My Life with Meniere’s

At the age of 19, I was diagnosed with Meniere’s disease. What is Meniere’s, you ask? Let’s just say it’s not fun. In a nutshell, it’s an autoimmune condition that is characterized by four main symptoms: fullness or pressure in the ears, ringing in the ears, loss of hearing especially in the lower frequencies, and periods of dizziness/vertigo. It is idiopathic meaning there isn’t a distinct cause though inflammation is a key component as is common with many present day diseases. The 2nd semester of my freshman college year was marked with spells of vertigo where the room would, without warning, start spinning violently for a few minutes. After the spinning subsided, I was left tired and unable to think straight which led inevitably to a nice three hour nap sometimes skipping classes so I could recover from an episode. This happened at least twice a week. There were many times I walked back from a class stumbling slightly and grabbing onto any wall or rail that I could for some sense of balance. I’m certain everyone thought I was drunk. Really, if you don’t have Meniere’s, that’s the most similar feeling I can equate it to: the spinning, off balance, and nausea you get from having WAY too many beverages. I found a kind doctor who, after other tests to rule out tumors and other more serious concerns, diagnosed me with Meniere’s disease in my left ear. I was given a diuretic to take daily and told to limit salt intake, caffeine and alcohol. This regimen worked pretty well for the following ten years to limit vertigo to about twice a year (all of which were induced by me not following the rules and either overindulging in salt or alcohol).  My hearing however, gradually diminished in my left ear to about 50% meaning I can only hear really loud things on that side and am unable to distinguish most words on that side. It remains at that level currently.

When I was 28, I delivered our first child. Within a month (which also happened to be in the spring), I started having severe congestion on a day to day basis, ringing in my good ear and shifts in hearing in both ears. My pregnancy and birth of our second child resulted in a slight escalation of these symptoms wherein I started to feel that I could not always hear the conversation at work meetings, had high levels of fatigue, and ultimately, I quit working partly because I felt I wasn’t functioning as well at work and it was slightly embarrassing. Luckily, it had been my desire to stay home with my two kids anyway so it was a convenient time to stop working. Shortly after staying home full time, I discovered my uptick in symptoms was directly related to the spring and fall seasons and tested positive for a number of seasonal allergies which I never had suffered from until having children.

At this point, I started immunotherapy and chiropractic in hopes of correcting my seasonal allergies.  I was also taking a number of medications for my allergies and a prescription for the Meniere’s to lower pressure in my ear. I had switched my ENT doctor while I was pregnant with my third (and final!) child and my new doc was amazing. He was young and understood my desires to integrate conventional medical expertise and to experiment with alternative options. I needed to try anything and everything (within reason, of course). I was convinced that I was “going bi” meaning that my Meniere’s was bilateral, becoming symptomatic in both ears since my good ear had begun having fluctuations in hearing. I had a small ray of sunshine however as my ENT was not as convinced that this was happening and thought this could be just triggered by allergies or another trigger that could potentially be controlled. As a temporary help, he performed a myringotomy and placed tubes in my ears. It was a lifesaver and stopped the major episodes of vertigo while I was pregnant. We postponed any further testing/treatment experiments until baby 3 had arrived.

After the birth of our third child, I’ve struggled with more severe seasonal allergies and the Meniere’s disease which I’ve had since I was a teenager also dramatically increased in intensity. I also developed a food sensitivity to soft dairy. I felt like my body was completely broken. My right ear now also was ringing full time and occasionally had pressure. Hearing tests indicated my good ear was experiencing sensorineural hearing loss as well which may not be reversible or even aidable with hearing aids. I was suddenly very fearful that I would be functionally deaf within the next decade and need to learn sign language. To top that off, I felt mildly off balance nearly every day similar to the feeling of walking on a boat. I also had an increase in vertigo that caused room spinning and left me laying down for many hours afterwards. I didn’t feel comfortable driving distances and limited myself (on days I felt reasonably good) to driving only a few miles away for essential errands only. I felt I had lost much independence and often had to ask my husband to run errands since I didn’t feel well enough to drive on many days. I couldn’t live like that. I had children to take care of and a life to reclaim.

Good news came to me after suffering through a test called a VNG – short for Videonystagmography. And yes, though worth it, it was horrible and I never want to take that again. This test gauges how well your eyes and ears work together to determine the level of balance function that remains in your vestibular system. Luckily for me, the result was in the normal range. Barely, but still considered normal. With this result, it means no serious surgeries would be recommended and my ENT was hopeful that we could combine conventional and alternative therapies to maintain my current level of functioning. My hope was and is, of course, to improve it. I was suddenly highly motivated and determined to find answers and a way to heal from this.

My answers resulting in a slow and steady healing of Meniere’s disease have come about in many forms. I discovered early on that I had severe allergies that were triggering Meniere’s symptoms which is highly common among those of us with Meniere’s. I continued hearing about healthy clean eating from specialists I encountered. My chiropractor continued asking me about what I was eating these days and talked about the idea of clean eating. I just wasn’t ready for it. My allergist had many times talked about the importance of probiotics and hinted at the possibility of food sensitivities and urged me to do a food elimination challenge. Again, I wasn’t ready for it. The acupuncturist that I enlisted for help with my sinuses gave me a handout regarding foods that cleanse the body and were aimed at healing my particular symptoms. I wasn’t ready for it. I had one foot in the door of a conventional mindset wanting a drug to solve my problems and one foot in the alternative therapies mindset which almost always includes dietary modifications relevant to your own personal needs. At that time I was taking three different prescriptions for my allergies which still weren’t solving the issue and taking one additional prescription specifically for Meniere’s disease. I simply couldn’t fathom the fact that what I was eating, just might be what was causing new allergies to develop and exacerbating existing issues. I sought out the help of a naturopathic doctor during this time and also experimented with a number of other natural therapies. I was finally convinced that I need to try modifying what I ate after my visit with the naturopathic doctor. The ND, like my allergist, agreed that I REALLY needed to try an elimination diet for a month to see if there were any obvious food allergies and she put me on a mild cleanse with the addition of probiotics. I agreed to try it. Just for one month.

That month seemed unending. It was a serious hard core elimination. No gluten. No dairy. No alcohol. No nuts. No eggs. No soy. No beef. No pork. Limited fruits. Limited sugars. Seriously… what on God’s green earth was I supposed to eat?!?!? Oh riiiiight. Greens. Lots of veggies (whine…. But I HATE veggies!!!). Lots of poultry and fish or other non-beef/pork meats. Good thing my husband is a hunter so I did have some venison in the freezer for variation. At least non-gluten grains were also on the okay list of things to eat. I must admit, the first week was the hardest. I had severe cravings for dairy and sugary things. I really wanted my nightly glass of wine. All in all, I made it. After a full month of eating this way, I had detoxed my body of many cravings, and readjusted my sweet tooth and ultimately, was feeling really pretty darn good. I didn’t have any brain fog, the ringing in my ears had subsided to barely noticeable, I felt much thinner though I hadn’t really lost much weight, and most importantly I wasn’t dizzy. I had been mildly dizzy or off balance nearly every day for the past year so this alone had convinced me that maybe, just maybe there was something to this eating healthier thing.

The last part of the elimination challenge was to re-introduce each of the foods that were eliminated one by one with at least 3 days between the introduction of the next. By doing so, I discovered there was most certainly a link between dairy and an increase in allergy and Meniere’s symptoms. Gluten was questionable so I didn’t really eliminate it completely. The other food items seemed to be fine. I eventually read a number of studies that indicate that people with Meniere’s disease are often affected by gluten (or other food sensitivities). I had also read a number of studies that indicate persons who have a sensitivity to dairy are highly likely to also be sensitive to gluten. After further research, I decided that eating clean and eating significantly less gluten and dairy (if any) was the best solution for me. So here I am, eating clean and healing one plate at a time.

Today, now 3 years later and two years after committing to eating clean, I am slowing healing. I no longer feel like I’m walking on a boat every day and feel capable of driving much more often and have gained back my independence. The major vertigo has all but disappeared and my hearing has improved greatly in my good ear and is more stable so I feel much more confident talking on the phone and no longer miss half the conversation. I feel like a better wife and mother. I’ve been able to discontinue using all drugs for both Meniere’s and my allergies except for on a very occasional basis. Check out my natural solutions for Meniere’s page and natural solutions for allergies page to learn what worked for me. I sincerely hope that my learnings and struggles can help you heal too.

Digiprove sealCopyright secured by Digiprove © 2014


23 thoughts on “My Life with Meniere’s”

  • I found your blog very interesting. Since allergies are so prevalent in my children, I was interested in the clean eating. It has motivated me to learn more about it. I hope your condition continues to improve. Best Wishes Connie

  • So great reading this article. I waa diagnosed about 6 months ago after 3 spinning episodes. I eat pretty healthy but have found myself craving salt like crazy at least every couple of months. Has anyone experienced this?

    • Hi Lorena! I remember craving salt like crazy too when I first cut a lot of sodium out of my foods. Have you tried Himalayan pink salt by chance? It has a nice intense salt flavor but isn’t quite as heavy on sodium as regular table salt. Maybe that would help with the craving while providing a number of other minerals too. I love it!

  • Hey! I constantly feel like I’m on a boat everyday and often wonder if food allergies could be the cause! How long did it take for you to see a difference? Did the ground feel bouncy when you walked?

    • Hi Josie! YES!!! That’s exactly how I felt… like I was walking on a boat all day long or like in a children’s bounce house 🙂 I tried an elimination diet challenge that removes any and all major allergens (dairy, gluten, soy, nuts, eggs, no added sugars and I can’t remember the other three) for an entire month and then re-introduces them one by one spaced at least 3 days apart, I noticed I felt significantly better after about two weeks and continued to improve. That’s how I discovered that I was sensitive to dairy. When I tried to add it back into my diet after eating really clean for a month I immediately felt the ill effects within hours of consuming dairy. I can now tolerate cheeses but still stay away from liquid dairy as that still bothers me. I would definitely recommend trying a hardcore eliminate diet for a month. At least you’ll know then if any of the major food allergens are causing your symptoms or not. Even if you end up not being allergic or sensitive to any of those foods, you’ll still feel so much better!

      • I’m also pregnant right now.

        When I walk the ground feels bouncy and feels closer than it really is when I walk.
        What things did you eat?

        Did you eat chicken?

        • You’re so young to be feeling that way! I SO know that feeling. Anyway, I ate a lot of rice, beans, veggies upon veggies, fruits, healthy fats like avocado and coconut and a lot of meats focusing on poultry (yes chicken, duck, turkey, pheasant) but no eggs. Since you mention you’re pregnant, if you do try an elimination challenge, I’d start with the two most likely allergens for a month – wheat (gluten) and dairy. You’ll want to be sure you don’t inadvertently decrease your total calories as that wouldn’t be good for a growing baby 🙂 If you don’t feel any results by eliminating wheat and dairy, then you could always try the other allergens later. When I cut dairy, I added more meats and especially avocado to make up for the missing calories and the healthy fats in avocado or coconut milk will keep you fuller longer. Just be sure you’re also getting tons of veggies – that’s actually the most important for a variety of nutrients for your body. Did you feel the boat-walking sensation before you were pregnant? I ask because it could be pregnancy related as well – lots of strange things happen or are exacerbated by being preggers especially since increase in blood pressure or hormone changes can put pressure on the balance nerves in your ears which could cause the same boat walking feeling.

          • I started feeling dizzy in December (just off balance, I described it as one leg feeling longer than the other), & I got pregnant in feb. It did start up as I got pregnant. After driving my head is real swimmy for about a half hour so. I got 29 days until my princess is due 🙂

  • Kari, reading your story brought me to tears because that’s been my life for the past 6 months!! My husband found your site online and finally somebody has gone through what I am. I was so relieved that there may be some relief ahead. I’m trying to eat clean, it’s the hardest thing ever!! Low sodium, no alcohol, caffeine, preservative free. Mainly chicken, fish, veggies, fruit, coconut oil. I’m already lactose intolerant so I only use almond milk for a morning smoothie. I will try gluten free and give up the eggs too…anything to get better. Right now only on a diuretic and diet. Thanks for giving me hope!!!

    • Karen, I’m sorry you’ve been going through this 🙁 It’s miserable, I know. Eating clean is definitely a challenge but so well worth it. I remember being at that same phase of “I’ll just try ANYTHING to feel better”. You can do it, don’t give up! Fingers crossed that you can find what’s triggering your symptoms soon and be able to manage them and heal. Within you a Happy Holidays!

  • Been adjusting to life with Menieres for last year (had no idea what it was!!)
    ENT said I don’t have to re-evaluate for a year & redo hearing test, kidneys don’t like Maxide, really trying to watch diet but am so tired most days, sometimes totally spent after a work day, so I’m taking one day ata time -thanks to your experience going to concentrate on allergies & intestinal issues. Thanks so much, helps to know someone else has this.
    I really think there is a correlation between having a crown done & this starting a couple of weeks later

    • Hi Cheryl, It’s pretty amazing how many of us there are living with Meniere’s. I didn’t do well with Maxide either when I tried it. I hope you can find your triggers and keep the symptoms under control. You very well could be right about the correlation with your crown being done. I’ve heard many stories of people with dental work (especially if it’s the metal kind) or TMJ that end up with meniere’s symptoms 🙁

  • Took your suggestion about magnesium-this week I’ve not been as tired.
    Now to get ringing to not be at top of chart.
    Weather changes really affect me but this weeks 3day storm was not as bad & I think the difference was the magnesium-thanks😀

  • Hi there,
    got diagnosed thee years ago with this illness, been fairly stable, met another person who also suffers today, she suggested cutting the dairy as well, i’m definitely going to try it although my hearing is about trashed, keep up the good work.
    greg.

    • Hi Greg, thanks for the note! I thought my hearing was a lost cause but it did improve a bit after making dietary changes so hoping some of your hearing improves as well after cutting dairy. Good luck!

  • I was just diagnosed w Ménière’s Disease, I’m 27 and a professional photographer. I noticed tinnitus, vertigo, brain fog, etc about 3 years ago after I photographed a music festival. I thought to myself oh maybe I had tinnitus and hearing loss because of shooting concerts and weddings (loud loud music). Turned out I have MD, my ent is absolutely amazing and constantly helping me out with trying to get a grip on it. She did say I may need a hearing aid, waiting on the results of my 4th hearing test. I’m definitely struggling w eating because I’ve cut out processed food and am down to about 800mg of sodium a day and eating the same things over and over. I don’t consume dairy or meat. Needless to say it’s been an interesting few months. Still trying to figure out my triggers. It’s been difficult doing that.

Leave a Reply

Your email address will not be published. Required fields are marked *


Optimization WordPress Plugins & Solutions by W3 EDGE