This week, February 1-7, is Tinnitus Awareness week. Many think of Tinnitus as a silly ringing that some people hear. Often it isn’t taken very seriously, even when reported to a doctor. A rare form called Pulsatile Tinnitus is even more misunderstood. In this week’s post, I am using A Chronic Voice’s February Writing Prompts of Defining, Allocating, Uniting, Saving, and Educating to bring awareness to this unusual and possibly life-threatening condition.
About 11-years ago, after an incident involving my neck, I began to hear my heartbeat in my ears. In 2010, I was involved in a hot yoga class that I loved. Unfortunately, I was pushing myself to do more than I should by holding a headstand longer than I was physically able to remain in control. I ended up coming down fast and felt a bit of a pull in my neck. A day later, I had severe pain, the type you get with a pinched nerve, starting at the right side of my neck, going down the shoulder, and into my arm. It drove me insane.
After seeing my doctor and starting physical therapy, I was told that they didn’t think that the pain I was experiencing had anything to do with the headstand I had done. After about a week (a few days off from work), the pain subsided. However, one night, on my drive home from physical therapy, I remember distinctly hearing and almost feeling for the first time my heart beat just behind the earlobe of both ears.
An Often Ignored Condition
Throughout the years, I mentioned to my doctors about this ongoing pulsating thrumming in my ears. They listened to my neck and behind my ears, only to shrug and say I was fine. I definitely got the sense that this was a weird comment on my part and they seemed to suggest it was all in my imagination.Tweet
Throughout the years, I mentioned to my doctors about this ongoing pulsating thrumming in my ears. They listened to my neck and behind my ears, only to shrug and say I was fine. I definitely got the sense that this was a weird comment on my part and they seemed to suggest it was all in my imagination.
About a year ago, in a Facebook Fibromyalgia group that I belong to, the topic of tinnitus came up. I described what I hear (a whoosh, whoosh, whoosh) that sounds like the heartbeat of a baby found during an ultrasound. Finally, someone named what it was: Pulsatile Tinnitus. This discovery that there was a name, lead me to researching more about it.
Defining the Difference Between Tinnitus and Pulsatile Tinnitus
Pulsatile tinnitus is more uncommon; only occurring in 10% of all tinnitus patients according to Penn Medicine. The patient hears rhythmic whooshing, swooshing, pulsing, pulsating, clicking, or other sound that is in sync with their heartbeat.Tweet
What is Pulsatile Tinnitus (PT)? This is a rare form of tinnitus (Some even say it isn’t tinnitus. *see Whooshers.com). However, like normal tinnitus, PT is sound not coming from an external source that is heard in one or both ears. Traditional tinnitus is the perception of ringing, buzzing, clicking, hissing, or humming that tends to be constant and can be of varying tones and volume. This type of tinnitus is fairly common with 15 to 20 percent of people experiencing it to some degree. All tinnitus is not a disease, but a symptom of something wrong in the auditory system, such as: earwax blockage, hearing loss, infection, Meniere’s disease, thyroid abnormalities, hormone changes in women, and even a brain tumor.
Pulsatile Tinnitus is a Rare Form of Tinnitus
Yet, pulsatile tinnitus is more uncommon; only occurring in 10% of all tinnitus patients according to Penn Medicine. The patient hears rhythmic whooshing, swooshing, pulsing, pulsating, clicking, or other sound that is in sync with their heartbeat. PT always has a physical cause and while they can often be fairly benign, others potentially life-threatening. This kind of tinnitus is most often caused by problems with blood flow in the head or neck. The condition also may be caused by brain tumors or abnormalities in brain structure. This symptom is not one that should be passed over as something to just “live with” and warrants a visit to an ENT and diagnostic testing.
The pulsating sound may come and go or it may be constant. For many patients with PT, the noise is loud and interfere with their daily lives. For some, it can cause major loss of sleep, anxiety, and depression.
The bruit I experience gets louder when I’m going to sleep. It can be somewhat distracting, although, I’ve learned to mostly tune it out. If I wear earbuds, I notice the noise getting louder. If I pop my ears, I tend to lessen the volume, but I don’t ever make it silent. Some companion symptoms I’ve read in PT research and articles are concerning to me: feeling that the head is full of cotton, unable to think clearly and focus are issues I have that I have attributed to Fibromyalgia. However, I don’t have issues of severe headache that many patients report or much in the way of dizziness.
What is Pulsatile Tinnitus?
Being tinnitus is a harbinger of another condition, it’s important to educate yourself as to what possible other conditions could be the cause. Once I found out the name for what I was experiencing and read about the causes, I decided to push having it checked out by an ENT.Tweet
Being tinnitus is a harbinger of another condition, it’s important to educate yourself as to what possible other conditions could be the cause. Once I found out the name for what I was experiencing and read about the causes, I decided to push having it checked out by an ENT.
At my consultation visit, the hearing test showed that I had “the hearing of a teenager” and no noticable issues with pressure. I did have some wax build up in my left ear, but other than that, there wasn’t anything that indicated a problem. The ENT couldn’t hear my PT by using a stethoscope. This, I think, was the main reason he seemed to think it was more related to stress and Fibromyalgia hypersensitivity (which left me very frustrated). *See my post: Dealing With a New Diagnosis for more detail about that appointment. However, being I described the heartbeat whooshing sound, the ENT did set up a CAT scan with contrast of my head and neck. Surprisingly, the results showed that I have Fibromuscular Dysplasia (FMD) in both the left and right inner carotid arteries.
Fibromuscular Dysplasia is a Symptom of Pulsatile Tinnitus
Pulsatile tinnitus is one of the symptoms of having FMD in the carotid arteries. However, doctors aren’t exactly sure what the connection is. Arterial walls are formed by three layers. The middle layer, in an artery with FMD, grows wonky. This growth causes either a pearl-string-of-beads effect (multifocal) or in a single narrowing, barrel-like form (focal). I have Multifocal FMD in both the inner carotid arteries, causing twists and turns in those segments. This could possibly be the reason for the bruit.
Is Pulsatile Tinnitus Life Threatening?
Pulsatile tinnitus is a less understood condition. Often, as shown through story after story on the Whoosers.com site, there aren’t immediate findings of its presence even in tests such as MRIs. But once again, this is a time where caution and self-advocacy are needed. Many times, those reading these tests aren’t educated on PT and miss important signs.Tweet
Pulsatile tinnitus is a less understood condition. Often, as shown through story after story on the Whoosers.com site, there aren’t immediate findings of its presence even in tests such as MRIs. But once again, this is a time where caution and self-advocacy are needed. Many times, those reading these tests aren’t educated on PT and miss important signs.
This was the case of Ivelisse Torres. One September night in 2018, she woke up with a severe headache, neck pain, shoulder pain, and hearing of rhythmic whooshing in her right ear. She did go to urgent care who noted she had a bulging eardrum. From there she saw a few audiology specialists who found that she had interregnum hypertension. Next, Ivelisse was referred to a neurologist. Three “normal” MRIs later, she was told that there wasn’t anything could be done. The intense presence of the whooshing was causing her to lose sleep.
Social Media Groups Can Save Lives
The Facebook Community (Pulsatile Tinnitus: Whooshers Unite!) saved Torres’s life. Many fellow Whoosers suggested that she get her MRI tests and circulate them to PT specialists (generally found in big city medical centers). From there, she was able to see a specialist at Weill Cornell in NY who ordered an MRV, which found that she had a venous aneurysm which was sitting on her right eardrum. Her Pulsatile Tinnitus was life threatening. After undergoing surgery, she now has two stints and 14 coils in her brain, repairing the aneurysm and alleviating the Pulsatile Tinnitus.
Surgery Needed to Eliminate Life Threatening Pulsatile Tinnitus Symptom
Uniting Those Impacted by Pulsatile Tinnitus
The fact that there isn’t one are of the health system that takes responsibility for Putlsatile Tinnitus, meaning no one group of doctors studies it. Due to PT being a rare and highly individualized condition, it has been essential that Wooshers unite through quality forums like Wooshers.com to share stories, resources, and support. This provides both patients and the medical community important resources and information.
The Whoosers website offers patients and the medical personnel dedicated to treating them:
- Links to articles about other whooshers and their paths toward proper diagnosis.
- Links to medical Web sites with information about pulsatile tinnitus and explanations of possible causes.
- Tips from other whooshers about how they cope with the constant heartbeat sound, day and night.
- Support from people who understand what you’re going through.
- Through the non-profit Pulsatile Tinnitus Foundation, they raise money to further research, resources, and support.
In 2016, the Pulsatile Tinnitus Foundation worked to bring about separate diagnostic codes that help patients get doctor visits, tests, and treatments covered by their insurance.
A Very Informative Webinar put on by PTF with Leading Pulsatile Tinnitus Specialists
Allotting the Importance of the PT Symptom
While the pulsatile tinnitus which I experience isn’t greatly impacting my life, I still am concerned about the mention of “cotton head” and the difficulty of focus which does impact me regularly. I’ve decided to contact my FMD specialist to double check his thinking and seek the thoughts of those in the Whooshers community to see if I should send my CAT scan and MRI images for a review by a PT specialist. I don’t think there are any in my state, though, so that would be a big ordeal. “There’s little consensus at the moment on which tests are suitable for which populations,” Dr. Brant says, Penn Medicine. “Which complicates things somewhat, because we need to both ensure we’re not missing anything and that we’re not over-testing.”
If you are experiencing pulsatile tinnitus, it definitely is something to be taken seriously and to get a full investigation into the cause. Know that many doctors don’t know much about it, so you may want to push to see a PT specialist.
Pulsatile Tinnitus Resources:
- Penn Medicine Pulsatile Tinnitus Department
- University of California: San Francisco Pulsatile Tinnitus Department
- Weill Cornell Brain and Spine Center: Pulsatile Tinnitus Specialists
- Boston Medical Center: Pulsatile Tinnitus Department
- American Tinnitus Association: Providers
- British Tinnitus Association
- Tinnitus and Fibromyalgia
- Top 10 Pulsatile Tips for Doctors written by doctors (PDF for Download)