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

[molldoll26]

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.

[medic1105]

I came down with Meniere's Disease after having  dental work (root canal with crown placement).  I have been advised by one of my doctors that I am not the only patient that he has seen come down with this after having dental work done.  I work in the medical field and truly believe that there is a connection between the two.

[coney1]

ME TOO !

[bbarbee]

In the last few years I have been experiencing all the symptoms of Meniere's Disease I will be tested for this in the next week.  these symptoms have been getting worse in the last 9 months. Whats interesting is that I have had braces & extreme problems with my jaw & TMJ since the braces & have been recovering from a spinal cord injury in the cervical spine.  My doctor  told me to go off all wheat  because a good friend of hers suffering from Meniere's stopped all wheat read an article that wheat made the symptoms and within a month found she felt a lot better. So I am going to give it a shot.  Hopefully this helps & if anyone else has any other advice, I would love to hear it.

[dooley750]

I started having attacks of Meniere's 60 yrs ago no longer have the Vertigo, have lost all hearing in the left ear. now have almost no balance.I have been doing balance exercises
for many months, any suggestions" John

[menieresdisease]

Get a prescription for Serc.  It is not available in the US but you can get in in the rest of the world.  Order it from Canada.  It is a life-saver and will help immensly with your Meniere's symptoms.  

[Venus2000]

I would get checked for a virus infection called HSV.

I am a Meniere's patient since 2005. When I was diagnosed, I learned from the ENT Dr. that Meniere's is 'a fight between my immune system and my middle ear'. I asked him what was the fight for, then he answered that if he knew, he would have found the cure for Meniere's disease.

Struggling for 3 years now, with increased symptoms in variety and intensity, I finally started a research and experiment with an antivirus called Acyclovir. Since all of my symptoms improved, I went to my PCP and demanded a test for HSV. I came out positive, and I'm presently on treatment for HSV. My Meniere's attacks have stopped.
No more vertigo, ringing in the ear etc.

It makes sense, because if the virus caused an infection in, or around my middle ear
that explains the fight, which is Meniere's disease. And when the virus becomes inactive, Meniere's goes on remission. There for Meniere's is not a disease, but a symptom of a disease.

[Venus2000]

P.S. throughout my readings and conversations with the Drs. who have seen me, I learned that an operation can reactivate the HSV virus. I had an abdominal surgery in 2002, and ever since I feel a pressure on the skin of my abdomen. It used to come and go along with the rest of my symptoms. Now it is a permanent condition.
I never had a root canal, but if it involves ganglias or nerves, the possibility exists.
I would still get tested for HSV

[pigcollect69]

I have a meniere's for 9 years now.I have had surgery on my meniere's ear 3 times.My meniere's has been terrible for the last few weeks.I have had many attacks.That have made it hard to walk at all. It makes my balance terrible.Nausa has been terrible as well.
How has everyone been latley with this disease? Thanks Pigcollect69

[carolyn411]

I will try to keep a long story short, but acquired all meniere's  symptoms shortly after wrenching my neck a bit. After MRIs, steroids, ENTs, and neurosurgeons, suggestions of hearing aids, I finally sought the help of a chiropractor. Many seem to balk at this idea, but I feel obligated to let those that suffer know that his manipulation cured me. He explained that any minor neck wrenching, ex: slipping on ice, etc., can cause misalignment. In my case, the 3rd, 4th(?) vertebrae was out of place, pressing on the nerve that controls hearing and balance and causing hearing loss in my right ear, tinnitus, and horrible vertigo. I know how very frightening and debilitating this is, and feel compelled to let others know that my doctor eliminated all symptoms in a weeks time, but had me follow a routine for a few months to strengthen my neck. I have been totally symptom free for well over a year. Can this be the case with all sufferers? I don't know, but I was angry with all of the other doctors that never even breathed the word chiropractor to me. Labels are often put on conditions and then procedures and medications created for the conditions, when sometimes, the answer is just so much easier. Just as not all doctors are created equally, neither are all chiropractors, but I found a very good one, new school, and incorporates natural well being. Good luck to all.

[medic1105]

One of my patients came down with trigeminal neuralgia after having dental work done.  It seems that physicians don't want to admit that Meniere's disease is often related to dental work.  Probably because that could open a can of worms that they aren't able to deal with.  

[Dr_No]

I would note that dental work involving mercury (amalgam) can weaken the immune system, and I believe that a weakened immune system is more likely to have an auto-immune reaction such as attacking the inner ear, because it must act more pre-emptively in attacking what may be an invading foreign organism, and lack of sufficient time for positive identification makes it more likely to mistake the body's own tissue for such an organism.  Mercury exposure is also associated with tinnitus.  The person whose relative had a crown should check to see if mercury was used to fill the tooth underneath the crown.  If so, the interaction between the unlike metals (mercury and gold or whatever was used for the crown itself) can set up a battery-like effect that releases mercury at an accelerated rate.

[Savingdogs]

I've been a Meniere's patient for around 25 years. I also worked in the dental profession and had alot of dental work. I don't see any correlation between dental work and my remissions/flareups.
However, I do see correlation between stress in my life and flareups. I would say that alot of people would find aspects of dentistry very stressful and therefore a correlation between that and Meniere's disease. My teeth have been fine for years now but my Meniere's disease very active.

I've also had temporary relief of symptoms with chiropractic manipulation.

[hayley391]

I have been suffering with vertigo for over 4 years now the first attack i had was very bad with vomiting and i could hardly walk. I was given stemetil which i have been taken since then i get dizziness daily and a fuzzy feeling and my eyes seem to glaze over and i feel very disorientated. I recently have been suffering with head pain and pressure in my head and sinus area and also a feeling of air in my ears. I have seen a ENT dr who has referred me for a MRI scan but thinks its likely menieres or a benign mass that is pushing on a nerve causing the dizziness and pain. I have also been given betahistine tablets. I do have a stressful job and the dr feels this is a cause maybe giving me tension headaches aswell. I feel so miserable like there is no end to all this and im only 22 :(

[rcors]

my mother in law has been diagnosed with meniere'. She recently was on  antibiotics for a unrelated breathing problem. During the treatment most of her symptoms were diminished.After the treatment they returned.Has anyone had similar results with anti biotics?

[C711]

I work in aviation and have been battling syptoms like this for 8 months now, unable to work or fly at all.  Had multiple CT scans, MRIs, 3 ENTs, neuro specialists, etc, and they are all stumped.  Just started having dizzy spells last month, so now we're talking Menieres more than likely.

I actually had extensive dental work done about 3 years ago (multiple crowns and root canals), but everything was fine up until about 8 months ago.  Now sure why all of a sudden it popped up, now my career may be over.  Being only 30 I am also concerned about living the rest of my life in pain like this.

RCORS, I have had strep throat and a sinus infection, and both times took antibiotics which did not seem to have an effect on my ear.

[iamtrouble08]

I was diagnosed with Meniere's disease in 2004 and had endolymphantic shunt put in in 2005. I felt better quickly after the surgery. Within the last couple months, I have been feeling severe pain in my left ear, my jaw and down my neck. My ear is full of pressure and although I haven't had vertigo, my balance is a joke.

PCP is trying to tell me nothing is wrong, but I will be returning to ENT Dr. soon.

Anyone else have pain associated with a shunt?

[Spur20]

I was diagnosed with Meniere's Disease in 2007. It started with mostly dizzieness. Then in September of 2008 I suffered something called otolithic crisis of Tumarkin, a disabling symptom which causes a sudden fall that may occur without warning. It was a terrible experience.  After seeing my doctor and going through a series of test I was given a higer dosage of diaretics.  I have been fine for the last two years.

Has anyone else experienced this?

[zubart]

I've had menieres in the left ear since 2003. At first they called it cochlear hydrops. After 7 months off work as an airline captain, the FAA approved a class I medical after proving the symptoms were under control. I flew for another 3 years and did pretty well. Then menieres reared its ugly head again and came on strong. It hit me hard to the point of ending a menieres attack with dizziness. I have not flown again since that onset. I have gotten better, but the dieses is very unpredictable. One day you think your over it and it’s gone forever and then the next day it slow comes on again. I get all the classic symptoms of menieres. First, its tinnitus, then fullness and pressure, then hearing loss, and finally dizziness anywhere from 10 minutes to 2 hours. Then, alls fine again in the ear until the cycle starts again. The Cycle may run every 24 hours, or every 3 hours, or every 6 days, who knows. That's what makes this dieses so frustrating. You never know what you’re going to get. One day you wake up and it's gone. You go 2 or 3 years with maybe slight tinnitus and that's it. With menieres, you’ll find yourself over rationalizing about causes, cures. Where did the menieres go and what made it leave? What causes it? They say auto-immune, allergy, or virus, but the experts don't know.
I use to go to a very good clinic in LA for 5 years with the best doctors available. They believe menieres is brought on by allergies to foods and the environment, which causes an auto-immune reaction. So their primary treatment for menieres is allergy shot treatment along with hydrochlorothiazide 50 mg and papaverine. This actually seemed to work somewhat. Bur, here’s the cruel part, you can not get papaverine anymore because the manufacture stops making it. I have noticed that my hydrochlorothiazide treatment is not as effective anymore without the papaverine. Papaverine enabled the hydrochlorothiazide to get into my inner ear and keep the fluid out. Papaverine is a vasodilator and enabled excellent blood flow which was good because the inner ear has very poor blood flow. Now, instead of taking papaverine, they recommend taking niacin twice a day to increase blood flow. It doesn’t work.  
I was wondering if anyone collects disability for their menieres. I was on the Social Security Administration website and saw they now have included menieres disease as a NEW qualifier for disability payments.
2.07      Disturbance of labyrinthine-vestibular function (Including Ménière's disease), characterized by a history of frequent attacks of balance disturbance, tinnitus, and progressive loss of hearing.  With both A and B:
A.  Disturbed function of vestibular labyrinth demonstrated by caloric or other vestibular tests; and
B.  Hearing loss established by audiometry.
Has anyone attempted or is now receiving disability because of menieres or other related disturbance of  the labyrinthine-vestibular function?

[zubart]

I've had menieres in the left ear since 2003. At first they called it cochlear hydrops. After 7 months off work as an airline captain, the FAA approved a class I medical after proving the symptoms were under control. I flew for another 3 years and did pretty well. Then menieres reared its ugly head again and came on strong. It hit me hard to the point of ending a menieres attack with dizziness. I have not flown again since that onset. I have gotten better, but the dieses is very unpredictable. One day you think your over it and it’s gone forever and then the next day it slow comes on again. I get all the classic symptoms of menieres. First, its tinnitus, then fullness and pressure, then hearing loss, and finally dizziness anywhere from 10 minutes to 2 hours. Then, alls fine again in the ear until the cycle starts again. The Cycle may run every 24 hours, or every 3 hours, or every 6 days, who knows. That's what makes this dieses so frustrating. You never know what you’re going to get. One day you wake up and it's gone. You go 2 or 3 years with maybe slight tinnitus and that's it. With menieres, you’ll find yourself over rationalizing about causes, cures. Where did the menieres go and what made it leave? What causes it? They say auto-immune, allergy, or virus, but the experts don't know.
I use to go to a very good clinic in LA for 5 years with the best doctors available. They believe menieres is brought on by allergies to foods and the environment, which causes an auto-immune reaction. So their primary treatment for menieres is allergy shot treatment along with hydrochlorothiazide 50 mg and papaverine. This actually seemed to work somewhat. Bur, here’s the cruel part, you can not get papaverine anymore because the manufacture stops making it. I have noticed that my hydrochlorothiazide treatment is not as effective anymore without the papaverine. Papaverine enabled the hydrochlorothiazide to get into my inner ear and keep the fluid out. Papaverine is a vasodilator and enabled excellent blood flow which was good because the inner ear has very poor blood flow. Now, instead of taking papaverine, they recommend taking niacin twice a day to increase blood flow. It doesn’t work.  
I was wondering if anyone collects disability for their menieres. I was on the Social Security Administration website and saw they now have included menieres disease as a NEW qualifier for disability payments.
2.07      Disturbance of labyrinthine-vestibular function (Including Ménière's disease), characterized by a history of frequent attacks of balance disturbance, tinnitus, and progressive loss of hearing.  With both A and B:
A.  Disturbed function of vestibular labyrinth demonstrated by caloric or other vestibular tests; and
B.  Hearing loss established by audiometry.
Has anyone attempted or is now receiving disability because of menieres or other related disturbance of  the labyrinthine-vestibular function?

[DwShasta]

Nothing has actually 'worked' for me. I have been living with true Meniere's for six years now. The past three to the point of not being able to function well enough to work or play/relax. I have permanently lost 25% of my hearing and balance. Diagnosis - "You will get worse until you die". There are some forms of ear trouble that can be attributed to many things such as allergies. These can generally be handled through medications and the disease halted. I think the hard part is not knowing why there is such a severe malfunction. I have achieved a relative balance through monitoring my activities and using diazepam and diuretics to ward off the more severe attacks that leave me retching for hours. But, there is not a moment of surcease from the spinning and roaring in my head.

I am curious, since I have a multitude of other symptoms if there isn't some autoimmune deficiency behind the whole problem. Though, I have been tested for every known viral/autoimmune disease they could think of. It is quite frustrating living in this limbo of what might happen next. This last year severe asthma joined the rank of symptoms. Has anyone else had this problem?

[ChadT]

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

[SusanTX]

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.

[ChuckJ44]

I was diagnosed with Maniere’s about 5 years ago.  I currently take Phenagrin and Antivert when I get light headed and it seems to stop the symptoms from increasing.  It work reasonably well but I’m getting concerned about taking Phenergan daily.  
I’m contemplating trying a Meniett device.  Their web site says that “the device delivers a computer-controlled, complex algorithm of low pressure pulses that are transmitted to the middle ear space and act on the round window membrane. It is believed that the energy of the pressure pulses causes a displacement of the perilymphatic fluid, which stimulates the flow of endolymphatic fluid and results in a reduction of endolymphatic fluid.”  It requires a tube (I would call it a grommet) be inserted (similar to the tubes put in kids ears for drainage).  I’m trying to see if anyone has experience with the device.  It is partially covered by Medicare and the distributor says that they will take it back if it doesn’t solve the problem.  You have to pay for it up front, them Medicare pays over time.  They tell me they have over an 80% success rate (meaning that 20% return the device).   If anyone has experience with the device, please comment in the forum.  If anyone has experience with the Meniett device, please provide your experience.

ChuckJ

[johng131]

I was diagnosed with Menieres five years ago and it is the most frustrating disease.  Thankfully I have not had a major rotational vertigo attack for about 4 monhs or so. I have yet to find a trigger but I am still searching, I have tried everything and still cannot correlate anything that I have done or not done that would bring on an attack.  At this point I have lost about 50% of the hearing in my left hear, constant tinnitus, I lose my balance as soon as I close my eyes.  The worst thing is not knowing when an attack will happen...in 5 minutes I could have a major rotational vertigo attack and pass out after vomiting for 8 hours(past experience).  Seems to be in remission at this point and I am keeping a log book to see if I can find that damn trigger. :)  

Good luck to all,
John G.

[johng131]

just wanted to add to my previous post.  I have constant tinnitus in my left ear and one thing I have noticed that when I touch certain areas on the left side of my face I can change the volume, pitch, and tone of the ringing.  The 3 specialist that I have seen said they have never heard of that before.

[DwShasta]

The only trigger I found for myself was stress/adrenaline.This will generally bring on an attack within hours. I can ward some of these off with diazepam. No other outside problems seem to bring on the dizzy spells. Certain things aggravate the problem and I can't tolerate some medicines, like vicodin or cough suppressants.

I also lose my balance when my eyes close or I am in the dark. I even lose it just walking across the room. The volume or pitch of my tinnitus changes with the stress I am experiencing. I don't get a volume change by touching my face, but can sometimes ease the onset of attacks and the feeling of pressure by massaging behind my ears and down the back of my neck and base of my skull.