If It's September, It's Intracranial Hypertension (IH) Awareness Month!
Whooshers.com is a big supporter of all who raise awareness for intracranial hypertension (IH), a condition that impacts
many, many whooshers and doesn't get enough attention. Since September is IH Awareness Month, let's chat a minute about
IH, shall we?
According to the Intracranial Hypertension Research Foundation (IHRF), IH is the term for neurological disorders that result when cerebrospinal fluid (CSF) in the skull is too high. Whooshing
is sometimes the first and sole symptom of IH. There are different types of IH: Acute/Chronic; Idiopathic/Secondary - and
different people with even the very same diagnosis may experience IH very differently.
Like a lot of causes of pulsatile
tinnitus (and not unlike the symptom itself), IH has a bit of a PR problem. Not enough people know much about it, and medical
professionals aren't necessarily trained to detect its symptoms. It's one of those conditions that everyone has said
for years is "rare," but really, it may just be "rarely diagnosed." To make it more confusing,
IH has had a number of different names, including pseudotumor cerebri and benign intracranial hypertension.
This book was purchased in 2003 - even its title is outdated now! More organizations and support groups have since
been born and there are a lot of wonderful people raising awareness and support, for the condition and for the people enduring
the symptoms and finding their way to and through treatment.
But there's a lot left to be learned and shared. We've
heard from a number of whooshers who were diagnosed with IH, and while the term "cure" is unfortunately not a common
one associated with IH - not yet - the good news is once identified it is possible to find support and treatment. We've
posted quite a few Whoosher-IH stories, including this one. I encourage more IHers to share their stories with us.
If you don't know a lot about IH, one of the best
things you can do is read about IH Myths. For example, did you know that IH impacts MEN as well as women? It's true. Did you know that you don't need
to experience headaches or have vision problems to have IH? That's true, too. Very often, even if doctors are familiar
with IH, a patient will fall between the cracks because the myths - oh, the myths - keep many patients from receiving a proper
In its "Introduction," the (albeit outdated) book quotes Dr. C. Everett Koop, the former
U.S. Surgeon General. He said, "The best prescription is knowledge." I couldn't agree more.
Have Pulsatile Tinnitus? How To Get Your Doctor's Attention and Getting Beyond "Live With It"
Due to the fact that pulsatile tinnitus is a rare symptom, many of the emails I receive from patients go something like
"I have pulsatile tinnitus. My ENT thinks it's tinnitus. How do I convince him/her that pulsatile
tinnitus is different, that it warrants medical testing, and that a cause may be identified?"
The key, I think,
is to refer them to medical reports. If your medical professionals give you a hard time about relying on "Dr Google,"
remind them that the reports/abstracts listed on Whooshers.com are from medical journals, which include pieces written by
their colleagues: medical professionals who are familiar with our cases. If a doctor won't take time to read a medical report
to learn more about an area s/he may not be so familiar with, well, I'd want to find another doctor.
at Whooshers.com agree 100% that self-diagnosis is not in anyone's best interest and we recommend against it. But just because
a medical report is online does not mean it's bogus. In fact, most medical journals now post articles and abstracts electronically,
which has been a very positive factor in the recognition of and treatment for rare symptoms, including pulsatile tinnitus.
Whooshers.com has scores of links to medical reports written by doctors, for doctors that explain the difference
between tinnitus and pulsatile tinnitus and, more specifically, the medical workup warranted when a pulsatile tinnitus patient
walks into a doctor's office. You can find them under "Resources" on the home page and many, many more specific
reports about specific causes and treatments on our Cured Whooshers page. The Cured Whooshers page also includes personal stories written by patients, many of whom articulate quite well the
impact of the symptom during their journey toward a diagnosis and treatment.
Here is a list of a few resources to get
you started, to put in your back pocket before heading to your next doctor's appointment:
(That's right. There's no code yet. We need one, and so do the doctors
who treat us. Not to mention that, if we had a code, health insurance companies would have less reason to fight our doctors
when they order a diagnostic test.)
Another Cured Whoosher: Brain Dural Arteriovenous Fistula (BDAVF)
The latest Cured Whoosher story from "Liz" is another inspiring (albeit frustrating!) tale of a patient who was
told to "live with it," all while the evasive cause of her pulsatile tinnitus, brain dural arteriovenous fistula (BDAVF), could have caused a stroke, or worse. Her persistence was rewarded by answers and a procedure that cured her of the whoosh.
Reading other whoosher stories helped her throughout the process, so she wanted to give back and tell her story so it, too,
may help other whooshers.
This will be added to our Cured Whooshers page, where we keep links to similar stories of persistence and varying underlying causes. We actually have several other
stories from whooshers diagnosed with BDAVF. Links to medical reports may be found there, too. So, doctors: read
Liz, good for you for being your best advocate! Enjoy the silence.
In January 2013, a couple
days after a dental cleaning appointment, I started having a severe headache, jaw ache and whooshing in my left ear.
It literally sounded like a 'whoosh, whoosh, whoosh' noise which was in time to my heartbeat. It continued 24/7 and
kept getting worse. I had been suffering with cold and sinus issues for a couple of weeks, saw my primary physician
and got antibiotics. Didn't get better. In February 2013, researching on the Internet brought me to Whooshers.com and that page (and the links) got me started thinking that with my symptoms that it might be pulsatile tinnitus. I read it
might be related to high blood pressure, neck pain, Temporomandibular Joint Disorder (TMJ), all kinds
of things. I had high blood pressure so I checked it but could find no correlation to the whooshing. My sleep
was big time disrupted. Saw my dentist re TMJ. Saw an ENT specialist who said ears were clear but could be TMJ.
From the beginning, I was able to shut the whoosh off by pressing on the back of my head behind my left ear, but then
my head would hurt. I had a physical and nothing showed up. I gave up Aleve. I tried heat, ice, neck exercises,
relaxation imagery for TMJ, watched my posture, tried white noise to sleep, tried a cotton ball in my ear, limited my chewing
of hard stuff, essential oils and tried massage... nothing worked or really helped for long.
In April of 2013,
I met with a second ENT specialist who ordered a hearing test which showed no problems with hearing - a good thing but no
answer for whooshing. He ordered an MRI to rule out a blood vessel tumor. This ENT had actually heard of pulsatile tinnitus
(but not my primary or the first ENT). My MRI showed blood vessels all good but I was sent me to physical therapy for
my TMJ which did help a bit in at least managing the neck and jaw pain. Apparently I carry a lot of tension in my neck
The more I read on Whooshers.com the more nervous I became. I was then scheduled (per my ENT) for an ultrasound Doppler which also returned clear but found
a thyroid nodule. Next up was a MRI/MRA/MRV, and I was hopeful because these were all terms I had read about. Meanwhile
the whoosh continued 24/7 and drove me completely bonkers!
During one of my sleepless nights I had read it was
possible to record my whoosh and I was able to do that (can't remember how but finally friends and family could hear what
I had been hearing). I played the whoosh for the second ENT referral and he said could hear it a little on my recording.
I kept pushing my primary about further testing of my thyroid nodule because I read that too can cause
pulsatile tinnitus... this whole thing was quite a frustrating process to this point. Through this whooshing noise, I kept
getting sick with infections, low temperatures, extreme debilitating fatigue, just general feeling like crap all the time.
In January of this year (2014), The ENT found a neurosurgeon for me to talk to about my symptoms. I met him in February.
The neurosurgeon heard my whoosh (bruit) (woohoo), had heard of Whooshers.com, had heard of pulsatile tinnitus
and he could actually feel it (trill). He had reviewed all my scans and said he was fairly sure it was a dural arteriovenous
fistula but didn't think I needed to repeat all the scans, just do the gold standard test of angiogram. Did I mention
when I finally saw the neurosurgeon's card it said "neurointerventionalist!!!! I knew from Whooshers.com that was the
doctor that might be able to figure this out and he did!!!!!!! And he had heard the whoosh too...what a relief that was!!!
Backtracking a little, a few weeks prior to my procedure my head had begun to hurt a lot and every little tiny touch
made my head hurt worse and worse. I was getting more worried and not sure what the heck was going on but was glad I already
had an appointment scheduled.
On April 22, I had my diagnostic angiogram and after 4 plus hours, they were able
to find and fix my fistula with an onyx embolization - YAHOO!!!! The neurosurgeons (I had two neurosurgeons work
on me) said my situation was a textbook case for BDAVF. I spent the night in the hospital and woke up with NO whoosh!!!!
From what I understood they had found a big mess of criss-crossed arteries and veins and blood flow starting to go backwards
which was probably why I was feeling worse. If it hadn't been found and fixed it could have possibly led to a brain
bleed or stroke.
I am soooo grateful to them and thankful and blessed to have no more whoosh. The relentless24/7
whoosh was rough and 'peace' can not be underestimated. I don't know how everyone can continue longer than I had
but it was so helpful to read everyone's stories on here....a little scary to read sometimes but helpful overall :-))) and
it was hard for me to do but you just have to keep pushing for answers. I wish nothing but cured whooshers for everyone on
Note: It's now almost 3 months after my procedure and I am still whoosh free. I was told I would lose
my hair in that left back quadrant of my head and I did. Still waiting for it to grow back lol but that's a minor issue
compared to what could have happened. I will have a follow-up angiogram in another 3 months just to make sure everything
For more information about brain dural arteriovenous fistula, see this link at neuroangio.org.
Reports on Imaging and Diagnostic Evaluation: Possible Diagnosis in 57% of Pulsatile Tinnitus Cases
A recently published study that evaluated pulsatile tinnitus cases from 2002-2013, reports a comprehensive presentation
of the complex nature of our cases and the tests that doctors should consider to investigate the underlying cause of pulsatile
Have you seen a doctor who has told you that you have to "live with" pulsatile tinnitus before ordering
a series of diagnostic tests? Maybe it's time to show them these reports, written by their colleagues: doctors familiar with
In pulsatile tinnitus cases, there are usually no easy answers, no specific "go-to" test
that will rule everything out, no direct checklist of tests for "proper' evaluation.
Is it easy to determine
the cause? Usually not. Should each PT patient learn to "live with it," as we're often told, before a single diagnostic
test? Absolutely not.
As the report indicates, "The role of the radiologist is to identify all treatable causes of PT. It is necessary to be aware
of the pertinent imaging findings and potential imaging pitfalls of the common etiologies of PT."
Another report, written a couple of years ago but similar in its recommendations for thorough evaluation and testing, states, "In patients
with PT however, imaging may be positive in up to 57- 100 % of patients though about 20-30% of these patients have 'normal
variants' of controversial significance..."
The more medical professionals appreciate the complexities of
our cases, the closer we all get to proper evaluation of the symptom. And in more and more cases, the closer we get to a diagnosis,
treatment -- and silence!
Special thanks to the reader who gave me the heads up about these reports!
Pulsatile Tinnitus and Fibromuscular Dysplasia (FMD): A Study
I was contacted by the FMDSA and doctors involved in a recent study that examined the relationship between Fibromuscular Dysplasia (FMD) and pulsatile tinnitus.
Below is an image capture
of the chart that they've provided permission for me to reprint. For a link to the file in printable, .PDF form, look under
"Resources" on the right-hand side of this page for the file, "Article: Unraveling Pulsatile Tinnitus in FMD;
A Report of the United States Registry for Fibromuscular Dysplasia."
"Unraveling Pulsatile Tinnitus in FMD;
A Report of the United States Registry for Fibromuscular Dysplasia," Redah Zainub Mahmood;
Jeffrey Olin; Xiaokui Gu; Eva Kline-Rogers;
James Froehlich; J. Michael Bacharach; Yung-Wei Chi;
Bruce Gray; Michael Jaff; Barry Katzen; Soo
Hyun Kim; Pamela Mace; Robert McBane; Aditya
Sharma; Christopher White; Heather Gornik, J Am Coll
For more information on FMD, be sure to visit FMDSA.org. Information about the annual FMDSA conference, this year held on May 17, 2014, may be found here.
UPDATE: The Cleveland Clinic links to Whooshers.com as a resource for FMD patients and the medical professionals who treat them.