Make no mistake about it, Meniere’s is a tough disease to deal with, and it can wear down even the strongest individual. And while certain aspects of it like hearing loss are all but inevitable, that doesn’t mean you have to take the rest of the symptoms lying down.
I’ve been fighting Meniere’s disease for over seven years now, and while there are days – and even weeks – where it knocks me down, I’ve learned how to cope with Meniere’s disease, and how to survive it.
Below, I’ve compiled a list of the things that will help you deal with Meniere’s, and if you’re just finding your footing with this disease, then following these suggestions can make your life much easier.
Find a Good Doctor
While this might seem odd that finding a good doctor takes the first spot on the list, the absolute most important thing you can do to make your life easier with Meniere’s disease, is to find a skilled, compassionate doctor. The difference between having a good doctor and a bad doctor is like night and day with this disease.
There will be times when you’ll absolutely need the support of your doctor: Whether it’s filling out disability forms, trying out new medications, or trying to find the best treatment, it’s essential to find someone both familiar with Meniere’s disease, and who is also supportive.
I went through my share of poor doctors before I found my current one (who I can’t speak highly enough about). In fact, the first two doctors I visited diagnosed me with anxiety, and as the vertigo attacks escalated, they just kept upping my dosage of anti-anxiety medications, until I had more drugs in my system than a rock star.
It was only when I visited my current doctor, that he honed in on my vertigo and balance issues, and diagnosed me with Meniere’s disease. So, don’t be afraid to switch doctors if you aren’t happy with yours – it’s your health, and you must advocate for yourself.
Keep Stress to a Minimum
While there is no definitive link between stress and flare ups of Meniere’s disease, there is mountains of convincing anecdotal evidence that stress makes symptoms worse. And that makes controlling stress one of the key components of dealing with this disease.
Of course, you might be saying ‘How do I deal with stress, when the disease by its very nature causes anxiety?’ I wish I had an easy answer for that, and I’ve experienced the terrible anxiety of worrying when the next attack will strike, or how I will deal with this long term.
But after some truly hellish years, I’ve gotten much better at controlling my anxiety, which helps to keep my stress under control. I did eventually have the help of a good therapist, but most of the work I had to do myself – I couldn’t afford to see anyone during my early years of disability.
For me, it really came down to keeping my life simple, and learning to cope with the symptoms. Dealing with stress will be different for everyone, but you’ll see dividends almost immediately if you start working at lowering your stress – making it that much easier to deal with Meniere’s disease.
Keep Active
Keeping fit and active is incredibly important in the fight against this disease. Not only does it help decrease stress, but when you’re fit, it helps in the fights against the disease itself.
But the key thing to remember when being active with Meniere’s disease, is to not overdo it. Overdoing it can actually trigger symptoms in many people, and not every physical activity is right for everyone. The most important thing is to stay safe, and only do what you can handle.
I know some people with Meniere’s who swear by a vigorous walk in the morning, and I also know some people who are into hardcore bodybuilding who have this disease.
That’s why it’s so important to find what works for you – and what doesn’t trigger your vertigo. It doesn’t matter if it’s a brisk walk, or an hour at the gym; All that matters is that you do something to keep fit.
Diet
There’s the perception out there that once you get diagnosed with Meniere’s disease, you’ll have to eat like a rabbit for the rest of your life. And while there are some foods you should avoid – anything with high levels of salt, alcohol, and chocolate – you can still eat a rich and fulfilling diet. And by avoiding these foods, it makes it far easier to deal with Meniere’s disease.
And while it can be difficult to summon the willpower to avoid these foods, it has been shown to help regulate the fluids in your ears over the long run. Personally, I avoid these foods religiously, but there are many people who have had success adding them back in small qualities – though always check with your doctor before changing your diet.
But I can say from personal experience, if you follow this diet, you will probably notice a marked improvement in your symptoms. Before I started avoiding these foods, I could barely stand upright, but after a few weeks of adjusting to it, I could have long stretches of with very few symptoms.
Find the Right Medication
This is one of the more contentious aspects of Meniere’s disease. Some doctors swear by drugs, while others think they don’t work at all. To make matters even more complicated, one of the most popular Meniere’s drugs, Serc, isn’t available in the United States.
This subject should always be discussed with your doctor, but many people do find some relief from their symptoms with medication. But since every case is different, it’s hard to say whether this will help you deal with Meniere’s disease.
Keep it Simple
While everything mentioned above can potentially help you deal with Meniere’s, probably the best advice is to keep your life simple. One of the hardest things to come to terms with when you have Meniere’s disease is that your life has changed; You won’t always be able to do all the things you did before.
But when you simplify your life and focus on the things that really matter, it will help you cope with Meniere’s disease. And I don’t claim to have taken this lesson completely to heart yet, but it’s something I work on every day. And someday, I hope to truly simplify my life.
How do you deal with Meniere’s disease? I’d love to hear from you in the comments below.
Stress reduction, diuretic and Elavil seem to work very well for me. I have a history of migraine and a solid diagnosis of Meniere’s.
I have had a Meniere’s diagnosis for just under a year. While following a strict low sodium diet and drinking a minimum of 9 cups of water a day has helped, I still don’t feel like I’m managing this thing. Any help would be appreciated.
It can be a really tough disease to manage, and even worse – it’s invisible so no one can see what you’re going through.
The only way I made any progress was almost living like a monk. I cut out all caffeine, alcoholol, gluten, processed food, sugar, and starting eating small meals every three hours to keep my blood sugar stable (this is very important). I also avoided computers as much as possible, changed the lights in my house to warmlight LEDs, started vestibular rehabilitation, and avoided situations that would overwhelm my vestibular system. I’m not saying you should go to this extreme, but you can start experimenting with some of this stuff to see if it helps you.
It’s hasn’t been perfect, and I occasionally cheat on my regime (except for alcohol and caffeine, which are huge triggers for me), but I went from being virtually bed bound to someone who can at least take care of themselves. I still get periods where it gets really rough, but I’m hopeful someday I’ll find something to get this illness under control. And hopefully I’ve given you some suggestions that will help.
I started experiencing symptoms of Meniere’s about a year ago. It followed four difficult years which included caring for my sister diagnosed with Glioblastoma (passed away 2015) concurrent with my mother having a massive stroke which left her unable to walk talk of swollow properly so she was on a liquid diet with a gastric tube and had a food pump. With the help of 2 sisters we cared for her at home for 2 years, she passed away last year (2017) at the age of 92. Two months after burying my mother, I began to experience symptoms of Meniere’s disease.
The only way I have been able to continue to work is that I take Gravol 5 to 6 times a day.( both ENT doctors i see know about this) Yes, I watch my salt intake, avoided caffeine for almost a year now along with chocolate, alcohol, very sugary treats. I’m on a diuretic(lasix), I have tried SERC twice…didn’t do much. I try to find joy in my life everyday and I am always grateful for the life God has given me but I’m tired of being tired(Gravol is highly sedating) I’m tired of being anxious, afraid I will have an attack at work. My attacks are severe…2 hours extreme nausea and vomiting, vertigo for hours followed by complete exhaustion afterwards. I battle with guilt. I feel I have no right to complain, not after I witnessed what my sister had to endure with her brain cancer. I have confided in my ENT doctor, he listened and understood while some of my closest friends made me feel like I’m not doing enough to help myself. I have good days, today was not one of them. I pray for strength and hope tomorrow will be better. I have 2 older siblings who can’t take care of themselves for various reasons so i feel like I can’t be sick because they need me. Always worried, What will happen to me? What will become of them? I am turning to you folks because you all have your stories, i know you understand. Tired of being alone in this.
Irene,
I think we’ve all been where you are right now at some point in our battle with Menieres. I struggle with guilt as well and hate when this disease won’t let me be the father or husband that I want to be. And I understand the feeling of being tired all the time and just wanting to live a normal life. It can be draining dealing with this day in and day out.
But they say humans can deal with anything as long as they know there is an end in sight. And the good news is that Meniere’s Disease eventually burns itself out. I often cling to that fact on my worst days, when I’m on my back in the bathroom, or watching the bedroom spin and spin. It may be years away, but someday we will all find some measure of relief. I know it’s not much, but we just have to keep pushing forward and finding joy in the times when we’re not sick.
I hope things start to get better for you.
I was diagnosed in March, and after several doctors, I have been put on SERC. However, it is not helping. Between the tinnitus, hearing loss and daily vertigo, I am finding each day very difficult. For time spent in a mall, I am in a wheelchair. I am following strictly a vegan diet and going back in two weeks to school as a teacher. I am hoping to be able to continue with my job as it is my Income. Stress will be beyond belief and I’m coping with tools to help me with the anxiety. Any suggestions???
Sheryl
I was diagnosed with Meniere’s Syndrome about 10 years ago. I was in the middle of a very stressful process of RN training. Half-way through RN School, I was absolutely knocked down with extreme bouts of vertigo and vomiting that would last for sometimes eight hours or more. I often piled pillows and blankets in the bathroom floor and curled up in a ball, praying for sleep, and for the room to stop spinning. After I have these attacks, I am left with anxiety and debilitating fatigue. These “hangovers” from the attacks last up to three days. Sometimes I have no sense of time having the unfortunate loss of days of my life spent in bed. It was at first suspected that I had a tumor pressing against the tympanic membrane. Once that was ruled out by CT scans and MRI, that left me with the unfortunate diagnosis of Meniere’s. It was like a nightmare having this diagnosis! There is limited information and very limited resources for treatment. One physician I saw basically scolded me for asking questions! He raised his voice while telling me that they just don’t understand what causes this, or how to treat it. I agree that finding a reputable and knowledgeable physician is vitally important. I’ve seen 5 different physicians and my current physician is very realistic about my options and medical situation. I have a long history of extreme migraine; (31 years since my first migraine). I also was in a terrible auto accident that injured 14 vertebrae in my spine. I have had to endure three surgeries on my cervical spine, and I have numerous vertebrae that are fused/ from C2 through T2. My neck and thoracic spine is in constant pain and the spasms in my spine naturally intensify when I have the vertigo attacks. My specialist has told me that I am not a good candidate for surgery, due to the long history of migraine. He has experienced patients with migraine history have to endure months of vertigo after having invasive procedures to try and counteract the effects of the vestibular imbalance. I’ve tried diuretics, extreme low sodium intake, (600-800 mg in a 24 hour period), zero alcohol for nearly 2 years, never eating chocolate, etc., with absolutely no changes whatsoever in my vestibular health. I’m not going to lie; surgery in that part of my body terrifies me! I’ve had 3 separate physicians tell me that surgery is an absolute last resort for me. Guilt is most definitely one of my greatest battles. I had always been a very busy person before this condition; having often worked three jobs to support my family. I was a single parent for more than ten years before this occurred, with zero financial help from my children’s father for over a decade. Now that I’m overwhelmed with the inability to control this malady, all I’m left with is questions and no answers.
Bless you all for the help. Having a community of people that “get it” is invaluable.
Hello, I’m using the same diet regarding alcohol and 800 mg of salt and not using any coffee,