Does the sound of someone stacking dishes in the same room seem louder since your pulsatile tinnitus began?
What
about the television volume... have you found yourself asking someone next to you to lower the volume, when it seems low enough
to the other person?
Is the sound so loud it annoys you, like fingernails on a chalkboard?
It's
bad enough to deal with and manage the pulsing heartbeat sound of pulsatile tinnitus, but for some of us, the pulsing sound
is accompanied by hyperacusis.
According to the Hyperacusis Network, hyperacusis is "a collapsed tolerance to normal environmental sounds." For people who suffer from hyperacusis,
"the volume on the whole world seems stuck on high."
For the most part, hyperacusis is still a mystery.
Many medical centers around the world study the relationship between tinnitus and hyperacusis. Some say as many as
40% of tinnitus sufferers experience some level of hyperacusis, and when present, hyperacusis should be treated with the
tinnitus.
Researchers, like the University of Iowa's Tinnitus Clinic, study hyperacusis. If you are experiencing
hyperacusis, please take a few minutes to fill out their survey here.
Do pulsatile tinnitus sufferers sometimes experience hyperacusis, too? If you are a whoosher and you experience
hyperacusis, please leave a comment below.
The New York Times recently reviewed the book, "In Pursuit of Silence," by George Prochnik. Needless to say, as a pulsatile tinnitus sufferer, the title hooked me in.
Mr. Prochnick's
premise explores the question: What is silence? He finds a very quiet place in Iowa "so quiet," he says, some
find it physically impossible to stay.
Now I gotta tell ya, since my pulsatile tinnitus set in over a year ago,
I've longed and longed for that place, so the thought of a place TOO quiet baffles me. But it interests me. As
much as tinnitus bothers us, are some people just as bothered by silence? Why so? And is silence, something we
all seem to desire, really what we need to thrive?
The reviewer's brief personal anecdote is a fascinating aspect
of the review. In the first paragraph, she briefly explains that she is deaf but she can still hear sound. She
describes it as "deep space sounds, a hollow hum that washes in and fades away, changes in pitch and volume."
Interesting (and similar to some pulsatile tinnitus sounds, right?). This person, whom we all think should know silence,
only really knows *her* form of silence.
And just when my thoughts started brewing, I was even more intrigued
by the tinnitus sufferer whose letter was printed in response to the book review. In sum, the tinnitus sufferer accepts the constant noise.
That's the key:
acceptance. And acceptance doesn't mean giving in or "living with it." Unlike regular tinnitus, pulsatile
tinnitus causes can often be identified. But until we each find the cause and remedy for our whooshes, we can try to
accept it for what it is now and find our new silence.
Before pulsatile tinnitus I would pick up books like this
in two seconds and plop on the couch in a quiet room to read. There *would* be other noises around though, even in the
quiet room, in that old silence.
Mr. Prochnik explores this silence-that's-not-so-silent. Maybe true silence
is not what we need or want.
There is so much to say on the topic of tinnitus supplements and the voracious ad campaigns supporting them. Check
out this recent LA Times article titled, "Do Claims For Tinnitus Supplements Ring True?"
The article addresses supplements for nonpulsatile tinnitus, but there are also quite a few supplements
out there targeted specifically to sufferers of pulsatile tinnitus. Have you seen them?
It's one
thing for a manufacturer to claim that a supplement alleviates some symptoms associated with pulsatile tinnitus -- like anxiety,
sleeplessness, etc. I actually believe that some supplements out there may
help in that regard; to their credit, there are supplements that make this distinction clear. But those that claim to
CURE pulsatile tinnitus? If you've made a pulsatile tinnitus cure in a bottle, seems to me you should be preparing
your acceptance speech for the Nobel Prize in Medicine instead of writing elaborate ads on Google.
Unfortunately,
my challenge to companies that produce supplements that "cure" pulsatile tinnitus has not been answered. In the meantime,
my opinion remains that many desperate tinnitus sufferers --pulsatile AND nonpulsatile-- are being duped when they buy these
supplement "cures."
As I've mentioned before, I would love to be proved wrong. And my offer
still stands: if you are a supplement manufacturer and you have proof that your product cures pulsatile tinnitus, write whooshers@gmail.com with endorsements from the medical community and pulsatile tinnitus patients, and I'll devote this Web site to your praises.
Until then, I don't believe you.
Have any of you tried any supplements, particularly the ones advertised to alleviate
or "cure" pulsatile tinnitus symptoms? Did they have any effect? Are you a doctor who sometimes recommends
certain supplements to your pulsatile tinnitus patients? Don't be afraid to leave your comments below! You can
help other whooshers out there.
If you haven't already, please let us know (anonymously) where you whoosh, so we can tag you on the map!
Click
the "Comments" link below this post, type in your country, state/province (or follow the alternative directions
in the link above), and we'll tag your location on the map ASAP!
Pulsatile tinnitus is a medical mystery. Some of us wake up one day and hear the whooshing. Out of the blue.
No warning.
Some of us, however, may hold more clues than we think.
At one time or another, all of us
think about the day before we started whooshing -- many of us long for that quiet day! But, did anything unusual
happen that day? The week before? Were there any warning signs?
Some of us can't recall anything
unusual from those "days before," but some of us experience the whooshing after we hurt ourselves while moving something
heavy or while playing a sport. Some of us had a bad chiropractic adjustment, hurt our neck in a car accident or felt
kind of weird after a new yoga routine. Some of us experienced vertigo and think maybe that was related to the onset of pulsatile
tinnitus.
Is your whooshing accompanied by pain (see this week's Whooshers poll!)? Do you
get vertigo? Can injuries that occured just prior to the onset of pulsatile tinnitus provide clues about and treatment
for the whooshing?
The answer, for some of us, is YES. In this article, which we posted last year, a pulsatile tinnitus sufferer describes his experience with a brief, sharp pain and whooshing.
A dissection of his carotid artery was isolated and he was treated, but only after seeing several doctors who told him (mistakenly)
what many of us have heard before: it's tinnitus, there's no cure, so live with it. Isn't it amazing how EASY it is
for some doctors to say that?
Of course, each of us is different, and in a room full of pulsatile tinnitus sufferers,
it's possible for each person to have a different whoosh cause. But the point is, stories like this should encourage
us to tell our doctors about accompanying pain or other symptoms, and to find doctors who are willing to consider and
explore the POSSIBILITY that we may know more about the onset of our whoosh than what may show up on an MRI, MRA or other
test. Injuries, pain, and unusual feelings like vertigo may provide clues!
Whooshers.com received the email
below from a Whoosher looking for insight... can you help her?
Back in the summer of 2007, I
went to see my current chiro for a neck adjustment because of a migraine headache. I have been using chiropractic for my migraine
relief for many years, after the adjustment, on a Saturday afternoon, I went home and felt fine. On Monday morning I woke
up with vertigo. I had never had it before and I thought I was still asleep dreaming! The room was spinning.
Anyway, I went right back to my chiro the same day for an adjustment. He never took responsibility for the
vertigo at all. I had it for two and a half weeks. During that time I saw my regular physician, who sent me to a neurologist,
who checked me for vertigo, which I had still, and then scheduled a MRI and MRA of the head and neck, with and without contrast,
and a Doppler of my carotid arteries. All tests checked out okay. Then I had some physical therapy with massage, use of a
TENS machine, and acupuncture. Well time and money won out with that.
A few weeks after
the vertigo stopped, as I was watching television, I started to hear a pulsing in my ear! It hasnt stopped since! I have seen
ENTs (my hearing is perfect), doctors who are still stumped, chiros, pain doctors. Had another round of MRI and MRA, all negative.
Another Doppler of the carotids, negative again. I have had muscle pain in my shoulder for many years due to a work injury.
I used chiropractic for discomfort then and now. I am told that I have soft tissue damage that cannot be repaired. The pulsing
is on the same side as my shoulder pain. My current chiro thinks that the shoulder pain and the pulsing are related.
He says that it has something to do with the Mastoid bone and the muscle running up behind my ear.
The
doctors are stumped and say maybe I should go to Mayo Clinic. Besides the shoulder pain, and the constant whooshing, I am
fine. I think I'd rather have the shoulder pain forever then have the whooshing! It makes me feel so depressed because nothing
makes it go away! I take Xanax three times a day and propranolol at night to try to get better sleep and to prevent headaches.
I'm at my wits end!
Does anyone else ever complain about sore muscles or muscle spasms
that also run along the side of their neck and up behind their ear to cause pulsing??
Yesterday, I had an MRI/MRA and visited with a
doctor about my whoosh. I don't want to monopolize whooshers.com with my giant post about it, so click here to read the story on my personal blog.
Even though it might be difficult to get Ms. Whoosher
to post this part, I want to give a huge shout-out of praise to the owner of this site for bringing together so much information.
Collectively, I think we are discovering so many clues to the sources of our whooshing. We're also finding friends and company
for our misery. Ha! But in all seriousness, we love getting your emails and hearing your stories. And thank you, readers,
for letting us tell our tales.
So wherever you are, lift your coffee or soda or beer and
cheer with me. We are brave, interesting souls. We whoosh. We whoosh LOUDLY. But that doesn't mean we have to give in to it.
We will conquer these whooshes one heartbeat at a time. And if we don't, at least we have each other.
Yours
in the Whoosh,
Blondie
Many thanks to Blondie, for her kind words and courage
to share her experience, and to ALL the whooshers out there who share their stories with us!
