Update on me and Meniere's (2019)

Minor updates November 2019

What is my situation now?

I have 95% balance function loss and 88% hearing function (and tinnitus) loss in my Meniere's ear.  I am unilateral.  My right ear is normal.  This loss of balance function is due to the progression of the disease in that ear and the fact I had one gentamicin injection.

Due to have so little balance function in that ear, in general, vertigo and dizziness are not a part of my daily life anymore (this is assuming I get enough sleep!)

My "bad ear" has had the balance function reduced to the point that even if I do have an attack it is very mild.  Yes, I do still occasionally still have attacks and I can still feel them a little bit, and they can still sometimes make me sick.  But no rotational vertigo anymore.

I rarely have to leave work, and when I do a long nap at home usually helps enough to keep me going.  I miss maybe 2-4 days a year for Meniere's reasons, and usually I only miss a part of a day.  And it is usually because I feel "off" due to being overtired.

Thanks to aggressive vestibular rehabilitation therapy both with a physical therapist and on my own I compensate very well for the loss of balance function in my affected ear.

I can do almost anything I wish (except maybe run an obstacle course in a very dark room! LOL).  This took time and effort.  My brain had to retrain itself.  But i DON'T have to avoid shopping or crowds or concerts, or really anything, etc..

I recently rode all the rides at Disneyland for example. A few like Space Mountain I could only ride once due to feeling off for a bit after riding it, but in general I did great. I did take one meclizine during the day.

I am considering having another gent injection or even a labyrnthectomy to take things down even further.  To get away from those few times things do bother me, but it is not an urgent matter.

I have daily tinnitus and 90% loss of usable hearing in my affected ear. I do NOT think the gent did much damage to my hearing, it was the disease itself.

Sure, if i were to go bilateral and get things cooking in my good ear that would really really suck, but so far so good for me on that front.

So... how did i get to this place of stability?  Here is my history!
I've had Meneire's Disease for 18 years. In that time it has been unilateral (only affecting my left ear). The first 4-5 years I had 4-6 hour long VIOLENT rotational vertigo attacks every 3-4 months with almost no symptoms in between.

Then in 2004ish I started having them more often, about every 6 weeks, and my balance really began to go wiggy. Up to that point I had tried diuretics, lifestyle changes, allergy shots, and the Meniett in an effort to reduce symptoms.  Some of them seemed to work some of the time...  but I was still having attacks.

I had an ENG in 2005 and it showed 96% measurable loss (kind of what is known as "burnout" ) Now an ENG only measures a portion of your balance function, there is no test for all of your balance function...  I was told by Dr's that the disorder had really gone after my balance organ more aggressively than in some patients.

After I hit that I place of balance loss, I stopped having the big knock down attacks. Sure I'd have attacks, but it was more like really bad carsickness instead of the rotational vertigo. I couldn't go to work, but the vomiting stopped. I felt like that should kind of be considered "burnout."  Where the disease itself has destroyed your balance function to the point the disease becomes more manageable.  Then in the last 6-7 months of 2008 things changed again.

In 2008 and 2009, I almost never had long bursts of rotational vertigo or MM symptoms. Instead I had "quick hits" of various types.

All of these seem to be most common when I have eye strain - like when I'm using a computer to much (which is all I do in my job, so good times for me!)

The types are:
Nystagmus burst: this terrific little # is a quick hit of nystagmus (uncontrolled eye jerks) for anywhere from 10-40 seconds. During these I can't see clearly or walk, but am not having rotational vertigo. Afterward my eyes are sore and I am nauseous.

Rotational Vertigo Burst: Rotational vertigo AND nystagmus for 30 sec to 3 minutes. That causes me extreme nausea and I usually have to go close my eyes someplace for 30 minutes. This has actually happened when I was driving a few times and that is scary.

A Rotational Vertigo "Jerk": Rotational vertigo that seems somehow involved with the saccule that causes me to almost fall or stumble. There are rotational vertigo symptoms but they only last a few seconds, but I have like half a drop attack, I am jerked toward the ground.

A True Drop Attack (turmarkin otolithic crisis): This has happened once. I was walking along... and then I wasn't. I fell backwards hard. There was no rotational vertigo. I just fell. Hit my head too.

At this point this super fun stew of symptoms has finally pushed me to the edge where I am willing to address it through destructive means. At first I tried all the other standard treatments I am aware of : diuretics, allergy shots, lifestyle changes, trigger avoidance, Meniett Device. I have not tried sac shunt or decompression

My right ear continues to be fully functional. At first I panicked and wanted to do a VNS RIGHT NOW... but my Dr talked me down and

I decided to do a course of low dose GENT injections over the a few months. I had an injection on 2/5/09.  It HELPED.

All of the symptoms I mention above were greatly reduced.  I still have attacks and I can still feel them and they can still make me sick, but I rarely have to leave work and when I do a long nap usually helps enough to keep me going.

Remember, for ME I waited long enough to have the injection that the disease itself had destroyed much of my balance function already.  I wish I had not waited so long to get the injections.

Much more about gent injections here:
http://menieresandme.blogspot.com/2014/11/about-gentamicin-injections-and-why.html

An introduction to Meniere's and the steps of treatment:
http://menieresandme.blogspot.com/2014/11/updated-introduction-to-menieres.html

Understanding baseline medications prescribed for Meniere's

There has been a lot of questions on various support groups I am a part of lately on baseline medication for Meniere’s. There are MANY other treatments to consider beyond what is listed below.

Depending on the Dr’s folks are seeing they are being prescribed any of the below. In order to help with understanding I’ve listed the drug and what my understanding is of why it is prescribed for the Meniere’s patient.

Please note each medicine is listed by its chemical name with possible USA brand names in parentheses next to it. Different drugs have different brand names in different countries

Many of these drugs are targeted at reducing the incidence of endolymphatic hydrops (excess fluid in the organs of the inner ear) which is the part of Meniere’s that results in symptoms

Go to www.drugs.com as a good place to look over any of these medicines.

MUCH more background on treatments and diagnosis of Meniere's is at this link:
http://menieresandme.blogspot.com/2014/11/updated-introduction-to-menieres.html

Diuretic - typically hydrochlorothiazide and triamterene (Dyazide), to reduce fluid retention system wide thus hopefully reducing the incidence of hydrops, see also Centyl or other diuretics. Diuretics are also commonly prescribed for fluid retention and/or blood pressure issues as well, so you will need to coordinate closely with your doctor on how they will affect you.

Betahistine (SERC) - Betahistine works by improving blood flow in the inner ear, which may help reduce the build up of endolymphatic fluid pressure. It is this pressure in the ear that typically causes vertigo (dizziness), tinnitus (ringing in the ears), and hearing loss suffered by people with Ménière's disease. Betahistine is available through prescription and a compounding pharamacy in the US - it can be difficult to get in the US, but it IS possible. It is available as a product called SERC in the UK, Canada and Europe.  It can often take a large dose given multiple times a day. LINK FOR MORE

Meclizine or Cinnarizine, Dimenhydrinate
(arelvert, antivert, bonine, dramamine) - these antihistamines are used to treat or prevent nausea, vomiting, and dizziness caused by motion sickness. It is also used to treat symptoms of vertigo (dizziness or spinning sensation) caused by disease that affects your inner ear. These medicines work by blocking histamine and muscarinic receptors in the vomiting center in the brain. In the USA meclizine is available as a chewable pill over the counter. Taken just before or during vertigo attacks or to help with daily dizziness. 

Benzodiazepene’s such as diazepam (Valium), alprazolam (Xanax), or lorazepam (Ativan). These drugs work by slowing down the movement of chemicals in the brain that may become unbalanced. This results in a reduction in nervous tension (anxiety). They also suppress the vestibular nerve response and calm dizziness and vertigo. These drugs are highly addictive and a prescription is required in all territories they are offered. Typically prescribed on an “as needed” basis at relatively low doses. To be taken during a vertigo attack. Some Dr’s don’t like prescribing these drugs at first, but I’ve found they really really help if you have violent vertigo attacks and are worth asking for.  Some people find one “benzo” works better for them than others.  One person may not like the way one makes them feel but another works well.  There are 5 or so types of these drugs to try… Primarily for anxiety or simliar issues, these drugs also happen to suppress vertigo, so they are used for that purpose in the Meniere's patient

Promethazine (Phenergan) or ondansetron (Zofran), these drugs are usually taken to prevent severe nausea and vomiting. Sometimes it is administered as a suppository.  They can also come in a form that dissolves under your tongue.

Steroids (prednisone, etc..), either oral or injected into the ear - these are tried when the causation of the patient's Meniere's is suspected to be related to autoimmune issues - much more at THIS LINK

Calcium Channel Blockers, such as verapamil. It is not well  understood why these may help, but they may be tried, especially when Migraine Associated Vertigo (MAV) is suspected as being involved as well as traditional Meniere's.  Their work on blood vessels may reduce hydrops, etc.. go HERE to learn more.

Other drugs are sometimes tried, including antiviral medications.  These are somewhat controversial as to whether they are better than placebo.  

My personal experiences: When I would have STRONG rotational vertigo attacks I would take, 25 to 50 mg of meclizine, 2mg of diazepam OR .25 mg of alprazolam, and IF needed some promethazine. This cocktail would quiet the spinning considerably and allow me to sleep and not vomit. However, that is a STRONG combination of medications and I would be basically drugged out of my gourd (safely) for several hours.

When I had mild attacks or felt symptoms at a lower level, usually 25 mg of meclizine was sufficient to help me out. On rare occasions I’d take alprazolam instead or as well. This would often allow me to stay at work during milder times of symptoms (if a bit sleepy…).

For long term damage to the vestibular system that is present permanently between attacks, it is best to try NOT to use medicine, but to engage in vestibular rehabilitation therapy with a trained physical therapist in order to train your brain to deal with the loss of vestibular function. This can be a difficult process, but it has many rewards if you stick it out!

Image showing the traditional treatment steps for unilateral Meniere's:

My blog on Meneiere’s is at http://menieresandme.blogspot.com/

Am I destined to apply for disability or be required to stop working if I am Unilateral?

QUESTION: If I have Meniere's in only ONE ear, am I destined to apply for disability or be required to stop working?
(the assumption here is that Meniere's is the only reason you are considering disability)

The ANSWER:  NO, not necessarily.  You have choices to consider.

I want to make clear, I am NOT judging other folks decisions to apply for disability if they are unilateral.  I'm just trying to explain one set of options available to consider.

When it comes to working, if you have Meniere's in only one ear, there ARE very aggressive options available to "turn that ear down" or even off.  After those treatments you can retrain your body to only listen to your good ear and really reduce how much work you miss due to vertigo attacks.  These can be considered when less invasive and more traditional treatments (like lifestyle changes) aren't working.

HOWEVER, if you have Meniere's in both ears (you are bilateral) the equation changes and it is harder to avoid disability (but not necessarily impossible, it depends on many factors).

Choosing to do destructive treatments to your "bad" ear when you are unilateral (having Meniere's in only ear) is a big decision.  There are some risks, especially to remaining hearing to consider.  The equation is all about your quality of life vs the risks involved.

I work full time and only miss maybe 2 or 3 days a year due to Meniere's symptoms.  However, I ALSO only have like 4% usable balance function in my Meniere's ear.  In other words I still have attacks, I just can't feel them anymore and they don't interrupt my life like they used to.

Here is a DIRECT LINK to how I got to this state and a description of the decisions I made.  I  have had Meniere's for 14 years and used to have very violent vertigo.

The first one of the "destructive treatments" most folks consider after other more traditional treatments have failed (things like lifestyle changes, diuretics, steroids, allergy shots, etc..) is  gentamicin injections.  I have had one of these injections and wish I had done them much earlier.

These injections gradually (over a series of injections) "turn down" your bad ear so it does not function as well and thus your attacks are not as severe.  This is usually paired with vestibular rehabilitation therapy so you can push your brain to learn to listen to only your "good ear".  The therapy is difficult but it REALLY helps.

You may need to take a leave of absence during this time as you doing the therapy.  Although I never did.  However, I've also always had sedentary computer based jobs and very understanding bosses and a very supportive spouse.  Not everyone is so lucky.  I understand that, I really do!

AGAIN, I am NOT judging other folks decisions to apply for disability if they are unilateral.  You must do what is right for YOU.

Here is much more on gent injections plus other options.  See also the "ladder of treatment" picture included on this blog post:
http://menieresandme.blogspot.com/2014/11/about-gentamicin-injections-and-why.html

Some Thoughts on Steroids and their use in Meniere's Treatment

Links sprinkled throughout!

Sometimes, Meniere's disease is aggravated or even caused by inflammation and/or autoimmune disorders. For example an autoimmune issue (similar to autoimmune inner ear disorder, AIED) can lead to Meniere's symptoms or help to act as a cause for hydrops (the main thing that often causes Menieres symptoms Hydrops refers to excess fluid in the inner ear). In those patients where autoimmune issues are suspected as a trigger or even a primary cause of ear symptoms, steroids are often prescribed either orally or through direct application as an inner ear injection. Allergic reactions to airborne pollens, or to foods can also cause an inflammatory response.  Autoimmune issues are not always the cause of Meniere's disease - there are several paths suspected that can lead someone to get the symptoms collectively known as Meniere's.

Thus two front line treatments for Meniere's that many NeuroToligists try is allergy mitigation and steroid treatments. Unfortunately, for many people this does very little to help as inflammation is not a primary cause of their particular hydrops issue that causes Meniere's symptoms.

Steroids are always worth a shot (pun intended) though. Especially if you are having a time where you are having a LOT of attacks, it can be helpful for the Dr to see if the steroids help you. If you are very responsive to the steroid, it can suggest that perhaps a diagnosis of AIED is more appropriate (especially if your primary issues are with hearing and NOT vertigo), or that exploring autoimmune testing and issues with this patient is warranted to reduce frequency and severity of attacks (they are unlikely to cause them to cease all together.)

It doesn't help everyone though. Meniere's may have several different causes that all result in the same symptoms, in other words - that cause hydrops. A poor functioning endolymphatic sac, which is a primary culprit in hydrops caused vertigo can be caused by getting a herpes virus as a child (for example chicken pox), a genetic causation that causes a small deformity in the sac, etc...

All this is still a bit up in the air, that is why there are a # of different treatment paths to try and go down to see what helps you. Relevant links in the next comment. Whew! Thanks for letting me right all that! For what's worth, I am NOT a Dr (nor do I play one on tv) but I do a lot of research on the disease and have had it for 14 years. And have had looooong talks with some of the top Neurotoligists in the country (only occasionally against their will, LOL) Attached here is a common ladder of treatment I see (I created the image)

Here is one leading NeuroTologist's opinion on these treatments:
Link to Dr. Tim Hain's breakdown of why steroid shots are tried here:
 http://www.dizziness-and-balance.com/treatment/it-steroids.htm
---------------

Picture is of the "ladder of treatment" often used for Meniere's. MUCH BASIC INFO HERE

About Choosing a Doctor for Meniere's

When considering whether a Dr is right for you, here is what I've found in relation to Meniere's.

FIRST - don't see a regular ENT, or a general practitioner, or a neurologist as your primary Dr for Meniere's. See a NeuroToloigst. Note that T in there. A neurotologist is an Ear Nose and Throat (ENT) doctor who has had additional training to focus on balance disorders, especially those that impact the brain. A regular ENT may see 1 or 2 Meniere's cases a year and may not spend a lot of time keeping up on the latest info on the disorder. A NeuroTologist will see 70 Meniere's patients and be very up to date. Not every Neurotologist is a gem... but I've been lucky to see several terrific ones and I know good ones are out there. It may be hard to find one in some parts of the US, etc... but even if you can only see one once or twice or have a phone consult, it is worth it.

There are search tools to help look for Doctor's at http://vestibular.org/

For me, once they were SURE in my diagnosis of Meniere's Disease or in my case likely endolymphatic hydrops caused MD (which is diagnosed mostly a process of ruling out other things ) and because i am Unilateral (having the disease in only one ear).

Each of my Dr's presented treatment options to me as MY choice. They were all Meniere's experts and Neurotologists in Portland OR or Los Angeles, CA. They said:

1. Meniere's Disease is idiopathic, in other words we don't know what causes it for sure. There many very well informed theories and a lot of work being done in this space. IE, Herpes involvement, etc... But the mechanism of how it all comes together is still in question, and the community of Meniere's experts has still not coalesced around one explanation.

2. MD has no cure and is usually progressive - in some patients it progresses very slowly, in others (as in my case) the vertigo is quite extensive and destroys the organ faster... it all depends. There are many treatments available that may arrest the progress of the disease for an extended period, but usually the disease progresses eventually. (There are always exceptions). There are ways to arrest that progression or slow the occurrence of symptoms through lifestyle changes or other treatments.

3. This is really the most important: It is all about YOUR quality of life. If you want to avoid procedures that may present a risk to your hearing, or required surgery, and only try medications (antivirals, diuretics, etc...) or allergy shots or similar as your only treatment that is fine. If the vertigo is happening often enough and powerfully enough that you wish to start to destroy your ear on purpose - via gent injections or sac surgeries - even though there is risk to your hearing, then we are here for you and we will do them.

They left it up to ME to tell them when I was ready to climb the next step in things to try. Sure they gave me advice and had an opinion, but they knew my quality of life is what really mattered. Mostly they were there to EDUCATE me about my choices and what they represented.

That flexibility and willingness to listen is a hallmark of Neurotologists I've liked. The KNOW they can't cure it and they know it is often progressive, so they listen and help you grope for an answer for you and don't say absolute NO or YES necessarily, cause that doesn't always fit the nature of a chronic disorder.

Even if you are bilateral, you may have different steps or may avoid some things, but the basics of how the Dr treats you and educates you would be the same.

My Neurotologists whom I've liked very much are:


Neurotologists at Oregon Health Sciences University, Portland, OR
https://www.ohsu.edu/ent/our-team-0

Dr. Jennifer Derebery (I can't recommend her enough!), House Ear Clinic, Los Angeles, CA
http://www.houseearclinic.com/derebery

MORE BACKGROUND INFO ON THE DISEASE IS HERE

Image attached is the ladder of treatment I am familiar with that most Dr's would follow.

About Gentamicin Injections and Why people (including me) Get Them

I’ve seen a lot of questions about gentamicin injections lately, so here is little summary of my take on them.   

Here is my post on my PERSONAL experience with them and how I'm doing today in 2015:
http://menieresandme.blogspot.com/2015/04/update-on-me-and-menieres-in-early-2015.html

I also highly recommend Dr Timothy Hain’s page on gent injections at:

http://www.dizziness-and-balance.com/treatment/ttg.html

These comments are primarily directed at the UNILATERAL patient (having Menire's in only one ear).  Bilateral patients may need gent injections at some point, but it will be a different calculus on how/when.

Attached is picture of my "ladder of treatment" for unilateral MD - you can see gent is a few steps UP the ladder.

Gentamicin injections are intended to literally and purposefully DESTROY the function of your balance organ in your inner ear.  Imagine a “balance function” dial.  Well, the injections are intended to turn that dial down so that ear doesn’t send balance function signals to your brain as much or as strongly anymore.  Why would we do this?  Well, in unilateral Meniere’s Disease patients (in only one ear), the vertigo attacks are caused by the balance organ in your affected ear sending “bad” balance signals to your brain.  Your brain becomes confused at the fact that your good ear says you are sitting in a chair and your “bad” ear is saying you are moving in circles or upside down, or sideways.  The brain can’t decide what is going on so it loses control of your eyes and you have what is called Nystagmus - your eyes jerk back and forth uncontrollably.  This results in the sensation of rotational vertigo that is so debilitating to the patient.

The injections are intended to make those bad signals from that ear quieter or make them stop all together.  Our brains CAN AND WILL learn to listen to only our good ears.  It may result in less intense and more manageable attacks or if you have enough of them almost no attacks at all (but also no balance function left in that ear).

Thanks to the disorder along with a gent injection my "bad ear" only has about 4% balance function left.  My other ear is normal (I am lucky so far!).  At this point my brain has learned to ONLY listen to my good for balance, partially thanks to physical therapy (see below).  When I do have attacks my balance organ in my bad ear barely registers them and they affect me very very lightly.  If my good ear started to become affected, I'd have to deal with that, but for now I am very stable and am actually thankful that bad ear's balance function has been "turned off".

However, when we aren’t having attacks are “bad” ear can still send good signals to our brain.  So in between attacks the brain is happy with both ears.  When you have a gent injection it turns down the balance function all the time - so even if you aren’t having vertigo, after the injection you will have less function and your brain will be confused as it adjusts to this new reality of balance signals from your bad ear. (PS the disease itself can also reduce balance function through attacks).  After your balance function has been reduced you will feel unsteady and need time to have your brain adjust. 

It is imperative after gent injections you do vestibular rehabilitation physical therapy exercises at home or with a professional to help push your brain to compensate and listen more to your good ear.  Your balance has been reduced permanently on one side, the brain NEEDS help.  These exercises will be uncomfortable, it will push you, you may sweat or feel dizzy while doing them.  That is SUPPOSED TO HAPPEN.  The more you push and practice and help your brain retrain your eyes and ear the better you’ll feel a few weeks or months down the road.  If you lie in bed or avoid things or avoid leaving the house, or doing the exercises your brain will take much longer to compensate, or never will and you will not reach the point of better compensation.

Usually gent injections are provided in a low dose series with time in between to better help you manage and compensate from the balance reduction each time.

How many shots does it take?  One gent injection will likely not "do the trick" alone if you have a high amount of balance function left in your Meniere's ear. It is important to remember the goal of gent injections (which is VERY different than steroid injections) - we are literally destroying your balance organ function in the ear getting the injections so it will stop sending problem balance signals to your brain. Sometimes the function must be taken almost to zero in order to make the bad signals stop. This treatment is usually primarily advocated in patients are NOT bilateral and have one ear that is normal and has remained normal for some time.

The brain can and WILL learn to listen to only the good ear if balance is "turned off" in the bad ear. One low dose injection may take you from say, 85% function to 70% function (confirmed via VNG/ENG). 70% function for some people is still enough for you to feel a Meniere's attack and have that ear cause vertigo. For reasons not understood fully one injection may be enough for some folks. But for others additional injections may be necessary to bring the ear down to say, 25% or even 10% or less before the ear "shuts up" and leaves your brain alone and the vertigo attacks stop. This is my situation as my "bad ear " has only 5% or so balance function left and so my vertigo attacks have stopped. My brain can't "hear" them when my ear is being symptomatic. I still have Meniere's attacks (I have fullness, tinnitus and very slight dizziness) but the full on bad balance signals don't get through.

If I were go to bilateral... well, I'd have to deal with that and I likely couldn't get gent injections in my other ear. I'm 14 years in and I'm not bilateral so far, and hope to stay that way, but that doesn't always work out. So gent is a risk (in as much as you may become bilateral) but it can be a risk worth taking.

If the injections don’t work to fully reduce symptoms to a manageable point, the Dr may suggest just removing the organ all together (labyrnthectomy) or severing the nerve that carries balance messages from that ear to the brain (vestibular nerve section).

Traditional "ladder of treament" for unilateral Meniere's Disease (image):

Updated - Introduction to Meniere's Disease and Treatments

Minor updates September 2019

Hi there! This is kind of a standard message I post for newly diagnosed folks I meet on Facebook Groups or at menieres.org .  I thought I'd repeat it on my blog as a helpful post about Meniere's and finding out more about it. I’ve added links throughout that I think may be of interest. I’ve also added a few links of my own to documents and other sites throughout and at the bottom.

I have created a document that covers the traditional “ladder” of treatment that I've encountered for traditional unilateral Meniere's patients. I've added it at the bottom as an image.

If you are newly diagnosed with Meniere’s Disease, or have questions about whether my symptoms match the disease, there are three questions I imagine are foremost in your mind. 1. What the hell is Meniere’s Disease 2. Are they sure I have Meniere’s Disease? 3. Ok, so what are my treatment options? Let’s take these questions one at a time.

In response to question 1, Meniere’s Disease (also called MM or Morbus Menieres) is a general term describing a condition of the inner ear that causes episodic rotational vertigo, fluctuating tinnitus (ear noise), hearing loss, and ear fullness and pain. If you have traditional MM you will show all four of these symptoms at some point in the first few years you have the disease. Not all four will hit at once and some may be more common than others, but you will have all four.

If you'd prefer to read a GREAT breakdown of Meniere's written from a Dr's point of view by a world leading Meniere's specialist, with a list of references, you can do no better than Dr. T. Hain's website.  He updates it frequently. His info is more technical, but it is very thorough. Go here:
http://www.dizziness-and-balance.com/disorders/menieres/menieres.html
Dr. Hain's website is a bit old school but it is updated often and very informative.

If you have non traditional Meniere’s Disease it means you may have one or two of the four or a slight variation on the four but that your ear acts unique from the majority of Meniere’s patients. Why is it still called Meniere’s Disease? Because the other founding principal of a Meniere’s diagnosis it that your condition is idiopathic. In other words the doctor’s can’t explain the cause. Meniere’s is by definition considered to be an idiopathic disease. There are many very well informed theories on causation that may have elements of truth, but right now there is NOT an agreed on view of what exactly happens to causes Meniere's.

Because it is idiopathic there is no currently accepted way to “cure” the disease. There currently is no cure for Menieres. There are many ways that doctors try to manage the symptoms of the disease however. As to question 2, Meniere’s Disease has many mimics – or diseases that at first appear Meniere’s like, but that are actually caused by something else. Examples would be true BPPV, MS, or a tumor of the ear or brain, or autoimmune inner ear disorder. This is why many tests are required to rule out all the mimics before a Meniere’s diagnosis is given. We have to be sure that the cause really is idiopathic.

Here is a MAJOR POINT. It is imperative that you see the right kind of doctor for your disease. Meniere’s Disease should NOT be treated by just a regular ENT if it all possible. There is a type of specialist who is an expert in Meniere’s and dizziness disorders. They are ENT’s who’ve done extra training in that area and are called neuroTologists or oto-neurologists. There are lists of them in various parts of the world at http://www.vestibular.org .  Note the T in there, they are NeuroToligists. They will be board certified in NeuroTology.
More info on help choosing a Dr for Meniere's is HERE.

Finally we get to question 3, what can I do about it? Note, most of my post is directed at “traditional” MM patients, but non traditional patients can benefit from this information as well. Because Meniere’s is idiopathic, there are many theories and treatments out there. It is actually difficult to find standard agreement among doctors as to what steps should be taken with the traditional MM patient.

My own doctors have primarily been affiliated with the House Ear Clinic (see: http://www.houseearclinic.com) and House Ear Institute in Los Angeles. My doctor there was. Dr. M Jennifer Derebery House, who is one of the leading research centers on Meniere’s Disease and AIED in the country.

I have created a document that covers the traditional “ladder” of treatment that I've encountered for traditional Meniere's patients. It is attached below as an image. I can email it to you in other formats. I recommend printing this resource and looking over the treatments at menieresinfo.com and asking on the board at menieres.org or on a meniere's group on fbook about others' impressions of the treatments listed. Your treatments may be slightly different if you are non traditional or bilateral, but many of the same treatments will still apply.

Here is info on baseline medications prescribed for Meniere's patients:
http://menieresandme.blogspot.com/2015/03/understanding-baseline-medications.html

I realize I’ve already gone on too long…so I’ll cut it short. But basically, if you look over those links you will have a great deal of information to start with. I also recommend Patty Haybach’s book “Meniere’s Disease, what you need to know” available at http://www.vestibular.org/ .

There are many other topics you should ponder... Topics include traditional treatments/medications like  allergies, (SERC also known as betahistine) medication, steroids, gentamicin injections, shunt/endo sac surgery, and VNS surgery, or "non-traditional" things like nutritional supplements (including the "John of Ohio" regimen), antivirals (still up for debate), or alternative therapies.

REMEMBER! If you have any lasting balance function damage from the disease or a treatment then you should also get vestibular rehabilitation therapy from a licensed physical therapist to help your brain compensate.

http://menieresandme.blogspot.com – My Meniere’s blog
Here is a link to a post on how I personally am doing today: http://menieresandme.blogspot.com/2015/04/update-on-me-and-menieres-in-early-2015.html

I currently see Drs in Portland, OR at Oregon Health Sciences University

A New Low and a New Decision - Gent Injections

 - Updates made in 2/2015.

First, a word about how I am today in early 2015. In general, vertigo and dizziness are not a part of my daily life anymore (this is assuming I get enough sleep!)

My "bad ear" has had the balance function reduced to the point that even if I do have an attack it is very mild.  Yes, I do still occasionally still have attacks and I can still feel them a little bit, and they can still sometimes make me sick.  But no rotational vertigo anymore.

I rarely have to leave work, and when I do a long nap at home usually helps enough to keep me going.  I miss maybe 2-4 days a year for Meniere's.

I am considering having another gent injection in 2015 to take things down even further (I wish I had not taken so long to get them).  In some ways I can be considered to be in what is called the "burnout" phase of my affected ear.  However, I did decided to have a gent injection to help things along, I wish I had done them much earlier.  MORE on gent injections here:
http://menieresandme.blogspot.com/2014/11/about-gentamicin-injections-and-why.html

I have daily tinnitus and 90% loss of usable hearing in my affected ear.

The rest of the story of how I got here:
Sooooo, I've had Meneire's Disease for 14 years. In that time it has been unilateral (only affecting my left ear). The first 4-5 years I had 4-6 hour long VIOLENT rotational vertigo attacks every 3-4 months with almost no symptoms in between.

Then I started having them more often, about every 6 weeks, and my balance really began to go wiggy. I had an ENG in 2005 and it showed 96% measurable loss (kind of what is known as "burnout"  Now an ENG only measures a portion of your balance function, there is no test for all of your balance function...

After i hit that I place, I stopped having the big knock down attacks. Sure I'd have attacks, but it was more like really bad carsickness instead of the rotational vertigo. I couldn't go to work, but the vomiting stopped. I felt like that should kind of be considered "burnout."  Where the disease itself has destroyed your balance function to the point the disease becomes more manageable.  Then in the last 6-7 months of 2008 things changed again.

In 2008 and 2009, I almost never had long bursts of rotational vertigo or MM symptoms. Instead I had "quick hits" of various types.
All of these seem to be most common when I have eye strain - like when I'm using a computer to much (which is all I do in my job, so good times for me!)

The types are:
Nystagmus burst: this terrific little # is a quick hit of nystagmus (uncontrolled eye jerks) for anywhere from 10-40 seconds. During these I can't see clearly or walk, but am not having rotational vertigo. Afterward my eyes are sore and I am nauseous.

Rotational Vertigo Burst: Rotational vertigo AND nystagmus for 30 sec to 3 minutes. That causes me extreme nausea and I usually have to go close my eyes someplace for 30 minutes. This has actually happened when I was driving a few times and that is scary.

A Rotational Vertigo "Jerk": Rotational vertigo that seems somehow involved with the saccule that causes me to almost fall or stumble. There are rotational vertigo symptoms but they only last a few seconds, but I have like half a drop attack, I am jerked toward the ground.

A True Drop Attack: This has happened once. I was walking along... and then I wasn't. I fell backwards hard. There was no rotational vertigo. I just fell. Hit my head too.

At this point this super fun stew of symptoms has finally pushed me to the edge where I am willing to address it through destructive means. At first I tried all the other standard treatments I am aware of : diuretics, allergy shots, lifestyle changes, trigger avoidance, Meniett Device. I have not tried sac shunt or decompression, nor have i tried antivirals. I wish I had tried antivirals, but that time is in the past now.

My right ear continues to be fully functional. At first I panicked and wanted to do a VNS RIGHT NOW... but my Dr talked me down and I decided to do a course of low dose gent injections over the a few months. I had an injection on 2/5/09.  It HELPED.

All of the symptoms I mention above were greatly reduced.  I still have attacks and I can still feel them and they can still make me sick, but I rarely have to leave work and when I do a long nap usually helps enough to keep me going.  I am considering having another gent injection in 2015 to take things down even further.

Remember, for ME I waited long enough to have the injection that the disease itself had destroyed much of my balance function already.  I wish I had not waited so long to get the injections.

More Pics

Pics from my visit to House Ear clinic in 2005

These cases hold inner ears donated for science
On the wall in a hallway
Dr Derebery and Me
Front of House

SERC - Betahistine Hydrochloride as a treatment for Meniere's

UPDATED 2/26/2016

What is it?
Serc is a brand name drug in Europe and other countries.  It's primary active component is betahistine hydrochloride. It is a frequent first line treatment for Meniere's Disease.  Many experts believe it may act as a vasodilator and helps your inner ear reduce the hydrops that they believe cause many of our symptoms.

What about allergies, isn't it a histamine?
Serc is histamine but it is a type of it that does not increase allergies in most people. In fact, Derebery (an allergist AND NeuroTologist) says that it can theoretically cause your body to produce less histamine related to allergies, and even help your allergy symptoms slightly. Because of the way it acts according to these doc's, they say antihistamines and other anti allergy med's are allowed as SERC acts on a different receptor.

How to get it.

It is not available in the US under it's brand name – which is why it is not often prescribed here in pill form - but it is legal for a compounding pharamcist to make it for you from scratch in generic form.

I got my SERC from a compounding pharmacy in Pasadena, CA and I DID have it covered by my insurance I had a $10 copay each month.  It took some letters and pushing to get insurance to help me with it.

They didn't know what it was and others may not, so I recommend printing off information about it from this link (Dr. Timothy Hain, Meniere's expert, wrote this excellent breakdown of the drug and why and when use uses it for Meniere's treatment)

Go to http://www.dizziness-and-balance.com/treatment/drug/serc.html

The pharmacy found it pretty quick from a supplier.

I took 16mg 3 times a day, but these days higher doses are being tried, again I'd refer you to Dr. Hain's page for a breakdown of why.  He updates it often.

If your ENT gives a bunch of guff about it not being legal (which isn't true if you get it compounded) or if your still not sure and are uncomfortable ordering it from a pharmacy, my ENT, Dr Derebery, also does histamine shots 2-3 times a week instead as a replacement for SERC if her patients have trouble getting it. So either way the treatment is the same and she provides it. The shots are more of a pain (literally) though and I don't know about you but I'd rather just take a pill.  Not every Meniere's doc would advocate these shots as an alternative to traditional betahistine tablets (it's confusing, I know... )

Effectiveness:
As to whether it works... well... it is one of those drugs that the jury is kind of still out on. Dr Derebery and Dr T Hain - both famous MM doc's - prescribe it for Meniere's Disease, and both aren't sure why it works, or if it even does in most cases. Dr Hain posted his whole thought process on his website (link is above and below). Now he says that meclizine and serc aren't compatible, Dr Derebery says they are, since she is an allergist I go with her opinion, but that is just my opinion to go with her opinion.

Long story short... take it, and see what happens. It, generally, won't hurt you.

Chad

Links:
Drug facts on SERC
Dr T Hain's opinion on betahistine (updated 1/2016)
Link to the House Ear Clinic where Dr Derebery is at: http://www.houseearclinic.com

Update since Starting Meniett

Since May 9th I have began the following treatments: Started doing the Meniett device at least twice a day, started taking 16mg of Serc (betahistine hydrochloride) three times a day, started allergy densensitization injections on a weekly basis.

Since around May 15th, I have had one Meniere's attack that was brought on by my bad behavior - I drank coffee, even though I know I'm not supposed too!

Other than that attack, I have had no Meniere's symptoms in my bad ear related to hydrops and my tinnitus has improved drastically to the point where it is barely audible and my hearing has gotten quite a bit better.

The Meniett seems to help keep a general state of equilibrium going in the ear and I believe the Serc is helping with excess fluid as well and is a big part of the tinnitus improvement. I don't know how long this will last or whether or not for sure which treatments are helping most, but I thought this update may be helpful.

Treatment Steps for Unilateral MM - A Summary

The PDF file located HERE is intended as a basic summation of the traditional steps of treatment for unilateral (in one ear only) Meniere's Disease. The steps included do not list alternative treatments such as accupuncture etc...

This resource is intended as a discussion point you can bring with you to your doctor, and is not intended as a complete list of ALL available treatments, just the most common.

Visit http://www.menieresinfo.comfor more information on Meniere's and the steps presented here. Visit www.menieres.org to find a community of folks to discuss these options with.

Bilateral patients may also follow many of these steps, but their path of treatment may vary depending on the severity of their symptoms. I feel bilateral patients will still find a lot of value in reading and considering the steps presented.

This document is open to discussion. I'd love to hear feedback on it so I can improve it. Is there something you consider crucial that is missing? What is it? Do you think something shouldn't have been included? Why?

Please share your thoughts in the comments section of this post.

Vest Rehab making a difference

My Vestibular rehab exercises are making a huge differnce in my ability to cope with the loss of my balance center on my left side. The more I challenge it and practice the easier it is for me and the less dizzy and naseous I feel. I can't recommend this enough for Meniere's patients that have had some of there vestibular function permanently destroyed.

We have moved up the complexity of the exercises as well and I am doing some walking and head movement exercises to go with the eye ones I posted previously.

Allergy Testing

As I mentioned below various studies done show that aggresive allergy treatments including desensitization can help reduce the severity and frequency of Meniere's attacks.

My neurotologist is also an allergist and is having me undergo comprehensive allergy testing right now. What does comprehensive mean?
It means:
Over 175 under the skin injections of small amounts of allergin to see if I react (my doc says these injections are the absolutely most accurate way of testing for allergins and that the "prick" tests or blood tests really don't show all allergies present for most people)

Food and inhaled allergies are both being tested

Once they discover what I am allergic to they make up a shot that includes all those allergins that I inject at home once a week. This shot desensitizes my body to the allergens and greatly reduces there ability to affect my body. This reduces inflammation and stress on the inner ear.

My prick tests and blood test showed no active allergies, however when there is a lot of pollen in the air, etc... I DO react so I wasn't sure that was correct. My skin injection tests showed a strong allergic reaction to pollen and certain trees and molds. So I too feel it is much more accurate as a test.

ENG Results and Strategies

My ENG showed that my left ear has lost 96% of measurable balance function. I've only lost 45% of my hearing in that ear however.The doctor said that was very interesting and that she doesn't usually see such a high loss of balance vs hearing.

My right ear is still 100% on both hearing and balance.I was very surprised at how much balance function has been destroyed, as I am really compensating very well and didn't think that much was gone! I am continuing at my vestibular rehab and really hope to strengthen that compensation even more.

The ENG did make me dizzy of course during the test, but I didn't have an attack afterward, I was just generally unsteady for a little while.I got the tube put in my ear for Meniett and I start the device tomorrow morning. Don't really know what to expect. I assume that even though I've lost almost all of my balance function that MM could still cause vertigo attacks in the bad ear, and hopefully the Meniett will help me preserve the hearing I have left.

And of course, I've explained to my right ear that going bilateral, would really not help me out, and have asked it as nicely as possible to try not to do that...

A decision on the next level of treatment Meniett vs Surgery

As I detailed below, the level and frequency of my symptoms increased in Dec/Jan of '04.

When I visited my doctor's they recommended the next step as endo sac surgery (of which there are several types - I'll detail which they thought was best) or they said I could try the Meniett Box. Although they wouldn't make any guarantees about the Meniett and they said they are unsure why it works and don't feel the full weight of evidence is behind it yet.

The endo sac surgery being recommended by the House Ear Clinic was not your typical endo sac decompression or shunt. Rather, they have begun to believe that the sac itself may contain some of the cells responsible for causing the excess fluid build it up that they believe is the cause of symptoms in idiopathic endolymphatic hydrops version of Menieres (which is what they believe I have). As a result, while they do put a shunt in the surgeon told me he also typically scars the endo sac up quite a bit while he is in there in an attempt to destroy the cells he believes are causing some or all of the fluid production.

I had never heard of this version of endo sac surgery before. While the surgeon I spoke to is claiming 75% success rates anecdotally with this approach, he has not published a study on it. If he is right and the offending cells are located in the sac, and destruction/scarring of the sac will destroy those cells that is quite a find! But, at this point I believe it is only a guess (though a highly educated one) on his part.

I also purchased a book that discussed in detail the pro's and con's of endo sac surgeries (published in 1998) called "Treatment Options for Meniere's Disease, Endolymphatic Sac Surgery Do It or Don't Do It" by Arenberg and Graham. Got it for 10 bucks on eBay. The long shot of the book is lots of really smart ear doc's don't agree about the effectiveness of the surgery.

Two studies with in the last year show good results in testing the Meniett device and anecdotal evidence I've collected from menieres posting groups, etc... is also very positive for many people on the device. More people seem to be happy with that vs surgery, at least at first.

The Meniett is not thought to help everyone, but neither does endo sac decompression. I figured if I was going to start something new it should be the thing the doesn't require anyone cutting my inner ear open.

So on May 9th, I am starting the Meniett. I'll post here what I think of it, what it feels like to use it and if I have any correlating increase or decrease in symptoms.

I am ALSO getting thorough allergy testing done and as indicated by my doctor I am going to start allergy desensitization shots. These seemed to help me in the past, and allergy mitigation is starting to show a lot of promise in decreasing the severity and frequency of Meniere's symptoms on patients who have allergies.

Vestibular Rehab Therapy

I don't have much to say about vestibular rehabilitation therapy yet, because I just started this morning. However, I am hopeful that it will help me deal with the range of MM issues I deal with in relation to dizziness.

Today was hard though. My therapist was a nice guy named Meynard, who put me through some diagnostic tests and taught me some exercises. The exercises were primarily focussed on the eyes and ocular movement. After I was done my balance system was definitely aggravated! I had a moderate attack this morning I think partially because of the challenges involved. That is no reason to give up though. I assume it will be difficult before it gets better.

Go to http://ourmedia.org/node/7937 to look at a PDF file of the exercises he asked that I do.

A word about doctors

If you have Meniere's Disease your care should be coordinated by a Neurotologist. This is a special type of Ear Nose and Throat doctor who specializes in neurological and ear disorders.

I feel very strongly this is what you should do. Even if you have to travel and can only see them once in a blue moon, you should see a neurotologist. Not a regular ENT, certainly not just your primary care physician - nope - you should see a neurotologist. There are a number of resources on the web to help you find one. Start with my links post below.

I can recommend through personal experience the following two doctors:
Dr David Wilson - Portland, Oregon
Dr Jennifer Derebery, Los Angeles, CA
Second hand I've heard nice things about Dr. Black in Portland, OR as well.

If I experience more doc's and feel I can recommend them, I will post their information.

Why do I like these docs? Because they are neurotologists who are very, very familiar with Meniere's and deal with it every day. Dr Wilson is very up on the latest research in the field and Dr Derebery is actually leading and doing research in the field. I guarantee most regular ENT's do not have this background.

They both LISTEN! Dr Wilson especially will take a lot of time with you if you need it. Dr Derebery is often pressed for time, but if I ask a question or need further explanation, she stays and provides it with no complaints. I've gone out of my way to be very educated on this topic. And although I am a layperson I can put a doc through their paces with my questions. Both of these folks don't mind, and answer quickly and authoritavely with answers that reflect their opinions of the latest info out there. I also bring my wife with me to these appointments. She is a Registered Nurse and works in a complex clinical setting at a major hospital. She agrees with my opinion of these docs.

I have had a few experiences with traditional ENT's who were not this way at all and were complete jerks to me. I won't name them here, but they weren't neurotoligists anyway, and I think I've established my opinion on that!

My current diagnosis/state and treatments - read this first

I have unilateral (in one ear only) Meniere's Disease in my left ear. I had my first Meniere's (Meniere's is referred to as MM from now on, not MD, because then you'd think I was talking about a doctor :-) attack in November of 2000. I had severe rotational vertigo for about 6 hours and vomited so hard and so often that my eyes turned red due to blown blood vessels.

What causes Meniere's Disease? Read this link for an excellent summary. It is my own feeling that I have traditional endolymphatic hydrops - but that is just a guess.

About every 4 or so months after that I would have another bout of attacks, they usually only lasted one day, but sometimes more. In late 2001 tinnitus and accompanying gradual hearing loss began.

In 2002 I began getting allergy shots to desensitize myself to allergy, since it seemed that allergies made my symptoms worse. This is now a fairly common treatment to try and control MM symptoms, or at least reduce them in MM patients who have allergies. (See Dr J Derebery's study on this treatment).

As many MM patients do, I went into remission for a year and a half. I DO NOT know if the allergy treatments helped cause my remission, but it seems likely they at least helped. There is no proof of that though.

In 2004 my symptoms starting coming back more frequently. In August of '04 and then again in December of '04/Jan '05 I had very severe attacks with accompanying rotational vertigo, and nystagmus of the eyes. My hearing continued to decline in my left ear and is currently at about a 50% loss.

After the attacks in Jan I became sicker on a baseline basis. In other words I am now at least a little dizzy every day. I am having light to moderate attacks more often. These attacks do not disable me too badly and do not have rotational vertigo, but they are very very uncomfortable (imagine spinning around 15 or 20 times and then trying to walk a 1/2 mile. That is how it feels for hours at a time) and they make walking difficult.

For the last year and a half I have not been on allergy shots because I moved to California and left my regular doctor in Portland, OR where I am from. As allergens have become frequent in the last two weeks I am having allergy symptoms - stuffy nose, sneezing, etc... - and my MM symptoms have kicked up so that I am having moderate attacks almost every day in afternoons.

So - What am doing to address all this?

TREATMENT

* First - I started with the typical stuff for MM patients: started a low sodium diet and began taking a diuretic (dyazide). I have also had to stop any use of caffeine and nicotine. (I REALLY miss caffeine... sigh...)
* Then I started allergy shots because I have moderate allergies. As I mentioned above I have ended those, but am now going to start them again in the next few months. I hope they have somewhat of the same mitigating effect that they did before!
* I take meclizine (also known as "antivert") and occasionally xanax as recommended by my doc's as a method to try and control the dizziness and attacks. Meclizine helps, but it has become less effective since January due to the ongoing damage in my inner ear.
* I am trying to lose weight and exercise more - who isn't right? :-) - but in my case I really feel these things will help me feel better on a daily basis. I feel the more I challenge the disease the more I will grow used to it and be better able to handle attacks.
* In the same vein I have started (just today in fact) vestibular rehabilitation therapy. This is a form of physical therapy that teaches people with constant dizziness exercises they can do to help them cope with the sensations and to help them challenge their systems so they can become more functional. See my next post for my first impressions of this.
* Finally I am currently taking SERC (betahistine hydrochloride). I take 16mg 3 times a day. It is theorized that taking or injecting histamine can help the inner ear deal with excess fluid. SERC has been approved for use in Europe and Canada for a number of years and is actually the first level of treatement along with a low sodium diet in those countries. SERC is not legally sold as a brand name drug in the US due to a squabble between the main manufacturer of the drug and the FDA over paperwork. Britain, France, Canada, etc.. have all found the drug to be safe - that is good enough for me. It IS legal in the US to buy SERC if a compounding pharamicist makes it for you from scratch. This is what I do, and my pharmacist has even talked with my insurance and arranged to have it covered! CLICK here for more SERC info.
* I am carefully considering the Meniett Device, but am leaning towards not trying it. I can explain why, but it would be in another post!

Since January I have seen my doctor (Dr Jennifer Derebery at the House Ear Clinic) and she has recommended I start to consider some more extreme options because it seems my MM is progressing quickly right now. Her first suggestion is shunt surgery. On May 9th I am having an ENG test (look up more info on this test at menieresinfo.com) to determine the full extent of the damage to my balance currently to help me determine if I am a candidate for this surgery. See a separate post on this surgery above.

The surgery decision will be quite momentous and I'm not sure how to feel about it, but we'll see.

That is a basic description, I'll edit and update this post if necessary.

First Post = Links!

Here is a post of something I posted elsewhere... but it has my favoirte Meniere's links on it.

I have Meniere's Disease in my left ear. This is a disorder that causes me to have attacks of dizziness, and to go gradually deaf in the affected hear. Right now I have about 5 - 10 severe attacks a year that cause me to be unable to walk for a few hours because I am so dizzy and often cause vomiting as well. They pass, and then I am vaguely back to normal, but I am now about 50% deaf in my bad ear. I have light to moderate attacks occasionally as well.

So here you go. My favorite general Meniere's sites where you can learn what the disease, current treatments etc is http://www.menieresinfo.com/ - Truly one of the best sites on the disease around. GREAT LINKS to every possible avenue of research and treatment currently being tried. They can lead you to research articles, books, and other resources as well. This is THE place to start if you have the disease.

http://www.menieres.org/ - Good site, good message board.
http://www.vestibular.org/ - Organized non profit for vestibular disorders. Good resource for ordering printed literature regarding Meniere's, including low sodium cookbooks.
http://www.lowsodiumcooking.com/ - Good recipes
http://www.meniett.com/ - More common but still controversial treatment for Meniere's. Go to menieresinfo.com above for links to research papers on this treatement.
http://www.houseearclinic.com/dereberyJ.htm - My doctor, plus a good link to look over the House Ear Clinic, which is a major research site for Meniere's.

And of course http://health.groups.yahoo.com/group/MenieresDG/ THE discussion group for Meniere's Disease :-)Feel free to contact me through posting a comment to ask any other questions you may have.

Thanks
Chad

Purpose of this blog!

I've been communicating some things with fellow Meniere's Disease sufferers and thought I'd add a blog that charted my journey with the disease and allowed me to post some resources for people to view.

This is by NO MEANS intended to be a comprehensive source of info about Meniere's Disease, but hopefully people looking for info on this topic will find some helpful resources here and be directed to other places to get help. Feel free to email me your questions about Menieres I will set up a new email address on gmail or yahoo and post it soon.

Thanks
Chad