Another Journey Toward a Pulsatile Tinnitus Diagnosis
I recently received this personal story from a Whoosher who pushed and pushed for diagnostic tests - tests that our symptom,
pulsatile tinnitus, clearly warrant - and she finally found a diagnosis. It's yet another inspiring example of diligence and
perseverance for answers.
My journey began at the
end of January 2018. I woke up one morning with my left ear blocked…like I had an ear plug in my ear and it would not
clear. I was not sure why this occurred since I had not been sick at all but have had a history of sinus/allergy issues forever.
I went to my ENT who told me to take
allergy medicine daily for 30 days along with a nasal steroid which would open up the ear over time. I did as the doctor told
me and followed the medicine routine religiously. Nothing changed.
At the same time I was having dizzy spells and my body felt off. I then started hearing my heartbeat
in my ears about 2 weeks after my blocked ear which started keeping me up at night since it was worse when I laid down. I
was not sure what this was, so I went to my General Practioner and told him my symptoms and informed him what my ENT told
me. He agreed with the ENT and told me to keep on the allergy medicine routine to see if this would change the outcome. He
said that since my ear was blocked I was probably more aware of the sound now. He did order blood work though since I had
not had a physical in a long time just to see where my levels were and to rule out any other possible issues.
I left the doctor’s office and tried to grin and bear it.
I struggled with sleep but did the best I could to ignore it and move on.
My blood work came back about 1 week later which did show that my thyroid was high and
my Vitamin D was low. The doctor told me to buy a Vitamin supplement but did not feel that my thyroid levels were “high
enough for him to begin treatment.” I thought that was odd especially since thyroid issues are hereditary and run in
my family (my grandmother, mother and aunt all have thyroid issues) but trusted the doctor at that time since this was how
I was raised.
I was not feeling well
and the whooshing was really bad at night. Some nights were so bad that I could feel my heartbeat throughout my entire body
which was keeping me up.
It was now
the end of February 2018 and I was trying to work through it but having issues feeling ok at work. I then went back to my
GP in March and told him that I was not getting better, I was not sleeping well and that my body felt like electricity was
running through it. He still refused to deal with my thyroid and referred me to a neurologist since my head was now feeling
tingly all over when I touched it or ran my fingers through my hair. I went to the neurologist the next day who said he thought
it was migraine related and ordered an MRI.
The results were back a few days later….they came back normal. I was discouraged but the neurologist said I should
take Depakote (anti-seizure medicine) for 30 days to see if this helped with the whooshing and sleeping. It did for a bit
but then came back. Plus, I was not happy having to take medication for something when I did not have a diagnosis but I did
as the doctor told me and followed through with the medication for 30 days.
After 30 days was up and no change in results in the whooshing arena, the neurologist
told me he was not sure he was able to help me any further. By this time, I had come across Whooshers.comand asked the neurologist if he would order an ultrasound of my carotid artery to check for anything vascular,
which he did. He ordered the test for my neck (not my head) but I thought it was better than nothing.
I found that doctors don’t like to request tests unless you
push and push - so that is what I started to do. I was on a mission to determine what was wrong and I was still feeling awful.
The ultrasound was completed in late March and came back normal. Discouraged again, as I knew that there was something wrong
but doctors were telling me that it was in my mind.
Funny thing was when I was getting the ultrasound, the technician asked why I was there and I told her about my whooshing.
She asked if I was anemic since she was and did get that whooshing sound when her levels were low. I told her that no one
had said I was but it made sense to me that that could be an issue since my thyroid was high but no one was willing to help
I then started down the
anemic path thinking that something with my thyroid issues may be causing my whooshing issues. I went back to my GP to push
for getting on thyroid medication. I was then told that I was having anxiety and he wanted me to take Lexapro to deal with
that first, before anything else. I did not go back to him after that.
It was at that time that a friend referred me to an endocrinologist to have my levels reviewed.
Why my GP never mentioned that there was a doctor who specialized in thyroid I don’t know, but I was willing to do anything
at this point.
I needed someone
to believe that I was having symptoms even if the test results for the most part were coming back "normal."I did not know how to get better and needed to find a sympathetic doctor who would really take the time to help me
figure out what was wrong.
went to see the endocrinologist at the end of April who looked at my blood work and said that I needed to be on thyroid meds
for sure. He did not understand why my GP was not willing to put me on thyroid since my levels were clearly an issue. He also
said that thyroid issues cause rapid blood flow, which may be why the whooshing sound I hear was high though he did say that
my thyroid issues were not the reason for the whooshing since it was not a common symptom of thyroid issues. He also told
me to not take Lexapro since I was not anxious or depressed and said that he finds that a lot of GPs prescribe anti-anxiety
medication when they do not know how to diagnosis or treat thyroid issues. He said that anxiety is a very common thyroid imbalance
issue and with what I have been through it made sense that I would have a bit of anxiety since I was not feeling well.
I was relieved that my thyroid was now being dealt with but was
still unclear about the whooshing. I did leave this doctor’s office feeling optimistic, which I had not done in
awhile. I left that day with a better outlook and knew I was on the right path. I started taking my thyroid meds the next
day and a lot of my symptoms subsided (dizziness and electrical feeling throughout my body), however the whooshing was still
there, just not as loud as before.
then continued on the path of working to figure out my whooshing. I found a new GP who agreed with the possibility of anemia
and found that my ferritin levels were low, which can cause a whooshing-like symptom. I was on iron supplements for 90 days
and my whooshing did improve a bit but was still there.
When I went back to check my ferritin levels and they came back within normal range, my new GP decided to
order an MRA since she agreed with me that this may in fact be something vascular since my “levels” did not eliminate
my whooshing symptoms. I was grateful that she was willing to work with me to find an answer.
I underwent my MRA test in August which came back abnormal
showing that my right cavernous carotid artery and the right supraclinoid ICA segment were approximately 50% narrowed, causing
obstruction in blood flow. It was bittersweet for me since artery narrowing is a scary finding, but at the same time
I was finally getting answers and tests were coming back with a finding.
I was not crazy!
Both my ENT and my new GP referred me to a neurosurgeon who then requested a cerebral angiogram to be completed.
I had this test done mid-August which came back confirming the finding. The results confirmed an approximate 70% narrowing
of the right cavernous carotid artery and that it suggests possible Moyamoya disease, a rare progressive cerebrovascular disorder
caused by blocked arteries at the base of the brain.
I have now been
referred to a vascular surgeon in LA who specializes in this type of finding and the neurosurgeon was able to get me in ASAP
for this to be reviewed and treatment options discussed.
I cannot believe that I finally have a diagnosis! I pushed and pushed and was finally able to find something.
I am optimistic about the outcome and really believe that I will have treatment and hopefully whooshing gone by the end of
this year at the latest.
More to follow
once I meet with the vascular surgeon, but I wanted to let everyone know that Whooshers.comdid give me the info I needed to continue to push these doctors in the direction of a diagnosis by insisting
on ordering tests. It took time, but I was finally able to get an answer after continuing to follow up and find doctors who
were willing to help.
up and know that there are doctors out there that WILL help. You may just need to keep pushing to find one.
Carrie, thank you for sharing
your story. A diagnosed cause of pulsatile tinnitus is just the first step, but it's a huge step. Good for you for being
your best advocate, and we look forwad to following your progress.
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
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