~ Updated fall of 2015 ~
This is “my Meniere’s story”. It is not intended to proclaim a “cure” for this ailment. I am not suggesting that anyone do as I have done. It is simply my path to relief & returning to a fulfilling life. Now… please read, share & enjoy!
This is “my Meniere’s story”. It is not intended to proclaim a “cure” for this ailment. I am not suggesting that anyone do as I have done. It is simply my path to relief & returning to a fulfilling life. Now… please read, share & enjoy!
In April of 2005 I started to experience a building “fullness” and
low frequency hearing loss in my left ear. Having had numerous ear
infections in that ear throughout my life and a perforated ear drum on
that side, I passed this off as an ‘atypical’ infection. My doctor
phoned me a script for antibiotics, which had no effect. After two weeks
of these building symptoms I grew frustrated. One night at dinner I
heard a screeching sound in my left ear and felt the pressure subside. I
thought “great, my ear popped… weird, but back to normal!”. Five
minutes later I was on floor with insane vertigo that seriously cannot
be described. After hours of vomiting and a trip to the ER, my symptoms
subsided and the ER suggested I visit an ENT. A few weeks later the
pressure began building again and what my doctor had suspected was
confirmed… a diagnosis of Meniere’s disease.
This cycle became a part of my life, starting over every 4-6 weeks.
My ENT sent me to a neurotologist who told me that I would likely be
deaf in the infected ear within 3 years and my only options were radical
surgeries or steroid injections into the inner ear, both of which would
not cure my condition and would have serious risks involved, including
accelerated and permanent hearing loss. As a musician and audio
engineer, my hearing could not be risked, so these treatments were not
options. At that moment I absolutely refused to buy into the doomsday
prognosis. I felt as though there was something in my ear that my system
was trying to flush out. I tried many treatments, some had short-termed
relief but nothing kept the intruder at bay. I remained as positive as I
possibly could. I did tons of research on Meniere’s, which can be a
frightening internet adventure in itself. I managed to focus on the very
few success stories I could find while staying away from my doctors. I
visited several naturopaths & chiropractors who taught me much about
general health, though none could help my symptoms. I tried many
supplement regimens, again getting some short termed relief, but nothing
sustained. In 2008 I tried an anti-viral approach of natural
supplements known as the “John of Ohio regimen”. I went almost 5 months
without symptoms, only to have them inexplicably return, and with a
vengeance. I stayed on it hoping for relief, but after another 6 months,
I “gave up” on the regimen, though remained intrigued with the viral
approach.
I started looking at parallels in my life, trying to find anything
that might have triggered this, directly or indirectly. The only things I
could come up with is that I started an affinity for wine, primarily
white (Chardonnay) about 4 months before the symptoms started, and I had
increased stress with growing responsibilities as a restaurant manager.
I had also gone through a divorce about 6 months before the onset. It
seemed like stress had to be playing a big role, though I didn’t feel as
though it was “the cause”. I felt like stress was weakening me and
allowing these symptoms to take further toll.
Meniere’s was greatly affecting my life. It became difficult to play
piano as the sound of it actually hurt. I had developed “hyper-accusis”,
extreme sensitivity to louder sounds which cause physical pain and
terribly distorted hearing. Music became unpleasant, imagine that… I
resorted to playing my digital piano at very low volume levels much of
the time. Often I could only hear through one ear, a terrible
distraction. I managed to continue composing and my music spread to
reach many people and my sales grew. I wrote much of the music to Somewhere Within and all of the music to Mesmerized
in this time, chronicling my journey within during these challenges. It
also became ironic to me that the closer I came to feeling as though my
music may get me out of the stressful restaurant career, the more I
feared losing my hearing, which threatened my dream of being a musician.
This was a very confusing place to be.
In June of 2010 I jumped off a cliff and quit my 24 year restaurant
career having spent the last 10 years as the manager of a very
successful Italian restaurant in Seattle. Some people thought I was
crazy, some said I was their hero. I had gotten myself out of debt, put a
nice chunk of money in the bank, and felt I had to give it a try. I
didn’t want to look back in 20 years and wonder what might have been had
I given it a shot. I also started a new antiviral treatment a few
months earlier. The cyclical cycle of my symptoms still screamed
“intruder” to me. I took prescription anti-virals (800mg acyclovir) ,
l-lysine (3g/day) & vitamin C (3/gday). My symptoms noticeably
subsided for about 3 months, then crept back. I stayed with the program I
had come up with. My stress level was drastically reduced and my first
post-restaurant attack wasn’t as severe or as long as usual. About 4
months later I had more symptoms. I was clearly making progress slowing
down the typical 4-6 week cycle. In Jan of 2011 I decided to take a
round of prescription anti-fungal medicine (200mg fluconozol/day) after
doing research on candida/yeast infections. I started it at the onset of
symptoms. After 4 days I felt improvement… the typical build up of
symptoms usually last 10-17 days. My 7 day script ran out & a the
subsiding symptoms started creeping back within three days. This was
encouraging in the fact that I was breaking the pattern. I then took a
14 day dose of anti-fungals & the symptoms left after day 4. Hmmm….
Getting somewhere? I remained positive without getting over excited. I
was still sticking with my anti-viral regimen as well. About 5 months
went by with no symptoms. My hearing began returning to normal. Much of
what I thought was permanent hearing loss had come back. The screaming
tinnitus I had grown accustomed to almost all the time started
dissipating, sometimes disappearing completely for days. It came and
went.
When symptoms started to creep back in July of 2011, I immediately
hit the anti-fungals at the onset, a 14 day regimen. The symptoms never
got intense and were gone in just a few days. This prompted me to start
looking at natural approaches to yeast/candida control to prevent the
fungal infections (not wild about prolonged/repeated prescription meds)
and I got on a natural regimen, mainly of probiotics (20-40 billion/day)
and a garlic supplement before each meal. I also stopped drinking white
wine & soda (high in sugar). I lowered my sugar in-take in general,
which wasn’t particularly high, but I watched it closely. My studies
also showed me a connection between mold allergies and fungal
infections. My allergy testing showed that I was allergic to mold. Food
allergy testing showed an aversion to cheese (has mold) but not all
dairy. I was also highly sensitive to milk whey protein. Gone was dairy
from my diet! To this day I have not had another episode. I still have
some bouts with tinnitus, but never sustained, usually just a few hours
once or twice a week in the morning. My maintenance regimen includes
daily doses of probiotics, garlic, lemon bioflavanoids, vinpocetine,
vitamin E, B12 and pycnogenol (proven to increase circulation to inner
ear). I will not hesitate to hit the prescription anti-fungals again if
symptoms return, though I haven’t had to in almost 3 years. I have
noticed that after taking anti-biotics, my symptoms increase, showing a
very clear connection to a fungal infection. Anti-biotics deplete your
intestine of candida fighting bacteria.
In conclusion, I clearly had a fungal infection of the inner ear. I
always felt like my body was trying to flush something out & I found
it! I also believe that stress played a huge roll in my case, it was
compromising my immune system. I never accepted the words “chronic”,
“idiopathic” or “deafness”. I took this battle as a challenge, one of
life’s many …. A chance for me to tune in to my body and find out what
it’s trying to tell me. I listened to me, not to those who told me to
accept it & those who said I was doomed to be deaf. I hope this
inspires you to take the same approach with any of your life’s health
challenges. You can accomplish anything within your body, just listen
and be patient…it took me six years. Tune in and connect. It’s trying to
tell you something, see yourself as healed. Envision your life back to
normal, never settle for anything less!
My advice to anyone with this affliction:
1. Find a naturopathic physician in your area. They will help you focus on all facets of balancing your health. They primarily seek the “cause” of issues, not just symptom treatment, suppression.
1. Find a naturopathic physician in your area. They will help you focus on all facets of balancing your health. They primarily seek the “cause” of issues, not just symptom treatment, suppression.
2. Get blood work done, especially food allergy, candida, herpes virus testing and vitamin deficiencies such as B12 & D. Eliminate from your life as many foods as you can that you are reactive to. A simple blood test for Candida overgrowth can determine if you may have fungal infection issues. Get tested for herpes virus. You may have and never know it. Many people have found relief suppressing this virus (which can embed itself in the nerves of the inner ear) with prescription anti-virals, L-Lysine & vitamin C.
3. Take a look at these products & medications that are known “oto-toxins”. When you take any prescription drug, read the fine print in the little handout that comes with it. If it says it may cause tinnitus or ringing, think twice… Also, keep Q-tips out of your ear canal. While you do get “some” cleaning done, it’s impossible not to push ear wax up to or closer to the ear drum. My ENT once took a picture of the wax piled up against my ear drum, I was sold at that point. My symptoms always seemed to worsen the day after I swabbed my canals. I now go to my ENT twice/year for a thorough, professional ear canal clean out.
4. Stay active and exercise. As hard as this may be at times, you need strength to fight and your metabolism needs to be up.
5. The 1st treatment for Meniere’s in Asia is water therapy, drinking 64oz/day. This has shown proven results!
6. Do some research on the use of Pycnogenol. It is a natural supplement that has just recently been discovered to increase circulation to the inner ear and has provided great relief for many. It has noticeably helped reduce the residual tinnitus I have left over from the damaging affects on Meniere’s.
7. TMJ is a known cause of Meniere’s. If you having clicking/popping of your jaw or you grind your teeth, the inflammation in your jaw joint can cause enough pressure to throw things off in your inner ear. TMJ is very treatable!
8. Hold off on any ear surgery/steroid injections as long as you can. Try alternative treatments before risking devastating damage to your ear. None of the “conventional” treatments actually address the cause of the issue. They only address the symptoms, and just temporarily.
9. Join this forum on-line HERE. Check it out, that’s where I put together my treatment plans : )
10. Finally, be patient. It can takes weeks or even months for any treatments to begin showing progress. Don’t give up, there’s light at the end of the tunnel!
And yes, currently as of Fall of 2015 I am doing well & still
mostly symptom free, other than occasional morning bouts of light
pressure and tinnitus….Wishing you a speedy recovery, Joe
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