Personal Stories – Sheila, age 70

We are starting a new series of personal stories of people’s experiences with Essential Tremor, generally including age of onset, symptoms, neurologist’s diagnosis, medicine prescribed, alternative therapies tried, how people respond to their ET, how ET affects them mentally and emotionally, coping, and family history of ET.   The individuals interviewed below are from ET support groups.

Sheila, age 70
Sheila’s tremor started with a couple of episodes while living in Korea around 2006. She went to the emergency room – they did an EEG but symptoms had gone away by the time the doctor saw her.  She remembers trying to sleep and feeling the tremor start, without knowing why.  Seems when she gets urinary tract infections, it triggers the tremor. If she gets busy in the morning and can’t find time to eat, the tremor gets better. She saw a neurologist for the first time in 2010, and Propranolol was prescribed. Besides Propranolol she has had other prescriptions but has taken nothing that she’s been comfortable with.  She gets angry about the tremors sometimes wondering, “why is this happening to me” and feels sorry for herself. Her hands started trembling first then her lip started trembling … emotions  such as those caused by relationship conflict are a trigger for a tremor episode. She takes Clonazapam, prescribed for depression she attributes to the tremor.

Less than a year ago she was diagnosed with Parkinson’s and started taking medicine for that. She also takes Zanax which was prescribed for anxiety related to the tremor, and it is the only medicine that really has helped her tremor. She feels she’s been around the mulberry bush several times with doctors trying to see if something will work.

None of her friends or family has acted adversely to her tremor.

Next week’s story – Charley

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

Other personal stories:

National Security Agency Visit

On September 12, 2013, Stephen Grill, M.D., Ph.D. and Fred Berko, Ph.D.,
visited the Headquarters of the National Security Agency at Fort Meade,
MD. The visit was at the invitation of Forrest Riddle, M.D., senior
physician in NSA’s Medical Center, a fully-accredited facility staffed by
four full-time physicians, more than 25 nurses, and additional medical
technicians, pharmacists, and support personnel.

Dr. Grill, a movement disorder specialist, presented an overview of the
history, symptoms, and treatments for three movement disorders: Essential
Tremor, Dystonia, and Parkinson’s Disease to more than 35 staff members of NSA’s medical center. This CME presentation was highly interactive and
informative, and was followed by Dr. Berko’s presentation on “the patient’s

It was heartwarming to the visitors to learn how NSA is a leader among
Federal government agencies in recruiting, and supplying accommodations as necessary to, persons with disabilities.

Fred Berko
Columbia Support Group Member

Octanoic Acid in alcohol responsive essential tremor – A randomized controlled study

There is no medication available that has been designed specifically for Essential Tremor. The National Institutes of Health studied One Octanol/ Octanoic Acid for about ten years before putting the study on hold in May 2012. As I participated in several stages of the study, I know it works and is safe. It is very important that this study be completed, and people with Essential Tremor finally have a drug designed for their condition.

Peter Muller

Octanoic Acid in alcohol responsive essential tremor – A randomized controlled study (pdf)