I’ve had Meniere’s Syndrome for more than 30 years and I’ve learned to live with it because I had no choice. I call it my Dizzies. My family knows about it well; they too live with my Meniere’s. I won’t die from it but I will die with it.
What Meniere’s Syndrome is to me:
I began having disquieting vertigo in the 1980s which sent me to my doctors at Group Health (now Kaiser Permanente) who diagnosed it soon enough. For unknown reasons my left inner ear canal had become extra sensitive to its liquid filling, they said, and the reaction of the canal’s cilia to the pressure caused my vertigo, or dizziness, and lack of balance. (Meniere’s causes loss of hearing and so I’m half deaf in my left ear.) In order to be well I needed to reduce the pressure inside my inner ear. What I had to do:
In order to lower the pressure I had to reduce my salt intake dramatically or undergo what I considered dubious surgery. Salt or sodium helps retain water or liquid therefore increases the pressure. In reducing my salt, or sodium intake (salt is mostly sodium chloride), the doctors told me to aim at consuming no more than 1500 milligrams of sodium per day. Just to give me an idea, they informed me that one teaspoon of salt contains 2,325 mgs of sodium and one piece of bacon contains about 900 mgs. The doctors also prescribed a water pill a day, minimum, because it would make me pee more than usual, thus reducing the liquid pressure in my body including my inner ear.
It took me a long time to discover how to keep my sodium intake at less than 1500 milligrams, and the doctors didn’t help me with the details. I had to learn on my own. I caught on after lots of dizzy episodes that usually turned into bouts of nausea and vomiting, in addition to the consequent loss of energy. It also took me a long time to begin to learn the rhythm that my body had to go through in these episodes: the dizziness, then the nausea followed by intense vomiting, then wanting to sleep, then the slow repair of my body accompanied by extremely carefully eating. Each episode included these stages. I call it “falling off the cliff.” In my case, each episode took about four to 5 days to take its full course.
Where sodium resides:
Slowly and painfully, I learned about sodium, and where it resides. I made enough lists and notes that I can tell you approximately how much sodium naturally resides in fish or meat, etc., without having to look it up. A lot of food contains sodium even before you cook it or season it. Most bottled or canned ingredients already contain sodium, and beware of baking powder and baking soda! Furthermore, sea salt is salt, pink salt is salt. Any kind of salt is salt; not for me. I use substitute salt, a very important dietary aid. It is made of potassium chloride and I understand that overdoses or under doses can send you to the hospital. In my case, my water pill expels potassium so whatever salt substitute I add manually evens things out. I medically check my sodium and potassium twice a year.
For me, at least, limiting my sodium intake and taking a water pill a day has helped me stay on an even keel. If I take these measures, steadily, I can control my normality. I walk, I jog, I ride my bike, get on the roof if necessary, and so on.
How I adjusted my eating habits:
I learned soon enough that the safest eating for me was at home, and since I had already learned to cook, I took over the kitchen with greater intent.
However, I’m not a hermit. I may be retired, but I do have to go out every so often, and that means I have to eat out. In fact, I like to eat out, and that’s where the risks begin.
So, I learned to eat out with great care. I became more aware than ever about how restaurants in the U.S. prepare their food; that most do not prepare their fare from scratch; it comes into their kitchens through the back door, semi-prepared and duly salted already. Almost all franchise operations do this, from McDonalds and Burger Kings and IHOPs to Red Robins, Red Lobsters, Applebee’s, and Denny’s. I began making mental lists of eateries that can cook from scratch; they are usually more expensive, but they also serve better food. These non-franchise eateries don’t have crowds of waiting patrons, and their kitchens are more liable to respond to my requests.
I also discovered that chefs don’t always listen to their waiters or waitresses. You can tell your server, “no salt,” or “take it easy on the salt,” but cooks may dismiss his/her words. Often they’re too rushed. Sometimes they know nothing about what constitutes low sodium meals. Or, they can do little about it, especially if it’s a franchise kind of place.
I was raised on Mexican food but I learned to stay away from it when eating out, because they, and most ethnic restaurants, prepare almost everything ahead. No cooking from scratch there. Asian eateries rely on bottled or canned ingredients to add to their sauces (fish, shellfish, oyster, soy), and these are already teeming with sodium. I “paid” a lot to learn this. As much as I would enjoy Asian food, I stay away. I love food with distinctive seasoning, so you can imagine how hard it has been for me. Thank goodness, Indian fare relies on super complex herbs and spices which seem to require less salt, so I’m more willing to risk it there, from time to time (I love curries).
I travelled in the past and continue to do so, and so I’m known to travel with a “kitchen bag.” It contains a pot or two, a hot plate, extension cords, a knife, and a couple of dishware items. The idea is to allow me to cook if necessary. I’ve traveled with my kitchen bag in Europe, Asia, and Latin America. My usual eating plan when traveling is to try to eat out once a day, in order to taste the local stuff, and eat in safely as much as I can, in my hotel room, if necessary. This way I avoid gobbling a seasoned dish because I’m ravenous. Thank goodness, most restaurants outside of the United States still cook from scratch! Also, I drink wine with my food and so I am thankful it is free of sodium.
Listening to my body:
I have also learned to heed my own body signals. This may not apply to you, but I’m convinced I can tell when the sodium level in my body is getting high. People with Menieres usually have tinnitus: ringing, hissing, or buzzing. I get a hiss and I’ve learned to detect its differing levels. Louder or stronger means I’ve consumed too much sodium. I usually get a “spike” about 2-3 hours after a meal especially if I’ve eaten fish or meat. If my sodium level was low before eating, the spike will dissipate overnight. When I’ve been a bad boy, I’ll also see flashes inside my eyelids when I squint, in addition to the high hiss. If that happens, I know I’m in trouble, and am likely to get dizzy and expect the rhythm mentioned above sooner or later. My body doesn’t forgive; it’s like a machine set into motion and it doesn’t stop until it is finished. Regarding my body signals, when I share them with doctors they look at my quizzically.
I’m also convinced that when I travel to sunny and warm climates (I live in Seattle) my in-the-body sodium level makes adjustments. I hypothesize that in warm or hot climates I perspire, more than in Seattle, expelling sodium along with other body wastes. So, my balancing act (having too much or too little sodium) shifts. When I return to cool, or cold Seattle, I usually “fall off the cliff,” to some extent, because I’m out of balance. The “fall” is sometimes hard, sometimes not so hard. My doctors don’t appreciate my sunny climate hypothesis either.
Is there a silver lining?
Is there any good in any of this, I ask myself from time to time? Maladies are always comparable. Who is worse off than I am, I ask? You may not believe it, but at my age, I feel fortunate to be in good health, except for my Meniere’s and my Psoriasis (let’s not go there!). Still, is there a silver lining in the dreadful details above?
I think so. My Meniere’s diet keeps me disciplined. I really have no choice, because if I go off balance I pay dearly with 4 or 5 miserable days. So, I stay in line. Moreover, my food discipline, as outlined above, forces me to eat intelligently and healthily. And, vegetable-based food is relatively free of sodium, as are fruit, nuts and grains. And, this is what health gurus preach today, hence I’m already doing it! So, there you are! I’m eating according to the gurus and I’m not a guru guy. Eating this way might help me live longer, anyway (and enjoy my wine longer too!)
I’m aware that not everyone with Meniere’s goes through what I’ve gone through (and getting dizzy does not necessarily mean you have Meniere’s!). It’s worse for some, not so bad for others. And, I must confess, I haven’t seen my Meniere’s doctor in a long time because all he/she does is measure my hearing loss, so I stopped going. Also, there may be new findings about Meniere’s. I need to find out. In the meantime, I’ll follow my regime described above.
If you have some degree of Meniere’s I hope you can appreciate my experience. I can live with it and perhaps you might too.