My Meniere’s
Disease story
Early fall 1999. It was a hot, sunny day in southern
Arizona. We were out of town on a job
installing equipment in a cell tower shelter for Nextel. During the long drive into the mountainous area
north of Douglas suddenly the straight
highway appeared to slowly curve to the left, then straighten, then curve, then
straighten. As I was driving this was
pretty unsettling. I knew that the road
was still straight, but my eyes and correlating brain area didn’t agree. I pulled over and let my co-worker drive and
I leaned my seat back, closed my eyes and dozed for an hour or so. When I woke up I was fine and had no idea
what had just happened. My ear felt
“clogged” but I figured that it was from the extended, loud driving experience
in a heavily loaded, open work van, and the droning cooling fans on the
equipment in the cell site shelter.
A few weeks later I found myself in
a room kept at 65° making fiber optic
terminations. The room was full of racks
upon racks of computer equipment cooled with moderately loud axial fans. As I went through the steps of stripping the
fiber, putting hot-melt connectors in the heater, inserting the fiber and
letting it cool to be cleaved then polished the room slowly started to seem to
rotate. At first I was able to
continue. I was the only one in our
company that had been to the week-long training on fiber optic handling and
termination, so there was a lot of pressure on me to do the job and do it
right. No one could come and replace
me. So I walked down the hall to get a
drink and ended up leaning against the wall as I walked to keep from falling over. I managed to get a drink and make it back to
the room. Then things got worse. The room started to spin violently in a
counter clock-wise direction. My vision
told me the room would quickly spin about ¼ turn counter-clockwise then sort of
reset back to straight then spin again in rapid succession. I have never done well on any sort of
spinning or twirling ride at amusement parks, so this was terrible for me. Very quickly I became nauseated, then vastly
more nauseated. I threw up over and over
until my stomach was trying to get rid of even the memory of my breakfast. All I could do was huddle in the fetal
position on the floor and not open my eyes or move. My neural system began to freak out. I had cold sweats and then my muscles began
to feel as if electricity was coursing through them, causing them to vibrate at
about 10 hertz. All I could do was lie
there and pray I would pass out and it would end, which of course I
didn’t.
After what seemed a long time
someone finally happened by and found me.
I could barely speak. After a
quick ambulance ride to the hospital and some sort of injection I slowly felt
the spinning (I later learned it is appropriately called ”Severe Rotational
Vertigo”) subside. The shock to my body
and brain didn’t go away for a couple of days.
I was to learn that this is a typical aftereffect. I felt lightheaded, tired, and my stomach had
a constant, dull pain. As my concerned wife drove me home, whatever the
injection was that I had been given made me feel like I couldn’t hold still and
I was going to jump out of my skin. I
had to force myself to exist through it, not minute to minute but second to
second. I suspect it was a combination
of the injection and the neural trauma.
I haven’t experienced that sensation since.
The ER doctor suspected it was an
inner ear issue and sent me to an Ear, Nose and Throat (ENT) specialist. He talked with me, looked in my ears, and did
a couple of simple tests and told me I had something called Meniere’s
Disease. He prescribed a medication for
the nausea and a diuretic (water pill)
and sent me on my way. No talk of
causes, helpful dietary changes, or anything.
Now, I can’t blame him for not guessing at causes. After much research I have discovered that
many believe Meniere’s shouldn’t be called a “disease” but rather a “syndrome”. Disease indicates that it is understood and
has a known cause and treatment. This is
definitely not the case with
Meniere’s. Syndrome indicates a known
set of symptoms and an indeterminate cause or treatment. This is the case with Meniere’s. I experience (and every website and doctor
concurs) fullness or pressure in the
inner ear (i.e. That “clogged” feeling), loss of hearing (which is
degenerative, progressive, and permanent), tinnitus (a low roar and/or
high-pitched ringing), and rotational vertigo.
Everyone has triggers, and they are usually quite varied. Things that trigger one person’s symptoms are
totally different for another person.
But one thing we all have in common; when a rotational vertigo attack hits we need a
dark, quiet place to lie down, close our eyes, and not move. Usually that is in our bed with the shades
drawn, lights out, and no one talk to us or jiggle the bed. You may well discover that it helps to lie
down on one side or the other, or on your back, with or without a pillow. You see, your balance receptor thinks you are
in motion, and if you can make gravity agree with what your ear thinks is
happening it really helps. Also, when
your ear is feeling that “fullness” and your hearing ability in that ear has
dropped you may find an ear plug helps.
Moderately loud sounds can become irritating, and loud noises can
actually be painful. Looking at screens
on small electronic devices or a computer screen can make you start to feel
dizzy. Leaning forward and looking down
repeatedly to load the dishwasher or do the dishes can bring on vertigo if you
are already close. Only use that last
excuse on your spouse if it is true!
So what had brought this on for
me? Luckily I have a cousin who was in
the middle of his residency to become a doctor and he looked to the significant
resources available to him for answers.
One of the things he told me was that Meniere’s can be brought on by an
increase of blood flow in the cranium that occasions an increase of flow in the
inner ear. While this cause is
considered rare and even controversial it made me think about things that I had
be doing that were new and different.
What immediately came to mind was a hair cream that I had been using
that was “all natural” and therefore “safe” since it didn’t use chemicals but
rather stimulating herbs and plant oils.
It turned out for me that these compounds, especially essential oils are
my worst and most fast-acting trigger.
Unfortunately, discontinuing using them and avoiding all possible
contact with them doesn’t make Meniere’s Syndrome go away. Once it is initiated it is pretty much
something you deal with for the rest of mortality.
Now, don’t let this be over-discouraging! Some people experience vertigo daily, some go
weeks, months, or even years without it.
Most get it in only one ear, but some unfortunates get it in both
ears. For those with extreme,
untreatable Meniere’s there are surgical options that are drastic, but better
than the alternative. The trick is
figuring out your trigger(s). Everyone
has them, and they are very different.
Some can’t have wind blowing across their ears, some can’t have any
sugar, some get really bad anytime the weather changes (barometric pressure),
and the list goes on and on.
And then there is a
list of things that pretty much apply to everyone with Meniere’s Syndrome. These are things that all informational
websites and good ENT doctors will tell you:
Avoid alcohol, tobacco, coffee, caffeine, chocolate, stress, get plenty
of sleep, and eat a low sodium diet.
Most of those you can control, but when you feel your ear getting more
pressurized, the roaring in your ear increases, and your hearing decreases, and
you know that the world is going to spin soon, your stress level goes up no
matter what you try to do!
So here is what I eventually
discovered over the years that has helped me, and I am confident it will help
most people who suffer from Meniere’s.
1- Meclizine.
You can buy it over the counter, but it is much cheaper by
prescription. For most people a 25 mg
capsule is best. It doesn’t treat the
problem. It does mask small attacks, and
it makes bad attacks much smaller. And
it helps with the nausea during an attack.
While you are figuring things out this will help you not have the
terrible rotational vertigo attacks, or at least take the edge off of them. You take 1 every 24 hours. Try not to take it unless you are feeling
unsteady and fear an attack is likely coming on. I have taken it for weeks at a time and
experienced no serious side effects, just relief from the vertigo. It can make you feel slightly lightheaded and
“almost unsteady”. I know quite a few people who have taken it every day for
years without any bad side effects, but it is much better if you can figure out
how to control Meniere’s without it.
When I once tried 50 Mg (2 capsules) at the same time it knocked me down
and made me so drowsy I couldn’t get out of bed for most of the day. Some people get some of that effect from just
25 Mg.
2- Drink plenty of water. Absolutely stop
drinking soda pop, energy drinks, V8 vegetable juice (it has an atrocious amount
of sodium in it!), even be sparing drinking milk (130 mg sodium per 8 oz. Cup) You can drink some real fruit juice,
but mostly drink just water, at least ½ gallon per day even in the winter. I finally made the connection that my
symptoms went away in the summer when I was working out in the heat every day
and drinking lots of water and sweating out the excess sodium (notice I don’t
just say “salt”). In the wintertime I
would drink very little water and wasn’t sweating and my symptoms would
return. I can’t stress this point
enough. My overall health increased as
soon as I started doing this. I used to
suffer from a painful, inflamed hip joint that even in my late 20’s would often
become so painful that I could hardly walk.
A good chiropractor told me what I just told you about drinking water
and avoiding pop and such and unfortunately I didn’t try it for about 8 years. When I finally did (because of my Meniere’s)
my hip basically healed. At my current
age of 45 I have no pain or effects in my hip joint or any of my joints, and I
have recently hiked 22 miles up, across, and back down Pine Valley mountain in
one day with no problem in my hip. I
consider it pretty much a miracle. I am
reminded of something the councilor’s at Thunder Ridge Scout Camp would have us
chant regularly, “What do we want?-Clear Pee!-How do we get it? Drink more
water!” If your urine is dark you aren’t
drinking enough water; you want clear or
nearly clear urine.
Drinking water brought about a
lessening of symptoms for me in only a few days.
3- Stop eating processed foods, sweet or
salty. The list of bad things is
lengthy, but here are a few for starters.
Do not consume:
msg (monosodium glutamate),
Fast food, period! Most restaurant food. Especially Chinese food.
Junk food. Chips, candy bars, Oreos, candy, etc...
corn syrup, high-fructose corn syrup (this is what Karo is
made of),
cheap fats found in restaurant fryers (olive oil, real
coconut oil, and the like are ok) and in butter substitutes (real butter is ok
in small amounts, but it has 90 mg of sodium per tablespoon),
V8 vegetable juice, bacon, ham, sausage, lunch meat, pepperoni, jerky, and Canadian
bacon (they are loaded not only with salt but also sodium nitrite and
sodium nitrate),
I personally have found it very beneficial to replace white
salt with Real Salt and Pink Himalayan Crystal Salt. I understand that you body treats cheap,
stripped, bleached white salt as a toxin and dedicates water molecules to
isolate it and try to eliminate it. I
have had less problems with the salt in its natural state with the accompanying
trace minerals. One of the reason given
by the medical field as to why you need to lower your sodium intake is that is
causes water retention and contributes to the “endolymphatic hydrops”. Endolymphatic hydrops basically means your
inner ear, where the hearing and balance takes place, gets too full and over
pressurized with fluid, causing Meniere’s symptoms. The purpose of the diuretic (water pill) is
to try to get your body to release more water and sodium than it normally does,
which will hopefully relieve the over fullness of fluid in the inner ear. I personally have tried the diuretic multiple
times and it doesn’t help me, but rather makes me feel lousy in multiple
ways. Some people have better
results. Drinking lots of water flushes
out my excess toxins and sodium, and fulfils what the doctors are trying to
accomplish with the diuretic. Eating less
of these toxins is indispensable too.
4- Lower you sodium intake. It is recommended that most people intake
about 2000 Mg (milligrams ) of sodium per day. Most people get 3500Mg or more, easily. You
may well need to try to only take in 1000-1200 Mg which is still generally safe
(I do an average of 600-800 per day, but only do that if your doctor is cool
with it). There is a reason I don’t say “Salt”. Salt (sodium chloride, NaCl) is only one source
of sodium. An egg, still in the shell
contains about 65-70 mg, so does 4 oz. of natural chicken or beef. Most chicken has added broth which means
150Mg of sodium or more per 4 oz. You
have to learn to read labels. A basic
rule is you have to prepare food from scratch.
If it is processed or already made, it has too much sodium, and bad
sodium (chemical preservatives). 1/4
teaspoon of cheap white salt has 590 Mg sodium, The Spice Lab Himalayan Pink Salt from Costco has 420 Mg sodium per
¼ teaspoon. Some sea salts have 570 Mg
Sodium per ¼ teaspoon. So even all salts
are not created equal! Baking soda has
300 Mg per ¼ tsp, and baking powder 180 Mg per ¼ tsp. Canned anything. Especially beans, chili con carne, cream of
mushroom or chicken or celery soup, canned Mexican sauces (enchilada sauce for
example), soy sauce. Again, read the
labels.
I mentioned fast food and restaurant food. This is especially true for Chinese
food. It is, without exception, full of
sodium. They use lots of MSG, and even
the sushi has sodium-based preservatives in it.
What happens is it may not taste “salty” but it is deceptively loading
you up with sodium. My wife started
making bread for us with less salt. From
the store it can have 120-180 Mg sodium per slice or more. Flour tortillas have 350- 550 Mg or more, but
corn tortillas can be found with only 10-25 Mg for 2 tortillas. Most cheese has 150 Mg or more per 1 oz., but
Swiss cheese can be found with 35-40 Mg per 1 oz. Even granola bars and Clif bars have 180-250
Mg. Dairy products all have sodium in
them.
We created our own cookbook of modified or just plain made-up
recipes with lower sodium recipes, and desserts with way less sugar in
them. We learned to use 50-80% whole
grains in our flour; even in cookies, pies, cakes and muffins, as well as
biscuits, waffles, pancakes, German oven pancakes, etc... We learned that by creating a multi-grain mix
we could improve the taste so it wasn’t so overpoweringly “wheaty”. Most dessert recipes call for 1 cup of sugar
per 1 cup of flour. We generally do ½
cup sugar for 4 cups of flour, and add honey to help sweeten things. You learn by trial and error how much you can
use before things start to taste too “honeyey”.
It is surprising how quickly things come to taste satisfyingly sweet
even though they contain 50-75% less sugar.
This is good for most Meniere’s sufferers symptoms, and for everyone’s
physical and dental health (most of our seven kids have NEVER had a cavity).
Now, you will need to determine how drastic you need to be in
avoiding all of this stuff. In my
experience it changes. About 8 years ago
I started drinking lots of water and stopped the pop. I occasionally had some junk food, used some
canned food to make dinner, and ate out occasionally at Wendy’s or a nice
restaurant. I completely got rid of all
of my symptoms for 5 years. My hearing
returned to about 70% of perfect (every time you have an extended bout of this
you lose a little bit more of your hearing in the affected ear, permanently. However, when it goes down to say 30% during
a bad spell it will return to almost as good as it was before when the spell
goes away). I was tickled to say the
least. Then after 5 years of no problems
we were visiting family down in Mesa and I forgot my usual toothpaste and
without thinking I used my wife’s. Her’s
was an all natural toothpaste flavored with real spearmint oil. My Meniere’s was back full force in less than
36 hours. I had horrible bouts of severe
rotational vertigo every 2-3 weeks, even though it was summer time. It took nearly a year for the symptoms to
lessen and for the vertigo spells to go away.
That is the bad thing about Meniere’s disease. One slip up can take months to undo.
I did pretty well for
the next couple of years until I ate too much prepared, high-sodium food,
nearly every day, for a two-week period.
The vertigo came back with a vengeance for 8 months. The vertigo was so constant and debilitating
that time that I finally was forced to seek serious, professional medical
help. I would have vertigo up to 5 days
a week, sometimes 3 times a day, and for hours at a time. I went to a Meniere’s specialist and talked
about options. The first thing that a
good doctor will do it put you through a battery of tests, including an MRI and
hearing and balance tests. They will
blow air into your ears, turn you all different ways, make you look at moving,
blinking dots inside of blackout goggles, and myriad other things. The point of all that is to determine if you
really have Meniere’s. There are other
things that can cause the same symptoms, and they can do something about those
other things.
With Meniere’s however, they can only throw things at it and
see if anything sticks. If something
they try can lower your symptoms even 20% it is considered a success of
sorts. There is a good ENT center in
Northern Utah. I ended up seeing doctor
Eric Slattery in their Draper clinic.
They have one of the better pages on Meniere’s Disease and treatment
found at http://entcenterutah.com/menieres-disease-services/
. This is one of the better
explanations of symptoms and optional treatments available if you can’t control
it with diet and lifestyle. One surgery
they don’t list, and one that has reportedly had decent success is where they
remove some of the bone next to the inner ear allowing the fluid sac to expand
into that space and lessen the pressure.
I haven’t had to progress that far.
They start with the less-invasive treatments first, then work up to more
serious ones if they need to. They can
even sever the nerve that is carrying the misinformation from your inner ear to
the brain if necessary, but that is drastic and irreversible, and it is brain surgery. One nick in the wrong place and bad things
can happen. There is also a clinic in
Saint George that seemed pretty good. I think it was the Hearing and Balance
Center. I went there to have some of the
testing done, but didn’t see a doctor specifically for Meniere’s consultation.
What I have had done was the Prednisone (steroid)
treatment. First we tried the
injection. That didn’t go well for me
(for some people it does). I began to
have “drop attacks”, where you go from normal to full severe rotational vertigo
in the blink of an eye. It would last for 10-15 seconds, then pretty much fade
away. Normally I feel the vertigo coming
on 30 minutes or even hours beforehand.
And when the attacks come they start slow and gradually build to full
out attacks. This means driving hadn’t
been dangerous for me. Now I didn’t know
what to expect. After talking to my
doctor I tried an oral dose of Prednisone instead. It consisted of starting with a very high
dosage for a few days, then a medium dosage for a few days, then a low dosage
for a few days. The first few days were
rough. The higher dosage basically put
me out of commission for a week. I felt
groggy, light-headed, and had some vertigo and lack of appetite. That slowly faded away. After the full regimen my vertigo attacks started
becoming less and less frequent and severe.
I think that the Prednisone helped.
I also hope I never need it again.
There have days when I have found myself in the middle of yet
another horrible, repeating attack, and I was ready to go into surgery and have
the nerve from my left ear severed and be done with it. Prayer, faith and an understanding of God’s
plan were the only thing that got me through it. Meniere’s Syndrome has caused me to make diet
and lifestyle changes that few could make.
I know people who are overweight, have diabetes, blown knees,
and can only get around in a wheelchair and they still won’t kick the junk food
and pop. I have been able to give all
that up and more. Meniere’s is a pretty
serious motivator.
For breakfast, I have found that having a meal replacement shake is a great way to start out my day. I use the Garden of Life meal replacement shake, Vanilla or Lightly Sweet. Both are both good. I find them cheapest on eBay. I put in lots of different frozen fruits: peaches, apricot, pineapple, mango, strawberries, wild blueberries, mixed berries from Costco and a fresh banana. I also add 1/2 tsp beet juice powder and a handful of raw spinach and a couple of leaves of kale from the garden. I eat a lot of green salads with lots of different vegetables added and make a vinaigrette without salt. I've learned to cooked and eat vegetables with just a dash of salt. It is Nov 2017 and I have gone a year now without having a vertigo attack by eating a clean diet.
