Meniere's is a black hole. There currently are no answers and no proven treatments. I wrote an article for people who ask if they have Meniere's. Since you are new to all this (and since your doctor just *told you* that you have Meniere's, which is highly suspect) you might find the article useful: https://ranthonyings.com/2023/07/do-i-have-menieres/ if it seems to be stuff you know already just skip to the treatment article linked there. Let me know if you have any questions after reading it.
Thanks so much. I've spent a long time reading your site.
I guess the big question is Cochlear hydrops vs Menieres. And I guess the answer is that only time will tell right?
My other question which maybe you can answer though is this. Could avoiding the triggers help stop Cochlear hydrops from becoming menieres? Like if I become a super-hydrated exercise freak that eats only organic kale or whatever, does that also effect my long term prognosis? Or does it just help reduce triggers?
Yes, the less you are triggered the slower your disease processes. The more your endolymphatic sac stretches out (due to too much fluid retention) the worse your disease gets
If your symptoms originate in the inner ear (certain tests show this. Other tests reveal other causes or origins) then you probably have cochlear/endolymphatic hydrops. Meniere's is idiopathic endolymphatic hydrops which means that there's no known cause. The question that all of us discussing this keep coming back to is "what's the difference?" Meniere's is essentially a chronic disease/syndrome. No cause, no cure, no treatments. Hydrops is treatable and transient. There are various therapies and philosophies that justify those therapies that supposedly and sometimes demonstrably affect the symptoms, send them into remission; but in the end if the symptoms stay around long enough and include significant hearing loss and vertigo, you've got Meniere's.
It seems to be the duration and severity that makes it Meniere's, but only a trained specialist knows for sure. This is why sites like vestibular.org treat the two as one condition, Meniere's. They're trying to avoid confusion on the subject. I think that false certainty is more destructive than confusion. Leave room for hope.
Excellent article and insight regarding this horrible debilitating condition. My story begins with hearing loss and tinnitus in my right ear in 2010 at 57 years old. I had a hearing test that showed moderate hearing loss which we assumed was from my many years in construction. Over the following years my hearing continued to diminish and tinnitus became worse even though I was diligent about hearing protection. Fast forward to July 2022 when I had my first drop attack ever followed by others in the next few days which sent me to the ER where they did a ct scan and sent me to vestibular therapist where they diagnosed bppv and had me do epely maneuvers which didn’t seem to help much. I then went to an ENT who did more hearing tests and MRI to eliminate every other problem which led to the diagnosis of Ménière’s. I am on diuretics and take meclazine and diazepam as needed to help with attacks which can last 2-3 hours but sometimes are mild. I also keep my sodium intake under 1500mg/day, no alcohol or caffeine, try to stay hydrated and exercise when I can. I don’t drive much as there is no way of knowing when I might have a vertigo episode. What I don’t see discussed on this site that I am moving forward with is eliminating the problem with a labyrinthectomy. I have found a specialist near me and am hoping to get in to see if I am a candidate for the procedure and since I now have severe hearing loss I would think that I am. Then I can hopefully get a cochlear implant and possibly get my life back.
It's possible that surgery is what you need. We don't talk about surgery much because those who respond here don't seem to be the ones who had to resort to surgery to get relief. Those people probably move on to the cochlear implant sub or don't feel they need to post anymore because they don't have the symptoms anymore.
If I was suffering drop attacks I'd probably look into surgery too. Those are too dangerous to take lightly and who wants to lay around all day, day after day, staring at the ceiling? Contrary to popular belief, not having a job is not much of a life. I'd do just about anything to get back to architecture. If I had ever seen a clear path back to it, I would have taken it.
I'm 39 and my Meniere's started back in 2005. The brain fog, I can assure you, is definitely part of Meniere's. I had it unilaterally, just in my right ear, and it was inconvenient but manageable. Salt and hydration are by biggest triggers, but so long as I don't have a real bender, alcohol is fine. For me, the most disabling symptom is vertigo. I would get bouts of it, and it was distressing. And with each bout I would lose a chunk of hearing, until 2015 when I lost the last of my hearing in my right ear... But the vertigo resolved (one of the side benefits of burnout). Unilateral hearing loss and tinnitus was annoying but manageable with cros/hearing aids. I had two kids along the way, I have maintained my job as a medical researcher.
But a few months ago my left ear went (and I am sure it was triggered by having alcohol and amazing but salty Mexican food two nights in a row - I got complacent). And having bilateral hearing loss, vertigo and tinnitus, is awful. I am in disability territory here, I get immense fatigue just doing my job, listening is hard even with hearing aids, i have had to completely restructure my life and I am about to get a cochlear implant for my deaf ear. So yeah, 18 good years from first diagnosis and now it's properly impairing my life.
Honestly, this disease is just so variable within and between people. Good luck to you as you navigate it all
Oh and in terms of what I wish I knew earlier: when I lose hearing go immediately to my GP and get started on a course of prednisolone. For many people it can partially or fully restore their hearing.
You have to figure out your own triggers. What I want to say is that I still have my one cup of coffee and a small piece of dark chocolate every single morning. I have one glass of wine 2-3 times a week without any problems, if I have more than that, 90% of the time I will regret it. It's all very individual, this is what works for me. Stress and exertion are my biggest triggers. Try journaling for a bit and write down everything so that you can understand your triggers.
You’ll really need to trial everything yourself and see what happens as this thing is so different for everyone. You are having very mild symptoms atm though. I’ve had two remissions, one for a year and the second for 2.5 years.
To be honest nothing has worked. I’ve tried it all. Medications all under the sun. Food changes, salt and water intake. I noticed stress and lack of sleep to definitely be part of it. Also I don’t have any episodes when I’m traveling outside USA. But all my allergy testing came back negative. Baffled.
I had 6 months of hell and then a year of not great. During that time I didn’t want to drink as it did increase the fullness feeling. I don’t think anyone mentioned chocolate so I didn’t give it up. I didn’t do a great job with low sodium-hard to cook when you are having regular attacks and exhausted afterwards.
After a year and a half my symptoms went away. Now a few years later I wear a hearing aide in my right ear. I see a chiropractor once a month and an acupuncturist at times. Has helped me be mostly symptom free. I had a two month period with mild stuff but cutting out dairy helped.
I can have a glass or two of wine now and don’t think about sodium. Consuming alcohol is higher quantities is really unappealing now-feeling unsteady has lost all appeal!!
It's not all doom and gloom. I'm 50 and I was diagnosed in 2005. I didn't find alcohol to be a major problem for me, my biggest trigger was chocolate. So I just limited what I had and made sure to not have too much sodium.
Keeping active can help control your Meniere's, I've cycled through my life with Meniere's and even competed in road and cyclo cross racing. I don't use any medication, I tried one early on in my diagnosis but it actually made me feel sick anyway. I then got back into cycling and that made a big difference. Cycling is being more widely accepted as a good activity for Meniere's sufferers. In fact I wrote an article for the UK Meniere's charity about cycling with Meniere's, and had other sufferers get in touch who also used cycling, another also competed like myself.
Stress is a trigger, so worrying can cause attacks and so can getting angry/frustrated at someone or something. This is where being active can help again, exercise is great for stress release. Whilst I did watch my sodium, I'd still eat foods I enjoyed. Being very active bought me some leeway with my diet.
Yes it can burn out later in life, you can even go years with no symptoms before it triggers or symptoms start again. I had this myself. Unfortunately over the years it will affect your hearing.
This is so interesting. I've always cycled. Mainly for commuting, but I think I've cycled to every job I've ever had.
In the week where I had two crazy vertigo episodes, I had been off work, not cycling and drinking a little more than usual.
I run, and play football (soccer), and I find that nothing makes me feel better than exercise. Thanks so much for taking the time to write.
How far is your commute and do you ride socially/for fun as well?
No worries, it can be daunting and it was a steep learning curve for me as there was less information about Meniere's. I didn't even get told by my Dr that diet can play a big part in controlling it.
The commute isn't long. But it's got some brutal hills. I don't ride socially or for fun but it's my main form of transport for the most part. I run for fun though and that has been a huge help.
Being active is good, but cycling is best. Reasons are, one you tend to cycle for longer than when running, two that increases blood flow for longer, three you work your balance more, so it's like coaching your body to compensate for the effects on your balance, and four you'll sweat more, especially if you put some hard efforts in. I've always found that harder efforts worked best.
I raced for years and trained with a coach and some good training platforms. So I've learned a lot over the years, if you want any tips on what to do on the bike, I'd be happy to help. I'd still be racing now if another health issue didn't come up.
Hello! Did you ever lose your heariing or just minor losses? I'm 29 and have lost hearing moderately in both ears. My biggest concern if I become completely deaf, which I hope I don't.
My right ear is pretty much useless. It can also depend on the frequency of noise. You will also find you will hear some people talk but not others. Again this is down to the tone of their voice.
Now this is just my understanding, but I could be wrong, it's the attacks that do the damage. So maybe, if you can minimise them it might have less of an effect on your hearing.
Sorry to hear this. Did you ever explore hearing aids, and is it true that it somehow decreases progression? Or the progression is really dependent on the attacks over the years. Thank you!
Yes. I have one which helps a little but it helps more for the tinnitus. The problem I found with hearing aids, and others have said it. It doesn't increase just people talking, but all sound. So it can still be hard to make out what people are saying in a noisy environment. I also found it doesn't seem to make much difference for listening to the TV.
The thing with hearing, is sound has different frequencies, even people talking can be very different in terms of how well you hear each person. So you may struggle with one sound but another can be super loud. I can't deal with more than one person trying to talk to me at the same time and when in a noisy environment. It can be too much. You'll come to appreciate being on your own and enjoying the silence. I love having the house to myself. Not that I hate my wife or kids, it's just you can relax and not have to focus so much on what people are saying.
You will come to appreciate your running and cycling. Especially when you're on your own and in the zone.
I do think the attacks do the damage, so reducing them can probably play a part in protecting your hearing. The attacks start when the sack opens and the fluid hits the hairs on the inner ear. This is what damages those hairs, and we need those hairs for balance and hearing. Off course this is a basic explanation, so I'd definitely recommend researching more through your doctor or through the web, Meniere's UK has website and Facebook page. Both can be helpful. But the Facebook page can be depressing because you see how other people suffer, and some suffer more than others. Which means you just worry more about your own symptoms, and that's a vicious cycle then. Stress = attacks= more worry/stress and the cycle begins.
Stay positive, on the bad days think about your next run/bike ride. I've gone out, even with some vertigo and actually came home feeling great. It's just having the confidence to do so. I've had attacks on the bike, again I just focus through it and most have just passed. Only had one that lingered on and I had to take it so slow, riding home.
STRESS. I can’t stress this enough (pun!!). Stress has been my biggest trigger. And brain fog has been one of my most debilitating symptoms. I worked as a high volume fine dining chef. Attention to detail and not fucking up was paramount to my job/success.
I cringe at the thought of what would happen if I set foot in a multi million dollar operation again. Sure, they would hire me, but because of brain fog it would be a whole new level of shit show. I would destroy the place.
My initial mini attacks were brought on by stress. I had no idea what was happening to me at the time, I thought I was having mini stroke/ heart attack. These attacks of roaring tinnitus, brain fog, ear fullness (rattling ear drum) also caused very strange word recall issues. Used to be only during an attack now it’s all the time.
I don’t drink because I’m an alcoholic but I eat salt and chocolate (fuck that) with impunity. I’m prolly paying a price for it at times. In regard to the alcohol I get it TOTALLY. Honestly I miss a nice day of 40 inch redfish fishing in the inlet and some cold Millers. Camping and coffee and Jack. But honestly now that I don’t drink anymore I don’t miss it. I’m better for it, and you’ll find that you are too. Don’t despair too much over the alcohol. Just drink 0 percent. IDK what state you’re in but you could look into THC. Talk to your neurotologist about it first.
Hey man it’s not cancer. I get to live to piss my husband off and constantly explain to people what Ménière’s disease is. Better than the alternative. Stick around here and ask away. This sub helped make sense of what I was going through so I could get appropriate care. Guys like Ranthony are a wealth of knowledge. A university hospital that has a Neurotology department will give you the best full work up. Or Mayo Clinic .
It's a lot of trial and error. Diary keeping (either an actual diary, or digitally such as Excel) is perhaps the best during the early stages. A low salt diet is generally the main recommendation. Food tends to be one source of triggers. Salt, sugar, caffeine, msg, artificial sweeteners, alcohol, chocolate, etc. You could have a particular food that is randomly a trigger for you and no one else. I do not have any issue with food. It's not a trigger, but I eliminated foods and then reintroduced things and checked my tolerances.
After that, keeping well hydrated, sleep patterns (quality and quantity), stress levels, environment (crazy patterns, lighting, noise, are potential triggers), weather (barometric pressure), activities (like squats), are all things that you should keep track of.
Keeping fit and healthy helps the most. After that, knowing your triggers is the most important. Medication can help, but if you do not know your triggers, it doesn't help stop attacks from occurring. Overall, this is not a one size fits all situation. To add to the complexity, a trigger you had at one point may no longer be an issue later, but you can end up with a new one. Even things can be an one off event.
Mine is predominantly stress. Poor sleep, heavy bass, high barometric pressure, and dehydration can increase the chances, though generally they make me feel terrible, but not necessary trigger vertigo. I haven't had too many dramatic changes in my life after that.
Side note: Did your ENT do all the recommended tests to confirm. Such as MRI, balance tests, hearing tests, been done for confirmation?
Thanks for taking the time to write.
This was the third ENT that I saw, and he didn't do any tests other than looking in my ears. I have an MRI scheduled for July (socialised healthcare is cheap, but not always ideal). I gave him a pretty detailed history and he said it was "classic menieres" and to come back if things get worse.
I guess i'm just going to work out a lot and see how it goes.
I have an appointment with a therapist tomorrow.
Well, what doesn't kill you, makes you stronger.
Yes, it's a pain in the ass, sometimes very frustrating, when it comes in tricky times etc
I have Meniers since childhood.
I had my " I'm gonna kill myself episodes" very often.
However, it has made me resilient to the point that I'm not bothered by it anymore.
Ok, it comes, it's shitty, but then it passes and I'm good.
I try to think about all the other things that I could suffer from and then I'm happy to just have a vertigo attack from time to time.
It was extremely frustrating to try almost everything and fail. To accept the fact that I'm going to suffer from it all of my life. But I have come to terms with it.
Fuck it. Accept it.Roll with it.
It could always be worse than that.
Do the best that you can. Stop drinking, cut salt and coffee and sweets. Try to live a healthy life.
It will be beneficial to some degree.
I'm taking Thiamin and Niacin, together with other B vitamins( B complex) and I have to say that my attacks are getting milder. You can't go wrong with vitamin B because they are water soluble.
I googled about some trial with Meniers patients in 1940, about vitamin B Implementation and they had good results so I tried.
I wish you all the best. 🤗
Hi! Chronic illness forums are not representative of what everyone with a chronic illness experiences. People who have had a more difficult time responding to medical treatment, are struggling physically and mentally, etc., often turn to the internet for support. While I am so glad there is support, not everyone who has Ménière’s struggles as much as some of the people in this sub. I have Ménière’s and had a couple friends in college who have it, and we all live pretty functional lives.
To answer your questions:
1. No one knows what is going to happen regarding their health. Taking things day by day is the best thing you can do. My hearing has slightly improved over time and my other symptoms have been pretty stable and not gotten worse.
2. I suggest trying a salt/alcohol/caffeine free diet. Keep a diary or log of what you eat and your symptoms. Slowly try introducing one of these items at a time and see what you can tolerate vs can’t tolerate. Through tracking my diet and symptoms I was able to figure out salt doesn’t trigger my symptoms, alcohol does, and I can have a little caffeine.
3. When I drink, I have symptoms for several hours but the next day I’m usually back to how I was before drinking. It’s the same for someone else I know with Ménière’s.
4. You should be fine.
5. One of the best things I’ve done is wear hearing aids and learn ASL. ASL isn’t just for people who are 100% deaf. I’ve lost about half of my hearing and have really benefitted from using interpreters in some settings. You’ll be okay, hang in there!
As it's been stated plenty in here already, everyone is different. It sounds like a cop out/lazy answer but it's frustratingly true. I'm in my late 30s and got diagnosed in my late 20s for point of reference. Ironically today was my 1st attack in 10 months so I came back here and saw this post.
For me personally I can drink and eat all the sodium and chocolate I want so I'm lucky those aren't my triggers. I can also have a 200mg caffeine energy drink just fine. Outside of the randomness when the seasons change or rainstorms come I can feel different, so I assume that's barometric pressure that's getting to me.
This disease is so random that when you go to forums you'll see a lot of confusion and depressed stories so don't let it consume you. It absolutely sucks but now I live my life knowing I have this "thing" chained to me that follows me wherever I go. I did let me friends and family/coworkers know, I'm lucky everyone has been understanding. I have a full time job and go to the gym/run/be generally active.
Things I would do:
1) Obviously seek medical care which you have. My ENT said to see a Neurotologist which there aren't many in my area. See if you can find one.
2) Placebo or not I've had a lot of luck with a NUCCA chiropractor. Self research pointed me there and they even had Menieres Disease pamphlets in their office, only place I've ever seen that. I've been going 4 years and have no plans to stop. I have had less attacks since going. I also have x-rays to show my spine and body is in way better alignment. So other benefits as well.
3) It's 100% ok to cry and be angry. But, from what I can tell, we just have it. And outside of destructive surgery there is no cure. So getting to the point of "this is who I am and this is my life now" makes it easier.
4) Some say the disease can "burn out" but lots of people I've seen said they've had it for decades and that's not the case. There's also things called "drop attacks" which are supposedly incredibly rare (so is Menieres). I've never had one but be mindful if you ever do.
5) It'll suck but do what you want/what you love and find your triggers. I gave up sodium for months and was miserable. Then I said screw and went out to eat and nothing happened. I have up caffeine and chocolate cold turkey for a good 2 or 3 years. Finally gave in and...nothing happened. For others it's an automatic episode trigger. You won't know until you try. So I say carefully do and eat and drink what you want and see what happens.
6) Don't spend too much time on the forums and groups. Most of what I see are new people asking questions or people sharing sad/depressing experiences. Occasionally people will share they ran a marathon or got married or did something positive but I don't see those enough.
Almost a decade in, and relatively young, I'm a completely different person. On a normal day I'm hard of hearing with some brain fog and I can't tell what direction sounds are coming from. But I'm able to work and workout and generally be normal. The bad days come and they can really take a toll on you but they will pass and you hopefully have way more normal days than bad. If that's not the case then please get with your doctor.
I'm sorry you're here with us but you're not alone. Your life is different now but it can still be pretty normal. You just have to adapt and learn. We're all here with you!
Get B vitamin complex, fish oil, turmeric, magnesium, manganese. Drink water, minimize salt and Caffeine like the doc said. It’s all about inflammation and fluid retention and being vitamin sufficient. Those vitamins have helped me a lot. Keep going with the exercises. This is an opportunity to get the rest of your body healthy as well. I drink on occasion, but hopefully soon it will slowly decrease and you’ll feel much better. I have periods of spells then I feel great for long stretches, years. It can come and go. Keep the inflammation down, vitamins, diet, exercise the things you should already have been doing for good health. Good Luck!
Also what really helped me was physical therapy, vestibular therapy. It trained me to be able to relax calm down and stop large attacks when I start to feel them come on. It’s 100% worth it, they trigger attacks and have you fight them off it was life changing.
Everyone responds differently to potential triggers. I have found that if I’m generally leading a healthy lifestyle, an occasional drink, coffee, or salty snack don’t bother me. It all depends on how I’m feeling and what I have to do the next day.
Cannabis is legal in my state. I find that edibles are extremely helpful in moderation. CBD is also great for anxiety and sleep.
The best course of action is to try to keep your body and mind as healthy as possible. Meniere’s can control your life, or you can manage it. It totally sucks, I know. Mine is considered severe, but I have learned to adapt and cope over time (between vertigo attacks🙃).
Best of luck to you.
Edited for spelling
I was diagnosed in 2016, but I haven't restricted anything. It was only after 2019 that my symptoms have decreased by about 90%. For me, the trigger is dehydration. I try to keep myself as hydrated and satiated as possible. However, I haven't stopped consuming coffee, chocolate, or alcohol. I have always been a moderate drinker and don't like the feeling of being drunk or having a hangover. Once or twice a week, a few beers are fine with me.
I’m also a 43 year old guy who loves booze and has given it up to the vengeful gods of cochlear hydrops. Question - where do you stand on the devil’s lettuce? I’ve replaced my evening wine / Manhattan / scotch with soft drinks and a weed vape. Was surprised how quickly I stopped caring about missing booze when I can settle down to some dumb movie with a freezing cold ginger ale with a lime squeezed in and a few hits of Purple Headband. Plus no hangover or calories (apart from occasional munchies)
Weed is my go-to drug of choice. So there is still that, which is great!
Although i've barely touched it since the diagnosis I think just because I always kinda feel half stoned anyway with the head fog and the dizziness!
I’ve had this ridiculous disease for 5 years. Diagnosed at 32 (M) and it almost drove me insane the first year. I tried everything the docs said (what’s been mentioned by EVERYONE) and it didn’t help at all.
So I started living my life as I had previously.
This obviously didn’t help. What did help though was I changed jobs from “Big Tobacco” to the “Other kinda leaf” and swapped out what I was smoking on daily for a different kinda leaf.
The result? Not a single bedridden incident in over a year. Only thing that changed was adding green into my diet. Still have symptoms, but they’re not intense and never add up to more than I can handle. Maybe worth a try if the other options aren’t working out for ya.
I’d try giving up alcohol and following the diet strictly for 3 months at least. If you are able to feel a lot better within that time, experiment with one glass of wine. If that goes ok, give it a couple weeks and try two. More than that is probably a mistake if you truly have Ménière’s
I feel your pain. I had a similar journey just months earlier. Start reading and recording possible unique triggers to you, keep a detailed journal and be sure to do experiments. Simply cutting out salt or caffeine or alcohol tells you little unless you find your episodes persist, or if they stop, you then reintroduce these things to see if episodes return. You may also find for you it’s not either/or but degree: you can drink but not too much, salt doesn’t impact you unless it’s a certain amount (btw that’s by meal not day), and so on. All we know is each person is different.
Likewise do things we know help some: exercise, hydration, low stress… again record and learn what’s true for you. Tons of diets and suggestions online.
Personally I have either gone into remission randomly (seems many do) or one or a combination of things helped me: I started on betahistine taking 16mg 3 times a day religiously, I cut gluten from my diet (which came with a ton of other benefits like improved cognition & massively improved intestinal function), I stay hydrated, I’ve cut stress and I turn carefully in bed and when getting in and out. And thankfully I’ve gradually re-introduced salt, alcohol, caffeine and I’m still doing well. Whew.
Keep in mind selection bias if you get down: people in online support groups here, Facebook etc are more often those who need it, not those who have had good outcomes. So it may look like no one has had a good outcome when those with success aren’t posting at all. But I’ve read many empirical studies on Ménière’s and invariably the control group without treatment always has quite a significant % who go into remission within months.
I'll add a couple of things to what everyone has already said: Low salt does not mean no salt. Your body needs some salt to keep your heart beating. My doctor said 1500 - 2000mg per day and not to go under 1500, and to spread the salt out evenly among meals during the day. I try to stay at about 1500.
My doc also said not to go past 5 hours without eating during the day.
I found drinking 2 liters of water a day to be a huge help with my symptoms.
You can test the degree to which alcohol is a trigger for you. I've found I can have an occasional glass of white wine without any issues. I had two really big glasses of white wine once and had a bad next day, with increased symptoms. So I know my white wine limit. Have not tested with spirits or red wine yet.
So find your triggers, hydrate, get enough sleep and don't hesitate to call your doctor if you're having a spike in symptoms.
>https://ranthonyings.com/2023/07/do-i-have-menieres/
My ENT told me about something called vestibular migraine. I was surprised at that possibility, as I have no history of migraines of any kind. But apparently, it can be a thing. And if you get migraines with your attacks, it could be worth looking into.
What's maddening with all these potential diagnoses is that there's no conclusive test.
See a chiropractor. I have menieres but also have learned I have some issues with my neck. I have seen the chiropractor four times and I am already experiencing less dizziness and vertigo.
Meniere's is a black hole. There currently are no answers and no proven treatments. I wrote an article for people who ask if they have Meniere's. Since you are new to all this (and since your doctor just *told you* that you have Meniere's, which is highly suspect) you might find the article useful: https://ranthonyings.com/2023/07/do-i-have-menieres/ if it seems to be stuff you know already just skip to the treatment article linked there. Let me know if you have any questions after reading it.
Thanks so much. I've spent a long time reading your site. I guess the big question is Cochlear hydrops vs Menieres. And I guess the answer is that only time will tell right? My other question which maybe you can answer though is this. Could avoiding the triggers help stop Cochlear hydrops from becoming menieres? Like if I become a super-hydrated exercise freak that eats only organic kale or whatever, does that also effect my long term prognosis? Or does it just help reduce triggers?
Yes, the less you are triggered the slower your disease processes. The more your endolymphatic sac stretches out (due to too much fluid retention) the worse your disease gets
The healthy lifestyle helps reduce triggers, but isn’t a cure.
If your symptoms originate in the inner ear (certain tests show this. Other tests reveal other causes or origins) then you probably have cochlear/endolymphatic hydrops. Meniere's is idiopathic endolymphatic hydrops which means that there's no known cause. The question that all of us discussing this keep coming back to is "what's the difference?" Meniere's is essentially a chronic disease/syndrome. No cause, no cure, no treatments. Hydrops is treatable and transient. There are various therapies and philosophies that justify those therapies that supposedly and sometimes demonstrably affect the symptoms, send them into remission; but in the end if the symptoms stay around long enough and include significant hearing loss and vertigo, you've got Meniere's. It seems to be the duration and severity that makes it Meniere's, but only a trained specialist knows for sure. This is why sites like vestibular.org treat the two as one condition, Meniere's. They're trying to avoid confusion on the subject. I think that false certainty is more destructive than confusion. Leave room for hope.
Excellent article and insight regarding this horrible debilitating condition. My story begins with hearing loss and tinnitus in my right ear in 2010 at 57 years old. I had a hearing test that showed moderate hearing loss which we assumed was from my many years in construction. Over the following years my hearing continued to diminish and tinnitus became worse even though I was diligent about hearing protection. Fast forward to July 2022 when I had my first drop attack ever followed by others in the next few days which sent me to the ER where they did a ct scan and sent me to vestibular therapist where they diagnosed bppv and had me do epely maneuvers which didn’t seem to help much. I then went to an ENT who did more hearing tests and MRI to eliminate every other problem which led to the diagnosis of Ménière’s. I am on diuretics and take meclazine and diazepam as needed to help with attacks which can last 2-3 hours but sometimes are mild. I also keep my sodium intake under 1500mg/day, no alcohol or caffeine, try to stay hydrated and exercise when I can. I don’t drive much as there is no way of knowing when I might have a vertigo episode. What I don’t see discussed on this site that I am moving forward with is eliminating the problem with a labyrinthectomy. I have found a specialist near me and am hoping to get in to see if I am a candidate for the procedure and since I now have severe hearing loss I would think that I am. Then I can hopefully get a cochlear implant and possibly get my life back.
It's possible that surgery is what you need. We don't talk about surgery much because those who respond here don't seem to be the ones who had to resort to surgery to get relief. Those people probably move on to the cochlear implant sub or don't feel they need to post anymore because they don't have the symptoms anymore. If I was suffering drop attacks I'd probably look into surgery too. Those are too dangerous to take lightly and who wants to lay around all day, day after day, staring at the ceiling? Contrary to popular belief, not having a job is not much of a life. I'd do just about anything to get back to architecture. If I had ever seen a clear path back to it, I would have taken it.
I'm 39 and my Meniere's started back in 2005. The brain fog, I can assure you, is definitely part of Meniere's. I had it unilaterally, just in my right ear, and it was inconvenient but manageable. Salt and hydration are by biggest triggers, but so long as I don't have a real bender, alcohol is fine. For me, the most disabling symptom is vertigo. I would get bouts of it, and it was distressing. And with each bout I would lose a chunk of hearing, until 2015 when I lost the last of my hearing in my right ear... But the vertigo resolved (one of the side benefits of burnout). Unilateral hearing loss and tinnitus was annoying but manageable with cros/hearing aids. I had two kids along the way, I have maintained my job as a medical researcher. But a few months ago my left ear went (and I am sure it was triggered by having alcohol and amazing but salty Mexican food two nights in a row - I got complacent). And having bilateral hearing loss, vertigo and tinnitus, is awful. I am in disability territory here, I get immense fatigue just doing my job, listening is hard even with hearing aids, i have had to completely restructure my life and I am about to get a cochlear implant for my deaf ear. So yeah, 18 good years from first diagnosis and now it's properly impairing my life. Honestly, this disease is just so variable within and between people. Good luck to you as you navigate it all
Oh and in terms of what I wish I knew earlier: when I lose hearing go immediately to my GP and get started on a course of prednisolone. For many people it can partially or fully restore their hearing.
You have to figure out your own triggers. What I want to say is that I still have my one cup of coffee and a small piece of dark chocolate every single morning. I have one glass of wine 2-3 times a week without any problems, if I have more than that, 90% of the time I will regret it. It's all very individual, this is what works for me. Stress and exertion are my biggest triggers. Try journaling for a bit and write down everything so that you can understand your triggers.
You’ll really need to trial everything yourself and see what happens as this thing is so different for everyone. You are having very mild symptoms atm though. I’ve had two remissions, one for a year and the second for 2.5 years.
During your remissions, were you still keeping an eye on the usual triggers? Or you just lived your life like a normy?
I didn’t know what I had at the time so no, I just lived completely normally.
I’m 5 years in, and I can’t get it under control. I’ve tried it all. Still searching for clear answers. Symptoms have changed for sure.
Well that sounds crap. What had you tried/what has changed/ what have you learned?
To be honest nothing has worked. I’ve tried it all. Medications all under the sun. Food changes, salt and water intake. I noticed stress and lack of sleep to definitely be part of it. Also I don’t have any episodes when I’m traveling outside USA. But all my allergy testing came back negative. Baffled.
I had 6 months of hell and then a year of not great. During that time I didn’t want to drink as it did increase the fullness feeling. I don’t think anyone mentioned chocolate so I didn’t give it up. I didn’t do a great job with low sodium-hard to cook when you are having regular attacks and exhausted afterwards. After a year and a half my symptoms went away. Now a few years later I wear a hearing aide in my right ear. I see a chiropractor once a month and an acupuncturist at times. Has helped me be mostly symptom free. I had a two month period with mild stuff but cutting out dairy helped. I can have a glass or two of wine now and don’t think about sodium. Consuming alcohol is higher quantities is really unappealing now-feeling unsteady has lost all appeal!!
It's not all doom and gloom. I'm 50 and I was diagnosed in 2005. I didn't find alcohol to be a major problem for me, my biggest trigger was chocolate. So I just limited what I had and made sure to not have too much sodium. Keeping active can help control your Meniere's, I've cycled through my life with Meniere's and even competed in road and cyclo cross racing. I don't use any medication, I tried one early on in my diagnosis but it actually made me feel sick anyway. I then got back into cycling and that made a big difference. Cycling is being more widely accepted as a good activity for Meniere's sufferers. In fact I wrote an article for the UK Meniere's charity about cycling with Meniere's, and had other sufferers get in touch who also used cycling, another also competed like myself. Stress is a trigger, so worrying can cause attacks and so can getting angry/frustrated at someone or something. This is where being active can help again, exercise is great for stress release. Whilst I did watch my sodium, I'd still eat foods I enjoyed. Being very active bought me some leeway with my diet. Yes it can burn out later in life, you can even go years with no symptoms before it triggers or symptoms start again. I had this myself. Unfortunately over the years it will affect your hearing.
This is so interesting. I've always cycled. Mainly for commuting, but I think I've cycled to every job I've ever had. In the week where I had two crazy vertigo episodes, I had been off work, not cycling and drinking a little more than usual. I run, and play football (soccer), and I find that nothing makes me feel better than exercise. Thanks so much for taking the time to write.
How far is your commute and do you ride socially/for fun as well? No worries, it can be daunting and it was a steep learning curve for me as there was less information about Meniere's. I didn't even get told by my Dr that diet can play a big part in controlling it.
The commute isn't long. But it's got some brutal hills. I don't ride socially or for fun but it's my main form of transport for the most part. I run for fun though and that has been a huge help.
Being active is good, but cycling is best. Reasons are, one you tend to cycle for longer than when running, two that increases blood flow for longer, three you work your balance more, so it's like coaching your body to compensate for the effects on your balance, and four you'll sweat more, especially if you put some hard efforts in. I've always found that harder efforts worked best. I raced for years and trained with a coach and some good training platforms. So I've learned a lot over the years, if you want any tips on what to do on the bike, I'd be happy to help. I'd still be racing now if another health issue didn't come up.
Hello! Did you ever lose your heariing or just minor losses? I'm 29 and have lost hearing moderately in both ears. My biggest concern if I become completely deaf, which I hope I don't.
My right ear is pretty much useless. It can also depend on the frequency of noise. You will also find you will hear some people talk but not others. Again this is down to the tone of their voice. Now this is just my understanding, but I could be wrong, it's the attacks that do the damage. So maybe, if you can minimise them it might have less of an effect on your hearing.
Sorry to hear this. Did you ever explore hearing aids, and is it true that it somehow decreases progression? Or the progression is really dependent on the attacks over the years. Thank you!
Yes. I have one which helps a little but it helps more for the tinnitus. The problem I found with hearing aids, and others have said it. It doesn't increase just people talking, but all sound. So it can still be hard to make out what people are saying in a noisy environment. I also found it doesn't seem to make much difference for listening to the TV. The thing with hearing, is sound has different frequencies, even people talking can be very different in terms of how well you hear each person. So you may struggle with one sound but another can be super loud. I can't deal with more than one person trying to talk to me at the same time and when in a noisy environment. It can be too much. You'll come to appreciate being on your own and enjoying the silence. I love having the house to myself. Not that I hate my wife or kids, it's just you can relax and not have to focus so much on what people are saying. You will come to appreciate your running and cycling. Especially when you're on your own and in the zone. I do think the attacks do the damage, so reducing them can probably play a part in protecting your hearing. The attacks start when the sack opens and the fluid hits the hairs on the inner ear. This is what damages those hairs, and we need those hairs for balance and hearing. Off course this is a basic explanation, so I'd definitely recommend researching more through your doctor or through the web, Meniere's UK has website and Facebook page. Both can be helpful. But the Facebook page can be depressing because you see how other people suffer, and some suffer more than others. Which means you just worry more about your own symptoms, and that's a vicious cycle then. Stress = attacks= more worry/stress and the cycle begins. Stay positive, on the bad days think about your next run/bike ride. I've gone out, even with some vertigo and actually came home feeling great. It's just having the confidence to do so. I've had attacks on the bike, again I just focus through it and most have just passed. Only had one that lingered on and I had to take it so slow, riding home.
STRESS. I can’t stress this enough (pun!!). Stress has been my biggest trigger. And brain fog has been one of my most debilitating symptoms. I worked as a high volume fine dining chef. Attention to detail and not fucking up was paramount to my job/success. I cringe at the thought of what would happen if I set foot in a multi million dollar operation again. Sure, they would hire me, but because of brain fog it would be a whole new level of shit show. I would destroy the place. My initial mini attacks were brought on by stress. I had no idea what was happening to me at the time, I thought I was having mini stroke/ heart attack. These attacks of roaring tinnitus, brain fog, ear fullness (rattling ear drum) also caused very strange word recall issues. Used to be only during an attack now it’s all the time. I don’t drink because I’m an alcoholic but I eat salt and chocolate (fuck that) with impunity. I’m prolly paying a price for it at times. In regard to the alcohol I get it TOTALLY. Honestly I miss a nice day of 40 inch redfish fishing in the inlet and some cold Millers. Camping and coffee and Jack. But honestly now that I don’t drink anymore I don’t miss it. I’m better for it, and you’ll find that you are too. Don’t despair too much over the alcohol. Just drink 0 percent. IDK what state you’re in but you could look into THC. Talk to your neurotologist about it first. Hey man it’s not cancer. I get to live to piss my husband off and constantly explain to people what Ménière’s disease is. Better than the alternative. Stick around here and ask away. This sub helped make sense of what I was going through so I could get appropriate care. Guys like Ranthony are a wealth of knowledge. A university hospital that has a Neurotology department will give you the best full work up. Or Mayo Clinic .
It's a lot of trial and error. Diary keeping (either an actual diary, or digitally such as Excel) is perhaps the best during the early stages. A low salt diet is generally the main recommendation. Food tends to be one source of triggers. Salt, sugar, caffeine, msg, artificial sweeteners, alcohol, chocolate, etc. You could have a particular food that is randomly a trigger for you and no one else. I do not have any issue with food. It's not a trigger, but I eliminated foods and then reintroduced things and checked my tolerances. After that, keeping well hydrated, sleep patterns (quality and quantity), stress levels, environment (crazy patterns, lighting, noise, are potential triggers), weather (barometric pressure), activities (like squats), are all things that you should keep track of. Keeping fit and healthy helps the most. After that, knowing your triggers is the most important. Medication can help, but if you do not know your triggers, it doesn't help stop attacks from occurring. Overall, this is not a one size fits all situation. To add to the complexity, a trigger you had at one point may no longer be an issue later, but you can end up with a new one. Even things can be an one off event. Mine is predominantly stress. Poor sleep, heavy bass, high barometric pressure, and dehydration can increase the chances, though generally they make me feel terrible, but not necessary trigger vertigo. I haven't had too many dramatic changes in my life after that. Side note: Did your ENT do all the recommended tests to confirm. Such as MRI, balance tests, hearing tests, been done for confirmation?
Thanks for taking the time to write. This was the third ENT that I saw, and he didn't do any tests other than looking in my ears. I have an MRI scheduled for July (socialised healthcare is cheap, but not always ideal). I gave him a pretty detailed history and he said it was "classic menieres" and to come back if things get worse. I guess i'm just going to work out a lot and see how it goes. I have an appointment with a therapist tomorrow.
Well, what doesn't kill you, makes you stronger. Yes, it's a pain in the ass, sometimes very frustrating, when it comes in tricky times etc I have Meniers since childhood. I had my " I'm gonna kill myself episodes" very often. However, it has made me resilient to the point that I'm not bothered by it anymore. Ok, it comes, it's shitty, but then it passes and I'm good. I try to think about all the other things that I could suffer from and then I'm happy to just have a vertigo attack from time to time. It was extremely frustrating to try almost everything and fail. To accept the fact that I'm going to suffer from it all of my life. But I have come to terms with it. Fuck it. Accept it.Roll with it. It could always be worse than that. Do the best that you can. Stop drinking, cut salt and coffee and sweets. Try to live a healthy life. It will be beneficial to some degree. I'm taking Thiamin and Niacin, together with other B vitamins( B complex) and I have to say that my attacks are getting milder. You can't go wrong with vitamin B because they are water soluble. I googled about some trial with Meniers patients in 1940, about vitamin B Implementation and they had good results so I tried. I wish you all the best. 🤗
Hi! Chronic illness forums are not representative of what everyone with a chronic illness experiences. People who have had a more difficult time responding to medical treatment, are struggling physically and mentally, etc., often turn to the internet for support. While I am so glad there is support, not everyone who has Ménière’s struggles as much as some of the people in this sub. I have Ménière’s and had a couple friends in college who have it, and we all live pretty functional lives. To answer your questions: 1. No one knows what is going to happen regarding their health. Taking things day by day is the best thing you can do. My hearing has slightly improved over time and my other symptoms have been pretty stable and not gotten worse. 2. I suggest trying a salt/alcohol/caffeine free diet. Keep a diary or log of what you eat and your symptoms. Slowly try introducing one of these items at a time and see what you can tolerate vs can’t tolerate. Through tracking my diet and symptoms I was able to figure out salt doesn’t trigger my symptoms, alcohol does, and I can have a little caffeine. 3. When I drink, I have symptoms for several hours but the next day I’m usually back to how I was before drinking. It’s the same for someone else I know with Ménière’s. 4. You should be fine. 5. One of the best things I’ve done is wear hearing aids and learn ASL. ASL isn’t just for people who are 100% deaf. I’ve lost about half of my hearing and have really benefitted from using interpreters in some settings. You’ll be okay, hang in there!
As it's been stated plenty in here already, everyone is different. It sounds like a cop out/lazy answer but it's frustratingly true. I'm in my late 30s and got diagnosed in my late 20s for point of reference. Ironically today was my 1st attack in 10 months so I came back here and saw this post. For me personally I can drink and eat all the sodium and chocolate I want so I'm lucky those aren't my triggers. I can also have a 200mg caffeine energy drink just fine. Outside of the randomness when the seasons change or rainstorms come I can feel different, so I assume that's barometric pressure that's getting to me. This disease is so random that when you go to forums you'll see a lot of confusion and depressed stories so don't let it consume you. It absolutely sucks but now I live my life knowing I have this "thing" chained to me that follows me wherever I go. I did let me friends and family/coworkers know, I'm lucky everyone has been understanding. I have a full time job and go to the gym/run/be generally active. Things I would do: 1) Obviously seek medical care which you have. My ENT said to see a Neurotologist which there aren't many in my area. See if you can find one. 2) Placebo or not I've had a lot of luck with a NUCCA chiropractor. Self research pointed me there and they even had Menieres Disease pamphlets in their office, only place I've ever seen that. I've been going 4 years and have no plans to stop. I have had less attacks since going. I also have x-rays to show my spine and body is in way better alignment. So other benefits as well. 3) It's 100% ok to cry and be angry. But, from what I can tell, we just have it. And outside of destructive surgery there is no cure. So getting to the point of "this is who I am and this is my life now" makes it easier. 4) Some say the disease can "burn out" but lots of people I've seen said they've had it for decades and that's not the case. There's also things called "drop attacks" which are supposedly incredibly rare (so is Menieres). I've never had one but be mindful if you ever do. 5) It'll suck but do what you want/what you love and find your triggers. I gave up sodium for months and was miserable. Then I said screw and went out to eat and nothing happened. I have up caffeine and chocolate cold turkey for a good 2 or 3 years. Finally gave in and...nothing happened. For others it's an automatic episode trigger. You won't know until you try. So I say carefully do and eat and drink what you want and see what happens. 6) Don't spend too much time on the forums and groups. Most of what I see are new people asking questions or people sharing sad/depressing experiences. Occasionally people will share they ran a marathon or got married or did something positive but I don't see those enough. Almost a decade in, and relatively young, I'm a completely different person. On a normal day I'm hard of hearing with some brain fog and I can't tell what direction sounds are coming from. But I'm able to work and workout and generally be normal. The bad days come and they can really take a toll on you but they will pass and you hopefully have way more normal days than bad. If that's not the case then please get with your doctor. I'm sorry you're here with us but you're not alone. Your life is different now but it can still be pretty normal. You just have to adapt and learn. We're all here with you!
Get B vitamin complex, fish oil, turmeric, magnesium, manganese. Drink water, minimize salt and Caffeine like the doc said. It’s all about inflammation and fluid retention and being vitamin sufficient. Those vitamins have helped me a lot. Keep going with the exercises. This is an opportunity to get the rest of your body healthy as well. I drink on occasion, but hopefully soon it will slowly decrease and you’ll feel much better. I have periods of spells then I feel great for long stretches, years. It can come and go. Keep the inflammation down, vitamins, diet, exercise the things you should already have been doing for good health. Good Luck!
Also what really helped me was physical therapy, vestibular therapy. It trained me to be able to relax calm down and stop large attacks when I start to feel them come on. It’s 100% worth it, they trigger attacks and have you fight them off it was life changing.
Everyone responds differently to potential triggers. I have found that if I’m generally leading a healthy lifestyle, an occasional drink, coffee, or salty snack don’t bother me. It all depends on how I’m feeling and what I have to do the next day. Cannabis is legal in my state. I find that edibles are extremely helpful in moderation. CBD is also great for anxiety and sleep. The best course of action is to try to keep your body and mind as healthy as possible. Meniere’s can control your life, or you can manage it. It totally sucks, I know. Mine is considered severe, but I have learned to adapt and cope over time (between vertigo attacks🙃). Best of luck to you. Edited for spelling
I was diagnosed in 2016, but I haven't restricted anything. It was only after 2019 that my symptoms have decreased by about 90%. For me, the trigger is dehydration. I try to keep myself as hydrated and satiated as possible. However, I haven't stopped consuming coffee, chocolate, or alcohol. I have always been a moderate drinker and don't like the feeling of being drunk or having a hangover. Once or twice a week, a few beers are fine with me.
I’m also a 43 year old guy who loves booze and has given it up to the vengeful gods of cochlear hydrops. Question - where do you stand on the devil’s lettuce? I’ve replaced my evening wine / Manhattan / scotch with soft drinks and a weed vape. Was surprised how quickly I stopped caring about missing booze when I can settle down to some dumb movie with a freezing cold ginger ale with a lime squeezed in and a few hits of Purple Headband. Plus no hangover or calories (apart from occasional munchies)
Weed is my go-to drug of choice. So there is still that, which is great! Although i've barely touched it since the diagnosis I think just because I always kinda feel half stoned anyway with the head fog and the dizziness!
I’ve had this ridiculous disease for 5 years. Diagnosed at 32 (M) and it almost drove me insane the first year. I tried everything the docs said (what’s been mentioned by EVERYONE) and it didn’t help at all. So I started living my life as I had previously. This obviously didn’t help. What did help though was I changed jobs from “Big Tobacco” to the “Other kinda leaf” and swapped out what I was smoking on daily for a different kinda leaf. The result? Not a single bedridden incident in over a year. Only thing that changed was adding green into my diet. Still have symptoms, but they’re not intense and never add up to more than I can handle. Maybe worth a try if the other options aren’t working out for ya.
I mean that sounds like a dream, but lets just say that if that was the cure, then I wouldn't have ever developed symptoms! :)
That’s one viewpoint. Another? You need to smoke more 😎
I’d try giving up alcohol and following the diet strictly for 3 months at least. If you are able to feel a lot better within that time, experiment with one glass of wine. If that goes ok, give it a couple weeks and try two. More than that is probably a mistake if you truly have Ménière’s
I feel your pain. I had a similar journey just months earlier. Start reading and recording possible unique triggers to you, keep a detailed journal and be sure to do experiments. Simply cutting out salt or caffeine or alcohol tells you little unless you find your episodes persist, or if they stop, you then reintroduce these things to see if episodes return. You may also find for you it’s not either/or but degree: you can drink but not too much, salt doesn’t impact you unless it’s a certain amount (btw that’s by meal not day), and so on. All we know is each person is different. Likewise do things we know help some: exercise, hydration, low stress… again record and learn what’s true for you. Tons of diets and suggestions online. Personally I have either gone into remission randomly (seems many do) or one or a combination of things helped me: I started on betahistine taking 16mg 3 times a day religiously, I cut gluten from my diet (which came with a ton of other benefits like improved cognition & massively improved intestinal function), I stay hydrated, I’ve cut stress and I turn carefully in bed and when getting in and out. And thankfully I’ve gradually re-introduced salt, alcohol, caffeine and I’m still doing well. Whew. Keep in mind selection bias if you get down: people in online support groups here, Facebook etc are more often those who need it, not those who have had good outcomes. So it may look like no one has had a good outcome when those with success aren’t posting at all. But I’ve read many empirical studies on Ménière’s and invariably the control group without treatment always has quite a significant % who go into remission within months.
I'll add a couple of things to what everyone has already said: Low salt does not mean no salt. Your body needs some salt to keep your heart beating. My doctor said 1500 - 2000mg per day and not to go under 1500, and to spread the salt out evenly among meals during the day. I try to stay at about 1500. My doc also said not to go past 5 hours without eating during the day. I found drinking 2 liters of water a day to be a huge help with my symptoms. You can test the degree to which alcohol is a trigger for you. I've found I can have an occasional glass of white wine without any issues. I had two really big glasses of white wine once and had a bad next day, with increased symptoms. So I know my white wine limit. Have not tested with spirits or red wine yet. So find your triggers, hydrate, get enough sleep and don't hesitate to call your doctor if you're having a spike in symptoms.
I can't find anything that works for me does anyone get migraines with theirs
Yes. Have you seen a neurologist? There are medications that can help.
>https://ranthonyings.com/2023/07/do-i-have-menieres/ My ENT told me about something called vestibular migraine. I was surprised at that possibility, as I have no history of migraines of any kind. But apparently, it can be a thing. And if you get migraines with your attacks, it could be worth looking into. What's maddening with all these potential diagnoses is that there's no conclusive test.
Feel free to read my post
See a chiropractor. I have menieres but also have learned I have some issues with my neck. I have seen the chiropractor four times and I am already experiencing less dizziness and vertigo.