Let's Talk About Meniere's Disease (Pt. 1)
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:
- Severe vertigo
- 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.
Stay tuned for Part 2 later this week...