What My Essential Tremor Diagnosis Taught Me About Myself
Key takeaways:
Brian Gregg was diagnosed with essential tremor after years of subtle symptoms.
Living with the condition involves dealing with daily annoyances and planning for potential progression.
While there’s no cure, Brian is exploring management strategies and staying optimistic about his future.
My Journey is a series of personal essays about what it’s like to cope with a medical condition.
A coworker first pointed it out about 7 years ago.
“Why are you shaking your head at me?” she asked.
“I’m not,” I replied.
She insisted, saying it was subtle but noticeable. I brushed it off, thinking she was imagining things, since I couldn’t feel any shaking myself.
Over time, my wife and a few others mentioned the same thing. But because I didn’t notice it, I didn’t worry.
Earlier this year, that changed. I gradually became aware that my head does shake, very slightly. I especially notice when I’m up and moving and then sit down. When the rest of my body stops, I feel my head continue to shake. It is nearly imperceptible, but I frequently notice it and try to stop it.
Driving provided another clue. My wife’s new car’s driver monitoring system frequently flagged me for “unsteady driving.” This happened even when I held the steering wheel steady. My wife said this never happens when she drives.
These two factors made me fear that I might have Parkinson’s disease. I scheduled an appointment with a neurologist.
Essential tremor is more common than Parkinson’s
After a series of tests, my neurologist diagnosed me with an essential tremor. It’s a neurological condition that causes rhythmic shaking in the head, hands, voice, or other parts of the body.
What are the main symptoms of essential tremor? Here’s an overview of the condition’s involuntary shaking movements.
What are the treatment options? Explore treatments and medications for essential tremor in this detailed guide.
What’s it like to live with it? Read one woman’s experience with essential tremor and how she manages the condition.
The International Essential Tremor Foundation estimates that 7 million to 10 million Americans have essential tremor. It is the most common movement disorder and is far more prevalent than Parkinson’s disease.
How is essential tremor different from Parkinson’s?
• Essential tremor occurs during movement, while Parkinson’s tremors usually happen at rest.
• Essential tremor typically occurs on both sides of the body, while Parkinson’s often affects one side more than the other.
• Parkinson’s usually develops after age 60, while essential tremor can appear earlier.
Essential tremor often goes undiagnosed, especially when symptoms are mild like mine. It’s sometimes mistaken for Parkinson’s disease, which affects about 1 million Americans. However, Parkinson’s causes tremors at rest and usually develops after age 60. Essential tremor occurs during movement and is often diagnosed in middle age.
Thinking back to my coworker’s observation, I’ve likely had my tremor since I was age 50 or younger.
About 5% of people older than 65 experience an essential tremor. But that number goes up as people age.
How my neurologist diagnosed my essential tremor
My neurologist asked about my medical history and performed a series of tests.
She performed a manual muscle resistance test, where I pushed against her resistance and she pushed against mine.
She had me take an eye movement tracking test, in which I followed her moving finger with my eyes.
She checked my balance in several ways, including asking me to walk a straight line.
Finally, she had me complete cognitive tasks, such as reciting the months of the year backward and counting backward from 100 by fives.
She only noticed the tremor in my head. But because of my experience with the car monitoring system, I suspect it might also affect my hands. Like my head tremor years ago, it might still be too subtle for me — or even a trained eye — to fully notice.
What it feels like to have an essential tremor
There is no cure for essential tremor. It is not life-threatening, but it can worsen over time and become debilitating for some people.
For me, it’s annoying. My neck feels too weak to hold my head steady. If I concentrate, I can hold it still. But the tremor is so slight, I’m not even sure of that. It could be my hopeful imagination.
The shake feels like a shiver localized in my neck, mostly on the left side. At times, it forces me to tense up. I also notice it much more now than I did earlier in the year, raising fears that it may be getting worse.
People notice my head shaking because close friends and family have mentioned it. Outside of those circles, it hasn’t been brought up, and I haven’t needed to explain it.
Interestingly, my research revealed connections between essential tremor and trouble with balance, smell, and hearing. Those all resonate with me. It is a running family joke that I can’t smell anything, and I often need things repeated.
I discussed causes and treatments with my neurologist. She said essential tremor often runs in families. But I don’t remember anyone in my family with a tremor, and my older relatives don’t either.
Essential tremor is often accompanied by a mild degeneration of the cerebellum, a part of the brain that controls movement. While the symptoms can remain mild, there is a decent chance the tremor will get worse as I get older. My neurologist says some people become unable to write. Or their voice quivers so much that it affects their ability to communicate.
Looking ahead, my best treatment tool is hope
Since my tremor is mild, I’ve decided to forgo medication or therapy until it interferes with my daily life. But I’m exploring my treatment options. Here’s what I’ve found.
Medications
Beta blockers, such as propranolol, are the most popular treatment and reduce tremor intensity.
Anticonvulsants, such as primidone, are also frequently prescribed to reduce tremors. Both beta blockers and anticonvulsants have side effects, such as lightheadedness, nausea, and fatigue. And some are not appropriate for people with asthma, of which I have a touch.
In some cases, medications such as alprazolam, clonazepam, gabapentin, olanzapine, and clozapine are prescribed, though they are less commonly used.
Therapies
Physical therapy improves coordination and balance.
Occupational therapy helps with performing daily tasks like writing and dressing.
Advanced options
Deep brain stimulation is a surgical procedure that reduces tremors by delivering electrical impulses to targeted brain areas.
Tremor-cancellation devices are tools designed to stabilize hand movements.
Adaptive equipment can help people with everyday tasks such as writing and dressing.
Lifestyle changes
I’ve also researched what I can do on my own to help control the tremor. Avoiding stress, caffeine, and low blood sugar are at the top of the list. Some people who have an essential tremor recommend occasionally drinking a small glass of wine or alcohol, exercising, and staying hydrated to help control the tremors.
Some of those will be easier than others for me, but all will remain priorities as I navigate this condition. Also, because there is a cognitive component to this disease, I plan to continue my daily tradition of brain teasers to keep my mind sharp.
My best tool is hope. If my tremor remains at its current stage, it is merely an annoyance. I can live with that.
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