that I don’t want to do and my ear is going to do what I want to f**king do. I’m in a personal fight every day with this f**king ear and I’m going to win, that’s how I look at it.”

Rock on, Dude!

Wednesday, January 23, 2013

More About Triggers

I saw this article on WebMD this evening.  Sometimes their stuff is good and sometimes it is maddeningly paltry, containing no real substance to support some sensational headline.  Those of you who follow my blog know I am not sold on there being reliable triggers for Meniere's symptoms based on my own personal experience anyway.  Any Meniere's specialist worth his salt, however, will tell you to follow a diet, well, low in salt because it is thought to increase fluid in the inner ear and lead to symptoms.  I plan to research the literature a bit to see how strong the evidence for this is because I've read it may actually be quite weak.  Regardless, for the first two years after being diagnosed with Meniere's,  I restricted my sodium intake religiously.  In addition to those being the worst years of vertigo for me, trying to avoid sodium in my food certainly added to my overall poor quality of life during that time.  This article touches on this very subject.  Enjoy!

Tuesday, January 22, 2013

Hearing Loss and Mental Decline

Sometimes I read something that brings me to tears for the simple reason that I now know someone has validated what I have experienced, but couldn't necessarily articulate in words.  This is an example of one of those times.  But this is not just true in the elderly.  I've often wondered if the brain fog I experience from time to time is directly linked to a fluctuation, a dip specifically, in my hearing.  It just may be...

Hearing Loss Linked to Mental Decline in Elderly

WebMD Health News

Jan. 22, 2013 -- Hearing loss and mental decline are two common conditions of aging, and now a new study finds that they may be related.
Older people with hearing deficits were more likely than those with normal hearing to develop problems with memory and thinking over the course of the study.
On average, the study participants with hearing issues had significant mental impairments three years earlier than those without them.

Untreated Hearing Loss Common

About two-thirds of adults over the age of 70 have some degree of hearing loss. 
And the number of people with dementia is projected to double over the next two decades as the population ages.
The researchers now hope to study whether hearing aids can slow mental decline in the elderly.
Otologist and epidemiologist Frank R. Lin, MD, PhD, led the study. He says only about 15% of people who need hearing aids get them. Lin is an assistant professor at the Johns Hopkins University School of Medicine in Baltimore.
“Our findings emphasize just how important it is for physicians to discuss hearing with their patients and to be proactive in addressing any hearing declines over time,” he says.
The investigation included close to 2,000 men and women in their 70s and 80s who took part in an aging and health study that began in the late 1990s.
Hearing was tested in year five of the study, and the men and women underwent a series of tests over the next six years to assess declines in memory and thinking.
The men and women with hearing loss showed evidence of these declines 30% to 40% faster than the people with normal hearing. And those people with more hearing loss had steeper declines in mental function.
The study was published online in the journal JAMA Internal Medicine.

Social Isolation, Brain Overload May Explain Link

While it did not address how age-related hearing loss may worsen problems with memory or thinking, Lin says there are several theories.
One theory is that the social isolation common among people with untreated hearing loss leads to mental decline. Previous research has identified loneliness as a risk factor for such decline, he says.
Another theory is the idea that the working memory is limited with respect to the amount of information it can hold and the operations it can perform.
“The job of the inner ear is to take in sounds and encode them with accurate fidelity before the signal goes to the brain for decoding, but with hearing loss the brain has a very hard time doing that,” Lin says. “If the brain constantly has to expend more resources to decode sound, this may come at a cognitive cost.”
Neurologist and Alzheimer’s researcher Marc L. Gordon, MD, calls the research compelling, but he says more studies are needed to confirm that hearing loss has a direct impact on mental decline and to understand the reasons for the link.
He adds that the study emphasizes the importance of addressing not just hearing loss but also vision loss in the elderly.
“This reinforces the notion that evaluating and treating these sensory impairments may be even more important for an aging person’s overall well-being than we have known,” he says.


Monday, January 21, 2013

A Funny Story About Triggers

Anyone with Meniere's often wonders if there are any triggers which they should avoid in order to prevent attacks.  Whether you visit websites with official medical advice or forums of Meniere's sufferers, you will certainly find a long list of plausible, and not so plausible, potential triggers which are thought to cause or worsen symptoms.  To date, I've found few that hold true for me, most (inhaled allergens, for example) I have little control over so I try within reason not spend too much time worrying about them.  But the mind is a funny thing.

As I work in healthcare, I am typically required each year by my employer to get a flu shot.  However, I don't recall if I took one the past two winters or not because I did not have direct patient contact in my previous position, so for me getting a flu shot was optional.  I think I may have opted out, not being entirely certain how it might affect my Meniere's symptoms.  However this summer I changed employers and now as I do see patients face-to-face from time to time, I am again required to get immunized.  As a general rule, I am fine with getting flu shots, not only to protect myself, but also my patients as most are quite immunocompromised.

Since I couldn't remember getting a flu shot in the past couple of years or what happened afterward, I worried a bit that it might mess with my current calm state of affairs.  While I could technically opt-out by signing a waiver, I didn't want to create any waves since this new employer has no idea of my condition.

So several weeks ago after attending an off-site meeting where there happened to be an employee health office, I made my way over to it to take the plunge.  As I walked up to the receptionist, I was a little nervous that I might be making a big mistake which I was going to regret.  Despite the multiple email reminders I had already received from HR by that point, the receptionist kindly informed me that they had not yet started giving the shots.  I was a day early!  A little relieved, and a little miffed about the fact that coming back another day would be an incovenience, I went on my way.

Well, wouldn't you know it, but the next day I felt terrible.  Roaring tinnitus, brain fog, and disequilibrium.  These days this is what I consider a full-blown attack.  But I just had to laugh because had I been able to get my flu shot the previous day, no doubt I would have attributed this attack to it.

This is a little lesson that before we assign triggers to our symptoms, we have to repeat the experiment several times to be sure.  While this is not fun for sure, it is a necessary evil.  The alternative is that we end up avoiding foods, activities, and other things that make our lives more enjoyable and healthier with the false belief that they trigger our symptoms.  Meniere's already takes so much from us, we need to be careful not to be our own worst enemy, giving away all control of our circumstances to the Beast.

A few weeks later I finally got my flu shot and I am happy to report that I had no reaction whatsoever.  With all the news of the current flu epidemic, I am glad to have a little extra protection on board and that I didn't let my fear get the best of me.

Friday, January 18, 2013

Coping with an Uncertain Future

If there's one thing everyone with Meniere's Disease has in common, it is the first-hand, brutal understanding that life is uncertain.

Before Meniere's, I had no problem making plans days, weeks, even years in advance with confidence.  Today I still make most of those plans, but with the understanding that everything in life is tentative.  I hope I can keep my commitments, but I won't be devastated if I can't.  Life, it turns out, goes on anyway.  It's an interesting way to live, to say the least.  It would be easy to succumb to fear under these circumstances as no one wants to let others down.

The fear of suffering is worse than the suffering itself. ~Paulo Coelho

Instead I've learned to embrace this knowledge as a positive thing because isn't it true that no one's future is guaranteed?  At least those of us with Meniere's know this already and so when things don't go as we'd hoped, it's not such a shock.

Sometimes not getting what we want is a wonderful stroke of luck. ~Dalai Lama

I read several inspirational blogs and lean on others for support who happen to be traveling this journey with me.  While skimming Tiny Buddha the other day, I came across Lisa H.'s blog, Getting to Zen, and her post Finding Peace When You Feel Scared About What Might Happen.  As I was reading about her experience of how she coped while waiting for the results of a breast biopsy (everything turned out to be okay), I couldn't help but see the parallels between this and the experience of living with Meniere's.

For those who don't know, the symptoms of Meniere's disease are episodic and unpredictable.  This can be the most frustrating, and fearful, part of the condition, since you simply cannot know when an attack might occur or just how disabling it will be.  Not only that, but one might go weeks, months, or years doing very well.  They might even think they're "cured", only to be knocked down again completely out of the blue.  There's no rhyme or reason to it.  A certain percentage of people, statistics vary from 5-50%, eventually become significantly and permanently disabled.  So even as I breeze though this time of reprieve, I live everyday with these statistics in my head and the images conjured up from reading the accounts of those who are living through the worst of it - usually from bed or a wheelchair, their hearing limited to the roaring of constant, load tinnitus.  One study actually found that the quality of life rated by people living with advanced Meniere's disease is worse than that of people with AIDS or cancer in the last six days of life.  So for those of us with this disease it is no joke to have to learn to cope with the fear of the future.

I'd like to borrow from Lisa H.'s advice and tailor it to the Meniere's experience:

Limbo is not a bad place.

Living with not knowing what the future holds, or even with suffering in the moment, has taught me that the present moment is never intolerable.  We make our present intolerable by placing conditions on it.  For example, during an attack when I've been confined to bed for hours at a time, waiting for the room to stop spinning, yes, it is physically very uncomfortable.  But it is far worse when my thoughts revolve around what I should be doing.  "I should be at work.  Everyone must be so mad at me for having to take on my responsibilities."  "My kids must be so sad I cannot pick them up from school today."  Instead, by gently bringing my mind and thoughts back around to the exact present moment I remind myself to embrace it as it is and deal head-on with what I am living.  There are some things we just cannot control, no matter how much we wish we could.

Try not to worry.

I cannot add to Lisa's words, they are perfect.  She says:

Worrying is useless.  It serves absolutely no purpose.  The past is gone and the future hasn't happened yet.  Don't use your present time worrying about things you can't control.

She goes on to say, Instead of worrying, meditate, practice gratitude, become still, listen to your soul, and surround yourself with love.  Yes!

Nothing is permanent.

This is so true of what living with Meniere's is like.  There are very dark days where you are certain this is how you will feel for the rest of your life.  The vertigo, disequilibrium, hearing loss, and deep fatigue can last hours or come and go in rapid succession for weeks or months on end.  But they always change in intensity and eventually frequency.  Not only do the symptoms change, but so can our perception of what they mean to us.  Many of us also experience periods of normal life when we can almost forget we even have this cross to bear.

When I was first diagnosed, my doctor made a horrifying comment to me.  He said, "We consider you well-managed if you have less than two or three episodes of vertigo a year."  At the time, I couldn't believe I could possibly live with having two or three horrific vertigo attacks every year.  That was simply unacceptable to me.  If I had only known how much worse things would get before they got better.  In hindsight, I am so glad I didn't know.  I went on to have two or three of these attacks every week off and on for the next two years.  My, how my perception of things changed during since time.

It is okay to be afraid.

I found a lot of my own suffering was caused by trying to manage my fear.  Eventually, I learned to embrace it.  By admitting I was afraid, I acknowledged how that felt and learned that it would not kill me.  Fear is often caused by uncertainty.  As it turns out, life for everyone is uncertain yet we cannot be paralyzed with fear.  At least now, I fully understand what that means and I am okay with it.

Surround yourself with love.

Again, Lisa H.'s words mirror what I have learned from living with chronic illness.

Let those close to you know what is going on in your life and how you feel about it.  There is no need to carry the weight of a challenge on your own.  Sometimes hearing others talk can shed light on what would otherwise be a bleak situation.

One thing I have learned is that sharing that I have Meniere's disease with others and what it means for me can be a double-edge sword.  On the one hand, letting family and close friends know what is going on can help explain why you seem unreliable or distant and allow them to support you.  It will prevent people from speculating, incorrectly, about what might be going on.  On the other hand, once you share the information with say acquaintances or co-workers, you can never take it back and it might come back to haunt you later.  You might know what you're capable of taking on, but those who don't know you well might doubt your abilities to complete a project, for example.  Yet again, by not sharing your situation with others, you might rob yourself of support and opportunities to learn about their challenges and how they've coped.

Deciding who to share your illness with and when must be made on a case by case basis.

Take care of yourself.

This is a constant challenge when living with Meniere's disease.  Many people find that stress and overdoing it often makes them feel worse.  Yet when we are feeling well, we want to be "normal" again and  live each day to the fullest.

I have settled into certain habits that I try to stick to everyday which help minimize my anxiety and promote good physical health.  I eat three meals a day and limit my intake of processed food.  I drink water often.  I make sure to set aside eight to nine hours for sleep each night.  I limit my commitments.  I meditate for at least a few minutes every night before I go to sleep.  I seek out inspiring stories and quotes to reflect on.  And, perhaps most importantly, I find things in my life every day, no matter how awful I feel, to be grateful for.  Even it is just for the roof over my head and the soft bed cradling my body, I still remember that there's always someone out there who is worse off than me.

You are always going to be okay.

The older we get, the more opportunities we've had to experience something we fear.  We all have things that we think, "If that ever happened to me, I'd just die."  Well, sadly sometimes those things do happen and guess what?  We don't die.  In fact, sometimes we come away learning that we were stronger than we thought.  We find that we must reevaluate our expectations and adjust them in order to accommodate things that we simply don't have any control over.  We learn to identify,  manage, and focus on the things we can control.

In the end, that's a beautiful thing.

Monday, January 14, 2013

Time for Reflection

Every three months I make the 2-1/2 hour drive from San Diego to the House Ear Clinic, just west of downtown Los Angeles, to see Dr. Derebery who is a Meniere's and allergy specialist.  It's not a terrible drive, just long and lonely.  No matter what I listen to on the radio, each time I tend to reflect on my Meniere's journey at some point.  It usually starts with some "poor me"-ing for having to spend so many hours in the car.  But pretty quickly it turns to sheer amazement at how far I've come and gratitude that I am only a few hours from one of the best doctors in the country for treating this disease.

Today I reflected on the progress I've made thanks to two particular treatments: intratympanic (IT) gentamicin and allergy shots.  Two years ago, I was in bad shape and had little hope that anything would ever relieve the relentless vertigo I was having after failing just about every noninvasive, nondestructive treatment.  Most doctors, and even other Meniere's sufferers, strongly advise against doing anything destructive without first exhausting all other options.  While I don't disagree, I also know firsthand how incessent episodes of vertigo can bring life to a screeching halt.  Even if I'd known then what I know now, specifically that I had allergies and that treating them with desensitation therapy, aka allergy shots, would eventually help me gain control over this disease, I still think I would have taken the gent first.

Gent is quick and dirty.  Yes, it causes permanent vestibular and, in a small percentage of cases, hearing loss, but it stopped the vertigo for me in a matter of weeks.  Allergy shots, on the other hand, took three to six months to begin to produce consistent relief.  A year later, my episodes of brain fog, dysequilibrium, and fatigue are much shorter, usually lasting just a few days or less, and much farther in between - three to six weeks or more.  My quality of life has been so much better these past six months than any time since this dreaded disease took hold of me nearly four years ago.

I do wish I had known from the very beginning what I know now.  But, hey, that's never how life works, is it?  In the meantime, I've grown and matured into a different and better person.  I don't think time lost to physical or emotional suffering has to be time wasted.  I have learned that life is not always in my control and I can now accept that.  I certainly did not know or believe that before in the most intimate way I do now.

Today, I sat in the busy waiting room at House and observed the clinic's other patrons.  They ranged in age from a few years old to the very elderly and everything in between.  They had walkers, wheelchairs, and cochlear implants.  Some wore happy faces and others had looks of despair that I can only surmise came from suffering in one way or another from a hearing and/or vestibular disorder.  I could only hope for them that they, too, might soon find relief from whatever was troubling them.

I don't know what tomorrow will bring, but I am so grateful for today.  Thanks to Meniere's, I am reminded that these days may not be endless and that another round of Meniere's-related, or other, suffering could be right around the corner.  That's okay.  I'll deal with it if and when it comes.

Paulo Coelho, one of my favorite authors, said it best:

"The fear of suffering is worse than the suffering itself."

Tuesday, January 1, 2013

Meniere's, Migraine, and Bilateral Disease

I just came across this article about a recently published study which found a higher rate of bilateral Meniere's in people with a history of migraine.  It only suggests correlation, but it is interesting nevertheless.  Here's the story:

Study: Family History, Migraines Found Linked to Meniere's Disease

In Otology & Neurotology, researchers from the University of Pennsylvania, Philadelphia, found patients with bilateral Meniere's Disease (MD) have a higher incidence of migraines and of a family history of MD. MD is based on the presence of vertigo, sensorineural hearing loss, tinnitus and aural fullness.
Their study appeared in the journal Otology & Neurotology.
The authors prospectively evaluated 224 patients with MD, 31 had bilateral disease. They report the average age of onset for their unilateral MD patients was 46.6 years (+/- 12.5 years) and for their patients with bilateral MD, the average age of onset was 39.9 years (+/- 13.8 years), yielding a statistically significant difference in the age at onset for the two groups (unilateral vs. bilateral MD). However, the exact diagnostic criteria for unilateral and bilateral MD are variable and the etiology remains unknown.
Of note, the co-morbidity of MD and migraine is historically reported to range from 22 to 56 percent. However, they authors noted with respect to their patients with unilateral MD, only 10% report a history of migraines, while 41% of their patients with bilateral MD indicated a history of migraine.
With regard to a family history of MD, only 4% of the patients with unilateral, and 28 percent of the patients with bilateral, Meniere's Disease reported a positive family history of MD. The authors report that in typical bilateral MD cases, the second ear may present with MD many years (ranging from 0 to 30 years) after the first ear.