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