This site has been up and running for almost nine years. When it was launched, I truly didn't think anyone would find
it, much less read it.
That's in part because I was the only person I knew with pulsatile tinnitus. I was told by doctors
- very good doctors in a large US city - that they'd never seen another patient with the symptom I described. Some of them
didn't believe me - they actually told me that. I don't think I was completely conscious of the impact of each day that went
by before I found doctors to believe me, to help me, and to work with me and for me toward a diagnosis. Looking back, I recall
being extremely determined and diligent on my quest to find answers, but was there a part of me that wondered, what if I never
do? You bet.
That's a scary and exhausting prospect for anyone who experiences pulsatile tinnitus for any period of
time. Even for the most optimistic person, it can be an incredibly isolating reality, in a world where you hear a sound in
sync with your heart beating
It's very difficult for anyone who doesn't experience pulsatile tinnitus to imagine,
even if they try to.
I recently marked my nine year whoosherversary. What are nine years of pulsatile tinnitus
60 whooshes a minute.
3600 whooshes an hour.
86,400 whooshes a day.
31,536,000 whooshes a year.
years of whooshing = approximately 283,824,000 whooshes.
In that time, I've heard from people from all over the
world: men and women of all faiths and no faith; all occupations; all levels of education; married, single, widowed, engaged,
pregnant. A melting pot for sure. But what's shared among each and every person is a quest for a diagnosis and, in the meantime,
a method of coping - that is, a way to get a decent night's sleep, a way to not be anxious all the time about an unknown cause,
a way to feel hopeful that the answers are near.
In nine years we've come a long way. We led the way to a set
of pulsatile diagnosis codes, which formally distinguish our community from the tinnitus community and have already helped many get the attention and
tests warranted. Doctors around the world recognize pulsatile tinnitus and continue educating their colleagues. Thousands
of people from all over the world have joined our group discussion page and dozens request to join every week.
But some people remain in despair, despite the support available
now in and for our community, to find answers or methods of coping that work for them. And it's not their fault, nor their
choice. Some people with pulsatile tinnitus - especially those with severe intensity pulsatile tinnitus - endure such difficulties
dealing with what life with pulsatile tinnitus is like that they decide that they cannot and do not want to live another day.
If we're lucky they reach out to tell us - a cry for help. But sometimes they don't, they can't.
This post is
dedicated to those people, to anyone reading this who may feel that way.
The most difficult part is knowing that some people out there are in such despair that they feel they just can't do
it anymore, and not being able to convince them otherwise. It's hearing from people with familiar situations - the doctors
do not believe them that they hear a sound in sync with their pulse, or their family does not believe them, or the doctors
do not order tests to find the cause nor refer them to doctors who may, or their insurance companies won't authorize the tests
that doctors ordered, or their quality of life or work has been irreparably changed with no hope in sight - there are so many
obstacles members of our community face.
But even the very worst and difficult day for me for reading or listening
about someone's despair is nothing compared to the difficulties faced by those who relay these feelings to me, and sometimes,
with our community on our group page.
While I had no idea anyone would find this site, I sure am glad for each and every
person who did. In nine years we have made many accomplishments to increase awareness among patients and the medical community.
Personally, I've gained much optimism from the success stories, the Cured Whoosher stories, even the small steps members of our community make every day toward a diagnosis and treatment ("I helped
my doctor understand that pulsatile tinnitus is not tinnitus!" "I made a doctor's appointment!" "I had
my cerebral angiogram and it wasn't too bad!"). I'm grateful to see every new visit to this site, every new member request
to our group page, because I know that reaching out is sometimes not the easiest thing to do.
Years ago, because I'd
heard from one too many people who expressed these feelings, I posted a link to suicide resources to our homepage. Today,
I remind everyone that it's there. Help is there. It's here. Our community, to support those who feel alone, is here. And
we're not going anywhere. We hope Whooshers everywhere, their medical professionals and their family and friends, will stick
together and help each other remember:
We haven't posted a Cured Whoosher story in a while. Not to say that there has been a lull in these stories - we've actually seen a tremendous increase
in stories of diagnosis and treatment!
This story below is from Christine, who exhibited persistence and hope
to find an explanation for her pulsatile tinnitus after familiar roadblocks. Christine not only finally has found a
proper diagnosis but also treatment and ... silence! Good for you, Christine, for being your best advocate and for sharing
your story. Enjoy the silence!
Hello, I found your website
a few months ago and I wanted to share my experience in hopes that others can find a cure as well. After a long frustrating
few months and seeing a PCP, Neurosurgeon, two Neuro-radiologists, and three ENT doctors, I finally am whoosh free! About four months ago I
went to my doctor for what I thought would be an ear infection. I was told that my ear looked fine. I explained that I was
hearing a whooshing sound in my left ear. The sound would stop when I pressed on the left side of my neck and would come back
as soon as I released pressure. The doctor ordered an MRI/MRA of my head and referred me to an ENT doctor. Two days
later I was told that I had a brain tumor and needed to see a neurosurgeon. At this point, the whooshing sound was the least
of my problems but I did see go see the ENT doctor. The doctor told me that the sound was caused by the brain tumor. This
made sense to me since the tumor was the same side I was hearing the sound. A week later I had my appointment with the neurosurgeon.
I was happy to find out that the tumor was most likely benign; however, I had to have it removed as was large and was invading
my superior sagittal sinus. My doctor was insistent that the tumor was not causing me to hear the whooshing sound. He sent
me for an ultrasound of my neck, and a CT scan and nothing related to the noise was found. A few weeks later I had most of
tumor removed and unfortunately the sound did not go away. A few weeks after recovering, I made an appointment with the second
ENT doctor. He had his radiologist review the images and he ordered an MRV of the head to look closer at all the vessels in
my brain. This scan also came back normal. The doctor said that the noise is most likely caused by the small piece of tumor
that was left. I brought this information back to my neurosurgeon and he completely disagreed. I went on to take it upon
myself and schedule an appointment with a neuro-radiologist. This doctor thought I had a fistula and scheduled me for an angiogram.
I had the angiogram and everything came back normal. I was told that I would just have to live with the noise. I saw another
neuro-radiologist for a second opinion. He reviewed all my scans and came back with the same response that everything looked
fine. At this point, I felt hopeless and depressed. The thought having to live with this whooshing sound for the rest
of my life was crazy to me. A few weeks later, I went in to see my neurosurgeon for a follow-up. Although he thought that
there was nothing wrong he decided to refer me to a friend of his. An ENT doctor that specializes in Neurotology. I was
hesitant at this point to see another doctor. I was so drained from all the appointments and testing. I decided I would go
and meet with the doctor. I wasn’t expecting much but I’m so happy I went to this appointment. The doctor was
looking at my previous CT scans (the same scan that all the other doctors saw) and saw something. He told me that it looks
like I have a sigmoid sinus dehiscence. The bone over my sigmoid sinus was gone. However, he saw this on both sides of my
head but I wasn’t hearing anything from the right side. He sent me for a high resolution CT of my temporal bone.
I got a call confirming that the new CT scan showed a sigmoid sinus dehiscence. He thought the reason I was hearing it on
my left side was because my veins were more dominant on that side. The doctor was hesitant to say that this was definitely
the cause of the whooshing sound but he said that it was the only thing that made sense. I scheduled surgery for two
weeks later to have the hole repaired.
a week since surgery and I am whoosh free! My ear is still swollen and not back to normal but I am hopeful that once everything
is completely healed the noise will still be gone.
For more info on Sigmoid Sinus Dehiscence
see this link from Johns Hopkins. Also see more personal stories of successful diagnosis and treatment on the Cured Whooshers page.
Many Whooshers have found that these help mask the whoosh to provide a good night's sleep. As always, if you get to
their site from the ad above or any link on Whooshers.com, SleepPhones will donate a portion of proceeds from every sale to
Whooshers.com. Each and every penny received is used to help maintain this website. Take advantage of the holiday sales!
Pulsatile Tinnitus, Possibly a Side Effect of Medication?
It's a question many of us ask, especially when our pulsatile tinnitus began simultaneous to use of medication, prescribed
There haven't been too many studies on this possible relationship to pulsatile tinnitus
cases, generally, but one recent study looks specifically at fluroquinolone antibiotics, a specific family of medications,
and the possible relationship of their use to one specific known cause of pulsatile tinnitus: idiopathic intracranial hypertention
This recent study looks at a variety of the drugs in this category, including Levaquin. This summary reveals the process by which researchers searched databases for patients whose files indicated within a short period
of time the ICD code for IIH, imaging and other diagnostic testing that would confirm an IIH diagnosis, as well as a prescription
for the drugs within 15-30 days of the IIH diagnosis.
Basically, the study suggested an increased risk of IIH for users
of this family of medications.
These medications are no stranger to lawsuits, apparently. Just Google "Fluoroquinolone
Litigation" and you'll see the reports.
Now that pulsatile tinnitus has its own ICD code, the potential for monitoring our cases has improved. SO MUCH. However, we see even in this report that pulsatile tinnitus
is mentioned at the beginning of the abstract but then, it seems, it is referred to as tinnitus at the end of the abstract.
Pulsatile tinnitus is not tinnitus!
It may take a while for the pulsatile tinnitus code to be integrated generally
and in similar research studies, but we see in this study the signficance of proper identification of symptoms to research,
and the possibility that medications may play a factor in some pulsatile tinnitus cases, at least as they relate to this possible
As usual, consult a doctor with any questions about medications.
If you are experiencing pulsatile tinnitus, don't forget that there is a large community of pulsatile tinnitus "Whooshers"
on our active Facebook group page, including some diagnosed with Chiari. You're not alone!
I'm happy to be speaking about pulsatile tinnitus in Cleveland this weekend at the 10th Annual FMDSA Meeting! Learn more about Fibromuscular Dysplasia, one possible cause of pulsatile tinnitus. Click the informative video
Pulsatile tinnitus may be subjective (only the patient
can hear it) or objective (the patient AND others can hear it).
Sometimes objective pulsatile tinnitus can be heard with
Sometimes it can even be heard without a stethoscope, just by putting your ear next to the pulsatile tinnitus
It is repeated in the medical literature
that doctors should try to listen for the bruit (the sound) when a patient presents with pulsatile tinnitus. Sometimes
where the sound is located can be a clue as to the source. At the very least, hearing the sound gets the attention of medical
professionals and may speed up the inquiry as to the cause.
The right spot for the stethescope bell will vary by the patient, as the location of the source of the pulsatile
tinnitus differs from patient to patient.
a very helpful post with images from "Kate," one of the members of our very active Facebook group page, republished with her permission, on how to listen for the bruit with
"I made this to show where my bruit can be heard on my skull.
In December 2016
I was told by an ER doctor, when I asked him to listen to my skull,
"We don't listen there. There's nothing there
to listen to."
He would only auscult
my carotid on my neck and then told me my symptoms could be Meniere's or multiple sclerosis and they can't do much for
me except refer me to an ENT.
My personal experience/tips, as I am not a medical professional so I'm just
sharing what worked for me to find the objective noise:
The stethoscope is a pediatric stethoscope. The person I borrowed this from let me try their fancy top brand cardiac stethoscope
but the pediatric one worked best. It helps to press firmly but not too firmly. The sound volume changes with pressure.
I can find it easily but in noisy doctor offices it can be harder to hear and especially if the person listening just
quickly places the bell and moves it. It's louder in certain spots so patience and careful listening for at least 10
seconds in each spot is important in my opinion. Also, doing jumping jacks to make it louder helped my doctor the first
time to find it. The second time she didn't need me to do jumping jacks because she knew what she was listening for.
As Whoosh Whoosher has said, not everyone with PT has objective PT/bruit and the absence of one doesn't change the validity of your PT.
Docs should take all PT seriously. In my experience, finding the bruit just really helped as far as having them
take it seriously and sped up the process.
sure you check with different postures and head positions in case the whoosh varies by these factors. For example, mine is
usually silent/quiet/gurgly when laying flat, louder when tilting head to opposite shoulder of PT ear and quieter when
tilting head to PT ear.
I really think the important things are to have a silent place to listen, a patient listener,
and a good, smaller-sized stethoscope (which also helps very specifically locating the loudest point).
Other factors, once I found my whoosh, that I noticed influence the sound are things
like valsalva maneuver, holding breath, pressing artery/veins, etc. I've experimented with pressing on my carotid and jugular
on both sides as well as the blood vessel on the back of my neck which I think might be the occipital artery.
I am hoping this information will be useful for
the doctors and perhaps clue them to anatomical areas to focus on when looking at my scans."
Be sure to see the Sounds page on this site for more images and links to audio of real whoosh sounds, recorded by real whooshers!
Peter Mansfield, M.R.I. Pioneer and Nobel Laureate, Dies at 83
Sometimes it's easy to forget that we are indebted to some of the pioneers in medicine who take a chance and create something
that will endure their lifetimes and help more people than they ever could have imagined!
Sir Peter Mansfield, whose
research led to the invention of MRI, died February 8, 2017.
While an MRI can't detect each and every possible cause
of pulsatile tinnitus, it can detect many of them. A number of people in our community, including Yours Truly, are pretty
glad Sir Mansfield was born!
Read more about Sir Peter Mansfield's amazing life and discoveries here, from the New York Times.