MenieresInfo.com Blog

Via our free subscription to PubMed alerts, we were notified today that the following articles have been added to PubMed.  For tips on how to obtain the full text of these articles, see the MenieresInfo.com Research Page.

• Differentiation of Meniere’s disease and migraine-associated dizziness: a review.
• Electrocochleography in the evaluation of patients with Meniere’s disease/endolymphatic hydrops.
• An update on the surgical treatment of Meniere’s diseases.
• Evaluating treatments for Meniere’s disease: controversies surrounding placebo control.
• Meniere’s disease review 2005.
• Problems and solutions for fitting amplification to patients with Meniere’s disease.
• P-100 in the treatment of Meniere’s disease: a clinical study.
• Meniere’s disease: prevalence of contralateral ear involvement.

A reader asks:

Can people with Meniere’s Disease wear hearing aids?  I tried a hearing aid, and after three hours I had an episode of severe vertigo.  Did the hearing aid have anything to do with it?  I am afraid to try the hearing aid again.

Most people with Meniere’s Disease can wear hearing aids.  We have no idea whether your hearing aid triggered your episode of vertigo or whether the episode was mere random coincidence or due to some other trigger.  Every patient is different.  What is a trigger for one patient is no problem for another patient.  If it triggers your symptoms, it triggers your symptoms, no matter what “it” is.  We know of no way other than trial and error to determine whether your hearing aid triggered your vertigo.  We suggest that you discuss this with your medical professional to see whether your hearing aid is a problem for you and, if so, whether some adjustment to the amplification or the ear mold or something else can be made.

A reader asks:

I have found that taking birth control pills makes my symptoms worse.  Is there any further information on this?

We found no authoritative resources on this subject at PubMed, nor do we recall any anecdotal reports one way or the other.  But anything can be a trigger for Meniere’s Disease symptoms for any particular patient.  Our guess is that, like all things Meniere’s, some patients have no problem with birth control pills, and some patients do.  If it’s a trigger for you, then it’s a trigger for you, no matter what “it” is.  Read more about triggers at the MenieresInfo.com Triggers section on the Treatment Page.

A reader writes to say that he has stopped taking his medicine because it makes him drowsy and asks what else he should do.

The reader should talk to his doctor and discuss whether an adjustment in the frequency and dosage of his medicine is in order.

For every medicine, there are one or more side effects.  The idea is to balance the side effects with the sought direct effect of the medicine.  Medicines such as Valium and Antivert (meclizine hydrochloride) are intended to sedate the vestibular system to reduce the frequency, duration, and intensity of attacks of rotational vertgo.  Naturally, the side effect of any vestibular sedative will be drowsiness to a greater or lesser degree.  Also naturally, each patient has different tolerances for various side effects.  Each patient must decide whether one prefers vertigo attacks to drowsiness, when medicines that cause drowsiness are also medicines that improve rotational vertigo.

It may be that the doctor will recommend reducing one’s dosage so that one takes only as much medicine as will supress the vertigo while allowing the patient to perform reasonably well.  If one can sense an impending attack, perhaps the doctor will recommend that one only take the medicine when one so senses an impending attack.  Perhaps other medicines or other treatments are more appropriate.  These are issues to discuss with one’s doctor.  See the MenieresInfo.com Treatment Page.

A reader writes that his doctors aren’t helping him and asks for our suggestions for treatment.

We are patients, not doctors, so our suggestion is that this reader should keep on seeing doctors until he finds one who inspires his confidence.  There is no getting around this.

A reader asks:

My doctor recommends endolymphatic sac surgery of some sort on one of my ears.  How can he or I tell which ear is causing the problem?

You should discuss this with your doctor and ask how the doctor determined which ear to operate on.  One might expect that ear to be the one that has hearing loss, aural fullness, and tinnitus.

A reader asks:

My dad has vertigo for a few seconds whenever he moves his head or gets up out of bed or turns over in bed.  When he stays still, his vertigo stops. He’s 73, and hears well.  My uncle, who is a doctor who specializes in liver disease, diagnosed my father’s illness as Meniere’s Disease over the telephone, and told him to take several Chinese herbs every day. After four days, there is no improvement.  Now my dad stays in bed all day.  Can you give me any advice?

Yes.  We suggest that your father go see a doctor and get a proper medical diagnosis and treatment for his condition, whatever it may be.

A reader asks:

I recently was diagnosed with Meniere’s Disease, and I am on a low-sodium, no caffeine, and no alcohol diet.  I am miserable.  The low-sodium diet I can deal with, but no caffeine or alcohol?  I’ve read that the low-sodium diet is important, but received conflicting views on the necessity to abstain from caffeine and alcohol.  Is a glass of wine or a piece of chocolate no more than once a week going to bring back my symptoms?

It is common for doctors to advise patients to abstain from sodium, caffeine, and alcohol (and tobacco) (click here), as these substances are known to trigger the symptoms of Meniere’s Disease in many, but not all, patients.  Note “but not all patients.”  Only you can determine whether these substances will trigger your symptoms and, if so, to what degree.  Only you can determine whether you are more miserable with symptoms or more miserable without sodium, caffeine, and alcohol.  Most patients who suffer from bouts of severe vertigo will find the abstinence a small price to pay, but there are others, perhaps yourself, who prefer the vertigo.  We suggest that you discuss your concerns with your doctor.

A reader asks:

I was wondering — what is the best specialist to see for diagnosis of Meniere’s Disease?

A “neurotologist” (also called ”otoneurologist”) is the medical specialist closest to Meniere’s Disease.  Visit the MenieresInfo.com section on Medical Specialists for more information.  This specialist should be able to perform, or arrange for, a differential diagnosis of the symptoms of Meniere’s Disease.  See the MenieresInfo.com Diagnosis Page.  If the diagnosis is Meniere’s Disease, this is the closest specialist.  If the diagnosis is something else – for example, Lyme Disease, then the neurotologist should be able to refer one to the correct specialist for treatment.

A reader writes:

I suffer from three of the four classic symptoms of Meniere’s Disease, without the vertigo.  Needless to say, I am concerned about the progression of these symptoms.  I have been losing hearing since age 13, and now at age 30, I have lost much of the hearing in my left ear. In the recent 5-6 years, I have been experiencing pressure in the ear, eye twitches, ringing, and musical hallucinations.  I am not “yet” diagnosed with Meniere’s, but now that I am so much better informed, I can go to the doctor again and ask more informed questions.  Many thanks for your blog!

Eye twitching and musical hallucinations are not symptoms of Meniere’s Disease.  People with and without Meniere’s Disease can experience these conditions.  See the MenieresInfo.com Symptoms Page for information on the symptoms of Meniere’s Disease.  See this post for more information about musical hallucinations.

Meniere’s Disease is not diagnosed on its symptoms, because its symptoms are the same as the symptoms of many other disorders.  See the MenieresInfo.com Diagnosis Page.

See the MenieresInfo.com Prognosis Page for information on the progression of Meniere’s Disease.

We are glad that our information has helped you to become a better informed patient.  That is our goal.  Thanks for the kind words.

A reader asks: 

I was diagnosed with Meniere’s Disease 40 years ago.  I lost all of my hearing in my left ear at age 5, and developed severe vertigo attacks that lasted about a week, and which occurred twice a year for 11 years.  At age 16, all symptoms abruptly stopped.  Now, 29 years later, and at age 45, I have developed floaters in the eyes, blurred vision, and dizziness 24 hours a day for the past five months, but only occasional attacks of vertigo.  The doctors are telling me that Meniere’s Disease is the cause of my problems, but I doubt this.  Can Meniere’s Disease reappear after 29 years?  If so, wouldn’t I have the same severe vertigo as before?

We haven’t found anything authoritative on the subject at PubMed, but we have heard anecdotal reports of Meniere’s Disease going into remission for as long as 30 years.  When it recurs (relapses), whether it must produce the same symptoms as before is beyond our information.  Meniere’s Disease is extremely variable and affects each patient differently.  See the MenieresInfo.com Prognosis Page.

What you are really saying is that you lack confidence in your diagnosis.  We always recommend multiple medical opinions until you receive a diagnosis in which you have confidence.  See the MenieresInfo.com Diagnosis Page and the MenieresInfo.com Doctors Page.

A reader asks:

I don’t know what is “triggering” my attacks.  How can I find my ”triggers”? If the possibilities are nearly limitless, what questions can I ask myself to help me find what my triggers might be?

Some patients either have no triggers or no identifiable triggers.  There’s nothing magical about trying to find your triggers.  Some patients have allergies, known or unknown, that can trigger attacks, and allergies are best identified by a doctor who specializes in allergies.  Some people unknowingly have food allergies.  When one has an attack, one might ask oneself what was different about the day of the attack or the day or two preceding an attack.  Possibilities include food, condiments, cloth, clothing,  bedding, fragrances, air quality, and many other factors.  Finding one’s triggers, to the extent that finding one’s triggers is possible, requires thoughtful deduction and the process of elimination.  There is no “cookbook” on the subject.

For more information on triggers, visit the MenieresInfo.com section on Triggers.

April 7, 2006 — another reader comments:

I used to go often to an Indian restaurant close to where I work.  On a couple of occassions, I had a vertigo attack about halfway through my meal.  The last time it happened, it was a REALLY bad attack; my partner had to pick me up and I couldn’t walk or think for two days following.  Afterwards, my partner and I made the connection between eating Indian food and me getting vertigo attacks.  We realized, that five out of five times, over a period of about six months, I had an attack after eating at that restaurant.  Regretfully, I have taken Indian food off of my diet, being unable to narrow down what exactly in the food is triggering attacks.  This is by no means the only trigger I have, and I am far from figuring them all out.  But this is one less contributing factor in the daily struggle with the affects of Meniere’s Disease on my daily life.

A reader asks:

I have Meniere’s Disease attacks three times a week, which seems to be more frequent than most people experience.  What is the “average” or “normal” reported frequency of attacks?  What does the frequency of episodes suggest about the “stage” in the progression of the condition?  What does the frequency of episodes suggest about how close to “burnout” a person might be?

There is nothing “normal” or “average” about Meniere’s Disease.  Each person is different.  Some have more frequent attacks, and some have less frequent attacks.  Some people experience temporary remissions and some don’t.  Some people have frequent attacks for months and then less frequent attacks for months.

We are not fans of “staging” Meniere’s Disease, because the various attempts at developing “staging” criteria seem very arbitrary.  Meniere’s Disease is so variable that it seems to defy staging as a linear progression.

We are unaware of any correlation between frequency of attacks and any prediction of how close “burnout” might be.  Some patients experience burnout and some don’t.  Those who experience burnout may experience it either sooner or later.  The very existence of burnout is debatable.  However, the anecdotal reports that we have seen of patients who believe that they are experiencing burnout seem to be in the 8th year or later since the first observation of symptoms.

In short, there is nothing predictable about Meniere’s Disease.

For more information about the prognosis of Meniere’s Disease, see the MenieresInfo.com Prognosis Page.

After giving a run-down on history and symptoms, a patients asks:

What is your opinion on this particular case — does this sound like a serious problem or an issue that you can find a solution for?

We are patients, not doctors.  You need to be seeing doctors for diagnostic tests and diagnosis of your condition, not asking your question on the Internet.

For more information on the diagnosis of Meniere’s Disease, visit the MenieresInfo.com Diagnosis Page.  For information on finding a doctor, visit the MenieresInfo.com Doctors Page.

A reader asks:

Are there any specific foods that you can recommend to help cure this disease?

There is no cure for Meniere’s Disease.  There are no foods known to treat the symptoms of Meniere’s Disease.  A low salt diet may help to treat the symptoms of Meniere’s Disease in some, but not all, patients.  For more information on the treatment of Meniere’s Disease, visit the MenieresInfo.com Treatment Page..

A reader asks:

I have just been diagnosed with Meniere’s Disease.  It started with one attack every week for the first five weeks. The attacks last about fourteen hours. The last one was when I was driving and almost did not make it off the highway, so I have stopped driving. I have no warning of the attacks. I have changed to a low-salt diet and I have been taking medicines for the last month. I have not had a day without feeling dizzy for two months, but I have not had an attack for about four weeks. I need to go back to work, which is very stressful. I am very nervous about returning to work and about driving.  Also my employer’s short term disability insurance company says “we know you have Meniere’s Disease but this is like having the flu”; they say that I have an illness, not a disabillity.  Do you have any suggestions?  Do you find people to be understanding about this disease? Do I just start driving again?  How do I learn to lower my stress?

You seem to be sayng that your symptoms have been responsive to the low-salt diet and medicines.  If so, congratulations.  If not, visit the MenieresInfo.com Treatment Page.

About disability:  visit the MenieresInfo.com Disability Page.

About people understanding about Meniere’s Disease:  visit the MenieresInfo.com Start Page.

About driving:  you should drive only if you are not having attacks that occur without warning symptoms.  You should discuss this with your doctor.

About stress:  talk to your doctor about dealing with stress and anxiety, including medicines to help you.  We know of no Meniere’s Disease-specific methods of dealing with stress, so you might take advantage of the many resources available for dealing with stress in general.

A reader asks:

I have had dizzy spells for about 15 years, but I was diagnosed with Meniere’s Disease just one year ago. The episodes of vertigo pretty much ruin my life even though I am on all the usual medical treatments (valium, diuretic, antivert, low salt, no caffeine). I still seem to be getting worse. I have had two rounds of ear perfusion done, the latest of which took most of my hearing.  The loss of hearing is not so bad as the episodes of vertigo, which take my time away from by family, and this is just not acceptable to me.  Would you recommend surgery or should I just wait it out?

We are patients, not doctors, so we don’t give medical advice.  Your question is a good one — for you to think about yourself and for you to discuss with your family and your doctors.  You seem to appreciate the risks involved with any surgery.  No doubt you didn’t expect the hearing loss that you experienced from the intratympanic instillation and perfusion (of what, we surmise, was gentamicin) because you were told that “most” patients don’t lose “much” hearing. 

Only you can decide whether the possible alleviation of your symptoms is worth the risk of surgery.  However, there is a fairly non-invasive option that you have not mentioned:  the Meniett Device.  Like all Meniere’s Disease treatments, this device seems to work well for some patients and not at all for some other patients, with the rest of the patients falling somewhere in between. 

There is a destructive treatment with fairly low risk:  intratympanic instillation and perfusion of streptomycin or high-dose gentamicin.  This procedure is also called “chemical labyrinthectomy,” and is intended to fully destroy the balance function of the inner ear (with the consequential destruction of the hearing function as well), with a lower risk than a surgical labyrinthectomy.  Labyrinthectomy of any kind is usually reserved for patients with no functional hearing remaining.

Please let us know what you decide and how it works out.

Find out more about the Meniett Device and other treatments for Meniere’s Disease at the MenieresInfo.com Treatment Page.

__________

We received this message on May 11, 2006:

Just a quick update on my question of whether I should have surgery or wait. I have seen another specialist and I am having ear decompression surgery with mastoidectomy next week. This seems to be a better option than the other surgeries I could have and is the least invasive. I just wanted to say thanks for posting my question, it really helped me have the courage to seek another doctor’s opinion.

One can never get too many medical opinions.  Keep in mind that endolymphatic sac decompression surgery is controversial — even called “sham” surgery by some.  See this link at MenieresInfo.com.