(UPDATED AND EXPANDED FOR 2016)
Living with Meniere’s disease is not easy.
When the symptoms are at their worst, it’s debilitating. But even if you can get the vertigo under control, you still have to contend with the Tinnitus, brain fog, fatigue, and hearing loss.
And through it all, there’s the fear. When so much can go wrong at any moment, it’s impossible to avoid feeling anxious. I know how hard it can be.
But I also know that there is a path through the challenges ahead. You do not have to resign in defeat. The way forward is one of action, learning, and growth.
After years of trial and error, suffering and pain, I was able to improve my Meniere’s symptoms and rebuild the life I thought I left behind.
This post is an overview of the strategies and lifestyle changes that got me back on my feet.
As you set out on your journey I want you to know that there is so much hope and you are not alone. Meniere’s disease will not define you.
Find the Right Doctor:
Finding the right doctor is one of the most important things you can do when you have Meniere’s disease. Most doctors try to help, but I’ve found that the wrong doctor can make everything so much worse. My first doctor refused to answer my questions or even explain the diagnosis. He dropped the bomb and left me to fend for myself. The following weeks were difficult. I thought my life was over.
But my second doctor changed everything. He was optimistic, positive, and gave me hope. I had no idea there was hope. He painted a picture of a world where I could be okay, and as a result, I eventually was. Without question, he saved me.
The type of specialist you should see is called a Neurotologist. They are Ear Nose and Throat (ENT) doctors who have subspecialized in treating balance and hearing disorders. They will typically have more experience treating Meniere’s disease and other vestibular disorders. You can find a highly rated local Neurotologist by searching on Health Grades, a leading doctor rating website.
When I was first diagnosed, the prospect of living a life of continuous suffering was too much to bear. I was terrified, and my first doctor only fueled the fire. As soon as I got home, I spent hours on the computer Googling Meniere’s disease. But reading all the terrifying reports of suffering only made me feel worse.
There is not nearly enough positive information about Meniere’s disease available to those in need. If all you know is hopelessness and despair, you will never get a chance to recover.
Follow this simple rule: if whatever you’re reading doesn’t leave you with a sense of optimism, it’s possibly doing you more harm than good.
Face your Meniere’s with courage and make the decision to do what’s necessary to fight for your health.
Personal Support Network:
Before I go any further, I want to shine a light on what will most likely be a big factor in your recovery: everyone else. Having a strong support network will be crucial to your treatment. But it can get complicated.
For starters, most people have never heard of Meniere’s disease. By most estimates, it only affects about 0.2% of the US population. There is a good chance that the people closest to you have never heard of Meniere’s disease and could have a hard time understanding what you’re going through.
(If you find this to be the case, I encourage you to read and share this post I wrote to help explain Meniere’s disease to our friends and family)
People may also underestimate the severity of your symptoms. This can be incredibly frustrating. Having clear communication with your family, friends, and colleagues, is important, especially when you are suffering.
Expect to have to explain yourself to others more often than you would like, or should have to for that matter. But have patience with those closest to you. It’s worth the effort.
Make no mistake about it; change is hard, even on a temporary basis. But it’s not as hard as permanently changing everything all at once, which is what most patients believe is required. I certainly did. A temporary change is a much easier pill to swallow.
At this stage, the goal is to try to get your symptoms under control. Whether you realize it or not, your symptoms are often triggered by something external in your environment. The specific triggers can vary from person to person, though, some of them are quite common.
“Happiness and freedom begin with a clear understanding of one principle. Some things are within your control. And some things are not.” – Epictetus
You may not be able to change the fact that you have Meniere’s disease, but you are not powerless. Focus your efforts on the things you can change.
In my opinion, the best strategy is:
- Remove all common Meniere’s disease triggers in a sweeping but temporary lifestyle cleanse.
- Improve your general health to give your body the best possible chance at fighting Meniere’s disease. If you are unhealthy, your body’s resources will be used elsewhere.
- Identify your personal, unique Meniere’s disease triggers, and avoid them.
- Discover what makes you feel better, and add more of it into your life.
Temporary Lifestyle Cleanse:
Your first and top priority should be getting your symptoms to a more manageable level. Not only will you start to feel better, but I’ve found that it’s a lot easier to identify your triggers once your symptoms have improved. With this in mind, the best strategy is to temporarily eliminate all of the common triggers of Meniere’s disease. Once you get a better idea of your personal triggers, you can slowly reintroduce the the things that aren’t affecting you.
Also, keep in mind that your body and brain will adapt to the illness over time. You will find that your limitations will change. If you end up having to give up something you enjoy, there is no reason to assume it will be forever.
This process will take time, and the longer you wait to begin, the longer it will take to improve. It’s like a trip into the forest. The further in you’ve gone, the longer it takes to get out.
On a temporary basis, make the following changes until your symptoms start to improve:
- Take all prescribed medication
- Changes to your diet:
- Reduce your sodium intake down to 1500-2000mg per day. Try to spread it out over the course of your day as well.
- Read the FDA nutrition labels for sodium content on the back of products at the grocery store before you buy anything.
- Avoid heavily processed foods and ingredients. Canned foods and frozen meals tend to have high sodium content.
- For snack foods, go to premium grocery stores such as Wholefoods and find snacks that have 50mg or less of sodium. Fruits and vegetables are always good choices as well. Snacking was the hardest obstacle for me early on. Finding snacks that I could eat without worrying made a big difference.
- At restaurants, ask the waiter if the chef can prepare your meal without salt. Be clear that you have a medical condition. Your choices may be restricted, but there should always be options. Salads are a good fall back choice but make sure to use olive oil and balsamic vinegar as the dressing.
- Work towards eating healthy
- When possible buy fresh organic fruits and vegetables.
- Grass-fed beef, pastured pigs and pastured chickens (and eggs) are a much healthier choice for meats.
- Local farmer’s markets and green markets are great places to find fresh and healthy foods.
- Watch your sugar intake. It seems like food manufacturers are putting sugar in everything these days. It’s okay to indulge, just practice moderation.
- Overeating causes stress to your body. Eat slowly, take smaller portions, and stop eating when you feel full. Make sure to eat a balanced diet.
- Reduce your sodium intake down to 1500-2000mg per day. Try to spread it out over the course of your day as well.
- Temporarily stop consuming the following substances:
- Caffeine – You may come to find that you can tolerate a cup of coffee when your symptoms aren’t flaring up, but avoid it for now.
- Tobacco and Nicotine – As a former smoker, I know how hard this is. I was able to quit with Nicotine gum. The gum gets rid of the cravings, but it’s hard to actually chew it when what you really want is a cigarette. Tell yourself that if the gum doesn’t help within 10 minutes, you will smoke. It always helps.
- Recreational drugs
- Mental Well-being and Stress:
- Chronic stress has a profound negative effect on health. Make a conscious effort to eliminate highly stressful activities from your daily routine.
- Start a simple daily meditation practice:
- Meditation is the most powerful tool I know of for reducing stress and anxiety. Simply defined, meditation is a mental exercise that trains you to control your thoughts and quiet your mind.
- If you are a beginner, try the following technique:
- Set a timer for 5-10 minutes. You can increase the time once it becomes a habit.
- Sit or lie down comfortably and close your eyes.
- Breathe deeply and slowly into your diaphragm (your lower abdomen).
- Focus your attention on your stomach. Feel the muscles move as you breathe in and out. When you catch your mind wandering, and it will gently bring your attention back to your stomach. Catching yourself and starting again is the actual practice. It’s not a sign of failure.
- If possible, find a therapist or support group. Meniere’s disease can be quite traumatic. Having a therapist or support group to help you work through this can be immensely helpful. It was for me. Click here to learn more and see a list of online support groups.
- Immediately start exercising daily. Even walking for 10-20 minutes each day is better than nothing. Exercising will have a powerful multiplying effect on the rest of your efforts. It will improve your sleep, reduce your stress, and increase your health and energy levels. Use stationary equipment, like a treadmill or stationary bike, when first starting out.
- Getting good sleep is absolutely crucial to your recovery. Without it, your body will not have the energy and resources it needs to heal.
- Go to bed and wake up at the same time every day, and make sure to get at least 8 hours of sleep every night.
- Avoid backlit screens (phones, TV, laptops, tablets) for at least 60 minutes before bedtime. Otherwise use a blue light filtering app or get a pair of blue light blocking glasses.
- Make sure your bedroom is pitch back and a comfortable temperature. Research shows that we get the best sleep when we are warm under our covers with the room between 62 and 68 degrees Fahrenheit. Both will improve sleep quality.
- Perform a mind dump – Before you lie down, take a minute to write down anything and everything on your mind. It will make it much easier to fall asleep.
- Tinnitus can make it hard to fall asleep. Use a white noise machine or Bluetooth speaker connected to a white noise app on your cell phone to help drown out the ringing.
- Allergies are a major trigger for Meniere’s symptoms. I’ve also found Meniere’s disease can make your allergies and sensitivities worse.
- Whenever possible, avoid anything you are allergic to. If you are allergic to something in your environment that you can’t avoid, like pollen, a daytime antihistamine like Cetirizine (Zyrtec) can help.
- Avoid even minor food allergies and sensitivities. I find that I get heavy brain fog and a runny nose when I don’t.
Make Your Changes Stick with a Fixed Daily Routine:
Making all these changes at once, even temporarily, is overwhelming. The only way I was able to make it work was by following a daily routine. Having a routine automates many of the decisions you have to make on daily basis. It can also provide you with a much-needed sense of stability.
Structure each day as much as possible. Wake up and go to sleep at the same time every day, even on the weekends. Eat your meals and snacks at the same time. Exercise, meditate, work, and relax at the same times every day. Incorporate all of the recurring parts of your day into your routine.
I can’t stress how powerful this is. The structure will help you keep moving forward in the right direction. By eliminating the need to make small decisions throughout the day, you will have more will power available to make bigger decisions. This practice was crucial to my recovery.
Journaling – Your Secret Weapon Against Meniere’s Disease:
Journaling is the final piece of the puzzle. It will help you identify the specific things that are triggering your symptoms. Remember, everyone experiences Meniere’s disease differently. There’s a good chance that some of the things that trigger other people, won’t trigger you at all, or vice-versa.
It’s also nearly impossible to figure it out without the right approach. If your symptoms flare up at 3 pm because of something you ate for breakfast, you aren’t automatically going to make that connection. And that’s just one example. This sort of missed association happens all the time. Most people are just not very good at making these connections naturally.
But when we have the right information in front of us, we’re actually very good at finding patterns. And keeping a daily journal will quickly give you the information you need to identify your triggers. So to make it easy for you, I created a free one-page journal tool to help you keep track of the right information. And all you have to do is fill one out each day.
To find your triggers, compare your notes on the days that your symptoms were at their worst. To identify what is helping you to feel better, compare the good days. It’s much easier to find the patterns when you have the right data in front of you!
I wish you the best of luck! Be patient with yourself, stay positive, and remember that there is so much hope. Meniere’s disease cannot and will not ever be bigger than your dreams.