Living with Essential Tremor

People often confuse it with Parkinson’s because of the shaking. It’s a benign condition that affects one’s self esteem and can even cause depression. 

People with essential tremor (ET) usually don’t talk about it. Most try their best to hide it — and while it resembles Parkinson’s disease because of the shakiness that occurs in your body’s hands, head, voice, legs, or trunk —it’s not. 

Also known as familial tremor, benign tremor, or hereditary tremor, essential tremor is a neurological condition that affects 10 million Americans and many millions more worldwide. Those who have it are often asked why are they so nervous?

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“People see my hands shaking, and they think I’m scared,” said Mary, who works in a public relations company in New York and doesn’t want to share her last name. “I often lead meetings and take people out to lunch for work. Sometimes, it’s worse than others. When I’m hosting a meeting, I have an assistant operate my PowerPoint presentation. At lunch, I order sandwiches and always hold a glass with two hands.”

Eating soup is out. Even holding utensils can be difficult. “It’s embarrassing,” she said. “I have one friend who also has it. Her head shakes, and that’s worse because people always think she’s so nervous. At least I can hide mine for now.”

Essential tremor usually occurs in some people in their mid-to-late 40s. Children and even infants can have ET. For young kids, the stigma is worse. “People want to know why I’m shaking all the time,” said Nathan, age 11. On some days he has trouble getting dressed. “Things like buttons and snaps are hard to open and close,” he said. “And my handwriting is impossible to read.”

The advice they get from friends, teachers, co-workers, and family, make matters worse. They’ve been told to cut back on caffeine, slow down, take deep breaths, relax, and stop worrying. “Nerves and anxiety can increase any tremor, but that’s not an underlying cause,” said Lisa Coohill, MD, neurologist at Summit Medical Group in Berkeley Heights, N.J.

Some people notice that the tremors stop if they have drink alcohol. Coohill doesn’t advise taking up drinking. “It’s unfortunate that tremors can interfere with certain activities,” she says. “There’s no definitive known cause of ET and no direct treatment.”

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For those with slight tremors, they can purchase weighted, glasses, pens, and utensils. “The extra weight helps people not shake as much,” Coohill said. There are also wrist weights.

That works for some. However, when tremors interfere with work, eating, dressing, and other daily functions, she recommends medications that are not designed specifically for essential tremor, but are prescribed for it. Primidone (Mysoline) is a seizure medicine. Also prescribed is a beta blocker called Propranolol. 

If you have essential tremor, you can discuss taking these medications with your doctor. Be aware that all have side effects. Unfortunately, these medications are not a cure. “They may help,” Coohill said. 

She also recommends that you get a good night’s sleep and limit caffeine. “A lack of sleep or too much caffeine doesn’t cause ET,” she said. “They can exacerbate the tremors.”

When the medications don’t work, surgical options are available. Candidates for surgery are patients who had no change on medication and have trouble performing daily activities, such as eating, drinking, writing, and dressing. Coohill had a patient that did well with deep brain stimulation; that’s where electrodes are placed in the thalamus during surgery. A small wire is connected under the skin near the collarbone and acts like a sort of pacemaker. This device sends mild electrical currents to stop the tremors. 

Other more radical procedures include stereotactic thalamotomy, surgery that destroys part of the thalamus that causes tremors, and gamma knife radiosurgical thalamotomy, a type of surgery that uses radiation to destroy cells that cause ET. Both treatments have side effects. 

To learn more about ET and treatments for it, visit the International Essential Tremor Foundation. The site has lots of information, videos, and support groups for people with essential tremor. 

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