I am a physician who developed menieres 3.5 years ago with severe vertigo attacks about every 2 months with 6 attacks in first year. They lasted 2 hours with vomiting, diarrhea, excessive sweating but now no attacks in 2.5 years and no progressive hearing loss. Just a little stable high frequency loss but initial VNG/ecog left ear definitely abnormal. Secret 900-1200 mg sodium daily!!!!!!! Rare HCTZ use less than once monthly or on vacation. Limit your sodium! Takes a lot of effort but balance is good and no progression. I will likely take Spi1005 when released for tinnitus but it is not bad. Look at all grocery labels for sodium and be strict. Also no ETOH or caffeine. I thought it was BPPV so wasn’t diagnosed until after 4th attack. Most attacks were after restaurant food.
So basically you are eating around 2.3-3.1g of salt per day, from what the nutritional value label says? Or you choose food with lowest or 0 salt and you add it by yourself? (Me, I try to do the second option) I am curious about your suger intake. Do you monitor this one too? Did you increased your water intake or something? For example, how much approximately do you drink per day now compared with before having Meniere? Your BMI is normal? I just ask this question for myself to see if I can correlate with some of my symptoms that keep oscillating. Thank you very much!
Not that much sodium! Around 600 mg for lunch and 300-600 mg for supper ( no breakfast). I never go above 1500 mg a day. Sometimes I have less than 100 mg for supper. My neuro-otologist says human body needs around 1000 mg day to function. I get by fine with a little less but have difficulty tolerating diuretics probably because of my minimum sodium intake. My BMI is average (6’1”, 178 lbs) I have never smoked and last caffeine use was in high school. I never add salt to food. I buy nosalt added turkey and low sodium cheese for lunch sandwich with bread 90 mg sodium each slice. Use lettuce and orange for lunch and a lot of stir fry and potatoes and fruit for supper. And yes I believe my sugar intake is too high.
Sodium is not equal with salt. Salt contain sodium, 1000mg of salt have 388mg of Sodium. That’s why I said you consume around 2300-3100mg of Salt (sodium 900-1200mg). So, did you consume 900-1200mg SALT or SODIUM?
Yes I am aware salt is sodium chloride but food labels in United states list sodium mg so that is what I use. Yes many items list salt in their ingredients but I find those items to rarely list mg. I have found my chloride to be a bit low by blood measurements when I was not tolerating daily low dose diuretics. The nutritional labels that are specific list mg of sodium not salt at least in this country. I do not limit glucose or fluids. I believe the sodium is transported into the endolymph and pulls the water with it to be isotonic but I believe one study ( negative efficacy) had menieres suffers drink excess fluid. Maybe they were trying to dilute the serum sodium. I believe the diuretic efficacy is preventing the sodium transport/influx to the endolymph.
Yeah, I just want to be sure we talk about same thing . I am from Europe and here we rarely see SODIUM, always Salt measured in grams. ( hope you didn’t get me wrong or something, ‘cuz not intended ) For me, at blood measurement I was in the parameters with sodium and potassium while taking diuretics. My neuro-otologist said I can eat salt as a normal person as long I am on Diamox 250mg(acetalzolamide) 5x per week as she prescribed. I still try to stay as you, at around max max 1500mg SODIUM per day. Hard, as sometime I would like to enjoy some junky food+ now checking all the labels I can’t believe how much sodium is in everything (excessively high). About liquids, I think I am one of that person. For sometimes I was drinking more water the usually, before “probably Meniere” I was drinking around 1.5-2L of water…then I started to drink 2.2-3L because I wanted to eliminate sodium… I too don’t drink alcohol( before I was anyway a very rarely drinker), didn’t smoke, coffee very rarely(2-3 at some months) brewed at home with no suger. I asked about BMI because I am a bit overweight, my Index și 27.3( 175cm and 83kg) and glucose level is ok but HOMA Index was not ok at my last check… p.s: I am 29y old, I was diagnosed 4months ago kind similar to you. My left ear was affected, first they said is vestibular nevrite, then BPPV. Vertigo started after some days after my hearing was affected, accompanied by nystagmus+cold sweat+pressure/fullness's, I vomited 1 time because they told me to do the manuver for BPPV… My hearing is affected on high frequency with tinnitus on around 8-9000hz(manageable 70-80% of time), lower frequency sometimes but the usually come back to normal range. During this 4 months my symptoms was all over place, except vertigo… which subsided after one month form the installation of “probably Meniere”.
OK I understand labeling is different in the states. I was diagnosed after 4th attack via VNG/ecog testing. My 5th attack was after I went to a restaurant and ate a philly cheesesteak sandwich. I had looked it up online and average was 1300 mg sodium and since that was the only sodium intake that day I chanced it and next day had another severe vertigo attack do I learned my lesson and at restaurants only order steak without sauce and baked potato with no butter and use pepper for potato and then I might use HCTZ if any salt taste to the meat. On a cruise and trips to Europe I take HCTZ daily but at home less than once monthly use. My neuro-otologist said I am their model pt. It takes a lot of effort (zero Italian food). I often wonder if others are progressing because of noncompliance with ETOH and occasional high salt meal and just want to share how I control my menieres and lead a normal life.
Low salt diet was the game changer for me too. I have also worked out, after much experimentation, that oats for breakfast EVERY DAY, or something very high in beta-glucan, seems to give me a higher sodium tolerance. In other words if I have my oats every day I don’t need to think as much about how much sodium I ingest. I still never overdo it. But I can eat out and not have to request a low sodium, and therefore usually low taste, meal! My experimentation came from realising that I when I would have a vertigo attack I’d had something different for breakfast that day or the day before. I can now travel the world without stress of a vertigo attack. I take these things called Betaglucare hearts (I am in Australia so not sure how available they are worldwide) on the plane with me and just eat them dry at ‘breakfast’ time. (They taste like cardboard but care factor of 0 when they prevent an attack). I have also worked out that one third of a pack seems sufficient for me. And oats are available in most countries so I buy a pack when I land and either buy some yogurt to mix them with or eat them dry, washed down with a cup of coffee! I take spare Betaglucare hearts with me just in case I can’t get oats for some reason. For complete transparency, I am also taking Betahistine (2 a day, morning and night) and a strong multi B vitamin containing B5 and B6. I am not overweight and eat reasonably healthily and limit caffeine intake to 2 per day. I was diagnosed with Ménière’s 6 years ago and was having monthly attacks until I discovered my oats and sodium. I too have not had an attack for 2-3 years (apart from one when I had covid) my ear also seems a lot clearer in general and my hearing improved too. I hope this helps people because I know how debilitating the fear of having a vertigo attack can be. Initially I would not leave the house for fear of an attack driving or going to the supermarket. But now I can freely travel the world. Best of luck to you all. X
82 year old German diagnosed with MM some 25 years ago -right side- dozens of Vertigo attacks (incl. vomiting) some lasting 8-10 hrs, these decreased over the years during which time two bone breaking 'sudden drops' and over time increasing hearing loss. As the most serious attacks had occured after`salty meals`I had drastically reduced salt intake also coffee and chocolate, Betahistine did not really do anything noticeable. Out of the blue, 7 months ago, I suddenly had fairly moderate Vertigo for a few hours followed a week later by a severe attack lasting 12 hours (vomiting) and another just 2 months ago. I suspect that MM had affected the left side. So much for my background. A few years ago I had researched the net for information and had come across one posting which reported some success which I had noted down as: 250mg Niacine (Vitamine B3) and 20 mg Vitamine B1 daily for 2-3 months.......I had scribbled this down but cannot anymore, unfortunately, find details of the correspondent. However, I decided to give it a try two weeks ago and the result has been dramatic, absolutely free of Vertigo (good for my golf) AND for the first time in years I can (just about) understand a conversation without highperformance hearing adds. I plan to have a blood test next week and again at the end of the 3 months. Any comments /experience would be appreciated.
A few years ago I had researched the net for information and had come across one posting which reported some success which I had noted down as: 250mg Niacine (Vitamine B3) and 20 mg Vitamine B1 daily for 2-3 months.......I had scribbled this down but cannot anymore, unfortunately, find details of the correspondent. However, I decided to give it a try two weeks ago and the result has been dramatic, absolutely free of Vertigo (good for my golf) AND for the first time in years I can (just about) understand a conversation without highperformance hearing adds. I plan to have a blood test next week and again at the end of the 3 months. Any comments /experience would be appreciated.[/QUOTE] Hi Klaus That sounds interesting. Please keep us updated. If you have lasting success, I would try it too. But I'm still wary of the high dose of vitamins.
I've been taking a regiment which is basically what you have seen..Super Vitamin B complex,B1 250 mg,B12 1000mg,Niacin 500 mg plus Vitamin D and C one a day for over 2 yrs .I had Endolymphatic sac surgery back in 3 yrs ago which saved my life.Ive been taking Triamterene-HCTZ for at least 10 yrs now since I first started having episodes .My ENT told me if I wanted to back off the Vitamin B Regiment to do so.I did try and I felt like I was starting to have episodes again..I just stayed on regiment and my doctor said it was fine.I haven't had a full blown attack since 2022 except for several small ones that I can handle.I don't really worry about salt intake.I just dont pick up the shaker anymore.Good Luck
My episodes have never been triggered by salt. I have spent so much time trying to figure out what causes this. For me the only thing that I am beginning to notice is that some distress happens prior to an episode. Sometimes it is a major event sometimes impact full but not severely distressing. We are each different. I know, but this last episode has really impacted my hearing. I really can't hear out of left ear anymore and it hurts a little with lots of tinnitus when it seemed coming into this episode the tinnitus was nearly gone. I have to find some medication that will help with episodes from the start. The lying in bed, flat on my back, and afraid to move for fear of throwing up for 10 hours is really hard. If anyone takes something that works right away that helps, I would love to know what it is.
Did you went to the hospital to take intratympanic steroid injection when your last episode affected your hearing? There is a window of around 2-4weeks that can restore what you had… Did you had an MRI with protocol Hydrops to see what’s actually happening in your ear or you was diagnosed clinically only(verbally by symptoms)?
I feel like salt is 100 percent my main trigger. Sugar when eaten with salt compounds my problems. I try to keep my sodium intake very low most days and I try to keep my sugar intake under control. Holidays really do me under because I overdo everything. The last 3 years I have been sick and dizzy from Thanksgiving through New Year's week. Super low salt, low sugar, low caffeine, no alcohol, lots of water and hibiscus tea seem to really help me.
I went from June 2020 to May 2023 without an attack then boom. Then June 2023 to Feb 2025 without another one. I guess I am lucky that mine are well spaced out but they are pretty brutal when they happen. I wasn't taking anything to combat them during these periods .Tinnitus is horrific - it is up one day then then goes down for a day then back up again
I had Meniere's Disease and perilymphatic fistulas. My ENT patched the perilymphatic fistulas with scalp tissue and my Meniere's Disease has burned out. I have bilateral Cochlear implants and life is back to normal for me.
However, I decided to give it a try two weeks ago and the result has been dramatic, absolutely free of Vertigo (good for my golf) AND for the first time in years I can (just about) understand a conversation without highperformance hearing adds. I plan to have a blood test next week and again at the end of the 3 months. Any comments /experience would be appreciated.[/QUOTE] Hi Klaus Any news? The three months are almost over.