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Before clicking on this post, I am pretty confident that most of you had never heard of Meniere's Disease. Until I was diagnosed, I actually hadn't either. But I quickly learned. Below is the story of my journey.
I hope my story allows information about this very difficult disease to get out into the public arena, so a cure can be found.
From Vertigo to Meniere's Diease
It was Sunday, October 7th at about 6 AM. In my sleep I felt my head spinning. Figuring I was just dehydrated, I got myself down to the kitchen to grab a cup of water. But I ended up having to get myself to the couch, where I lay for a little bit until I fell back to sleep. I told my husband about this weirdness, figuring it was just an ear thing. We had just returned from an amazing trip to Israel for my son's Bar Mitzvah the previous week, and I was thinking -- ok an ear infection from the plane -- not what I need right now after being out of work for three weeks, but manageable.
Back to Work
Monday, I went back to work, and about two stops before my stop on the subway, everything started going in fast forward motion, like a cartoon booklet. Managing to pull myself off of the subway at Fulton Street, hanging on to a pole, while someone played a saxaphone nearby, I realized that I had a problem. Thinking to myself, no worries -- Urgent Care is up the block. I'll make it there somehow and they will give me something for this ear infection and all will be good!
I did make it to a nearby urgent care and they figured it was vertigo of some sort and maybe related to my recent flying. Vertigo was not something I had ever experienced before. I think I have had a single ear infection in my entire life. I have never had an issue with my ears when flying. Vertigo was the easiest thing to believe, so I went with it. They gave me some medication which put me to sleep. I worked from home for the next few days until I was back to myself.
Is it Really Just Vertigo?
I decided to go to an ENT just to double-check what the Urgent Care place had told me. After examining me, he told me he saw nothing wrong with my ears and no sign of an ear infection. They did a hearing test and he suggested an MRI to rule anything else out. Well, that totally freaked me out, what exactly were we ruling out? Nothing like worrying about a Multiple Sclerosis diagnosis...! In the end, my MRI came back normal. Based on my hearing test, he diagnosed me with Meniere's Disease -- telling me I had a "Classic Case" of Meniere's Disease. I had hearing loss in my left ear, and that had to be watched. He told me the following:
You must go on a low sodium diet. No more caffeine. You must not bend down and you must not do any housework for at least six weeks. You must not move your head from side to side. Oh, and you can Google it to find out more. Thankfully, my husband was sitting there with me, and he heard that I couldn't do anything for the next six weeks. I was relieved! It was only Meniere's Disease -- no brain tumor! no Multiple Sclerosis! I couldn't do housework for 6 weeks! I could eat low sodium (whatever that meant)...so I had some hearing loss. Who doesn't lose hearing from a loud concert or two? I would drink decaf coffee. This would all be OK, I thought.
Google is Your Friend
Googling, I found that some of the symptoms of Meniere's Disease in addition to vertigo, are anxiety, blurry vision, nausea or diarrhea, trembling, cold sweat and rapid pulse. Attacks are as brief as 20 minutes or last as long as 24 hours. You might get several in a week, or they might come months or even years apart. Afterward, you may feel tired and need to rest.
Ok, manageable I thought. I only had some slight vertigo. This will be fine, I thought. I began looking at what a low sodium diet meant. Ok, I'll cut out Chinese, MSG, and Onion Soup Mix. I can do this.
Reality Bites
Fast forward to Thursday November 8th. I was getting dressed to go to an event at my daughter's school in the evening, when all of sudden I couldn't walk a straight line. I couldn't stand up straight, and then proceeded to be violently ill for the next two hours.
"Trembling," "nausea," "cold sweat," and "rapid pulse" would be one way to describe it. A more accurate description would be the worst two hours of my life. Death at that moment didn't seem like a bad option. I couldn't move my head even a centimeter without everything spinning. I lay curled up in a ball on my bed in the dark -- while trying to get to the bathroom in between. My husband was calling the doctor asking if I needed to come to the Emergency Room. The doctor said I only needed to go to the emergency room if I dehydrated. That was funny. I survived. My daughter got a ride home from her event, and understood that I couldn't be there, missing a school event for the first time. She was 17, and she survived. We all did.
Google is Not Always Your Friend
But I went and re-googled Meniere's Disease and started reading up on people's real life experiences with this disease. What I found was pretty scary. It ran the gamut -- from people having attacks weekly, daily, or once every ten years. The attacks were brutal, rendering people completely dysfunctional for days or weeks at a time. People scared to leave their houses for fear of an attack. Oh, and no cure...and nothing to do except for a low sodium diet.
I won't bore you with the other attacks that I had in public places and that my husband had to come and save me. I went to several specialists, and the answers were always the same. A low sodium diet is the only proven answer that we have. So that is how I got here.
Where Do We Go From Here?
I tell this story not to scare, but to inform. Meniere's Disease is a chronic illness that most people have never heard of. Funding and "special months" are not designated to learn about the mysteries of Meniere's Disease. No one is running a race on my behalf in some far away state or country to raise money for research. Yet there are 615,000 people in the United States suffering with this life altering chronic disease. 45,500 new cases are diagnosed each year.
Most do not understand that when you have a Meniere's attack, you are rendered completely and utterly dysfunctional for days or weeks at a time. You cannot work, you cannot drive, you cannot get out of bed, or be far away from the bathroom. Driving your kids to school is something you wish you could do, but instead you are relying on others for favors for everything.
The worst part is that you have absolutely no idea when an attack will hit. So you can't plan a single event in your life without wondering when the next big attack will come, and where you will be. It is the most emotionally and physically debilitating challenge I have ever had. And of course the worst part is that there is no end in sight. (I forgot to mention the sheer terror that I would lose my hearing completely.)
Sit on the Sidelines or Take Action?
I spent many weeks depressed and thinking that I would spend the next fifty years of my life staring at my bedroom walls trying not to move my head, being afraid to go out, while the world went on around me.
Once I started to feel better, I decided to take action and do whatever I could to make sure I spent my life NOT staring at my bedroom walls. If a low sodium diet was the only proven possibility, then that is what I would do. And I would do it well.
And so my kosher low sodium journey began in earnest.
The KosherLoSo Journey
I have spent the better part of the last 18 months searching for ways to lower my sodium, while still making healthy and tasty meals for my family of 6. I do it because of my Meniere's Disease diagnosis. You might need to do it for other reasons.
One of the biggest hurdles I found was trying to keep to a Low Sodium diet, while keeping kosher. I am hoping to share the knowledge I have learned with others so that we can all feel better physically and emotionally, while easily keeping kosher.
Inform Yourself
I encourage you to learn more about Meniere's Disease:
Let's Do This!!