Joe and Meniere’s Disease
~ Updated fall of 2013 ~
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, as I am not your doctor : ) 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. I continue with daily doses of l-lysine, vitamin C & natural anti-fungals. I will not hesitate to hit the prescription anti-fungals again if symptoms return. 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.
2. Get blood work done, especially food allergy, candida & herpes virus testing. 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. Stop poisoning your delicate inner ear! 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. Hydrate! the 1st treatment for Meniere’s in Asia is water therapy, 64oz/day. This has been extremely successful!
6. Postpone 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.
7. Finally, be patient. It can takes weeks or even months for any treatments to begin working. I do not recommend trying multiple treatments at once… how would know which one might be working?
Also, there is a great forum for Meniere’s with an awesome starting point HERE. Check it out, that’s where I put together my treatment plans : )
Feel free to contact me with your story or if you have any questions regarding my experience. Due to the overwhelming amount of emails I get, I likely will not respond if you ask questions that are addressed above, so please read, perhaps twice? : )
And yes, currently as of Fall 2013 I am doing well & still symptom free, other than occasional morning bouts of tinnitus….
Wishing you a speedy recovery, Joe