A (Not So Happy) Pulsatile Tinnitus Whoosherversary
About this time last year, I began experiencing pulsatile tinnitus. 365 days ago, I didn't even know what pulsatile
tinnitus was. Yet, here I am, and here we are. Still whooshing every other second. That's a lot of whooshes.
At first, the sound I heard was faint. Like many of you, at the onset, I thought the whooshing was probably
associated with a cold or sinus infection (even though, physically, I felt fine) or a result of changing air pressure since
I'd just been on several long flights. I convinced myself it would probably just go away.
go away. I started to worry and looked up my symptoms online. Oh, boy. And, just like that, the adventure
to find the cause of my whoosh began. Doctors galore.
I've heard from many of you who've had pulsatile
tinnitus anniversaries... one year, ten year, even thirty year anniversaries. Pulsatile tinnitus anniversaries aren't
If this were a wedding anniversary, the first year anniversary would traditionally be celebrated with
something "paper." The last thing I want to do right now is celebrate, but in the spirit of "paper,"
I wrote a letter to the first doctor who took my pulsatile tinnitus seriously, to thank him.
A doctor who takes
pulsatile tinnitus seriously is reason to celebrate.
My whoosher wish --if I even get one-- is to fix the
cause of my pulsatile tinnitus by this time next year.
There are already a few posts and articles on this site about Idiopathic Intracranial Hypertension, yet another possible
cause of pulsatile tinnitus. Basically, the symptoms of the condition mimic those from a brain tumor, but no tumor is
Not all individuals with IIH experience whooshing, and vice versa. But since some of you have written
in to let us know that this was your eventual diagnosis, I thought we should take another look at it.
of you have IIH experiences you can share with the rest of us re symptoms, diagnosis, and treatment? Please click on
the Comments section below.
The Intracranial Hypertension Research Center (IHRC) provides a well organized site
with a list of IH symptoms, which includes pulsatile tinnitus.
Many medical sites explain that IIH is most common in women of childbearing
age who are overweight or obese. It's a myth, however, that this is the only group affected. Some men, skinny
women and kids are affected, too. I wonder if it's more difficult for individuals other than those "typically"
affected to be diagnosed with IIH. I imagine so.
By the way, you may be familiar with "pseudotumor
cerebri," or "benign intracranial hypertention." Actually some of the resources on Whooshers are labeled
under these names. Well, according to IHRC, these names are becoming less accepted in the medical research community
due to the fact that they may imply that the condition is not severe. And according to the Mayo Clinic, if there's no explanation for the increased intracranial pressure, pseudotumor cerebri or benign intracranial hypertension
is more frequently called "idiopathic intracranial hypertension."
Makes sense to me. To people
suffering from this condition, I'm sure there is nothing "benign" or "pseudo" about what they're going
Diagnosis is sometimes tricky. A recent Whooshers post about imaging reviewed a medical journal article which indicated that idiopathic intracranial hypertension (doctors there used the "benign"
name, oops), often doesn't show up any abnormal imaging findings. Something to think about if you have some of the symptoms
of IIH AND you've had a bunch of tests that have not revealed the cause of your whooshing, or anything else.
just some thoughts. According to the sites above, your GP and a neuro-ophthalmologist may be good first stops to explore
IIH symptoms. Please leave comments below or write email@example.com if you have info to share.
A tinnitus sufferer, Mr. Morris committed suicide on January 28, 2010.
In a note he left, he wrote:
"I hope that
my death will help bring about some cure for those that suffer with tinnitus, by bringing attention to it. . . . It is important
that my life will not be wasted."
Mr. Morris, we will continue to strive towards a tinnitus cure and more
attention to all the symptoms -- physical and emotional -- of non-pulsatile and pulsatile tinnitus.
Morris is not alone in his despair. Tinnitus is annoying, but to some sufferers, the sounds they hear are truly debilitating
and life-altering. These feelings of extreme torment are difficult --too difficult-- for some to describe and manage.
But there's one thing we can all agree on: just because the distress is invisible does not mean it's "all
in our heads." Tinnitus is real.
I didn't know Mr. Morris or what kind of treatment he had, but as
a pulsatile tinnitus sufferer, I can understand the root of his despair. It's very sad. My condolences to his
family. I'm sure they miss him terribly.
If you or a tinnitus sufferer you know is experiencing severe
sadness or depression, we hear you. Please tell your doctor. There are resources available that can help.
Another article about Mr. Morris is posted here.
According to the American Tinnitus Association, tinnitus affects over 50 million Americans and over 250 million people
But when you talk about pulsatile tinnitus, the numbers get much smaller.
Some groups estimate that only 3% of all tinnitus sufferers have pulsatile tinnitus. That means in a room full of 100
tinnitus sufferers, only 3 will have pulsatile tinnitus. Of the three, how many hear the whooshing sound vs another pulsing
sound? Who knows.
As an individual with pulsatile tinnitus, I’ll acknowledge that it is rare (and maybe
I should buy a lottery ticket). I’ll even concede that, since there are so many more individuals with non-pulsatile
tinnitus, it’s understandable why those of us with pulsatile tinnitus may not get that much attention.
Wait a second.
250 million tinnitus sufferers x 3% = 7,500,000 pulsatile tinnitus sufferers worldwide!
That’s right, 7,500,000 of us.
I don’t know about you, but when I was diagnosed, I sure didn’t feel
like one of 7,500,000. The lack of available information and support for pulsatile tinnitus sufferers caused me a lot
of stress and anxiety; for a while I felt a bit like I was the only one in the universe with pulsatile tinnitus.
If it weren’t for the Internet, I’d be the only pulsatile tinnitus sufferer I know.
But since the
launch of this site in July 2009, over 3,450 of you (unique vistors, for the techie geeks) from all over the world have visited
Whooshers.com and viewed over 10,100 pages!
This may not really seem like a lot, especially compared to the big
numbers above, but when the site was launched I never imagined this many whooshers would find it. The numbers are growing
I’m sure some of you are family members, friends, and doctors of pulsatile tinnitus patients.
Others of you are just bored at work, and a few of you found yourself here, immediately realized you’d made a typo in
your search engine or something, and are off reading another Web site. But my hunch is most of you
are individuals with pulsatile tinnitus. Even if only half of the 3,450 Whooshers.com visitors are
pulsatile tinnitus sufferers, I’d say we have a large enough group to make sure that pulsatile tinnitus gets more attention
in medical offices, research labs and support groups in the days and years to come.