My Battle with Meniere's Disease
BEFORE WE START
I have found that listening to people talk about health issues is hard if you don't have them. I see eyes glaze over when I start talking about diet, wellness, and natural healing unless I'm talking to someone who has been through similar experiences. This is, however, a story I need to tell and will attempt to do so in bite-size chucks as to not overwhelm you.
First, a disclaimer:
I am not a medical professional. Listen to the experiences of others, but never make decisions without talking to someone who has studied and has experience with whatever you might deal with. This is my experience and opinions and should be taken that way. I will source all that I can.
Ok..here we go.
I was 31 when I was told I had a disease. No matter what age you are when you hear something like that, it's shocking. It's not typically something you think you're going to deal with in your thirties. Four years later, I'm still not sure I've fully processed everything that it entails.
Part of my journey as a father is dealing with chronic illness and the social and psychological fallouts. I dislike the term "chronic" and actually never use it, but by definition it's what I have. The term has just not been useful to me in creating a narrative for myself around the challenges I face.
A little background...
In 2013, I was diagnosed with Meniere's Disease. For those who are unfamiliar, Meniere's disease is a disorder of the inner ear. The simple explanation is that there is an abnormal amount of fluid in part of the ear that messes you all up. The symptoms include:
Roaring sound in your ears called tinnitus
Hearing loss that comes and goes
The feeling of ear pressure or pain (it usually affects just one ear)
Hearing loss (I'm currently operating without any hearing in my right ear)
The National Institute on Deafness and Other Communication Disorders estimates that 615,000 people in the United States have Meniere's. So a lot of people have it, but not enough to make headlines. You probably wouldn't know about it unless you knew someone directly impacted by the condition. Well ... now you do! I should also mention that there is no cure. There is also no known cause (only a handful of speculations).
It started out as light ringing, which gradually grew towards frequent dizzy spells. The spells worsened until I was having episodes that were actually putting me in danger. In the fall of 2014 while on a family trip to Disneyland, my wife came back to the hotel to find me passed out in my own vomit. I know ... gross ... but that's how bad these episodes are. Scared the shit out of us.
It started to impact my whole world. I could barley be alone with my son due to the severity of the episodes. Family, job, social life, everything was more difficult. People who deal with chronic illness face psychological challenges well. For me, it was the anxiety of never knowing when an episode would begin. Driving, playing with Rhodes, or at work—it could happen anywhere and I was always on edge. Physical. Psychological. It was all chaos. It's important to know that the people in your life who deal with chronic illness or pain also face psychological obstacles as well. Sickness can trigger things like depression, anxiety, or bring to the surface a number of personality disorders. Historically a pretty easy-going person, I now have to manage my anxiety on a daily basis, even when feeling physically healthy.
I found myself in the ER several times. I got brain scans, talked to my doctor regularly, and saw specialists, audiologists, etc. I joined support groups, read books and even talked to others with the condition. Everyone had different outlooks, but the most bleak typically came from traditional medical professionals. It usually went something like this...
"Welp, you have Meniere's Disease. There are a few things we can do to help with the symptoms…"
This was typically the sentiment followed by prescription drugs. I took them. Everything from heavy versions of Dramamine to Prednisone. Nothing worked and, in fact, the side affects of the drugs made it worse. It just didn't satisfy and I was miserable. I'm only 31 for goodness sake! This can't be the whole story, can it? We knew we had to start digging deeper and finding people who are talking about preventative care and healing.
One of our closest friends and co-conspirators in life is Janna Maron. When it comes to seeking out trusted opinions, Janna is WAY up there. We share very common experiences in our upbringing, education, and religious backgrounds. We are kindred spirits (if such a thing exists).
Six years ago, Janna was diagnosed with multiple sclerosis. It was a really hard season and we watched as she struggled through a variety of treatments, searching for answers and hope that her best years were still ahead of her. Like me, she found that the medications being prescribed were not producing the results she desired, nor allowing her to pursue her best life. Being a fighter, she sought solutions outside of big pharma and prescribed medicine.
Janna introduced me to the work of Ann Boroch, a nutritional consultant and naturopath who healed herself of multiple sclerosis and has been symptom free for 23 years. Her work is centered around the body's ability to heal itself and, in particular, the "silent epidemic" of candida (you can find out more about her here). For Janna, to pursue this path meant a radical overhaul of her diet, which if you have ever made this attempt, is no small feat. It's been six years since she made the change and I've been in awe of her discipline, tenacity to learn, and honesty about her experience.
In our hour of desperation, we began to wonder if some of changes she made might also work for Meniere's Disease. At that point, we had nothing to lose and I asked Janna to walk me through the process.
I won't lie, it was overwhelming. It felt like everything I loved about food was being taken away. To give you a glimpse into the initial 90-day cleanse:
Yep. No coffee, folks.
We decided to take the plunge and Samantha joined me for the initial three months of the diet overhaul. The first weeks were BRUTAL. You don’t realize how much food impacts every aspect of your life. It changed when we went out to eat, where we could go – which then impacts your social life. Eating particular foods also changes where you shop and, in my case, is more expensive. So there are financial implications as well. We had to plan very meal and snack. We were making multiple meals every night so that we would have leftovers ready for the next few days. It was a major shift for us.
I was like a drug addict on detox. Like that scene from Trainspotting with the creepy baby, except Samantha had to endure my whining (she was amazing, by the way).
The greatest change to my life though?
Changing my diet has made all the difference in the world when it comes to managing Meniere’s Disease. A low sodium, dairy free diet is central and we have adopted all sorts of alternatives to sugar, caffeine, and remain gluten free (for the most part). I’m nowhere perfect when it comes to sticking to it a hundred percent of the time, but I’m so grateful for the work that Ann Boroch accomplished and Janna was able to experience and share with me.
These days we are the house on the street that hands out gluten-free vegetable chips on Halloween. I kid you not, we are those people. We aren’t perfect, but I’m proud of the changes we’ve made and how they are shaping a better family
In addition to battling the Meniere’s with dietary changes, I also found Desiree Crusade, an upper-cervical chiropractor who uses a technique called the “Palmer Method.” While the diet was helping, I knew there was more my body needed if I was going to be in this for the long haul. Chiropractic work would have never crossed my mind had it not been for a random connection my mom had made with a physical therapist who mentioned people who suffer from vertigo find healing with chiropractors.
I will never forget my first conversation with Desiree. She was the first professional we made direct contact with that infused hope into our hearts. I was in tears as she helped make all sorts of connections to trauma my body has endured from football concussions in high school to car accidents I had completely forgotten about.
My regular visits to Desiree have changed my body and the combination of alignment and dietary discipline are keeping me in the game.
WHERE I’M AT TODAY
My last episodes were in early Fall of 2016. I had gotten back into some old habits and paid the price. Since beginning to see Desiree and returning to the diet I’ve been episode free for a little over a year. I’ve suffered major hearing loss in my right ear and looking to remedy that soon, but I will take that over the episodes any day.
It’s still a mystery as to how any of this was brought on. I’m not sure if I’ll ever know and that’s a little frustrating – but I’m so grateful for those in my life who have supported me and my family through this process. Having an illness that’s invisible is hard to get people to understand, especially when a lot of the time you are high functioning.
People can’t see that I can’t hear well.
They don’t know the anxiety of chronic illness.
They don’t understand the exhaustion.
I look at my kids and I want nothing more than to be around for as long as I can and to experience each and every moment of their lives. In that sense, all this work is well worth it. Hundreds of thousands of people deal with Meniere’s Disease, yet it is still little-known. While celebrities like Ryan Adams and Kristin Chenoweth (who both have Meniere’s) help bring awareness to the cause, it’s not enough for the kind of clout that is needed for extensive research for a cure.
My personal commitment is to continue to talk about it here on the blog and do my part in bringing vestibular issues to light.
Lastly, I want to take a moment to honor Ann Boroch, who passed away earlier in the year. Her work has impacted our lives and we are forever grateful for the contributions she made to the world. She will be missed by many.
Rest in peace, sister.