I thought I was going to have a stroke.
I thought I had dementia.
I thought I was going crazy.
No one could help me understand why I could hear my heart beating in my head constantly. Between the constant loud thumping in my head, accompanied by the whooshing sound of blood moving and the more muted drum beat of my eyelids blinking, I had a veritable band playing 24/7 in my skull.
And I was terrified as the noise crescendoed with each new year...until 2023 when a head CT and vestibular testing revealed I had the rare vestibular disorder, SSCD (or SCDS), which I was likely born with. Some SSCD patients never experience debilitating symptoms. I am not among them. My symptoms started with pulsatile tinnitus and have gradually worsened to include constant vertigo, vestibular migraines, dizziness and falling, brain fog, visual disturbances, derealization, and hearing loss. While SSCD won't kill me, it has brought me to my knees.
For this blog post, I will focus on the pulsatile tinnitus symptom, the constant sound of one's heartbeat ricocheting around one's head. I'll save the other symptoms for a future blog post.
Pulsatile tinnitus, unlike the more common form of tinnitus (which I also frequently experience), is characterized by a constant ringing or buzzing in the ears and manifests as a rhythmic pulsing, often in sync with one's heartbeat. This unique and perplexing condition affects one's hearing and profoundly impacts daily living. Pulsatile tinnitus turns what used to be moments of silence into periods filled with a persistent, uninvited rhythmic soundtrack.
For me, it impacts mental health, often contributing to anxiety and insomnia. Knowing WHY it happens to me has dramatically reduced my anxiety because I understand I am not dying, not having a stroke, or sliding into dementia. Insomnia, however, has been a little trickier to deal with. Sometimes at night, when I am feeling anxious, I think of Edgar Allan Poe's The Tell-tale Heart and how the narrator in the story descends into madness, and I wonder if I, too, will go mad.
Causes
Pulsatile tinnitus can be caused by changes in the blood flow in the vessels near the ear or by a reduction in the bone density that separates the ear from the brain, allowing normal blood flow sounds to become audible. Conditions such as high blood pressure, head or neck tumors, or anomalies in the blood vessels can contribute to its onset, making it crucial for individuals experiencing this symptom to seek medical advice for proper diagnosis and treatment.
The Emotional Toll
Living with this condition is not just about coping with a physical symptom; it's also about managing the emotional and psychological toll it takes. The constant sound can lead to anxiety, stress, and, in some cases, depression. The lack of silence can make concentration difficult, affect sleep patterns, and influence personal and social interactions.
Coping Mechanisms
Finding ways to cope with pulsatile tinnitus is essential for managing the condition. Some people find relief in masking the sound with background noise, such as white noise machines or fans, especially when trying to sleep. Others find that mindfulness and relaxation techniques, such as meditation or yoga, help reduce the stress and anxiety associated with the condition. Medical treatment for pulsatile tinnitus depends on its underlying cause. In my case, surgery (a craniotomy) in which a surgeon goes in through the skull and plugs the extra holes (third windows) I have between my ears' superior semicircular canals.
A Journey of Resilience
Living with pulsatile tinnitus is a journey of resilience. It's about learning to live with an internal rhythm you didn't choose. It's about finding peace amidst the noise and discovering ways to tune into the moments of joy and quiet life offers. Through support, understanding, and medical care, individuals with pulsatile tinnitus can lead fulfilling lives, proving that despite relentless challenges, there is hope and strength to be found.
When I first heard the phrase pulsatile tinnitus, I was unable to find any information that pointed this symptom toward a diagnosis of SSCD. My goal in sharing this post is to encourage people who have not been able to find answers about what is causing their pulsatile tinnitus to seek an evaluation from an ENT familiar with SSCD. Many primary care providers have never even heard of this disorder, only named in 1998. Find a specialist (a neurotologist would be preferred) who knows what SSCD is.
Do you deal with pulsatile tinnitus? I want to hear your experience!
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