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, August 25, 2014

Lessons from the Front Lines

We all view life through a unique lens.  How we respond to our circumstances is relative and probably depends on a combination of our innate temperament and our life experiences, among other things.  In general, my own temperament is such that I tend to over analyze things.  When faced with a dilemma, I want to classify my options into nice little black and white boxes and then, as my husband says, I ruminate.  When coping with a chronic disease, this is not a particularly helpful approach to take.

My life experiences, fortunately, have afforded me some unique insights into how others cope with chronic illness, most of the time it's not just a nuisance disease, but something of the life-threatening variety.  It is a humbling experience to sit with someone as they work through the details of how they are going to adapt to their "new normal".  As we all know, a chronic disease can affect every aspect of one's life and lifestyle.

While I am simply a resource to help my patients learn to meet their nutrition needs, this alone is often an overwhelming and emotional task for them - and me!  Their disease state, treatment, and/or surgical interventions can have a profound effect on what they can and cannot eat.  While not insurmountable to change, it cannot be overestimated just how much what, when, and how we eat is a part of who we are.  So while my focus is always on the science and practice of nutrition, there is quite a bit of psychology that goes into applying this knowledge.  Oh, and marriage counseling, too!  By that I mean, Mr. Smith will say, "I'm eating just fine."  While his wife begs to differ.  And so we must all come to an agreement of what the problem is or if there even is one.  But I digress...

As we (meaning me, the patient and their family or caregivers, as well as the rest of the medical team) work together through the patient's nutrition options, I often learn more about who this person is, who they used to be, and who they hope to become, sometimes as they are just beginning to see the light at the end of the proverbial tunnel.  You know what light I mean.

I had a bit of an epiphany at work recently.  I realized that many of the patients I meet with are currently, or have been at some point in their lives, quite successful, powerful, and in control.  Just like those of us with Meniere's.  I'm sure they used to exude confidence and strength.  But usually when I meet them for the first or tenth time, they nearly always have furrowed brow lines, fear in their voices, and a palpable aura of anxiety surrounding them.  At least a few tears are not uncommon.  This is the average person I come across with a cancer, or other life-changing, diagnosis.

Once in a while, though, people take it to a whole new level.  Please keep in mind, I am not judging anyone's response to a clearly very stressful situation.  Whether it be cancer, advanced diabetes, dementia or Alzheimer's diseases, multiple sclerosis, Crohn's disease, or Parkinson's disease to name a few, these are all life-altering conditions with few options for treatment.  But, for a few people, this really knocks them off the rails.  It can really be quite frightening for them and everyone around them.  The level of angst can often get in the way of the patient's treatment and result in a very poor quality of life.  Some people are able to pull themselves together with the support of their family, friends, and professional counseling, but others sadly do not.

It's observing the people on the other end of the spectrum that softens my heart and inspires me, for they have an important lesson to impart. As I have explored with them how they are coping with their disease, as I always do since this can certainly affect appetite and compliance to nutrition recommendations, this person usually says something to the effect, "Well, this is it.  I will do what I need to do to manage my symptoms as best as we can, but I am not afraid.  This is just how life goes, isn't it?"  Yes.  Yes, it is.

Monday, August 11, 2014

The Art and Science of Treating Meniere's Disease

Note: I know this needs some editing, but I'm short on time so I'll try to come back to clean it up later.  Here's my B-student mentality coming through.

Most people would consider art to be something solely based on subjective preferences and emotion, while the practice of medicine as based wholly on scientific objectivity.  While there is truth in both of these assumptions, the reality is that the two overlap more than they might appear on the surface.

In an effort to produce a desired look, a good artist understands the physical and chemical properties of their medium.  They learn how and why they must use oil or acrylic paints on canvas, while watercolors must be used on a specific type of paper.  Or that there are different types of clay to be used for sculpting and that one must choose the right one depending on what the final product is to be.  Even in understanding and using the right tools and media to produce specific types of art, not everyone will agree on the beauty of the artist's final rendering.

The practice of medicine is actually quite similar.  While the practice of medicine has evolved rapidly over the last 100 years and can now treat many previously-deadly diseases quite effectively with modern medical interventions, there are still many, many conditions for which modern science has yet to understand with enough detail as to be able to manage or cure them.  You know where, I'm going with this, right?

I have spent my entire 15-year career as a dietitian working with the sickest of the sick.  The patients I have worked with have almost exclusively been dependent on tube- or IV-nutrition or have advanced-stage cancer.  In this population, I see a lot of very malnourished patients.  Severe malnutrition creates a lot of anxiety not only for patients and their families, but also for their physicians.  Many times, a doctor will ask me what "one test" can they order to track their patient's nutrition progress.  While there are many tests that are indicators of nutrition status, there is as-yet no one reliable indicator of nutrition status.  It's safe to say that the same could be said of any other measure of health.  With most chronic diseases, it is the assessment of blood tests, physical assessment, and functional status which inform the clinician of the effectiveness of their intervention(s).  And oftentimes, it is the subjective measures which are most important to patients.  Ultimately, I tell physicians and patients alike that the assessment of nutrition status is as much an art as it is a science and that the goal is really to prevent poor nutrition from interfering with treatment of the disease at hand and/or to promote optimal quality of life within the limitations of the disease's symptoms as they relate to nutrition status.  I wish there was a better understanding of nutrition and diet and how they are related to optimal health outcomes, but the science just isn't there yet.  And sadly I don't think it ever will be.  There are just too many factors and moving targets.

If we compare the current understanding and treatments for Meniere's disease to art, I think it's safe to say we're stuck square in the Middle Ages.  The scientific understanding, at least as portrayed to us by the experts, feels entirely two-dimensional.  There are some interesting nuances that appear from time-to-time, but as a whole, if compared to art, we are long way from the 4-dimensional, Technicolor experience we all hope and wish for.

Accepting the reality of the current limitations in understanding this disease, I think many of us would appreciate a little more honest discourse from our physicians.  I am tired of the words "idiopathic" and "symptom management."  I can read all of that on-line.  I want to hear their personal and professional assessment of the latest research.  Where do they think it is heading?  What should be following in the literature?  Which scientists are doing the most interesting work?

My belief is that, just like the emergence of the Renaissance after the Middle Ages, the understanding of the cause(s) and treatment of Meniere's disease will eventually take a giant leap forward, moving us closer to that 4-dimensional, Technicolor rendering of Meniere's disease interventions and outcomes.

Thursday, August 7, 2014

The Weird and Seemingly Secret Symptoms of Meniere's

I have weird symptoms that I am convinced are absolutely related to my Meniere's disease.  Over the years, I have asked all of my doctors about them and in almost every case, I get no more than a weird look and a shrug of the shoulders from them.  I have also asked fellow sufferers the same questions and, in many cases, I get a yeah-me-too, response.

Let's start by reviewing the standard definition of Meniere's disease.  In a nutshell, once all other causes, such as a brain tumor, have been ruled out, there are four "official" symptoms which will put you in the Meniere's disease camp: episodic hearing loss, usually in the lower frequencies, aural pressure, tinnitus, and vertigo.  When I go back and read about Meniere's disease on just about any medically-valid website, the description and prognosis are so sterile and practically benign that it's almost laughable.  For me, Meniere's has been so much more than these four symptoms.  Things have come and gone, but over the years I have also experienced the following:

Frequent Urination
I don't seem to get this anymore, but I used to get it every time the aural pressure would build up in the hours leading up to a vertigo attack.  After doing some research, I concluded that a possible explanations is that as the endolymphatic sac (ES) becomes swollen with fluid, the aquaporins on its surface will send signals to the brain to decrease the production of antidiuretic hormone.  This causes diuresis and I guess is the body's way of responding to the SOS being sent out by the ear that it's fluid overloaded.  This would often persist through most of a vertigo attack, as well.  As if it's not bad enough to be spinning so violently that I cannot possibly stand up, much less walk to the bathroom, I now had to pee like a racehorse every 30 minutes!

Sinus Pressure and Inflammation
There is some validating evidence in the literature that people with Meniere's disease are more likely to experience environmental and food allergies.  The leading expert on this phenomenon happens to be one of my doctors, M. Jennifer Derebery at House Ear Clinic in Los Angeles.  She is adamant that she doesn't believe that allergies cause Meniere's disease, only that there is a correlation.  Now she didn't personally tell me this, but if you've read my previous post, you know that there is some evidence to suggest that Meniere's disease is in fact one of immune dysfunction.  So, could it be that this dysfunctional immune response lends itself to the development of allergies or allergy-like symptoms?  Anyway, for the first few years, I kept telling any doctor who would listen that my sinuses often felt swollen and inflamed, at times even tingling, the sensation extending into my ears.  Each doctor agreed that they could visualize this inflammation when they looked in my nose and they threw different drugs at it, namely nasal steroids and a host of allergy medications.  The nasal steroids often temporarily helped and Claritin seemed to take the edge off, but nothing really made much of a difference until I started allergy shots.  The weird thing is that the first allergist I saw tested me for well over 30 allergens and could not find one thing I would react to.  He was as frustrated as I was because, like all the others, he could see that my nasal membranes were really inflamed.  Ultimately he named it 'nonallergic rhinitis' and sent me on my way.  It was shortly after this that I was referred to Dr. Derebery.  Rather than the standard scratch tests most allergists use, she injects small amounts of allergen solution under the skin, just like a TB test, in varying concentrations in an effort to elicit a reaction.  Testing in this way, she was able to identify 5 or 6 things that I seemed to react to, including mold, and from there I began allergy shots.  With time, they significantly alleviated my sinus inflammation.  I mention the mold specifically because I believe all of my problems began with a persistent exposure to mold about six years ago.  Other sufferers have reported a similar experience with a large mold exposure in the months leading up to the onset of their Meniere's.

The Absence of Infectious Illnesses
The literature has shown that people with Meniere's disease have an increased incidence of having one or more autoimmune diseases, such as rheumatoid arthritis, lupus, multiple sclerosis, Hashimoto's disease, Sjogren's, and others.  Meniere's disease itself is not an autoimmune disease.  While, knock on wood, I don't seem to have any other chronic conditions, I have made an odd observation in the past five years: I have not had one single cold, flu, or other known viral infection!  This is amazing because during this time, all three of my kids were in elementary school and constantly passing around the germ du jour.  Most recently it was hand, food, and mouth disease.  Ugh.  Even my husband catches a cold once or twice a year.  But not me.  I might feel like I'm fighting something off for a day, but it has never developed into full-blown illness.  Before Meniere's, I got the usual number of colds, tummy bugs, and even a couple of sinus infections, but that all seems to have changed.  My theory is that the type and degree of immune dysfunction causing my Meniere's symptoms has somehow protected me from viral infections.

GI Issues
Since the very beginning, I have felt like my body is fighting off a chronic infection.  This is evidenced by the chronic episodes of exhaustion and fatigue, but also the fact that I often have "unusual" bowel movements.  Sorry for the grossness factor.  I happen to talk about poop in great detail on a daily basis with my patients at work, but I appreciate that it's a sensitive subject for many.  I don't have diarrhea, per se, but it's not normal like it used to be either.  Most days it's just once first thing in the morning, but when my ear is acting up, it is rather urgent in nature and really just not anywhere near normal.  Like so many other things, this symptom lends itself to the theory of a disrupted immune system, specifically at the level of the mucous-associated lymph tissue (MALT) which lines everything between our ears and rectum.

Ear, Jaw, Neck, and Tooth Pain and Swollen Lymph Nodes
To me, this seems to be a huge oversight on the part of doctors and researchers and no one seems to have anything to say about it.  I know I am not alone in experiencing these symptoms.  I have had so many dental exams, going so far as to have my crowns replaced and having antibiotics injected under my gum line, because at times my teeth on the right side of my jaw ache and become sensitive to hot and cold.  It comes and goes, but always correlates with an earache such that if I even touch the aural area in front of the ear, I will feel almost-excruciating pain.  During these episodes, my ear canal also narrows, indicating some kind of inflammation, which I suspect is caused by swelling of the aural lymph node.  These episodes also coincide with a sore throat and a sensation of a swollen node in my throat, along with aches and pains down the side of my neck correlating with other lymph nodes.  Sometimes I can feel them by palpating them with my fingers, sometimes I can't.  I knew my ear canal was swollen and painful when I used to wear my hearing aid as during these episodes it would be very difficult to put in my ear.  Now I can tell simply by inserting a cotton swab in my ear.  Some days there is plenty of room and it's painless, other times I can barely get the swab in there and it's quite painful.

Facial Tingling
I really get weird looks from doctors when I mention this one.  This may, or may not, be related to the Meniere's.  But I get these weird, very brief tingling sensations across one or the other of my cheekbones or across the bridge of my nose.  It feels like a spiderweb or feather brushing the skin and lasts for just a second or two.  It never happens all at once, just in one of the three locations.  I think it's been quite some time since I have felt this one, though, and I don't recall that it would correlate with any other symptoms.

Balance Problems other than Vertigo
In the summers of 2012 and 2013, we took road trips.  After each, trip I developed Mal de Barquement syndrome, with the symptoms lasting about six months!  What that meant for me was that after any time spent driving or in the car, even 5 minutes, I would feel like I was moving for anywhere from 30 minutes to a couple of hours.  At times, driving was very difficult because my eyes couldn't track all the motion around me.  And, as everyone with Meniere's disease knows, we experience a very wide range of vestibular disturbances aside from vertigo.  Some wax and wane and others persist.  I don't think doctors like to bring it up because there's not much to be done about it.  There is vestibular therapy or rehabilitation, but as far as I can tell, it works best for people with a static and permanent loss.  For those of us with fluctuating symptoms, I'm not sure how much vestibular exercises can help to retrain the brain.  Just as soon as our brain adapts to a change, something else gives and we're back to square one.  Many of us also experience a kind of slow nystagmus, or eye darting, another really annoying and distracting symptom.  Fun stuff!

Cognitive Dysfunction and Fatigue
In my experience, doctors and researchers like to pin brain fog and exhaustion on the brain working so hard to keep us balanced.  But I think it's far more complex than that.  I've again come to the conclusion that it is somehow related to some kind of chronic infection and underlying immune response.  I also believe it is complicated by hearing loss and tinnitus.  Despite these symptoms having a huge impact on our quality of life, no one likes to talk about them - maybe because they are poorly understood and there is no known treatment.

I hope this post validates some of the symptoms you've been having , too.  Did I forget anything?  Let me know what weird symptoms you have that no one talks about being related to Meniere's disease.

My Symptoms Pre-Stephen Spring Treatment

To understand how far I've come in the past 11 months on the Stephen Spring Treatment Program, one needs to know where I started.  There were lots of ups and downs in the 4-plus years leading up to my decision to try this treatment.  I had several temporary responses to various treatments, namely intratympanic (IT) dexamethasone, IT gentamicin, antiviral medications, and allergy shots.  With the exception of the gent shots, each of the above treatments gave me no more than three months of relief from the worst of my symptoms.

I thought that when the vertigo stopped after my 3rd gent injection, I was finally home free, at least in my bad ear.  The spinning stopped for well-over a year, maybe two.  But I continued to have frequent and persistent episodes of brain fog, fluctuating tinnitus with a really annoying and loud buzzing sensation, hyperacusis, and of course my hearing was so bad that I finally relented and invested $1800 into a hearing aid (which was a great success in alleviating my hyperacusis and minimizing the tinnitus - and helping my hearing).  Most insidious was the brain-numbing fatigue.  I needed 9-10 hours of sleep most nights.  I would wake up in the morning exhausted and struggle to make it through dinnertime with my family.  Staying awake until 10 pm took Herculean effort, so most nights I was asleep by 8:30 or 9 pm.

A good day still included some noticeable degree of whole-body fatigue and brain exhaustion from struggling to make sense of the sound in my environment.

During this time following that last gent injection, I started allergy shots with the hope that they would help control some or all of the non-vertigo symptoms.  But, again, I had a meaningful response around the 3-month mark in that my energy level improved significantly, as did my brain fog.  But gradually over the next 9-12 months, the positive effect began to wear off and 18-months into allergy treatment I was right back where I started - minus the sinus inflammation and weird tingling sensations in my sinus cavities that I had before treatment.

Then in June, 2013, the vertigo returned!  It was less intense and much shorter in duration, lasting maybe an hour or two instead of the usual eight- to twelve-hour spinfests I had pre-gent, but it was no less life-altering.  I was at the point of having a labyrinthectomy.  I had gone so far as to be evaluated for the surgery.  But I was also experiencing ringing and pressure in my good ear by this time.  I fully understood the risk I would be taking by having a laby in my bad ear in that I couldn't count on my good ear to provide hearing and balance indefinitely.

It was my husband who urged me, really convinced me, to give the Stephen Spring treatment a try for at least six months before electing to have surgery.  Even though I had been communicating regularly with Stephen for nearly two years and was certainly convinced that he was on to something important, I felt guilty and unworthy to some degree, I guess.  I felt guilty that my debility had already been such a burden to my family and then the thought of spending a significant amount of money on me that we could use on so many other things - well, it just didn't seem fair.  There were (are) no guarantees and, of course, the risks are unknown.  That being said, there were already many, many risks and potential financial burdens associated with doing nothing and even with pursuing surgery.  The decision wasn't an easy one since no option was a slamdunk.

But Phil insisted and I had to relent.  Except for the money, and I suppose the fear of the unknown potential side effects of the treatment, I had to agree that I had nothing to lose.  As for the money, I had become so disabled that I could rarely drive and was truly beginning to believe that I was on the way to becoming declared permanently disabled.  I concluded that if the SS treatment worked, then we would come out ahead financially since I'd be able to continue working.  If it didn't work, well then we'd recover from the financial hit.

As for any potential side effects, I had been discussing the general contents of the vaccine with Stephen for a long time, doing my own research, and eventually coming to the conclusion that the risk for short- and long-term side effects is likely to be very small.  I had long ago realized that with Meniere's disease that there are no guarantees in life, so anything I could do to get more good days, the better.  Ultimately, I took my first dose of the vaccine* on September 11, 2013.

I and others have shared the experience of undergoing the Stephen Spring treatment, that it's two steps forward and one step back.  But today I can say with certainty that my ratio of good days to bad days has done a 180-degree turn.  I now have mostly good days, tons of energy, and I've had reversal of my hearing loss.  The latter providing objective data that this treatment has in fact done something for me that no one usually thinks is even possible.  I don't know how long my good fortune will last, but I am eternally grateful for every good day I have in this life!


*For those unfamiliar with Stephen Spring or the treatment he has developed, he is an Australian attorney who himself suffered from Meniere's disease for several years in the early 2000's.  Having failed conventional treatments and watching as life as he knew it was unraveling due to the effects of the disease, he began doing his own research.  He scoured hundreds, if not thousands, of medical and research journal articles, became intimately involved with the Meniere's Disease Research Fund affiliated with the University of Sydney, and eventually began travelling around the world to attend Meniere's disease conferences and to meet with researchers who have dedicated their careers to studying the differing aspects of the potential underlying causes and treatments for Meniere's disease.  Stephen eventually came to the conclusion that, in many cases, Meniere's symptoms are caused by an underlying immune dysfunction as a result of infection.  There is quite a bit of substantiating evidence published in the literature to support this conclusion, however not all of it will be found in Meniere's disease-specific work.  There is also a tremendous amount of money and time being spent by Meniere's experts on the study and use of treatments aimed at symptom management, as opposed to underlying cause and cure.  Hopefully, with time this will change as more evidence becomes available and circulated through the appropriate channels.  

The vaccine Stephen developed to correct the underlying immune dysfunction is a proprietary powder and is part of the overall process of testing and retesting to correct the immune function and identify infection.  This is done in partnership with one's physician and cannot be undertaken without medical supervision.  Stephen's product is manufactured in the United States by an independent laboratory and is approved for use in humans due to its manufacturing classification and delivery method.

The hope is that some day in the not too distant future, doctors and researchers within the conventional medical establishment will invest the necessary time and money needed to study and validate Stephen's conclusions and treatment.  In order for this to be possible, Stephen has applied certain legal protections to his intellectual property.  Due to a legally-binding non-disclosure agreement, I cannot speak in any more detail regarding the contents of the vaccine.