When I was diagnosed with Meniere’s disease, I thought my life was over.

I was only 24 years old.

After six months of suffering, I finally knew what was wrong with me and it wasn’t going away any time soon. By all accounts, it was going to get worse…much worse. It was a dark time.

The doctor was supposed to make me better, but hadn’t helped at all. I felt my hopes and dreams evaporate. I was hanging on by a thread.

But today, I live a very different kind of life. I still have Meniere’s disease, but I’ve found countless ways to cope and improve my symptoms.

If you’ve just been diagnosed with Meniere’s disease, I want you to understand one thing, right now: there is so much hope. Meniere’s disease will not define you.

I know how scary it is. I know how overwhelmed you feel. And I know how much you’re suffering.

But as bad everything seems right now, there’s hope. I wish someone had told me that in the beginning.

I wrote this post to help you get started in the right direction.

First Steps:

One of the biggest challenges that people with Meniere’s disease face early on is a lack of information.

Most people leave their doctors office and take to Google for answers. But everything they find conflicts with everything else they find, and it’s all terrifying. It establishes terrible expectations, paralyzing them with fear.

Instead, I believe it’s better to understand what is still within your control and take action.

My approach to Meniere’s disease starts with a 3-step strategy:

  1. Find a great doctor to coordinate your treatment and prescribe necessary medications
  2. Temporarily make the lifestyle changes known to improve Meniere’s disease symptoms
  3. Track your lifestyle, environment, diet, and symptoms to identify your symptom triggers

How to find a great doctor:

Having a great doctor to coordinate your treatment can make all the difference in the world. It’s the most important first step you can take. Even if you like the doctor who diagnosed you, I encourage you to follow the steps outlined in these two posts to find a second opinion.

How to Find the Right Doctor to Conquer Meniere’s Disease

How to Find a Better Meniere’s Disease Specialist

Temporarily make the lifestyle changes that can help with Meniere’s disease:

There are many lifestyle changes known to improve Meniere’s disease symptoms. You’ve probably heard the basics, like cutting out caffeine and lowering sodium intake. But there is a lot more that you can do, especially early on.

First and foremost, this allows you to eliminate many of the common Meniere’s disease triggers. Your symptoms may seem to strike at random, but they’re usually triggered by some external factor in your environment. Everyone experiences this differently, but by temporarily eliminating all the common triggers, you have a better chance of improvement.

Also, many of these lifestyle changes will improve your overall level of health. Your body will be able to direct more of its energy and resources towards coping with Meniere’s disease.

Erase Meniere’s Disease Symptoms with a Temporary Lifestyle Cleanse

Finding your triggers:

The lifestyle changes can be extremely helpful early on, but it’s also important for you to identify your unique triggers. Triggers vary from person to person, and understanding how specific things affect you is a crucial step in coping with Meniere’s disease.

The best way to find your triggers is to track various aspects of your lifestyle, environment, diet, and symptoms to look for patterns. You may not be able to avoid all your triggers, but this kind of knowledge is extremely powerful to have.

How to find your Meniere’s Disease Triggers

Moving Forward:

Once you have a handle on the basics, there is a lot more that you can do to improve. But to avoid overwhelming you, I’m going to focus on two goals: educating your friends and family to build a solid foundation of support and overcoming fear and anxiety.

Explaining Meniere’s disease to your family and friends:

Meniere’s disease can be a very isolating condition because it’s invisible, and most people have never heard of it. But when your family and friends understand what you’re going through, they can support you in a way that actually makes a difference.

I wrote these posts to help them understand. Share them with your friends and family:

What it’s Really Like to Live with Meniere’s Disease

Meniere’s Disease: Take a Dizzying Walk in my Shoes

The Caregiver Commandments: How to Support a Loved One with Invisible Illness

A Message from my Wife Megan

Coping with the overwhelming fear of Meniere’s disease:

When you live with Meniere’s disease, there is this constant, crippling sense of fear of anxiety. When vertigo can strike at any moment, it can be hard to even leave the house.

But just because you have Meniere’s disease doesn’t mean you can’t go out and enjoy life. These two posts can help you conquer the fear:

Join My Facebook Support Group!

The Crippling Fear of Meniere’s Disease

The Trauma of Meniere’s Disease (Includes Support Groups)

The Meniere’s Activity Planner

Bookmark these lists:

These are two of the most important pieces of content I’ve ever created. They’re comprehensive lists of organizations, tools, books, nonprofits, online support groups, and so much more. Take a look and bookmark them for future reference.

The Ultimate List of Meniere’s Disease Links and Resources

The Ultimate List of Tinnitus Links and Resources

Conclusion:

I know how confusing and difficult everything probably seems right now. I remember it like it was yesterday. But it’s not the life sentence that it appears.

You have a long, challenging road ahead of you.

But there is so much hope. You are not powerless to improve your situation.

I’m here to tell you that your life isn’t over, not by a long shot.

Meniere’s disease will never define you. It cannot and will not ever be bigger than your dreams.

Want to learn more?

I tried to limit the number of links I included in this post because I know it’s a lot to take in.

But there’s so much more to learn! And that’s a good thing.

Once you’ve had a chance to read through all the links I’ve mentioned here, I encourage you browse through my other blog posts. I’ve published more than 100 long-form articles, filled with coping strategies, motivational insights, tools, and so much more, all freely available for you to explore.

But if you’d like a more easily digestible, structured approach to my Meniere’s disease strategy, I’ve also written a book:

Mind Over Meniere’s: How I Conquered Meniere’s Disease and Learned to Thrive.

  1. Hi! Thank you for this website. My primary doctor recommended an ENT who now has recommended me to a more special specialist to determine whether I have Meniere’s. I had 3 episodes of vertigo since October 2016 (about 6 months). Originally my primary doc diagnosed me with Labrynthitis but the full feeling in my left ear never really went away. The ENT found that I have mild low frequency hearing loss in the same ear. He told me not to worry but suggested doing some research on Meniere’s. Which led me to you. My next doctor appt is in a few weeks for more testing and what I expect to be a diagnosis one way or the other.
    It turns out my grandfather also had Meniere’s l, although I found conflicting information on whether it is hereditary. I’ve already jumped onto the low sodium bandwagon and am starting to journal as well. The idea of permanent hearing loss is what is freaking me out the most…

    • Hi Amy, I’m glad to hear that you’re taking a proactive approach. As to Meniere’s being hereditary, according to the research I’ve seen, it runs in families in I believe 8-11% of cases. In fact, some companies, like Xenon Pharmaceuticals in Canada, are studying family cases to look for the responsible gene. I hope you’re able to get a diagnosis quickly, and I’ll tell you the same thing my Neurotologist told me early on – there’s no reason to assume you are going to lose your hearing. The hearing loss fluctuates with symptoms and does get slowly damaged by vertigo, but if you are able to get a handle on things and reduce the number/intensity of the attacks, there’s no reason to just assume you will lose your hearing. Keep us posted!

  2. hi glen, i think one thing that is missing for your post here is that many of those diagnosed with Meniere’s disease are misdiagnosed and are actully suffering from migraine/vestibular migraine. a lot of the dietary and trigger considerations you list apply to both disorders. of course finding a progressive specialist (audiologist, ent, neurologist) can help differentiate these two. cheers.

    • Good point mike. I didn’t mention it here, but in the articles I link to in the finding a specialist section, I always recommend people finding a highly rated Neurotologist (ENT who has subspecialized in treating balance and hearing disorders. But your point is well taken.

  3. Glen,

    Thank you for taking the time and putting this page and the book together. The video to help friends and family understand what we are going thru is brilliant. I have been fighting this disease for going on three years now but just got diagnosed this week. I don’t know how to feel right now, but reading your blog gives me hope. One question for you though; Have your publishers had your book translated to other languages? The reason I asked is that I have a lot of family members that do not speak/read/write English. If you do please let me know so that I can point them in the right direction. As I write this lines and although I am 59 years old, I don’t know what my future will be. Reading what you have put here gives me hope that I will be able to cope and thrive even though I have this disease. Thank you again for having the courage to write about it.

    • Hi Alfredo, first off I’m sorry to hear that you’ve been struggling, but I’m glad you finally got a diagnosis. Unfortunately, my book is only in English right now. I self published it myself, so having it translated would be at my own expense. It’s something I plan to do at some point but haven’t been able to yet. Sorry about that!

  4. Hi Glenn,
    I just wanted to check back in with a follow up after my reply from March 7th. I went to the more special specialist who did indeed diagnose me with Meniere’s. He gave me the standard suggestions of low sodium and low caffeine diet plus gave me a prescription for valium, which I decided not to fill. I was disappointed with the idea of a pill to just make me care less about the symptoms instead of helping me understand and deal with this.
    I instead turned to diet first and followed the Whole30 Diet plan. Shortly after my first week, I immediately noticed the fullness in my ear subsided and realized I had no signs of vertigo. Now I know that one of the terrible things about Meniere’s is how random it can be and wasn’t sure if I could honestly say I was really feeling better to stay or it was just a good month.
    As it happens when you start feeling better, you think you are cured! So, feeling awesome and full of energy, clear headed, bright and awake, my Whole30 ended. And then I started reverting back to all my old habits. It has now been about a month since I finished Whole30, and just yesterday I noticed that my Meniere’s symptoms are back. My ear feels full. Last night, I had vertigo (no vomiting) while cooking dinner, and I’m back to being tired.
    It is so hard for me to say what exactly helped. Just the all around better diet. The fact that I barely ate out, so my sodium intake was significantly lower (even though I still used salt in my own cooking) or no alcohol, no dairy, no processed foods. That diet is a challenge to be sure…but I didn’t realize how much better I was feeling until my symptoms came back. I’m not one to use strong language. But, as soon as the vertigo came back…my first thought was “Oh H#$% No!”
    I know this will be a process to figure out what my actual triggers are. All of the things or just some of them. When I felt physically better, my stress levels were way down, so I believe that contributed too. When I knew I wasn’t making great food choices, I started feeling guilty, which led to stress, low energy, anxiety, depression.
    So, I just wanted to lend my voice to the support of a truly good diet and taking care of yourself. Writing things serves as a reminder for me and if it helps someone else, all the better.
    Thank you for giving people a place figure this out!

    • Hi Amy, I’m the exact same way, when I manage my diet and lifestyle perfectly, I live mostly symptom free. But the second I start slipping up, or if my stress levels rise, my symptoms creep back in. The good news is that you at least are starting to know what’s triggering you – you’re taking back some level of control. I would stress though that you may not need a specific diet to live symptom free. Instead of just following that diet, try to figure out exactly what is triggering you. I only suggest this because strict diets can be more difficult to follow. If, for example, you find out you are only triggered by sodium, that’s an easier restriction to manage. This free tool will help you figure out what is triggering you: http://www.mindovermenieres.com/menieres-disease-triggers/

  5. Does anyone have any knowledge of this following chemotherapy in some people. I had breast cancer, surgeries and chemo and now this crazy issue…..just wondered if it can cause damage in some ppl…it’s such horrible poison. Thanks waiting to find out if I’m truly Menieres sufferer or CSF leaker…..Good times.

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