about me & md
My experience with Meniere’s Disease (MD) began in October 2006. It began slowly, as what I thought was an oncoming ear infection in my left ear. Within a few days, I had my first full blown vertigo attack. It came in the middle of the night, and I remember it vividly. The vertigo was so violent and persistent that my wife decided to drive me to the emergency room (my head in a bucket the whole way).
Over the course of the next few weeks, I had two more full blown attacks. They would come on suddenly and for no apparent reason.
By the middle of November 2006, I had seen a few emergency room doctors, had a CAT scan, MRI and some neurological consults performed. The doctors all agreed that everything was normal. I received diagnoses that ranged from being too “stressed out” to having an inner ear infection (that no one was actually able to see any evidence of).
I spent most of November with a feeling of excessive pressure and a roaring in my affected left ear. Towards the end of November, the roaring started settling down and turned to a high-pitched whine. However, at times the roar returned and was so loud that I couldn’t hear anything else with my left ear. By Thanksgiving, I knew that this was something that wasn’t going to go away on its own, as one of the first doctors I saw had suggested.
Thanksgiving dinner was rough in 2006. I feasted at the table like I always do and I paid the price. By the end of the day, my world was spinning once again. It was then that I knew I needed to take more radical action. The doctors I had been seeing weren’t helping, and the attacks seemed to be coming more frequently now.
By early December 2006, I had begun doing a lot of research on the web regarding vertigo. I started in the obvious places like WebMD and the NIH, but there were so many things that could cause vertigo, it quickly became obvious that I had to find a better doctor (or doctors as it turned out). I eventually ended up stumbling upon the Vestibular Disorders Association web page. They provide an online search function for specialists, as well as other educational resources.
By mid-December, the symptoms had become so bad that I started calling in sick at work. I was now dizzy almost all of the time and the roaring came and went in my ear, but the ringing was not going away. I remember sitting on the couch, trying to focus on the TV, and just getting more and more dizzy the more I watched TV. The motion of the fast cuts, wipes and fades on TV were making me feel sick. I remember thinking “what kind of crazy infection is this?”
The week before Christmas, I ended up seeing a neurologist. By then my online research led me to believe that I had many of the symptoms of Meniere’s Disease, but I didn’t want to admit that. I was in denial. The neurologist looked me over, talked about my symptoms, and without doing any further tests, somehow came to the conclusion that I did not have Meniere’s Disease. Boy was I relieved.
Worst Christmas Ever
Christmas Eve rolled around and I enjoyed the night with my family. Before going to bed, my wife and I stuffed the kids stockings with candy. Not being able to resist, I ate a whole roll of “Smarties”. (For those of you not familiar with Smarties, they are basically a 100% sugar candy). Christmas morning, at about 3:30AM, just a few hours after the Smarties binge, I had another full blown attack. It was then that I first made the connection between my diet and my symptoms.
For the most part, my diet was pretty bad. I ate a lot of processed foods. I ate out a lot. I loved salt and added it to everything. And, I had a sweet tooth that wouldn’t quit. I was now 45 years old, and my family doctor had told me that I was overweight and borderline hypertensive. She said that if I didn’t get my blood pressure under control, she was going to recommend medications to control my blood pressure. I didn’t like the sound of that. That was for “old” people.
At the end of December, I went back to the neurologist who told me I didn’t have MD, and talked about my continuing attacks. He ordered another test called an ENG (Electronystagmography). Basically, they lie you flat on a table, put on these goggles and rotate lights in the goggles (all you can see is the light), first in one direction, then the other, all the while blowing a stream of air into your ear. Well, let me tell you, I have never experienced anything more unpleasant than this. It was almost as bad as the vertigo attacks themselves.
The News I Didn’t Want to Hear
Based on the results of the ENG, my neurologist had now changed his diagnosis 180 degrees and had now concluded that I was suffering from Meniere’s Disease. He talked with me and explained that there was nothing he could do to cure the disease, but he believed he could help with the symptoms. He prescribed a diuretic to help lessen the amount of pressure and congestion in the ear, and he gave me a number of drugs to try for the nausea and vomiting.
Meanwhile, I had called my employer and told them that I would need to be out indefinitely until I was able to get to the point where I could function normally again. By the end of December 2006, I had almost completely stopped driving and spent most of my time on the couch in my living room, holding on for dear life while the world spun around me.
New Doctor, New Hope
Not satisfied with (or maybe not wanting to believe) the diagnosis of my neurologist, I had scheduled an appointment for a second opinion with an ENT who specialized in Meniere’s Disease patients. I found this doctor through the Vestibular Disorders website. I met with him, he reviewed all of the results of the previous tests I had taken, and to my dismay he confirmed the diagnosis. However, he offered more hope than my neurologist. Having seen many more MD patients, he had a few more tricks in his bag than did the neurologist.
The first thing he did was put my mind at ease. He was confident that he could get me back to a reasonably normal functioning level through the use of drugs and a device called “The Meniett”. He was honest about the Meniett. He said that it worked for some patients and not for others, and that because it was still considered experimental, it would not be covered by insurance companies. He also said that he’d had success with calming the auditory nerve by administering Klonopin. Klonopin is used as a tranquilizer / anti-seizure drug.
I started taking the Klonopin the same day, and I began to notice positive results almost immediately. It did make me a little drowsy, but I could still function while taking it. In the beginning I was taking Klonopin in the morning and at night before bed. I quickly learned that it helped me sleep better than I had in a long time.
But I was still looking to get back to normal, so I decided to purchase the Meniett device. It was expensive. $3,500 at the time I purchased it.
I used the Meniett 3-4 times a day, and in the beginning it seemed to be offering me relief from the feeling of congestion and fullness in the ear. But by this time, I was also taking the diuretic and the Klonopin, so it’s hard to say how much of the benefit came from which of the remedies.
It was now the middle of January, and just as the new ENT had promised, I was feeling well enough to return to work. I still felt a little unsteady and unsure of what to expect (you always have the fear that you will have an attack at work and embarrass yourself in front of your co-workers). But I was able to drive again, and so I went back to work.
My Last Attack (so far)
Fast forward to February 1st, 2007. My wife and I got take-out from a fast-food mexican restaurant. I had a Buffalo chicken sandwich (loaded with salt), fries with extra salt and for dessert I ate chocolate pudding. I was drowning in salt and sugar! That night, early in the morning of February 2nd, 2007, I had my last attack (to date).
It was now extremely obvious to me that the meds and Meniett alone were not going to allow me to continue my poor eating habits and to peacefully coexist with my Meniere’s Disease. I woke up on the morning of February 2nd, and decided to make a change that would alter my life forever and for the better.
A New Approach to Eating
It was now obvious to me that I needed to change my diet drastically. I had read all the online info about limiting salt and sugar intake, and I thought I was doing that (somewhat), but I was only considering added salt and sugar. I wasn’t accounting for salt and sugar already in the processed foods I was eating. That’s when I began reading food labels.
I decided to try and limit my sodium intake to between 500 – 750 mg per day, and sugar intake to no more than 50 grams per day. I quickly learned that this was extremely hard to do. However, I persevered (along with the help of my wife and family who had to make special accommodations for my new diet). I quickly learned that in order to meet the goals I had set for myself, I had to give up almost all processed foods, fast foods and even had to avoid some unprocessed foods that were naturally high in salt or sugar.
Within a few days on this new diet, I began to notice that I was feeling better. There was even less pressure and fullness in my ear, the tinnitus was moderating and I started to lose some weight.
I stayed with this diet in a painfully strict way for the next six months. (It’s hard giving up a way of life that took you 45 years to learn). At the end of the six months, however, I had lost almost 65 pounds, was feeling much, much better and even my blood pressure came down to normal levels. It was then that I decided to try and stop using the Meniett. While early on in my diagnosis it seemed to be helping, at this point, the new diet seemed to be helping even more. I believe the diet made the Meniett unnecessary in my case.
As I write this, I’ve been on this diet for over four years now. I’ve learned to like it and I definitely like the health benefits from it. I can’t guarantee that I’ll never have another attack, but I think 4+ years is cause for optimism. I have even recently stopped taking the diuretic because my doctor said my blood pressure was too low. I was reticent about stopping the diuretic because I was doing so well, but I gave it a try. That was about six months ago, and I have not noticed any negative effects from it’s discontinuation to date.
I can’t say for sure that my diet is the most important tool in fighting my Meniere’s Disease (I still take Klonopin), but I can attest to the other health benefits I’ve derived from the diet. Lower body weight, lower blood pressure, more energy and a pride in knowing that I’m eating healthy have caused me to want to continue this diet indefinitely.
Want to know more?
To learn more about my diet, check out the diet link. However, before you begin this diet (or any diet) be sure to check with your doctor.