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. 

Check out the photos and read the press release here.

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!

WhooshEr

Among the most common questions received at Whooshers.com are:

1) What kind of doctor should I visit about my pulsatile tinnitus?

and

2) Where can I find one? 

Depending on your symptoms, seeing a neurotologist might be a good place to start.  Note the "T" in neuroTologist... neurotology is different from neurology.

There are far fewer neurotologists than there are neurologists, so they're not so easy to find!

This should help:

The American Neurotology Society (ANS) recently updated their directory of neurotologists in the US.  The doctors are listed alphabetically by state.

Click here to download the file (a PDF file).

Click here to find out more about neurotologists and otologists and what kind of medical care they provide.  

When my whooshing began and I discovered it had a name, I made appointments with several ENTs.  I thought an ENT was a logical choice, since I was *hearing* a weird sound, right?  Well two out of three of them knew absolutely nothing about pulsatile tinnitus.  One of them told me to live with it.  Another rolled his eyes at me like I was crazy.  I felt like I was in the twilight zone.  Me: "You're an EAR, Nose, Throat doctor, right?"

In hindsight, they probably a) clumped me in the group of regular tinnitus sufferers (for whom there is still no cure, unfortunately) because they didn't know better, or b) were too lazy to recognize and explore my symptoms for what they could mean.  Or both.  So I kept whooshing without answers. 

I finally found an ENT who knew what pulsatile tinnitus is, how different it is from regular tinntius, and how important it is to rule out certain causes from the long list of possible ones.  But he admitted he wasn't that familiar with pulsatile tinnitus, so he couldn't really help me.  After all, only 3% of tinnitus sufferers have this form of tinnitus.  So, he referred me to another doctor and I soon saw a neurotologist.  By the way, before that I had never even heard of a neurotologist.  It was still a long, windy road, but I am very grateful to that ENT for getting me on the right track (and off Twilight Zone Boulevard) to finding the cause of my pulsatile tinnitus. 

That said, not every neurotologist is an expert in pulsatile tinnitus, but several doctors have assured me that a neurotology specialist should at least be familiar with pulsatile tinnitus causes and/or know where to make a referral, if necessary.  

For neurotologists outside the US, email whooshers@gmail.com.

As always, please keep us posted on any progress you make in your diagnosis/treatment by sending us an email or commenting on this site (anonymously, if you prefer!).   

"Vital Signs: An Unwelcome Ringing," by Dr. Christopher Linstrom, Discover Magazine, April 2010.  

Interesting read about another possible cause of pulsatile tinnitus.  Even better, the article was written by the doctor who didn't give up on his pulsatile tinnitus patient, Stephen.  Don't be thrown off like I was initially by the "ringing" in the title; this article is about a pulsatile tinnitus patient. 

The last paragraph should inspire each of us:

"For me, Stephen’s case reinforced the notion that the medical history, as detailed by the patient himself or herself, is the most important part of any medical or surgical encounter. Patients who have difficult medical conditions are usually good historians: They live with the problem all day, every day, and can reflect upon its origins and its clinical course. The patient almost always provides all of the diagnostic clues to the solution, guiding the physician in where to look and how to treat."

To read the article in its entirety, please click HERE.  

We learned about this article thanks to one of our Whooshers Facebook friends.  If you're on Facebook, please join us.  See the bottom of this page!  We're on Twitter, too!

Subjective: Only you can hear the pulsatile tinnitus.

Objective: You AND others (i.e. your doctor with a stethoscope) can hear it.  

Subjective: You (and people around you) may think you're crazy because no one can hear the sounds you hear.

Objective: More common than subjective (according to this medical journal article).  

But is objective PT really more common than subjective? 

I know a whoosher who had objective pulsatile tinnitus that others around her could hear withOUT a stethoscope.  Even her doctors.  Yep, that's right.  

That's a rare case, I think.

Which kind of pulsatile tinnitus do you have? Subjective or Objective?

Yes:      88%

Maybe:  12%

No:         0%

Total Votes: 26

Thanks for voting and please see the latest Whooshers.com poll!

Recently, the New England Journal of Medicine reported on a case in which a 50-year-old woman with pulsatile tinnitus and no hearing loss was diagnosed with "Glomus Tympanicum."  The cause of the pulsatile tinnitus was a benign tumor in the ear.

The report includes a photo and video of the tumor inside the patient's ear (warning: not for the squeamish--these are the real thing).  In the video, if you look very carefully, you can see the pulsing movement from the pulsatile tinnitus i.e. whooshing!

The tumor was surgically removed and the pulsatile tinnitus was CURED. 

According to Ear Institute of Chicago (EIC), pulsatile tinnitus is the most common symptom of Glomus Tympanicum.  Doctors at EIC say that, "surgical removal of glomus tympanicum tumors is typically performed under general anesthesia on an out patient basis (same day surgery)."

I'll repeat the same caveat I always do when reporting on another cured whoosher: each of us is different.  There are many, many possible causes of pulsatile tinnitus.  This is just one more.  We don't all have tumors.

But remember, this isn't the first whoosher who has been cured (which reminds me, I need to make a list of Whooshers.com entries about cured whooshers!).  Stories like this one reinforce my view that anyone who tells you that all pulsatile tinnitus sufferers just have to "live with it--there's no cure" should read some medical journals like this one and pay more attention.  

Remember, we're not here to diagnose each other on the Internet.  Cases like this one are worth exploring with your doctor.  Pretty neat!  Another whoosher cured!

WhooshEr