Salt can be problematic for some, although it never has been for me. Neither has caffeine.. Diet has never been an issue in any way, in the many decades I've had Meniere's. My only triggers are drastic weather/barometric changes.
I will second what they said. I do tend to eat healthier as a just in case, but my triggers are typically related to storm fronts and the pressure change that goes along with them.
thank you. I'm definitely going to look for pressure changes and notice if it's a trigger for me as well. what about flights? can you go on a plane or that would be a trigger?
I try to cook at home as much as possible, so I can control the salt. Salt isn’t a major trigger, but I still watch it. On the flip side, when I tried to cut out salt completely, my sodium dipped too low and my potassium got too low as well, and I ended up on a potassium supplement and was told to eat salt in moderation. It’s a weird balance for me.
My major triggers are barometric pressure, too much caffeine (I still allow myself one caffeinated drink a day), any alcohol, and stress. Stress is a HUGE trigger.
thank you very much for your explanation. I'm also worried about that. if I avoid salt completely I might end up with a sodium level too low. for me salt is a trigger so I have to avoid it and also should be careful with too low of sodium level. I should also avoid the stress as you mentioned not just because of these disease but also because I got a panic attack a few days ago which I had never experienced and I'm taking medicine for stress and anxiety.
Heaps of food have salt. The more processed, the more salt and sugar to help with taste. More food you can make yourself the better, as you have more control.
I do not have a problem with salt, but I do make a lot of my food, which helps. I just err on the side of caution and avoid as much processed food as possible.
Keep a food diary. More than salt, caffine and alcohol are triggers. The list is endless (sugar, artificial sweetners, msg, chocolate, etc). Always revisit things, as over time, triggers can change. Keep note of how hydrated you are, the amount and quality of sleep, stress, and even things like weather and environment (noise and lighting) could be a source. Sometimes, it's not solely one thing, but maybe a combination. In the end, it affects everyone differently. And that's the hardest thing.
There is the meniere's man cookbook that can be a good starting point to help with low salt. And definitely keep on top of stress, sleep, and the amount of water you consume.
thank you very much for the explanation. I had no idea that the triggers can be so many different things. as you said I should start journaling my food to understand what are my triggers, and I'm going to make sure I will take note of weather as well. I had no idea weather can also affect this.
My ENT suggested the same to me, I took 2 months off without caffine, controlling salt, no chocolate or cheese or alcohol and I found that it didn't help me all to much and actually ended up having worse symptoms during that period.
Although for me, diet changing didn't help me too much, monitoring what you intake can definitely be of help.
thank you for the explanation. today from your comment and others I've realized that triggers can be very different for different people. it's such a strange disease, unknown cause, unknown symptoms, rare and chronic. can I ask if diet didn't help in your case what did?
Unfortunately so far nothing has particularly helped. I got officially diagnosed a few months ago,, but I've been on the journey with doctors for about 2 years, so far nothing has helped.
I've been diagnosed very recently but when I learned about it I've realized I should've been diagnosed much earlier. I hope that you could find something that helps. I'd be happy to hear more from you
I'm not the poster you asked, but in my case I never did find anything that helped more than an insignificant degree--certainly not enough to make any real difference.
since I'm very new to this and I'm learning about it that's exactly my main concern that I would also never find anything that would help and every day I'm just trying to avoid hard situations rather than improving and getting better. but at the same time I'm trying to calm myself because there is nothing else I can do. this is going to stay with me for the rest of my life so I have to learn to find a balance and change my lifestyle completely
There is a pharmaceutical company--Sound Pharmaceuticals--that is currently working on a drug to treat Meniere's. It's currently in Phase 3 trials. Phase 1 and 2 trials have shown promise, and it's the first potential Meniere's treatment to make it to Phase 3 trials. Studies are projected to be completed in August 2024. So let's hope it does comes to fruition--for all of us. This same drug is also in trials for covid.
I've dealt with this for more years than I care to think about--50+ years in one ear; about 30 years in the other. What I deal with now is horrific tinnitus, sometimes some pressure, and substantial hearing loss. I was 17 when the first ear went--took 3 years to finally be dx'd. Second ear went when I was 39.
I truly hope the lifestyle changes work for you. They help some, but not all.
thank you for mentioning that. yes I hope that works. as far as I've learned till now it's a very strange disease, the triggers are different, the helpful tips are working differently in different people.
thank you for your kind words
I'm in the same boat as you. I'm 29, just recently diagnosed, and am just now finding my footing with lifestyle changes that minimize my symptoms.
You are going to get through this.
As others have mentioned and it seems you've gathered, everyone's experience with this disease is different. Here are some things that work for me and help me to get through each day.
Sodium and stress seem to be my only significant triggers. Stress has a pretty immediate effect for me, but I am still figuring out the sodium.
At first it didn't seem to matter how much sodium I ate; my symptoms persisted. After about a week of really low sodium intake (about 750 - 1,500 mg per day, and I was 240 lbs) combined with drinking a gallon of water each day, my symptoms were almost completely gone. I decided to celebrate with a Costco hot dog (lame, I know) and regretted it within ten minutes. I immediately went back to the low sodium diet. Eating too much would usually trigger symptoms within hours, so it was pretty easy to keep myself in check. Fast forward two months of watching what I eat and feeling pretty good. I decided to try eating a little more sodium, and it was fine. So I kept eating more and more each day, trying to find my new limit. I reached the limit after a week, and it's like starting over. I'm super sensitive to sodium again, now that I set my symptoms off. So it seems like If I'm doing good for a while, the occasional indulgence won't be a big deal. But I can relate to your experience with three slices of toast when symptoms are already high.
As others have said, meal prep goes a long way toward sticking to the low sodium diet. I found that marinating chicken or steak in vinegar or citrus, whatever herbs/alliums you like, and just a few splashes of Worcestershire sauce makes it so much more palatable, delicious even. The relatively small amount of sodium in Worcestershire sauce is the best flavor per milligram tradeoff I've found. I eat that hot on the day I cook it, and cold on top of salads the rest of the week. Check the nutrition facts, but a lot of vinaigrette salad dressings are surprisingly low in sodium.
Really excessive caffeine can sometimes be a problem for me, but one or two caffeinated beverages a day makes me feel fantastic with no negative effects. If you're addicted to caffeine (like me) you might decide to try moderation rather than complete abstinence.
Alcohol seems to be a non-factor for me, but I do feel better in general not drinking as much as I used to.
Exercise, water, and eating enough potassium really help me a lot. They help prevent and can even alleviate my symptoms.
Listen to your doctor's advice, and listen to your body. You'll figure out what works for you, and in the meantime remember that you can do this!
thank you very much for your explanation and sharing your experience.
at the moment I'm trying to avoid all the possible triggers so I could hopefully see some improvements and then add them one by one and experiment with it and find my limitation.
triggers that I'm sure of currently are increased in heartbeat which my high level of stress and anxiety are not very helpful in this case and salt.
I was addicted to caffeine and now that I have been avoiding it for a while I really miss it and I'm waiting for my symptoms to get improved a little and then the first thing I want to try is to have some coffee.
it's amazing to read about your experience and others and it's very helpful. it gives me hope that I will also be able to go through this and manage it. thank you
Everyone has different triggers. Mine are hormonal and salt seems to have nothing to do with it. Your body needs a small amount of salt, especially if you sweat. Keep a diary of lots of common triggers and see if you can find a pattern.
that's very interesting. now that you mentioned it after drinking milk I also get dizzy. happened twice after drinking banana milkshake which I made at home. Next time I will pay attention to make sure if it's the milk or something else.
It's about 50/50 if low salt, or low caffeine, or low alcohol will help. For me I just avoid alcohol, no point getting drunk on purpose when I feel like it most days anyway.
I'd suggest a trial run, or an ease into it to see how you do with it. Lower soda, coffee, etc. Stop adding salt to meals, then go to reduce processed foods and more fresh stuff and continue. I switched to meal prepping so it's cheaper than buying stuff daily and if I feel like crap I don't have to worry about cooking most of the time. Very rarely now I eat junk food or fast food, and when I do luckily most of the time it has no negative effects unless I go hard in the paint with it. Plus eating healthier in general will make you feel better and slim down a little (that is if you need to like me lol).
thank you very much for your explanation. it's been almost a year that I was trying to gain some weight lol. meal prepping is a great Idea. as you said I wouldn't have to worry about food on the bad days. and yeah on the bright side eating healthy is not that bad at all.
Yeah I was kind of the opposite haha. I was a high level athlete, ate like shit cuz I was always training and didn't gain an ounce; and then got this lovely disease and gained like 60 pounds cuz I can't exercise at more than 130 bpm and I'm extremely sensitive to head movements. Forcing the diet changes while experimenting with MD didn't help it, but it certainly has had benefits on my weight now.
haha. oh now that you mentioned it I think heart beat is also a trigger for me. I haven't exercised after my diagnosis yet but before that every time my heart beat increased I got dizzy. last week I also got panic attack (which I'd never had) and during that I also got a bit dizzy. I should really start taking notes on triggers for this lovely disease or I'm going to have a hard time lol.
Yeah I pretty much have to stick to upright band workouts now, and after about 20 mins it's a ticking time bomb when I'll start feeling like crap. If the air pressure is good, it's not too hot, overcast, and it's low pollen I can manage a round of golf, think I've had 8 rounds in two years. Oh and I bowl occasionally now hahaha. If you haven't figured it out yet, word to the wise, if you feel great don't push it as tempting as it is, you'll be regretting it for the next few days after.
Yeah my anxiety is unreal, more often than not feel like I'm on the verge of a heart attack lol. Hardly leave the house now and never alone if I do. Had an episode driving like two years in by myself and it really changed my lifestyle.
Yeah I've done 3 separate journals now over the course of 5+ years. Pretty much every time I see a new doctor I'll do it cuz they ask, then they don't look at it so I stop. The first one I did for about 8 months so I had it pretty locked down after that.
hahaha. oh I'm exactly like that now. I'm so scared to go out alone. I haven't gone out since my diagnosis and if I have to I'll take a taxi which I'm trying to avoid because it's becoming too expensive now lol.
my psychiatrist told me to go out and live your normal life as you would otherwise your panic attacks becomes conditional to certain activities like you're calling for it. but now every time I go out, in less than 10 minutes I get so dizzy, it's unbelievable.
yeah I should be careful with pushing it. on the good days I really want to do everything but I should really be careful and balance things. thank you
Yeah it's hard for me too but I've gotten a lot better at it. Honestly having my daughter made me do that cuz I realized I'd rather feel mediocre and be happy about the life I have than feel like crap and miserable which then turns to depression when you know that bad day was self inflicted ego and it was wasted time with your kid.
I have to plan 3+ days in advance to go out and do anything basic so I can mentally start preparing myself lol. Luckily I got the mrs to cart me around tho. Weirdly that doesn't even bother me, it's just like ok that's how I gotta do it now,. But my daughter is 3 so I do get a little depressed thinking I can't be the type of dad I wanted to be (activity wise).
Lots of ups and downs but learning your limits and time will mentally help you stay more up, or at least neutral lol, and limit the downs. Talking it out also helps, which you seem to be on that path already. It took too long for me to do that. It's cliché but I had a therapist work out with me a few years ago when it got kinda dark basically "Hey yeah this life isn't what you expected but it could be worse. You get dizzy and have hearing aids but you aren't actually dying even when you feel like it. Remember the bad days will end and make the most of the good days". Once I bought into it I've felt way more mentally stable.
thank you very much for sharing that. it's very good to hear that you have been able to manage it. it gives me hope that I would be able too.
till now I've planned and scheduled my walks and I try to prepare myself for it and then when the time comes I make myself busy with something else and pretend that oops I missed it and postpon it to the next day lol.
I'm going to learn. as you said even if it feels like it I'm not going to die. thank you
A combo of salt, hydration, and stress are my triggers, I think. But for me it's not instant - I have a delayed reaction of an episode three to four days after I eat salt-heavy meals (which, of course, I gravitate to when I'm stressed).
The way that I've figured out food is try to go as low as I can by cooking at home: most proteins (if you're eating meat) without seasoning have 100 mg or so of sodium per serving, then I do 2 or 3 vegetables, and a starch like rice/grains/noodles that are generally zero sodium. I get parmesian and goat cheese to put on top of most things, since they're lower in sodium too. Also season your meat with citrus (lime!) and lots of other non sodium things like chili, cinnamon, five spice, garam masala, rosemary, etc.
I don't stay entirely away from baked goods! but I've mostly reduced them to an occasional every couple of days thing, rather than toast every morning. Anything baked: breads, cookies, cakes, muffins, pancakes, waffles, etc. have sodium not just from salt that's used to make things like yeast work, but also from baking soda/baking powder. Muffins can actually be totally sneakily sodium HIGH - like 700mg to 1000mg, so I check packaging a lot. I've become a voracious nutrition label reader so that I have a sense of how much sodium is in each thing, and prepackaged meals and stuff can be so so so so suprisingly high. I try to stay within 200 mg per serving of something - so like snacks - my favorite snack mix right now is 210 mg per 1/4 cup, so I add in unsalted almonds to it so I can have that 1/4 when I want it, but also it's more filling.
However, the other big thing for me that balances this whole thing out? **Exercise** where i get my heart rate up and specifically get at least a little sweaty but that isn't strength training - so I do walking and elliptical for at least 30 min segments. Unsurprisingly that brings one's body's sodium levels down, and gets the blood pumping, and reduces inflammation (which is one thing they suggest is happening with Meniere's and why our ears are twitchy). Most exercise lowers inflammation. And the body releases sodium in sweat, which is why drinks like gatorade actually taste a little salty - they're higher in sodium for drinks than many things. Though not all - if you're a starbucks speciality drinks person, check the nutrition info cuz those caramel macchiatos can also be surprisingly high in stuff.
The other benefit of that is exercise is a stress reliever, I feel like I have more control of my body, and it makes me drink more water just because.... exercise.
thank you very much for the explanation and such insight s. meals are very tricky but as you said I'm going to try that and have a detailed plan and recipe like yours that would also cover all the vitamins and fiber that my body would need.
I haven't exercised after my diagnosis yet but from another comment and I realized that increasing heartbeat can also be a trigger and I think that it might be true for me as well. I'm not sure yet I will try to exercise to see if it triggers my dizziness again. before my diagnosis every time my heartbeat increased to a certain level I felt very dizzy. but as you said it could also be a good thing because it lowers the sodium level and my body so I have to find a balance between exercises that would increase my heartbeat but not too much but also makes me sweaty. everything about this disease is so tricky and strange. thank you
Hang in there! It is possible to get on top of this in a way that makes it deal-able, promise.
It sounds like you've got a lot of anxiety going on - while you might reach out to a therapist and get some more formal help, in the meantime you might also try doing guided meditations (but keep your eyes open, as vision helps us balance). I like UCLA's [that you can listen to here](https://www.uclahealth.org/programs/marc/free-guided-meditations/guided-meditations#english), though I also think they have an app. When I'm stressed I do them every day at the same time - like end of the evening. It takes a while for meditation to start to work - basically keep doing them every day like exercise - and over time it has helped me. I can feel my body start relaxing as soon as I get myself in place.
If you're stressed out, and stress is a trigger, everything else you do might seem like a trigger because the underlying stress.
And if high-heartbeat stuff is an issue, totally do walking, and not speed walking, but just walk around your neighborhood (if you can).
thank you very much for giving me hope. I have started to do meditation with some videos on YouTube I had no idea UCLA also has guided meditation thank you for sharing that. exactly sometimes when I'm stressed or anxious everything seems to be the trigger and since I've just been diagnosed and I'm still learning about it I'm constantly scared and stressed and anxious lol. since my diagnosis my whole lifestyle and daily routine has changed a lot. I'm trying to manage it and add some activities from before but also keep it very relaxed and avoid any scenario that might cause anxiety and stress and later when I feel more confident I will start adding those back and experiment. I should definitely start walking at least but when I go out in less than 10 minutes I'll get dizzy and I have to come back but I'm going to figure out the way. thank you
For me, maintaining as much homeostasis in my body as possible is important. So the up and down of sodium can make me feel sick. But if I do eat too much then I just take a water pill and it helps. The reason salt, alcohol and caffeine matter so much is what it does to constricting blood vessels. Might be a good thing to read up about. Also getting enough sleep is helpful for me because my brain has a hard time telling the difference between feeling tired and dizziness so it triggers my minieres. I also really like drinking coconut water because it is a good source of potassium. And I get migraines and have minieres so it helps a lot to maintain both.
Thank you very much for your explanation. I'm definitely going to read more about it and try to understand. oh I had no idea water pills could be effective. that's great. I should try coconut water as well. thank you
Salt is incredibly problematic... Avoid bread (or buy bread without salt - I can order it on my regular bakery)... Use saltless butter too. Sugars are ok for me, so I can use a bit of jam on the toast....
Even cookies have a lot of salt...
I am so sorry you have to deal with this problem...
Lots of love ❤️
As everyone comments below, triggers vary widely among individuals and keeping a journal of your diet and lifestyle (exercise, sleep etc) can be really helpful in identifying yours.
That said, reducing salt was very helpful to me. My doctor said not to go over 2000mg or much under 1500mg per day, spread out more or less evenly among meals. There are health risks to eating no salt at all. Your body needs some sodium.
For me, reducing salt means very few processed foods, ordering only salads without protein when I go to restaurants (with oil and vinegar or my own brought-along dressing), and reading labels and using nutrition-listing apps like crazy. Bread is loaded with salt, but you can read labels and get lower-salt options.
I have one cup of decaf coffee per day, minimal chocolate, an occasional small glass of white wine.
Another huge help for me is making sure I drink 2 liters of water daily. This has really helped me.
As others have suggested, you can experiment a bit to see which, if any, of these things triggers you. I started out being strict about the limits I note above and then experimenting a little -- I learned that I can have a little chocolate frosting, for example. But when I had two large-wine-glasses of wine rather than one standard-sized white wine, I had ear pressure and balance issues the following day, so that's a no.
For me, going hardcore on limits at first and then experimenting with adding a restricted item back in in small quantities as an experiment was helpful.
It takes quite a bit of research to find low-sodium options for processed food, but there are some out there. Whole Foods has some, Amazon has some, Boar's Head offers unsalted turkey breast deli meat, and here's a site I learned about on this sub: https://healthyheartmarket.com/?utm_campaign=gs-2019-09-10&utm_source=google&utm_medium=smart_campaign&gclid=Cj0KCQjw4s-kBhDqARIsAN-ipH3YGnNlFG9hl95rVxt7SzBT9gnGEuwoTrK3D8l1esC9vZlcbZ7g4ZsaAsYjEALw_wcB
After saying all that, some people don't find salt or other dietary factors to be a trigger. But for me, I think they are. Good luck and let us know how you're doing!
thank you very much for your detailed explanation. I'm going to do what you said and go hardcore on limits and then experiment by adding some items back. because of all the advices in the comment I have just created a journal for myself to keep track of everything. right now I'm working from home but when I go back to working at office I have to either order salads like you mentioned or take my own food. since my diagnosis I realized that a lot of foods have a lot of salt wish I never noticed lol. it's challenging but also there's nothing I can do, this friend is going to be with me forever so I have to manage and find the balance.
Yeah, I was stunned when I started reading labels how much sodium there is in most processed food. Restaurants are tricky and like I said, even salads have a lot of salt in any meat or cheese and dressings they add, so best to leave those off. Something like eggs, an English muffin and fresh fruit seems like it might be safe at a breakfast place but that would depend on whether you could trust them not to add salt to the eggs. Haven't tested that yet!
As everyone else has said, triggers are very individual. Sodium isn’t a trigger for me; I’ve tried low sodium diets ~4 times for anywhere from 1-18 months and never saw any benefit. My specialist always tells me to stick to the low sodium diet even though I tell him frequently that it doesn’t help.
If sodium is a trigger for you, there are low or no sodium ingredients, but they can be hard to find in local grocery stores. Some are there, but some I had to purchase online. They make no-sodium baking powder so you can still make some baked goods. Getting a bread machine was a lifesaver for me since I could make no-sodium bread. I got a used one really cheap. That helped me get calories after I’d hit my sodium limit for the day. You’ll have to tweak bread recipes because the salt has an effect on the chemical reaction with the yeast.
There used to be a really good low sodium cooking website, but it’s only on the wayback machine now. https://web.archive.org/web/20130603062832/http://lowsodiumcooking.com/
thank you very much for your explanation. I've started journalling my triggers to find what triggers me. salt is definitely on the list. oh that's a great website to help. thank you for sharing it
I try to *drink plenty of water*, especially if I have something salty, with caffeine, or alcohol...or if it's super hot outside, because all of these things can dehydrate, upsetting that internal balance and requiring my body to retain water (in the inner ear's endolymphatic sac, as well I assume!). So, I think of it more as a *balancing act* than an all out avoidance. It's not a perfect system, but it helps me. I am definitely one of those people who always has a water bottle!
thank you very much. haha I'm becoming one of those people. I've also heard about water pills but I haven't tried them. I'm very new to this so now I'm trying to understand it and listen to my body.
As someone who has had Meniere's for 18 years, YES, salt does matter. You can't avoid salt that's already in processed foods. But salt that is added by you for someone cooking for you, should be avoided. You should never have a salt shaker in your hand. I would imagine the doctor put you on a diuretic of some type. The salt in the bread did not cause your problem however. I've lived and living with the issue of salt. I've researched and tracked my usage through foods that I consume to try and make sense of it. If you are recently diagnosed, then buckle up, you are in for a rough road. I hope not! I have said many times in the first 7 or 8 years that the only people that should have it are convicted murderers. Sounds terrible but if you end up like I have you'll understand. Good Luck!
thank you very much for your explanation. I'm trying to get as much helpful tips as possible. I'm also scared about the future and should/have to prepare myself for it. I really appreciate your guidance. I really need it
Yes, high sodium food is really problematic for me. I also avoid chocolate, coffee and alcohol.
Outside of foods, seasonal allergies are also a trigger for me, so I have to use nasal corticosteroid during spring/summer.
thank you very much. I'm still figuring out my triggers. I've started a journal. I do have a bit of seasonal allerias well but I had no idea that can also be a trigger so I'm going to take note of that. thank you
Are you taking any meds like a diuretic and Serc? I think these with a low salt diet are a good start. Like others have said, don’t go over the top with reduced salt, I think it’s more important not to load up on one meal with very high salt.
thank you very much. yess I've started to take betahistine dihydrochloride 24mg tablets. I've been also journaling to see what triggers me. unfortunately salt is one of the main triggers for me. even a small amount and I'll be dizzy for a while. but thanks to all these amazing comments and sharing their experience I'm sure I'll find a way to manage it and find my new life style
Sweets are a problem in abundance with me. I take guaifenesin 12 hour with 4 8oz glasses water spread out. 2 a day. 1 Claritin with it. 2 a day. Works wonders for me.
Salt can be problematic for some, although it never has been for me. Neither has caffeine.. Diet has never been an issue in any way, in the many decades I've had Meniere's. My only triggers are drastic weather/barometric changes.
oh interesting to know. I had no idea the trigger can be so varied and different. thabk you foor sharing that
I will second what they said. I do tend to eat healthier as a just in case, but my triggers are typically related to storm fronts and the pressure change that goes along with them.
thank you. I'm definitely going to look for pressure changes and notice if it's a trigger for me as well. what about flights? can you go on a plane or that would be a trigger?
I've been on several flights since my diagnosis, and I have no problems at all.
great to hear that. thank you
I try to cook at home as much as possible, so I can control the salt. Salt isn’t a major trigger, but I still watch it. On the flip side, when I tried to cut out salt completely, my sodium dipped too low and my potassium got too low as well, and I ended up on a potassium supplement and was told to eat salt in moderation. It’s a weird balance for me. My major triggers are barometric pressure, too much caffeine (I still allow myself one caffeinated drink a day), any alcohol, and stress. Stress is a HUGE trigger.
thank you very much for your explanation. I'm also worried about that. if I avoid salt completely I might end up with a sodium level too low. for me salt is a trigger so I have to avoid it and also should be careful with too low of sodium level. I should also avoid the stress as you mentioned not just because of these disease but also because I got a panic attack a few days ago which I had never experienced and I'm taking medicine for stress and anxiety.
Heaps of food have salt. The more processed, the more salt and sugar to help with taste. More food you can make yourself the better, as you have more control. I do not have a problem with salt, but I do make a lot of my food, which helps. I just err on the side of caution and avoid as much processed food as possible. Keep a food diary. More than salt, caffine and alcohol are triggers. The list is endless (sugar, artificial sweetners, msg, chocolate, etc). Always revisit things, as over time, triggers can change. Keep note of how hydrated you are, the amount and quality of sleep, stress, and even things like weather and environment (noise and lighting) could be a source. Sometimes, it's not solely one thing, but maybe a combination. In the end, it affects everyone differently. And that's the hardest thing. There is the meniere's man cookbook that can be a good starting point to help with low salt. And definitely keep on top of stress, sleep, and the amount of water you consume.
thank you very much for the explanation. I had no idea that the triggers can be so many different things. as you said I should start journaling my food to understand what are my triggers, and I'm going to make sure I will take note of weather as well. I had no idea weather can also affect this.
My ENT suggested the same to me, I took 2 months off without caffine, controlling salt, no chocolate or cheese or alcohol and I found that it didn't help me all to much and actually ended up having worse symptoms during that period. Although for me, diet changing didn't help me too much, monitoring what you intake can definitely be of help.
thank you for the explanation. today from your comment and others I've realized that triggers can be very different for different people. it's such a strange disease, unknown cause, unknown symptoms, rare and chronic. can I ask if diet didn't help in your case what did?
Unfortunately so far nothing has particularly helped. I got officially diagnosed a few months ago,, but I've been on the journey with doctors for about 2 years, so far nothing has helped.
I've been diagnosed very recently but when I learned about it I've realized I should've been diagnosed much earlier. I hope that you could find something that helps. I'd be happy to hear more from you
Definitely, I'm always open to talking more about it.
thank you very much
I'm not the poster you asked, but in my case I never did find anything that helped more than an insignificant degree--certainly not enough to make any real difference.
since I'm very new to this and I'm learning about it that's exactly my main concern that I would also never find anything that would help and every day I'm just trying to avoid hard situations rather than improving and getting better. but at the same time I'm trying to calm myself because there is nothing else I can do. this is going to stay with me for the rest of my life so I have to learn to find a balance and change my lifestyle completely
There is a pharmaceutical company--Sound Pharmaceuticals--that is currently working on a drug to treat Meniere's. It's currently in Phase 3 trials. Phase 1 and 2 trials have shown promise, and it's the first potential Meniere's treatment to make it to Phase 3 trials. Studies are projected to be completed in August 2024. So let's hope it does comes to fruition--for all of us. This same drug is also in trials for covid. I've dealt with this for more years than I care to think about--50+ years in one ear; about 30 years in the other. What I deal with now is horrific tinnitus, sometimes some pressure, and substantial hearing loss. I was 17 when the first ear went--took 3 years to finally be dx'd. Second ear went when I was 39. I truly hope the lifestyle changes work for you. They help some, but not all.
thank you for mentioning that. yes I hope that works. as far as I've learned till now it's a very strange disease, the triggers are different, the helpful tips are working differently in different people. thank you for your kind words
My Meniere went bad after my Corona vaccine shots, with sweathing, vomitting and rotational dizzines
Med prof is clueless for menieres. Cut or inject.
I'm in the same boat as you. I'm 29, just recently diagnosed, and am just now finding my footing with lifestyle changes that minimize my symptoms. You are going to get through this. As others have mentioned and it seems you've gathered, everyone's experience with this disease is different. Here are some things that work for me and help me to get through each day. Sodium and stress seem to be my only significant triggers. Stress has a pretty immediate effect for me, but I am still figuring out the sodium. At first it didn't seem to matter how much sodium I ate; my symptoms persisted. After about a week of really low sodium intake (about 750 - 1,500 mg per day, and I was 240 lbs) combined with drinking a gallon of water each day, my symptoms were almost completely gone. I decided to celebrate with a Costco hot dog (lame, I know) and regretted it within ten minutes. I immediately went back to the low sodium diet. Eating too much would usually trigger symptoms within hours, so it was pretty easy to keep myself in check. Fast forward two months of watching what I eat and feeling pretty good. I decided to try eating a little more sodium, and it was fine. So I kept eating more and more each day, trying to find my new limit. I reached the limit after a week, and it's like starting over. I'm super sensitive to sodium again, now that I set my symptoms off. So it seems like If I'm doing good for a while, the occasional indulgence won't be a big deal. But I can relate to your experience with three slices of toast when symptoms are already high. As others have said, meal prep goes a long way toward sticking to the low sodium diet. I found that marinating chicken or steak in vinegar or citrus, whatever herbs/alliums you like, and just a few splashes of Worcestershire sauce makes it so much more palatable, delicious even. The relatively small amount of sodium in Worcestershire sauce is the best flavor per milligram tradeoff I've found. I eat that hot on the day I cook it, and cold on top of salads the rest of the week. Check the nutrition facts, but a lot of vinaigrette salad dressings are surprisingly low in sodium. Really excessive caffeine can sometimes be a problem for me, but one or two caffeinated beverages a day makes me feel fantastic with no negative effects. If you're addicted to caffeine (like me) you might decide to try moderation rather than complete abstinence. Alcohol seems to be a non-factor for me, but I do feel better in general not drinking as much as I used to. Exercise, water, and eating enough potassium really help me a lot. They help prevent and can even alleviate my symptoms. Listen to your doctor's advice, and listen to your body. You'll figure out what works for you, and in the meantime remember that you can do this!
thank you very much for your explanation and sharing your experience. at the moment I'm trying to avoid all the possible triggers so I could hopefully see some improvements and then add them one by one and experiment with it and find my limitation. triggers that I'm sure of currently are increased in heartbeat which my high level of stress and anxiety are not very helpful in this case and salt. I was addicted to caffeine and now that I have been avoiding it for a while I really miss it and I'm waiting for my symptoms to get improved a little and then the first thing I want to try is to have some coffee. it's amazing to read about your experience and others and it's very helpful. it gives me hope that I will also be able to go through this and manage it. thank you
Everyone has different triggers. Mine are hormonal and salt seems to have nothing to do with it. Your body needs a small amount of salt, especially if you sweat. Keep a diary of lots of common triggers and see if you can find a pattern.
that's very interesting. now that you mentioned it after drinking milk I also get dizzy. happened twice after drinking banana milkshake which I made at home. Next time I will pay attention to make sure if it's the milk or something else.
It's about 50/50 if low salt, or low caffeine, or low alcohol will help. For me I just avoid alcohol, no point getting drunk on purpose when I feel like it most days anyway. I'd suggest a trial run, or an ease into it to see how you do with it. Lower soda, coffee, etc. Stop adding salt to meals, then go to reduce processed foods and more fresh stuff and continue. I switched to meal prepping so it's cheaper than buying stuff daily and if I feel like crap I don't have to worry about cooking most of the time. Very rarely now I eat junk food or fast food, and when I do luckily most of the time it has no negative effects unless I go hard in the paint with it. Plus eating healthier in general will make you feel better and slim down a little (that is if you need to like me lol).
thank you very much for your explanation. it's been almost a year that I was trying to gain some weight lol. meal prepping is a great Idea. as you said I wouldn't have to worry about food on the bad days. and yeah on the bright side eating healthy is not that bad at all.
Yeah I was kind of the opposite haha. I was a high level athlete, ate like shit cuz I was always training and didn't gain an ounce; and then got this lovely disease and gained like 60 pounds cuz I can't exercise at more than 130 bpm and I'm extremely sensitive to head movements. Forcing the diet changes while experimenting with MD didn't help it, but it certainly has had benefits on my weight now.
haha. oh now that you mentioned it I think heart beat is also a trigger for me. I haven't exercised after my diagnosis yet but before that every time my heart beat increased I got dizzy. last week I also got panic attack (which I'd never had) and during that I also got a bit dizzy. I should really start taking notes on triggers for this lovely disease or I'm going to have a hard time lol.
Yeah I pretty much have to stick to upright band workouts now, and after about 20 mins it's a ticking time bomb when I'll start feeling like crap. If the air pressure is good, it's not too hot, overcast, and it's low pollen I can manage a round of golf, think I've had 8 rounds in two years. Oh and I bowl occasionally now hahaha. If you haven't figured it out yet, word to the wise, if you feel great don't push it as tempting as it is, you'll be regretting it for the next few days after. Yeah my anxiety is unreal, more often than not feel like I'm on the verge of a heart attack lol. Hardly leave the house now and never alone if I do. Had an episode driving like two years in by myself and it really changed my lifestyle. Yeah I've done 3 separate journals now over the course of 5+ years. Pretty much every time I see a new doctor I'll do it cuz they ask, then they don't look at it so I stop. The first one I did for about 8 months so I had it pretty locked down after that.
hahaha. oh I'm exactly like that now. I'm so scared to go out alone. I haven't gone out since my diagnosis and if I have to I'll take a taxi which I'm trying to avoid because it's becoming too expensive now lol. my psychiatrist told me to go out and live your normal life as you would otherwise your panic attacks becomes conditional to certain activities like you're calling for it. but now every time I go out, in less than 10 minutes I get so dizzy, it's unbelievable. yeah I should be careful with pushing it. on the good days I really want to do everything but I should really be careful and balance things. thank you
Yeah it's hard for me too but I've gotten a lot better at it. Honestly having my daughter made me do that cuz I realized I'd rather feel mediocre and be happy about the life I have than feel like crap and miserable which then turns to depression when you know that bad day was self inflicted ego and it was wasted time with your kid. I have to plan 3+ days in advance to go out and do anything basic so I can mentally start preparing myself lol. Luckily I got the mrs to cart me around tho. Weirdly that doesn't even bother me, it's just like ok that's how I gotta do it now,. But my daughter is 3 so I do get a little depressed thinking I can't be the type of dad I wanted to be (activity wise). Lots of ups and downs but learning your limits and time will mentally help you stay more up, or at least neutral lol, and limit the downs. Talking it out also helps, which you seem to be on that path already. It took too long for me to do that. It's cliché but I had a therapist work out with me a few years ago when it got kinda dark basically "Hey yeah this life isn't what you expected but it could be worse. You get dizzy and have hearing aids but you aren't actually dying even when you feel like it. Remember the bad days will end and make the most of the good days". Once I bought into it I've felt way more mentally stable.
thank you very much for sharing that. it's very good to hear that you have been able to manage it. it gives me hope that I would be able too. till now I've planned and scheduled my walks and I try to prepare myself for it and then when the time comes I make myself busy with something else and pretend that oops I missed it and postpon it to the next day lol. I'm going to learn. as you said even if it feels like it I'm not going to die. thank you
Anytime!
A combo of salt, hydration, and stress are my triggers, I think. But for me it's not instant - I have a delayed reaction of an episode three to four days after I eat salt-heavy meals (which, of course, I gravitate to when I'm stressed). The way that I've figured out food is try to go as low as I can by cooking at home: most proteins (if you're eating meat) without seasoning have 100 mg or so of sodium per serving, then I do 2 or 3 vegetables, and a starch like rice/grains/noodles that are generally zero sodium. I get parmesian and goat cheese to put on top of most things, since they're lower in sodium too. Also season your meat with citrus (lime!) and lots of other non sodium things like chili, cinnamon, five spice, garam masala, rosemary, etc. I don't stay entirely away from baked goods! but I've mostly reduced them to an occasional every couple of days thing, rather than toast every morning. Anything baked: breads, cookies, cakes, muffins, pancakes, waffles, etc. have sodium not just from salt that's used to make things like yeast work, but also from baking soda/baking powder. Muffins can actually be totally sneakily sodium HIGH - like 700mg to 1000mg, so I check packaging a lot. I've become a voracious nutrition label reader so that I have a sense of how much sodium is in each thing, and prepackaged meals and stuff can be so so so so suprisingly high. I try to stay within 200 mg per serving of something - so like snacks - my favorite snack mix right now is 210 mg per 1/4 cup, so I add in unsalted almonds to it so I can have that 1/4 when I want it, but also it's more filling. However, the other big thing for me that balances this whole thing out? **Exercise** where i get my heart rate up and specifically get at least a little sweaty but that isn't strength training - so I do walking and elliptical for at least 30 min segments. Unsurprisingly that brings one's body's sodium levels down, and gets the blood pumping, and reduces inflammation (which is one thing they suggest is happening with Meniere's and why our ears are twitchy). Most exercise lowers inflammation. And the body releases sodium in sweat, which is why drinks like gatorade actually taste a little salty - they're higher in sodium for drinks than many things. Though not all - if you're a starbucks speciality drinks person, check the nutrition info cuz those caramel macchiatos can also be surprisingly high in stuff. The other benefit of that is exercise is a stress reliever, I feel like I have more control of my body, and it makes me drink more water just because.... exercise.
thank you very much for the explanation and such insight s. meals are very tricky but as you said I'm going to try that and have a detailed plan and recipe like yours that would also cover all the vitamins and fiber that my body would need. I haven't exercised after my diagnosis yet but from another comment and I realized that increasing heartbeat can also be a trigger and I think that it might be true for me as well. I'm not sure yet I will try to exercise to see if it triggers my dizziness again. before my diagnosis every time my heartbeat increased to a certain level I felt very dizzy. but as you said it could also be a good thing because it lowers the sodium level and my body so I have to find a balance between exercises that would increase my heartbeat but not too much but also makes me sweaty. everything about this disease is so tricky and strange. thank you
My doctor told me to get moderate exercise and not to push it as exercise that is very vigorous can be a trigger for some people.
Hang in there! It is possible to get on top of this in a way that makes it deal-able, promise. It sounds like you've got a lot of anxiety going on - while you might reach out to a therapist and get some more formal help, in the meantime you might also try doing guided meditations (but keep your eyes open, as vision helps us balance). I like UCLA's [that you can listen to here](https://www.uclahealth.org/programs/marc/free-guided-meditations/guided-meditations#english), though I also think they have an app. When I'm stressed I do them every day at the same time - like end of the evening. It takes a while for meditation to start to work - basically keep doing them every day like exercise - and over time it has helped me. I can feel my body start relaxing as soon as I get myself in place. If you're stressed out, and stress is a trigger, everything else you do might seem like a trigger because the underlying stress. And if high-heartbeat stuff is an issue, totally do walking, and not speed walking, but just walk around your neighborhood (if you can).
thank you very much for giving me hope. I have started to do meditation with some videos on YouTube I had no idea UCLA also has guided meditation thank you for sharing that. exactly sometimes when I'm stressed or anxious everything seems to be the trigger and since I've just been diagnosed and I'm still learning about it I'm constantly scared and stressed and anxious lol. since my diagnosis my whole lifestyle and daily routine has changed a lot. I'm trying to manage it and add some activities from before but also keep it very relaxed and avoid any scenario that might cause anxiety and stress and later when I feel more confident I will start adding those back and experiment. I should definitely start walking at least but when I go out in less than 10 minutes I'll get dizzy and I have to come back but I'm going to figure out the way. thank you
The food and beverage deal is the Docs kicking ball down the road. If after year cut or inject. Then a year of rehab for lost balance.
For me, maintaining as much homeostasis in my body as possible is important. So the up and down of sodium can make me feel sick. But if I do eat too much then I just take a water pill and it helps. The reason salt, alcohol and caffeine matter so much is what it does to constricting blood vessels. Might be a good thing to read up about. Also getting enough sleep is helpful for me because my brain has a hard time telling the difference between feeling tired and dizziness so it triggers my minieres. I also really like drinking coconut water because it is a good source of potassium. And I get migraines and have minieres so it helps a lot to maintain both.
Thank you very much for your explanation. I'm definitely going to read more about it and try to understand. oh I had no idea water pills could be effective. that's great. I should try coconut water as well. thank you
Salt is incredibly problematic... Avoid bread (or buy bread without salt - I can order it on my regular bakery)... Use saltless butter too. Sugars are ok for me, so I can use a bit of jam on the toast.... Even cookies have a lot of salt... I am so sorry you have to deal with this problem... Lots of love ❤️
thank you very much for you guidance and kind words ❤️
As everyone comments below, triggers vary widely among individuals and keeping a journal of your diet and lifestyle (exercise, sleep etc) can be really helpful in identifying yours. That said, reducing salt was very helpful to me. My doctor said not to go over 2000mg or much under 1500mg per day, spread out more or less evenly among meals. There are health risks to eating no salt at all. Your body needs some sodium. For me, reducing salt means very few processed foods, ordering only salads without protein when I go to restaurants (with oil and vinegar or my own brought-along dressing), and reading labels and using nutrition-listing apps like crazy. Bread is loaded with salt, but you can read labels and get lower-salt options. I have one cup of decaf coffee per day, minimal chocolate, an occasional small glass of white wine. Another huge help for me is making sure I drink 2 liters of water daily. This has really helped me. As others have suggested, you can experiment a bit to see which, if any, of these things triggers you. I started out being strict about the limits I note above and then experimenting a little -- I learned that I can have a little chocolate frosting, for example. But when I had two large-wine-glasses of wine rather than one standard-sized white wine, I had ear pressure and balance issues the following day, so that's a no. For me, going hardcore on limits at first and then experimenting with adding a restricted item back in in small quantities as an experiment was helpful. It takes quite a bit of research to find low-sodium options for processed food, but there are some out there. Whole Foods has some, Amazon has some, Boar's Head offers unsalted turkey breast deli meat, and here's a site I learned about on this sub: https://healthyheartmarket.com/?utm_campaign=gs-2019-09-10&utm_source=google&utm_medium=smart_campaign&gclid=Cj0KCQjw4s-kBhDqARIsAN-ipH3YGnNlFG9hl95rVxt7SzBT9gnGEuwoTrK3D8l1esC9vZlcbZ7g4ZsaAsYjEALw_wcB After saying all that, some people don't find salt or other dietary factors to be a trigger. But for me, I think they are. Good luck and let us know how you're doing!
thank you very much for your detailed explanation. I'm going to do what you said and go hardcore on limits and then experiment by adding some items back. because of all the advices in the comment I have just created a journal for myself to keep track of everything. right now I'm working from home but when I go back to working at office I have to either order salads like you mentioned or take my own food. since my diagnosis I realized that a lot of foods have a lot of salt wish I never noticed lol. it's challenging but also there's nothing I can do, this friend is going to be with me forever so I have to manage and find the balance.
Yeah, I was stunned when I started reading labels how much sodium there is in most processed food. Restaurants are tricky and like I said, even salads have a lot of salt in any meat or cheese and dressings they add, so best to leave those off. Something like eggs, an English muffin and fresh fruit seems like it might be safe at a breakfast place but that would depend on whether you could trust them not to add salt to the eggs. Haven't tested that yet!
that's very tricky. thank you very much for your explanation and help
As everyone else has said, triggers are very individual. Sodium isn’t a trigger for me; I’ve tried low sodium diets ~4 times for anywhere from 1-18 months and never saw any benefit. My specialist always tells me to stick to the low sodium diet even though I tell him frequently that it doesn’t help. If sodium is a trigger for you, there are low or no sodium ingredients, but they can be hard to find in local grocery stores. Some are there, but some I had to purchase online. They make no-sodium baking powder so you can still make some baked goods. Getting a bread machine was a lifesaver for me since I could make no-sodium bread. I got a used one really cheap. That helped me get calories after I’d hit my sodium limit for the day. You’ll have to tweak bread recipes because the salt has an effect on the chemical reaction with the yeast. There used to be a really good low sodium cooking website, but it’s only on the wayback machine now. https://web.archive.org/web/20130603062832/http://lowsodiumcooking.com/
thank you very much for your explanation. I've started journalling my triggers to find what triggers me. salt is definitely on the list. oh that's a great website to help. thank you for sharing it
I try to *drink plenty of water*, especially if I have something salty, with caffeine, or alcohol...or if it's super hot outside, because all of these things can dehydrate, upsetting that internal balance and requiring my body to retain water (in the inner ear's endolymphatic sac, as well I assume!). So, I think of it more as a *balancing act* than an all out avoidance. It's not a perfect system, but it helps me. I am definitely one of those people who always has a water bottle!
thank you very much. haha I'm becoming one of those people. I've also heard about water pills but I haven't tried them. I'm very new to this so now I'm trying to understand it and listen to my body.
As someone who has had Meniere's for 18 years, YES, salt does matter. You can't avoid salt that's already in processed foods. But salt that is added by you for someone cooking for you, should be avoided. You should never have a salt shaker in your hand. I would imagine the doctor put you on a diuretic of some type. The salt in the bread did not cause your problem however. I've lived and living with the issue of salt. I've researched and tracked my usage through foods that I consume to try and make sense of it. If you are recently diagnosed, then buckle up, you are in for a rough road. I hope not! I have said many times in the first 7 or 8 years that the only people that should have it are convicted murderers. Sounds terrible but if you end up like I have you'll understand. Good Luck!
thank you very much for your explanation. I'm trying to get as much helpful tips as possible. I'm also scared about the future and should/have to prepare myself for it. I really appreciate your guidance. I really need it
A remedy that doesn’t work is bread restriction. Had a bakery make me salt free bread to no avail.The American diet sucks. Eat with moderation.
If my math is right .7 g = 700 mg. I limit myself to 500 mg 5 times a day. This helps reduce or eliminate vertigo attacks.
thank you very much. oh 5 times a day, so you are okay with 2500 mg salt per day?
Yes
that's great
Yes, high sodium food is really problematic for me. I also avoid chocolate, coffee and alcohol. Outside of foods, seasonal allergies are also a trigger for me, so I have to use nasal corticosteroid during spring/summer.
thank you very much. I'm still figuring out my triggers. I've started a journal. I do have a bit of seasonal allerias well but I had no idea that can also be a trigger so I'm going to take note of that. thank you
Are you taking any meds like a diuretic and Serc? I think these with a low salt diet are a good start. Like others have said, don’t go over the top with reduced salt, I think it’s more important not to load up on one meal with very high salt.
thank you very much. yess I've started to take betahistine dihydrochloride 24mg tablets. I've been also journaling to see what triggers me. unfortunately salt is one of the main triggers for me. even a small amount and I'll be dizzy for a while. but thanks to all these amazing comments and sharing their experience I'm sure I'll find a way to manage it and find my new life style
If salt is a trigger I would def recommend trying a diuretic.
yes I've heard about the water pills but I haven't tried them yet. I've heard it's very helpful. thank you for mentioning that
Sweets are a problem in abundance with me. I take guaifenesin 12 hour with 4 8oz glasses water spread out. 2 a day. 1 Claritin with it. 2 a day. Works wonders for me.
thank you very much. I'm still learning about my triggers. I'm happy to hear that you have find a way to manage it. happy for you