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148057 tn?1231426991

Meniere's Disease - Open forum, what worked for you?

My mother was diagnosed with Meniere's disease about one year ago.  Her symptoms are primarily those associated with loss of hearing.  Ironically she was diagnosed and started experiencing the problems/symptoms shortly after having a crown put on one of her molars on the side with the Meniere's.  Has anyone heard of dental work making or creating Meniere's?  Do you think that it is possible it really isn't Meniere's and just something that happened with the dental work?  She has seen two different specialists and both just basically told her to avoid salt and caffenine.  Neither of these things have helped.  Any suggestions?  What has worked for you?  Thanks so much.
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Avatar universal
Hello All,

I'll try to keep this short...I've had Meniere's for 14 years.

For the first 5 years, I was in emergency rooms and saw neurologists, balance disorder specialists and a few other docs. None of them knew what was going on with me, and I was diagnosed with everything from Migraines to brain tumors (presumptive diagnoses ruled out by MRI) to drug abuse. I was 21 and scared. Initially, only my left ear was affected.

Once I as diagnosed with Meniere's, I was referred to a neurotologist in Dallas (http://www.dallasear.com/conditions-menieres.html). My dizziness was treated with an inner ear perfusion of gentomycin, and that was pretty much the end of the dizzy spells. Eventually the disease went into remission altogether for several years, and then it returned in both ears. I still don't get dizzy spells (thank the Lord), but my hearing fluctuates wildly, and I do periodic treatments with oral steroids.

This disease is weird. No one really knows what causes it or what treats it, and it takes HIGHLY individualized treatment to cope with. My heart goes out to each of you. I have lived years with debilitating dizzyness for anywhere from minutes up to 6 or 8 hours at a time. Now, I have to explain to people why I am able to converse normally with them today and next week when I see them, I might say, "Huh?" a million times in the course of a conversation. I have tried almost everything mentioned in this thread, chiropractic, diet, atibiotic/antiviral therapy, anti-vertigo, anti-siezure meds, etc, etc. There are months when some things seem to correlate and others when everything seems incredibly random. Find a doc that knows this disease and stick to him or her like glue. In my experience, there aren't that many of them out there. And if you are in Dallas, find Dr. Robert Peters and Medical City. He's amazing.

My best to you all,
Chad
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1 Comments
I also had Gentamicin inner ear injections after 3 years of debilitating vertigo attacks from Menieres. I had to learn to balance again but the vertigo was gone. I have been symptom free to over a year now. Finding a doctor that treats Menieres is crucial to getting relief from this disease. I am outside of Fort Worth and after a year of searching, I found Dr. Theodore Benke in Cleburne who was able to help me. He is an hour away but the drive was well worth it. Dr. Benke and Gentamicin gave me my life back. It's been years since you posted your testimony above. I hope you are well.
Avatar universal
Hey I was just diagnosed with Menieres, after 5yrs of ringing,ear feeling full,headaches severe and I need help help help I can't work I puke when I get the dizzy's as I call them
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2 Comments
DO U STILL GET SICK OR FOUND OUT YIUR PROBLEMS
I had complete deafness to my left ear that happened 40 years ago after a jolt to my head caused by a fall. The hearing loss was irreversible. Flash forward 40 years: Beginning in June 2018 I suddenly started having severe vertigo attacks. These attacks occurred for 3 years, where I was having 3 to 5 attacks a week that would last from 4 to 24 hours. The attacks included rotational vertigo where everything appeared to be spinning 100 mph. The attacks were blinding and nauseating, I could not see or walk unassisted, and could barely talk during attacks. I had several attacks at work, 2 attacks while I was driving where I could only put on the brake and wait to be rescued by strangers. The attacks hit suddenly, sometimes knocking me down. It took 2 years to find a doctor that treated Menieres but I found an excellent doctor an hour away and after a year of trying steriod injections, in the bad ear, oral steroids, Betahistine, Meclezine, I made the decision to have Gentamicin injections in my bad ear. It took 1 injection and then a 2nd injection a month later and those killed the balance function in that ear, which also killed the vertigo. I had to learn to balance again, using only the balance function in my good ear, and I was unable to drive for 3 months because it wasn't safe. I retired just before the injections but I would not have been able to work during the recovery. After 6 months I was fully recovered. The last vertigo attack I had was a few days after my 1st injection and that was in April 2021. The recovery was rough but it was so worth it. The Gent injections gave me my life back, which is exhilarating. I feel badly for anyone dealing with this debilitating disease. I truly cannot think of anything worse than Menieres. May healing and good health return to each of you.
Avatar universal
Look up an UPPER CERVICAL CHIROPRACTOR  that adjusts your first vertebra (C1). Read this: http://hearinglosshelp.com/blog/atlas-adjustments-alleviate-menieres-disease/
Make sure you choose a good doc. God bless and heal you :)
Helpful - 0
1 Comments
I was doing atlas adjustments and they worked great, all vertigo stopped and I felt normal again. However after about 4 months my adjustments began holding less and less, so instead of visiting the Chiro less I was having to go more and more often. I have no idea why this would happen when everything was going great for the first few months. At this point my atlas goes back out within hours of being adjusted. We took new x-rays and recalculated the adjustments, but it didnt help. Any thoughts?
Avatar universal
Hi...thanks for your suggestions. I'm going to give them a try. I have ringing and pressure all the time with bouts of vertigo (about 3x's a years.
Helpful - 0
Avatar universal
I have Meniere since 2009 and I suffer a lot ,one day  I saw a video in youtube about some ecxercise I did twice and since then never another attack ,it is about making some circular rubbing and a bit of pressing on the base of head staring from the back of eares to the middle point when finish applied a hot pad covered with clot ,for 10 minutes ,it was amazin. good luck
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Avatar universal
After suffering a lot for years I saw a video in youtube on menieres cure I did the exercise twice with the knuckles rub making circles around the base of craneum staring from the back of ears to the middle point pressing a bit after finish applied a hot pad covered with clot and keep it for 10 minutes ,it worked for me Good luck
Helpful - 0
Avatar universal
I have found the CURE for Meniere's Disease because #1: my dear niece (her name is Dana who is my relative) had the problem and she is now cured; #2: I found the cure through an understanding of salt dynamics because of my research into geology. The cure involves just drinking extra glasses of water from the time you first eat any salty food and for the next 2 to 4 hours. This is because water DILUTES the dissolved concentrated salt solution in your body as it travels up into your inner ear system (called the endolymph fluid). Without the consumption of extra water, then the endolymph fluid expands in your inner ear to create the dizziness & imbalance which is called Meniere's Disease. And DO NOT take a water pill because it will not help Meniere's Disease since the water pill does not "kick in" the water needed to dilute the salt in your inner ear. Also, you can eat the saltiest food on earth BUT you have to drink the extra water in PROPORTION to the amount of salt-amount consumed in your meal or snack.Thus, the rule of thumb is: you can always "over-drink the excess water" but you can "never under-drink the extra water".

In closing, I'm proud to say that I have cured my poor niece (my relative) of this disabling,biomedical malfunction, and I am sure my advice will cure you. I just want to add that the reason the doctors have not found a cure yet is because they don't have a knowledge of salt dynamics from geological reseearch, but I DO. Hence, everybody should spread this same good newssssss, so that anybody with Meniere's Disease can learn how to defeat Meniere's Disease. Sincerely, Michael I.
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Avatar universal
I had Meniere's diagnosed two years ago, no fever, no infection, etc.  After reading this it does actually correlate to having 3 half crowns placed on my molars.  It took a while for the dizzy spells to come up.

A few months after being diagnosed i took my family on a camping trip.  Surely, i got a dizzy spell and ended up falling on a Yucca Tree (not pleasant at all).  I found a local doctor which gave me 2wks of antibioatic treatment since i had many punctures on my skin and some leaves had to be surgically removed.  The dose was: 1000mg three times a day of amoxicilin.  

On the 2nd day of taking the amoxicylin, the fullness of the ears back of my head was gone.  It was very relieving.  I guess i had an inner ear infection all this time but didn't manifest in any bloodwork or fever.  

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Avatar universal
Anchorage dentist suggest you the very good solutions for all these problems
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Avatar universal
Ironic that mention was made of dental work preceding Meniere's symptoms, as I had a similar experience.  I had an unusually long dental session, and it coincided with exacerbation of hearing and balance problems on that side of my face.  Suddenly I was struck with bouts of high pitched VERY LOUD hums that were maddening, and dizziness that made me vomit uncontrollably.  I had had some hearing disturbances for decades with infrequent bouts of dizziness, but nothing like this, and frequent sinus infections left me with air cell disease.  After several ER visits and seeing several ENT specialists, the umbrella term of Meniere's was made.  I call this an umbrella term because I truly believe like in many other diseases, symptoms mimic.  Long story short, the usual treatment approach of diuretics, nasal sprays, sleeping sitting up, and other things either had no effect, or made my symptoms worse.  Indeed, I went through a month of hell after a hearing test, and I refuse to ever have one again.  I have environment allergies, but am unable to undergo shots because of drugs I am prescribed.  I was told by the "professionals" that my only recourse was what I considered barbaric surgeries and procedures.  I am very in touch with my body, and something inside me kept saying there was more to this.  Anything I said to the doctors fell on deaf ears (pardon the pun) as once they have you slotted in a diagnosis, there is little that can be done on the patient's end to sway them.  I took control, and found that Aspartame could trigger symptoms.  It is important to research ALL foods and drink, as milk contains it just as much as soda.  I switched my nasal spray to Dymista from Fluticasone, stopped taking the diuretics unless I felt it was warranted, and then took only one dose, took allergy medication when needed (but nothing "drying" that could cause mucous plugs), and on the advice of the first ENT I saw who practiced what he preached, started a daily regimen of CoQ10 100mg.  No more than 100mg per day should be taken.  Several times a week I supplemented with Vitamin B time release, and continued my twice daily fish oil, along with a once a week calcium supplement.  I learned from my primary doctor that I was Vitamin D3 deficient, and began a 50,000IU regimen once a week.  Knowing the jaw bone is influential in the inner ear function, I learned I was suffering from bone loss in my teeth and jaw.  Vitamin D enables the body to process calcium, and with my D deficiency, I suspected the middle and inner ear bones might very well be compromised.  I cut back on caffeine, started eating responsibly (to lose weight and stem other health problems), and made sure not to expose that ear to loud noise, or cold drafts.  I know many people have relied on a course of antibiotics, but this can be dangerous.  Antibiotics work by increasing one kind of bacteria flora to attack another, and excessive use of antibiotics will cause you more problems than you have now.   After almost 6 months, I started to feel something going on in my ear.  It felt as if a blob was inside that was trying to move.  I started being able to blow wads of bloody mucous from that nostril.  The tinnitus was different, and the constant pulsations of my own heartbeat which I went through for over two years non-stop disappeared.  Much of my hearing in that ear returned.  I still heard some hissing sounds, and sometimes I would get a high pitched whine, but it wasn't very loud, and usually occurred while lying down, dissipating soon after getting up.  So far, I haven't had a vertigo episode in 7 months, when before the longest I could go was 1.  My constant fear of becoming dizzy in public, or behind the wheel of a car subsided greatly because I no longer was walking around with that feeling of ear fullness, and unsteady gate.  If this is as good as it will ever get, I am thrilled.  Will the debilitating symptoms return?  I don't know, but the way I see it, if I could gain control over this when doctors failed, I'm ahead of the game.  My best advice to other sufferers is to research, experiment, and don't buy into the diagnosis, or that your only hope is what doctors tell you.  Like all illnesses, money is made in treatment, not cures, and the last thing a doctor wants to do is admit that you can succeed where they can't, especially if it's a holistic approach.  My ENT (a big shot at Vanderbilt Hospital in Tennessee) refuses to believe that my problem could be contributed by nerve damage, a reversing cervical spine, spinal arthritis or herniated discs, or even the toxicity left by chemotherapy years earlier, all conditions confirmed by previous doctors and tests.  Don't be afraid to ask questions, challenge, and seek multiple resources.  
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Avatar universal
    Dear Luckyman  
   Hello, I have been suffering with meniers for seven years now and have been thru every drug and nothing has worked.You do want to get off the clonzapan,,it is addicting,,and they won't tell you that.
    I recently found a company that has an herble remedy that does work.
I am a class a truck driver and heavey equipment operator that has not been able to work for over two years because of the meniers,,it  had got to the extent of not being able to drive and not being able to leave the house.The company's name is Tao of Herbs and there supplement works.
    You can contact them at tao of herbs.com and ask for clear eye and sharp ear this works,,,I regained some of my hearing on the right side and it took away most of my dizzieness,,,good luck to you,,,i hope this helps
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Avatar universal
I was just diagnosed with Meniere's today.... what are my triggers?

-Going up escalators (Feel as if I'm gonna fall backwards)
-Heights (never been afraid of them, now terrified of them)
-Chairs without any upper back/neck support on them, especially at movie theaters or even little tiny theaters
-The next day after drinking alcohol, usually wine which I LOVE
-Certain tones, such as that of a Skype call I am making
-Stress

My symptoms are not classic symptoms though. I only have tinnitus in my right ear. I don't get dizzy, thankfully, but in some of the situations above I feel like I'm gonna fall or pass out. When this all started, it happened around the same time I was going to PT for a neck issue. During this timeframe, I had a crown placed on my tooth (now I have 2 crowns back to back on molars) as well as came down with a Hep B virus. I'm uncertain of what caused the meneire's, It also led to some weight loss somehow.

That being said, my doctor is starting me on Clonazepam. I'm not sure what this is going to do for me other than treat any anxiety or panic coming with this. I'm totally convinced this is not Menieres and something else causing the issue, which will hopefully subside within a year. I'm determined to make it stop/go away
Helpful - 0
Avatar universal
Hi everyone,

I was diagnosed with meniere's disease when I was 25. Symptoms were vertigo attacks, dizziness, lightheadedness, sounds in my ear.
I managed to overcome it in 2 years time. Now I am 35 and I didn't have any attacks since then. I hope my story can be helpful  or maybe inspiring.

At first I felt very miserable when I heard the things my doctor told me. I felt depressed for 6 months. I was trying several things to get rid of that dizziness feeling but nothing was really helpful at that time.  I hate medicines, I never used them. After wrong attempts of recovery, I decided to get more involved with my dance classes which I was doing as a hobby back then. As I increased  my physical activity through dance classes, I felt much better gradually. I get less and less dizzy, had very few attacks which were completely gone after 2 years time. In the meantime I changed my career completely, I left my ideal of becoming an academic at the university. Instead I chose to become a dancer at a very late age.

Through time, I discovered that the problem was not related to  my ear actually.It was all about my tight  neck and my weak posture. As I improve my posture, learn how to ease those muscles in my neck, I never had any meniere related problems.Today I am perfectly healthy person which I owe to
my dancing practice and techniques that helped me to learn how to loosen my muscles and have an improved posture.

I strongly recommend meniere patients to check with a physiotherapist preferably  with a dancing background, and see a chiropractor who can realign their spine and other remedial methods such as pilates, feldenkrais practice, alexander technique etc. which can awaken the deep muscles never used before.

With some patience, listening to your body, what it really requires can change the whole picture. It definitely worked for me and hope it can work for others.




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Avatar universal
   For me, this horrible disease is clearly related to low blood sugar.
I have had Meniere's Disease for about a year and a half (I was diagnosed by an ENT), and have found that what I eat (and don't eat) makes all the difference.
   I show a lot of the symptoms of hypoglycemia when I have a "dizzy' attack (paleness, sweating, & shaking, along with the vertigo and nausea), and eating protein and carbohydrates helps considerably. I also keep a few  Lifesavers in my pocket whenever I go anywhere, as well as my motion sickness pills.
   Like a lot of other Meniere's sufferers, I've had to give up salty foods. I,ve found out that spicy foods also trigger attacks, even if these foods aren't especially salty.
   I have to eat breakfast every morning (not a big one), even though I'm not
a breakfast person. Skipping meals is not an option.
   I am not saying this will work for you (I am not a health professional), but it is what has worked for me.
Good luck.

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Avatar universal
How do I order it from Canada.  Is there a website.  
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Avatar universal
A quick sum up without reading the whole post would be the words sensitivity to hearing.  I have had Meniere's for about six years now.  It started with attacks about every three weeks with debilitating dizziness and lasting two to three days with violent vomiting the first day, dry heaves the second, and weak on the third.   They came about once a month.  Now, six years later the attacks come about once every two to three months.  The dizziness lasts only a few hours and sometimes vomiting and sometimes just causing me to lay down for a few hours.   I have ringing in my ears including my left ear which is now deaf.  Sometimes so loud it drowns out sounds in my "good" ear, the right one.  I have 30% hearing remaining in my right ear.  I tried many different hearing aids and hearing devices (such as tv ears) and only a few months ago heard about Menieres also causing a sensitivity to sound.   That discovery hit home with me.   As my hearing loss is in the higher range, hearing devices amplified those sounds and often caused me to feel like a arrow was piercing through my head.  It seemed to me the hearing aids brought on attacks.   When I learned about the sensitivity to sound issue, a light went off.  I no longer wear any hearing assists, my attacks are less frequent and less violent.  I think everyone is different, but maybe this news will help someone like me.  
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Avatar universal
Good Morning,
lost My hearing while talking on the phone and within 5 min.
the hearing was gone in my right ear and 30 min later dizzy and
unstable very hard to walk think or do anything. Saw gp who  thought
it was meniere's and I have app. 31st for test and what ever.
My thought's are with you and good luck
           Ron
Stevens Point WI
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Avatar universal
thank you for your thoughts, I have only had it for 2 week
and trying to find my way
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Avatar universal
My husband got an epidural shot for low back pain and felt funny the rest of the day. He woke up with dizziness and vomiting and could not stand up with out getting sick.  He was diagnosised with Meniere's 2 yrs ago and this is the worst episode he has ever had! We ended up in the ER where he had to stay until he could keep something down.  What I find ironic is that he has swelling in his right foot, ankle and lower leg and the ear that fills up with fluid with the ringing in the ears is the right ear also.  He is a poster child for allergies and has been on Zyrtec D along with a fluid pill. I guess my question is would that shot he got for his back pain set off his Meniere's?  I am so tired of drs not listening to what we are telling them and just ride it off.  Any suggestions?
Gigi
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Avatar universal
I have had this lousy disease for 27 years  Two surgeries.  The first one was just a money maker for the doc.  Second, they put that steroid in my ear.  It helped quite a bit for 14 years.  Rarely had an attack.  Past 6 months it came back with a vengeance.  Had an attack every 2-3 days.  Several times I had two in one day.  They were much more severe than I had ever had before.  Hearing was already gone in that ear.  I decided to have the labrynthectome surgery.  Had it on the 18th of April.  I was somewhat dizzy for about 4 days with an upset stomach.  Dizzy is gone but balance is still off.  I've been told it will take from 1-6 months to get the balance back to normal.  The good part is, no more attacks.  Finally...freedom
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Avatar universal
So far, things are getting better.  The attacks are getting further apart and milder.  The only thing I'm doing differently is taking a diuretic (a potassium-preserving kind), but I'm not sure if that's the reason or not.  I had a debate with my ENT on the effectiveness of dietary sodium restriction.  "Wouldn't my body's homeostasis negate my efforts to regulate sodium intake?" I asked.  Because I now know for certain that my kidneys are healthy and working properly, I should be able to safely assume that if I eat more salt, then my body will expel the excess, and if I eat less salt, then my body would conserve it.  If my body could not self-regulate, then I would be a dead man if I didn't eat exactly the amount of salt I need each day.  Unless I go to extremes, my kidneys will fine-tune my sodium levels no matter what I eat.  That's just the way it works.  It takes a diuretic to change the target level set by the kidneys.  The ENT did not agree, but I think I stumped him.  Doctors probably get nervous dealing with people who have science degrees.

Whatever the case, I'm doing much better now than I was four months ago.  For all practical purposes, I'm back to normal, and my hearing is fully restored to normal levels.  The tinnitus is soft to nonexistent.  The headaches are absent most days.  The vertigo is virtually a thing of the past, except for the occasional stumble.  This, I can live with.
Helpful - 0
Avatar universal
Hi,
I was having the roaring in my ear...very loudly and nothing was working. I lowered sodium, drank water all day, went to the gym, no alcohol, no caffeine...steroids didn't work...I was to I just have to deal with it pretty much by the ENT. Well then I went to a awesome chiropractor... After only 2 adjustments I am 80% better!!!!! He explained that if a bone is in the way(c1 or c2) then your ear can't drain. Hope this helps you!
Helpful - 0
1 Comments
Are you still getting your C1 adjusted? Are you still doing good?
4932645 tn?1365181985
Hi  there,
Wow, 40 years is a long time! It is also a testimony tat Meniere is a
NON- Terminal illness. that is precisely why  we should not give up on our quest to live a vertigo-free life.

I do not know if you have the disease present in both ears like I do. It certainly makes it the most difficult challenge to an ENT to treat a bilateral menierian. It is like you are very limited in your options.

In any case, I have been bedridden for years, yes years! in a row. I certainly understand your fears, apprehension, anxiety and depression.
Meniere has no cure...yet but it can be successfully treated and tamed.

I am living now a life that it seemed out of reach years ago. Have faith.
I do not want to spoil your reading but do not hesitate to contact me if you have any questions after you finish reading my story.

Fear not. Remember, stress is Meniere number one trigger!
all of your stories echo mine; that is one of  the reasons that prompted me to write my memoir. There is help available; unfortunately, not all specialists are fully knowledgeable on the subject
I will be waiting to hear from you again,
Blessings,
Mercy
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Avatar universal
I have been a Meniere's sufferer for forty years.  That's right.  Forty years.  Last Monday I suffered a particularly bad attack and am still "off balance.'  I have bought many books on Meniere's, anxiety and depression.  Mercy, I just purchased yours, hoping to find something that may help.  Because I am older, I am starting to give up hope.  This last attack, after a particularly good week, has me depressed.  There is an important event coming up in a few months and I am terrified that I will have an attack before or during it.  I rarely leave my house anymore.  So discouraged and so fearful.

I read the intro to your book and I like the way your story unfolds.  After I read it, I will report back.  God help us all.
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