For me, reading for fun just isn't what it used to be.
Ah, how I used to look forward to reading chapters
slowly in quiet spaces, especially in the summertime. But reading for pleasure became a casualty when my whoosh started
a year and a half ago. Now, as a whoosher, quiet is not something I long for. Quite the opposite. The whoosh
is too distracting in quiet spaces. It sometimes makes focusing on the life of a story seem impossible.
I
have to read a lot for work, but since I HAVE to do it, I get it done even when I don't enjoy doing it. And when I read
for enjoyment, I really want to enjoy it, so I try not to push myself to read when the whooshing irks me out of the mood.
Solution? I use noise to drown out the whooshing so I can focus on the words on the page. Yes, I read in
loud places. The subway! Loud cafes! Or if I'm at a quiet place like at my desk or in my house, I listen
to white noise loudly with headphones while I turn the pages. And yes, I recognize that feeding my brain and
my eardrums more noise probably (definitely) is not good for me, but give me a break.
For these reasons, the irony never
escaped me while reading, "Zero Decibels: The Quest for Absolute Silence," by George Michelsen Foy. After all, I was reading a book about a man's life-changing search for silence while drowning my surroundings in the
noisiest of noises. Much like reading about heart disease while pigging out on fast food. I was pigging out on noise.
Silence. We whooshers have a love/hate relationship with silence, don't we? On one hand, I'm a whoosher
with dreams of my first day of post-whoosh silence, but until that wondrous day comes, I try to keep my minute-to-minute awake
time as freaking loud as possible with fans, sound maskers, etc. Okay, I'm not blowing vuvuzelas in my living room like
at the World Cup, but let's just say my noise tolerance would probably make a "silence-seeker" like Mr. Foy a little
nervous.
The funny thing is, in just the first few pages, I learned that Mr. Foy had an epiphany on the very
metro system I had just found a seat on to start reading his book. Oh, how familiar to me were the loud screeches,
the trains zooming by in all directions, the crying babies he described. Whereas non-whooshing noise has become my
friend, living in loud spaces -- and realizing how loud is loud -- rendered an almost desperate curiousity in My. Foy's
search for silence. He had had it with noise, and with each page, Mr. Foy gets closer to measuring and realizing
what he calls "absolute silence." It's a journey full of surprises for Mr. Foy and just as many contemplative questions
that the reader can ask himself or herself.
Not the least of which is the question - as we discussed
several months ago here on this site - what is silence, anyway?
I admit, I'm not finished reading this book... another consequence of my whooshing. I used to read books
front to back in one sitting, but now that just doesn't happen. It takes me longer to turn the pages because it almost
feels like I'm learning to read again. I don't know if that makes any sense to any of you, but that's what it feels
like. I'm not as patient a reader as I used to be. I'll get to the last pages, but it just takes me longer.
But if you're looking for a good summer read, and if you've ever considered what silence means to you, I encourage
you to check out "Zero Decibels: The Quest for Absolute Silence" by George Michelsen Foy. Be sure to check
out our whoosher pal Blondie's review of "Zero Decibels" here.
Soon, we'll have a book section under "Books On Sound," because there seem to be quite a few authors exploring
the question of silence. I think it's an interesting one, for whooshers and non-whooshers alike.
Claustrophobia doesn't get much coverage on sites like this one, primarily because I guess we're usually more focused on
the prize: a pulsatile tinnitus cause and cure. But let's face it - when you have pulsatile tinnitus, a lot of time
and energy is usually spent getting all sorts of tests, many in a long, closed-in tube. While, for some of us, getting
an MRI or other such test is no big deal, others experience tremendous anxiety before and during these procedures. Just the
thought of getting into one of those long tubes and lying still provokes some people to cancel their doctors' appointments
and sabotage any hopes of diagnosis.
I think we can all agree that the medical technology available is amazing
(albeit expensive). And also, there are all sorts of practical things that can keep us from having the tests: money,
time, etc. But for those with claustrophobia, fear is another very real obstacle. Just telling someone "it
will be fine," doesn't provide enough comfort! Sometimes doctors address this by offering anxiety meds to patients
right before the procedure to get them through it.
So you may ask, what if there were a special MRI machine created
to remove the clausterphobia factor? How about an MRI machine that takes images from patients who are sitting or standing
UP?!
What if I told you that there's no need to wait! That's right, no more lying in a tube with an inch of wiggle
room.
In 2007 (yes, this is sort of old news) the Intellectual Property Owners Education Foundation (IPOEF) selected
FONAR president and founder Professor Raymond V. Damadian, M.D., as the 34th winner of the ‘National
Inventor of the Year Award’ for the invention of the FONAR UPRIGHT™ Multi-Position™ MRI.
As the name implies, it's an upright MRI machine! I can't believe I just learned about this. I heard from
a tinnitus sufferer who said she watched DVDs while her test was being administered, AND a family member could accompany her
in the same room. And even beyond the obvious relief this provides claustrophobic patients, there may also be some medical
benefits of testing people as they sit or stand upright rather than lying down. Brilliant!
It doesn't look like
these are everywhere yet, but if your doctor has advised you to get an MRI and your claustrophobia is severe, you may want
to look into whether one of these neat machines is in your area!
Have any of you had an MRI in a machine like this?
If so, please leave a comment to tell us about it, or write whooshers@gmail.com. Thanks!
In my opinion, pulsatile tinnitus is not tinnitus. There, I said it.
Most of the time, I'm cool and
collected, but like each of you I have my bad days. And well, I guess this is one of them.
I'm SO TIRED of misinformed
people who tell us that we "just have tinnitus" and "there's no cure" and "live with it."
I'm SO SAD to hear from people --some on the verge of suicide-- who've been whooshing for years because their doctors stopped
investigating their "tinnitus" before ordering even a single test to rule out a single cause.
I
think calling us "tinnitus" sufferers hurts those of us with pulsatile tinnitus even more. Why? Well,
except for being able to relate because we too hear "sounds," do we really have much else in common with regular
(nonpulsatile) tinnitus sufferers? The sound machines regular tinnitus sufferers praise don't usually work for us because
they don't mask the WHOOOOSH WHOOOOSH pulsing sound. The medical advice they receive doesn't typically apply to us because
the physiology of the tinnitus symptoms is almost always different. Diet often doesn't make a difference to pulsatile
tinnitus sufferers. The "just don't think about it and it will get better after time" advice is well taken,
but that simply isn't the case for many of us with pulsatile tinnitus.
WHY? Because pulsatile tinnitus is a noise
with a rhythm, a life of its own that manifests in our heads. It's often severe. Pulsatile tinnitus is NOT ringing
in the ears. And perhaps most important, it often is not (as many describe regular tinnitus) a phantom noise; it has
a cause that can often be identified--that SHOULD be identified because sometimes, SOMETIMES, the pulsatile tinnitus is a
sign that something is wrong and needs fixin' somewhere in our bodies.
However, not all of the differences are bad.
Unlike any regular tinnitus sufferers, some of US have been CURED! Go ahead, click here, here, here, and here, for some of their stories. These are REAL cases of pulsatile tinnitus that were medically remedied; these are not
stories of voodoo science cures.
Shouldn't this news provide some incentive for doctors to explore the long list
of possible causes of our pulsatile tinnitus, to see if a cure is possible? Shouldn't the entire tinnitus community be rooting
for us and say "Another one of us was cured! The hope is alive!"?
YES, OF COURSE IT SHOULD.
But
tinnitus advocacy efforts out there for the most part do not address the study or treatment of pulsatile tinnitus. Does
this make anyone else confused, sad and ANGRY? Look for yourself - most medical studies don't apply to us. Pulsatile
tinnitus is an aside, a footnote on almost every medical document that describes "tinnitus," even though it deserves
its own chapter! We're not even on Wikipedia. It's like we're the black sheep in the family that no one wants
to talk about.
The American Tinnitus Association (ATA) is having their annual "Walk to Silence Tinnitus" this weekend to raise money for tinnitus research. As regular readers here know, I am a big fan of the ATA, and I truly
hope they raise millions of dollars to help study the devastating effects and causes of tinnitus. And I repeat: I think
that ANY research towards a cure for regular tinnitus can only be GOOD news for ALL tinnitus sufferers. There are millions
and millions of tinnitus sufferers around the world who need and deserve this help.
But I am SO ANNOYED that none
of this money or attention will go toward studying causes and treatment of PULSATILE tinnitus.
Pulsatile tinnitus
doesn't have a spokesperson.
Pulsatile tinnitus doesn't have a congressional committee addressing it.
Pulsatile
tinnitus doesn't have an association of doctors to facilitate CONVERSATION and comparison of different cases around the world.
Pulsatile tinnitus doesn't even have a chapter in many medical school books, so most doctors don't even STUDY it.
WHY IS THIS? SOMEONE PLEASE TELL ME?
Why do we even have to carry the "tinnitus" name?
Because we hear a sound? You would think that calling it "pulsatile" tinnitus would be enough to distinguish it
from regular tinnitus, but it simply is not. Pulsatile tinnitus sufferers like us have to resort to tinnitus Web sites, tinnitus
nonprofit associations and doctors offices familiar only with REGULAR TINNITUS and we simply ARE NOT GETTING THE CARE OR ADVOCACY
WE NEED AND DESERVE.
Can we change the name of pulsatile tinnitus so it won't be confused anymore with nonpulsatile
tinnitus? I don't know, call it something like PULSITUS. Think of the different shades of blue in a box of crayons.
You don't label each of them simply "BLUE," do you? NO! You give them different names to distinguish
them. Why? BECAUSE THEY'RE DIFFERENT! If regular tinnitus is blue, then I would argue that pulsatile tinnitus is purple.
Calling it violet blue is too confusing.
Can we all at least agree that pulsatile tinnitus is not blue?
This
site was launched almost one year ago. Another 365 days has passed. If my math is right, that's over 31 million
minutes of whooshing (Math is not my forte, so anyone who can correct me, please, go right ahead). When I launched Whooshers.com,
I honestly didn't think anyone else would find it, primarily because I was led to believe that I was an anomaly -- a freak
of nature. Like being born with one eyeball (You can still see with one eyeball, so what's the big deal? Live
with it!).
But in one year, Whooshers.com has been visited by over 12,000 people! I'm glad that it
has helped us to meet and discuss pulsatile tinnitus. Despite the friends and support received here, we (myself included)
still cling to tinnitus associations and tinnitus groups and tinnitus Web sites and tinnitus articles only because, to us,
they're the cool kids in the class who are getting all of the attention (though I admit, they deserve even more). And
we want some of it. Just a little?! Regular tinnitus sufferers out there, you understand, don't you?
I don't belittle
the experience that regular nonpulsatile tinnitus sufferers endure. Tinnitus is a terrible thing and it deserves all
the medical attention it is getting. But that's my point. We shouldn't compare tinnitus to pulsatile tinnitus.
Regular tinnitus sufferers are rightfully desperate for MORE research, MORE money to pay doctors and MORE membership to increase
attention and advocacy efforts. All I'm saying is each shade of tinnitus deserves its place in the box of medical study
and care, and as of right now, pulsatile tinnitus sufferers are not getting ANYTHING.
Instead, each of us starts
from scratch, as if no one else on the planet has ever had pulsatile tinnitus. We are left to advocate for ourselves, with
feelings of isolation and desperation that only increase when we walk into (and then out of!) a doctor's office without answers.
It just shouldn't be that way.
We put men on the moon, built skyscrapers that withstand earthquakes, created
the microwave, developed vaccines to prevent the chickenpox, manufactured planes that fly on autopilot... and you're telling
me we can't address pulsatile tinnitus?
THERE IS SIMPLY NO REASON WHY WE HAVE TO SUFFER ALONE AND WITHOUT MEDICAL
ADVOCACY AND SUPPORT!
