The Importance of Exercise for Managing Meniere’s Disease

Considering that some of the worst and persistent symptoms of Meniere’s Disease includes violent vertigo that can be unpredictable, drop attacks, permanent imbalance (it makes us look like we’re drunk!), nausea, and severe fatigue, you’d probably wonder how it’s even possible for someone with Meniere’s to manage to do any exercise. Well, from the information I’ve read about Meniere’s Disease online as well as from support groups, it turns out that exercise is actually important when it comes to managing this illness. But how does someone go about doing exercise, and what type?

       Before I go any farther, I’d like to mention that the severity of Meniere’s Disease varies from person to person. Some suffer with episodes of violent vertigo that can last up to 24 hours, or even longer! My worst violent vertigo attacks in the past left me face down on the floor for two hours until the spinning stopped, and I had severe nausea during each episode that left me feeling I’d get sick if I moved even one millimeter. Near the end of my pregnancy with my son, I was woken up by a vertigo attack so severe (and the first one that was THAT bad. . .and it terrified me because I had no idea that Meniere’s even existed yet) with the worst nausea, yet I had to crawl to the bathroom. The only thing is that I didn’t even make it to the bathroom and I ended up vomiting violently in the doorway of my bedroom. I went to the ER during that episode, and of course nothing was found (normal for this disease as it can take years to be diagnosed, and many haven’t heard of it).

       Back then, I could barely even walk and had to hold onto furniture and walls in order to get around, something I called “furniture swimming.” When I look back and remember what I was going through, it would have been impossible for me to ever even consider exercise. All of the information I’ve read about exercise being used to help manage Meniere’s Disease and how it helped some feel better (though, better does not mean cured, heale, or completely symptom free; it simply means the symptoms may be less intense and less frequent), I honestly thought was complete crap when I first read it. I thought it was impossible and possibly even dangerous. The way I saw it, my imbalance is bad enough and how often I stagger while walking left me feeling it was impossible to ever run, jog, roller skate, or bicycle, especially when walking itself can be. Then I started thinking about it and changed my opinion. I started thinking, “Well, what will happen if I don’t exercise?”

       The way I see it is exercise, in whatever form and frequency possible, is absolutely necessary to manage my Meniere’s Disease, and I also look at it as preventative. What happens to the muscles in the body when there’s no exercise? They eventually atrophy, and the heart is a muscle. The risk for obesity, heart disease, diabetes, and many other illnesses rise. How would that affect Meniere’s Disease? I’m not positive, since I’m not a doctor, but the way I see it is managing Meniere’s is about trying to reduce the number of vertigo attacks and minimize the other symptoms as much as possible, and it’s about reducing the amount of fluid in the inner ear (many, such as myself, are prescribed diuretics to do this).

       If the body weakens and muscles begin to atrophy, and if a person becomes obese, and if they get hypertension, wouldn’t that increase the amount of fluid in the ear as well as force more blood circulation through the inner ear? My theory is that if I keep my body in shape as much as possible, manage my weight and diet properly, then maybe I can decrease how intense my symptoms are, or prevent them from being worse because of those other contributing factors. I’d like to note that Meniere’s Disease is progressive and gets worse over time, however, why speed that time up?

       Another way that I look at it is that I figure my inner ear is already messed up, but I need to keep a preventative state of mind. Personally, I love living and I want to continue living and die of old age. If I don’t exercise or eat right, then I’ll only bring on more health issues. Like I mentioned above, I could end up with heart disease and a range of other issues. I’d like to do all that I can to limit my health issues to my vestibular system (inner ear). Meniere’s Disease is hard enough to deal with, so any other health issues that I’d accumulate and be advised to exercise and eat a healthy diet for would be more difficult. So, why leave all of that to risk rather than appreciate the health that I still have and protect it?

       Now what kind of exercise and when to get exercise? I say anything I can manage, and just try to do something each day. I have to accept that I have some limitations now, such as I really don’t feel that I can run, jog, ride a bicycle, roller skate, etc., but it’s important to just keep moving and do what I can do as often as possible. For me, this is walking and sometimes swimming. I tried using a fitness app on my phone to do exercise such as jumping jacks, planks, push ups, running in place, etc., and unfortunately those exercises only triggered my vertigo.

       During my mild and even my moderate days, I make myself walk as much as I’m able to. During my mild days, I really push myself much harder as I have no idea of tomorrow will be a severe day for my symptoms and an episode. I have to live in and take advantage of the moment while being cognizant that my vertigo, fatigue, etc. episodes can happen at any time. My days can even start out mild and I’ll feel really good, but there have been times where hours later my day turned into a severe day where I had violent vertigo, then being much more imbalanced than normal, and severe fatigue for hours, or even the rest of the day.

       I feel that the only way I can prevent my health from deteriorating or my Meniere’s getting worse much faster, is I need to keep my body at least as strong as it is now, but aim to make it stronger. That’s actually a good way for anyone to think, whether or not they have Meniere’s Disease. We only get one body and one life, so we need to take care of it and make sure that we don’t take it for granted. For me, giving up isn’t an option, and it’s also very important for me to set a good example for my son. I want him to always be grateful for what he has and love who he is, and if he ever has any illness or anything at all that sets any type of limitations on him, I’d like for him to try to overcome those obstacles any way that he can. Sometimes that even means accepting the limitations, but finding any way to work with the abilities a person still has in order to keep a good quality of life, a healthy level of self-esteem, and it’s good for maintaining mental health. It’s important that giving up or surrendering (the negative type of surrender) isn’t an option. I wouldn’t want my health to deteriorate to a point where it could be recovered or reversed.

       This week has been pretty mild overall with my symptoms, so I’ve been pushing myself to do as much walking as possible. I’ve actually been able to get at least 10,000 steps in most of those days! I push myself to do most of it when I feel good, especially in the morning, and then I try to walk a little more in the evening or at night. Yesterday my symptoms were mild during the day, but then they were moderate-severe last night, however, I still forced myself to walk two rounds around the grounds of my condo. I try to keep some type of pace even though I may look drunk and stagger a little, but I’ve never fallen or had any accidents; I know when to push myself and I know when to rest. It’s something that every individual needs to figure out for themselves, but for me, walking is pretty much the only exercise I can guarantee to be able to do.

       When my days are mild, I take my son with me, but if my symptoms are moderate, my husband comes along or I leave my son with husband while I exercise. When my symptoms are severe, I just rest and see if I can do as much walking as I can around my home. Even if the pace may not be a heavy calorie burning mode, any exercise is better than none. For me, it’s about protecting the remaining health that I have, being as healthy as I can for my husband and son, but it’s also about knowing that I still have worth as a person, a healthy level of self-love, and I’m just someone who doesn’t give up.

       My overall advice to those with Meniere’s Disease is to exercise. Do as much as you can when you can, and do what you can. Don’t give up, don’t surrender, and understand that you still have worth as a person! Don’t let the illness define you, you can define the illness instead. Don’t think so much about and get caught up in what you can’t do, think about what you can do. You’re worth it! I’ve found that my attitude has been very crucial in managing my Meniere’s because stress is one of my main triggers for my episodes (along with hormones, weather, and barometric pressure changes). I have no control over most of my triggers, but I can control my stress to some degree. I used to have chronic, prolonged severe stress, and I feel that was one of the main contributing factors as to how I developed Meniere’s (there isn’t a known cause, but there are many contributing factors and theories, but stress is linked to illness).

       My ENT (Ear Nose Throat specialist) told me when I was diagnosed that I needed to eliminate as much stress from my life as possible, which I had already done by that point because I had already strongly suspected Meniere’s Disease, and I knew that eliminating and managing stress was a part of managing the illness. One thing that exercise does is help to reduce and control stress, not only mentally, but physically because it helps to balance hormones and decrease cortisol. Cortisol is a stress hormone, but when a person has severe, prolonged chronic stress, that hormone can remain high and the person may seem to be stuck in fight-or-flight mode. Exercise, along with some dietary adjustments as well as meditation, can help with returning cortisol levels to normal over a period of two or three months, maybe a little longer (I’ll write a post about this in the future). If you’re someone who has also had a lot of severe, prolonged chronic stress, whether or not you have Meniere’s Disease, it’s very important to find a way to bring the stress down to a healthy level (I know it’s easier said than done, but it’s important to do it for yourself!) to avoid the risk of the stress causing health problems, including possibly being a contributing factor in triggering the onset of Meniere’s.

Peony Evans

Congratulations, I’ve Got Meniere’s Disease (Insert Sarcasm Here). . .

Truly, there aren’t any congratulations in store for having Meniere’s Disease, and I meant the title with sarcasm. Many may not think there’s anything funny about Meniere’s Disease, as it’s a horrendous hell of a disease to have, some describing it as the “worst disease a person can have that doesn’t kill them” and that it’s like “Being a prisoner in your own body.” I certainly felt that way in the beginning, but as the months went by and more tests were being done to reach my diagnosis, I realized that it’s important to keep a positive attitude about having this disease as much as possible and to keep a sense of humor about it, otherwise it’s something that could easily swallow me up and make me give up. I’ve also learned that the way to deal with Meniere’s is also to just ride the waves of it rather than fight it, which I understand is much easier said than done for many.

      I plan to use this blog to not only bring awareness to Meniere’s and explain what it is, but I’d also like to write about my day-to-day experiences with it, and I’d also like to write about what it’s like to raise my young son while having this disease. The onset of my Meniere’s Disease was in the eighth month of pregnancy, October 9, 2017. Yes, I remember the day clearly, my last moments of being normal without Meniere’s, and my first moments of having something I had no idea that existed and didn’t know I’d have for the rest of my life. I’ll be as transparent as I possibly can about my thoughts and feelings both past and present having this disease, and I’d also like to share any fears and worries that I may have about the future throughout the duration of this blog. But what is Meniere’s Disease exactly? That would certainly be a great place to start, but I haven’t been able to find any website that lists all of the symptoms of Meniere’s Disease on one page to date, including the Mayo Clinic’s site. 

      As time went on and I gained more experience with having Meniere’s, I understand that it’s almost impossible to put all of the information about it on one site, and it isn’t a health condition that is widely known of, and that’s why I’d like to have this blog. In short, Meniere’s Disease is the accumulation of extra fluid in the inner ear in the part known as the labyrinth, which also affects the pressure in the inner ear. This part also sends signals to the brain of body position and is responsible for balance. The worst symptom of Meniere’s is the unpredictable, sudden and violent episodes of vertigo that can be so severe that the afflicted person can’t see, walk, or stand, leaving them in many cases face down on the floor until the episode passes (which can be minutes to hours, or even a full day). More “fun” symptoms include nausea, vomiting, disequilibrium, hearing loss, tinnitus, ear pressure/ear fullness, facial numbness, depression, mood swings (not hard to imagine why!), severe fatigue, hyperacusis, nystagamus, and many other fun things that I’ll cover in future posts. Trust me, I’ll cover every symptom in it’s own post aside from my own journals of when I experience them! 

      Lastly, I don’t mean to sound angry or bitter, I’m really not. It’s just how my sense of humor may come across in writing, and I refuse to give up and let this disease overtake me. Instead, as I mentioned earlier, I ride the waves of it and I’ve learned to laugh at it. Of course it’s much more complex than that and it doesn’t mean I’m always smiling and joking about it. . .when in the throws of a vertigo episode, all I really do is try to find any position and technique to make the spinning stop and hold that position until the warning symptoms stop (aka aura), focus on breathing deeply and slowly (mindfulness and meditation. . .yeah, I rolled my eyes at first at the idea of meditating while experiencing spinning that I couldn’t see while my stomach contents felt like they were being yanked out of me, but it’s crucial), and staying calm since anxiety will only add fuel to the fire. 

      This blog is not intended to be a place for me to rant, but I really do want people who don’t have Meniere’s Disease, or who haven’t even heard of it (trust me, I had no idea such a sadistic disease existed that takes away such a basic and necessary function, until I had it) to learn about it. I want for readers to understand what it’s like to live with it, the challenges people with this disease face, understand what triggers vertigo episodes and other symptoms, the emotions we struggle with, how we cope, etc. Meniere’s is one of those silent or invisible illnesses, and it’s easy for others without it to think that someone who is afflicted with it is faking it or has any control over it. Mind over matter only goes so far coping with this disease; it does not control or make the symptoms go away at all, the mind can only be used to hopefully cope in a healthy way. I plan to be so transparent that there won’t be a doubt that it’s real, so that those who don’t suffer it ever encounter a family member or friend who has it or gets it, they know how to support them. Having a good support system that understands, believes, and stands by the one with Meniere’s is above all, the most important and most meaningful thing to someone who has it. 

Peony Evans