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Frequently Asked Questions
There are a number of things you can do to minimize the degree to which ET interferes with life and work. Here are a few practical suggestions:
- Become informed about your condition and learn as much as you can about living with ET.
- Instead of restricting your life because of what others may think, explain your condition simply and honestly when you meet new people.
- If your child has ET, you may want to talk to teachers in person about the neurological basis for symptoms.
- Find ways to reduce stress and learn some relaxation techniques.
- Avoid things that may worsen tremor, such as caffeine and certain prescription medications.
- Contact the IETF for an information packet or information about joining or starting a support group for ET.
Getting the Most Out of Doctors Visits
Work closely with your doctor to find the most effective treatment. Take an active role in your treatment. Discuss your symptoms and questions with your doctor. The more you know about ET and treatment, the easier it will be to adapt, minimizing the interference with your daily life. It is important to discuss expectations of treatment results, side effects and other issues such as employment.
Consumer Reports Best Buy Drugs is a free public education service from the nonprofit Consumers Union, publisher of Consumer Reports. Go to www.crbestbuydrugs.org to learn more about affordable drug treatment options to discuss with your physician. You'll also learn what you need to know about the effectiveness, safety, and cost of many widely used prescription drugs.
Essential tremor is due to abnormal communication between certain areas of the brain, including the cerebellum, thalamus and brain stem.
In the majority of people with ET, the tremor seems to be inherited as an autosomal dominant trait. This means that each child of a parent with ET has approximately a 50% chance of inheriting a gene that causes ET. However, not everyone who inherits a gene develops symptoms. Some people have ET and do not have a family history of tremor, suggesting the possibility of other causes. Researchers have already located two genes that predispose to ET and are currently trying to locate others. However, at this time, there is no generic test for ET. Identifying genes may allow scientists to find a cure.
Though ET may first appear at any age between childhood and old age, onset is rare before the age of 10. Most commonly, onset is after age 40, but it can occur in younger people. Men and women are affected equally, and in the majority of cases there is a family history of ET. Life expectancy is no different for people with ET.
No one can predict how much your tremor will worsen with time. The course of ET is variable and may be progressive over many decades.
Doctors who are trained to evaluate tremor can accurately diagnose ET on the basis of the symptoms and a neurological examination. So far, there are no specific blood, urine or other tests for ET. Your doctor may want to investigate other causes of tremor such as thyroid disease, caffeine excess or medication side effects. During your physical exam, your doctor will be gathering as much information as possible about your tremor. Here are some questions you may be asked:
- What body part is affected?
- How long have you had the tremor?
- Did it come on suddenly?
- What makes your tremor worse?
- What makes your tremor better?
- Do you drink a lot of caffeine-containing or alcoholic drinks?
- Do any family members have tremor?
- Have you ever had a head injury?
- Does alcohol temporarily reduce the tremor?
- Does the tremor worsen when you do certain tasks or when you're under emotional stress?
- Does the tremor disappear during sleep?
- What medications are you taking? Certain drugs may cause tremor, so it's a good idea to bring a list of the medications you are taking or the actual pill containers themselves.
A brain scan is not required to diagnose ET. Your doctor might order a magnetic resonance imaging (MRI) scan or a computerized axial tomography (CAT) scan if there is a suspicion of some other cause of tremor. ET does not have associated abnormality on routine scans.
Many things cause tremor, and not all tremors are ET. There are more than 20 kinds of tremors. For instance, excessive caffeine, alcohol withdrawal, problems with thyroid or copper metabolism or the use of certain medications may cause tremor. A major difference between ET and other tremor types is that in ET tremor is the only symptom, and muscle tone, strength and balance are not usually affected.
- Enhanced physiologic tremor
- Parkinson's disease
- Cerebellar tremor
- Dystonic tremor
- Tremor due to medications
Because tremor is a feature of so many conditions, ET can be mistaken for something else. Some people have both ET and another disorder that causes tremor. ET is most often confused with some of the conditions listed above, especially Parkinson's disease (PD). PD causes a tremor that occurs at rest, not action. It also causes progressive slowness, stiffness and loss of balance. Medications for PD do not help ET symptoms. Note that many prescriptions, over-the-counter and illicit drugs, as well as some herbal remedies, can cause or worsen tremor. Tell your doctor about all the medications you are taking.
If you have mild ET, you may not need treatment. There is no evidence that early treatment stops or slows the natural progression of ET symptoms. With adequate knowledge, many people learn ways to live well with ET. If possible, you should be taken off any medications that may be aggravating tremor.
If ET is interfering with your ability to work or perform daily tasks, or you find it socially disabling, you may want to consider available therapies. It is important to have realistic expectations for therapy. At present, there is no cure for ET. For the oral medications, a 50% reduction of tremor severity is considered good. The goals of treatment are to:
- Reduce tremor severity
- Improve ability to function
- Decrease social handicap
Achieving these goals can sometimes take time, so be patient. While almost two thirds of people with ET benefit from medical therapies, your doctor may have to try two or three different medicines before finding the one that works best for you.
The main medications used to treat ET are propranolol (Inderal) and primidone (Mysoline). Both can be quite effective.
Propranolol (Inderal)
Propranolol is in a class of drugs called beta-blockers. Propranolol has been used for many years, primarily for reducing high blood pressure. It is not clear exactly how it works in treating essential tremor. Other beta-blockers may also be used. Features of propranolol include the following.
- You may experience tremor reduction 1-2 hours after taking a single 10-40 mg dose of the short-acting formulation. This effect usually wears off in about 4 hours.
- Propranolol may be prescribed to be taken as needed, or on a daily basis. A once-daily long-acting preparation is available.
- 60% of people with ET are helped by propranolol. It is most effective against hand tremor and may be effective for tremor of the head, voice and tongue.
- Individual response is variable. Complete tremor reduction is rare.
- Side effects are usually mild and are more frequent at higher doses (more than 120 mg/day of propranolol). The main side effects are decreased pulse rate and blood pressure. Less common side effects are fatigue, depression, impotence, nausea, weight gain, rash and diarrhea. If you experience unpleasant side effects, be sure to tell your doctor. Often the dosage or drug can be changed.
- If you have heart failure, diabetes mellitus or asthma, talk to your general medical doctor prior to taking propranolol. Do not abruptly stop this medication without first consulting with your physician.
Primidone (Mysoline) Primidone is an epilepsy medicine that was unexpectedly found to reduce tremor. It is now used widely for tremor reduction. Some features of primidone are:
- Approximately 60% of people with ET are helped by primidone. Benefit usually persists for 24 hours for each dose.
- dizziness, fatigue, drowsiness and flu-like symptoms -- most of which subside after a couple of days. You can reduce the chance of these symptoms by starting with an extremely small dose at bedtime. If you experience more serious side effects, tell your doctor.
- One quarter of the 50 mg tablet (12.5 mg) or small amounts of the pediatric elixir may be appropriate as initial dose. Only branded Mysoline is available as a 50 mg tablet and pediatric suspension.
- Although primidone may have more initial side effects than propranolol, there are few long-term problems, and primidone may be used successfully for many years. Occasional dose adjustments may be needed.
Combination and other therapies
If your tremor is not well controlled by a beta-blocker or by primidone alone, you may experience better results when you take both medicines together. If combination therapy is not helpful, your doctor may then recommend one of the benzodiazepines such as clonazepam (Klonopin), diazepam (Valium), alprazolam (Xanax) or lorazepam (Ativan). The most common side effect is drowsiness. There is a risk of physical dependence and withdrawal. Although no scientific support is available, other drugs may be used.
Botulinum toxin injections
If medications fail, another therapy may be tried that involves injections of Botulinum toxin into muscles. Botulinum toxin injections have been useful in the treatment of some patients with head and voice tremors. The toxin must be placed into target muscles by a trained specialist, and repeat injections may be needed. Transient weakness of the injected muscles is a potential side effect. This treatment can be expensive, so check with your insurance provider regarding coverage.
If treatment with medications is not effective and ET is very disabling or is putting your livelihood at risk, your doctor may suggest a surgical technique, such as thalamotomy or thalamic stimulation (Activa tremor control therapy). Surgical procedures are expensive but may be beneficial.
Thalamotomy
This is a surgical procedure that involves making a small hole (the size of a dried pea) in a part of the brain called the thalamus. A surgery on one side of the brain produces its effect on the opposite side of the body. The surgery destroys the faulty circuit or brain cells that modulate tremor. At the present time, thalamotomy surgery on both sides of the brain is not recommended as there is an unacceptable risk of loss of speech or other problems.
Approximately 80% of patients have experienced improvement in tremor after this procedure. When effective, medications may be reduced or even discontinued. The procedure may be especially beneficial for people with severe hand, arm or leg tremor that does not respond to medication. Approximately 1 in 20 people suffers some complication from surgery, 1 in 100 people suffers stroke or death. You should discuss these issues with your neurologist and neurosurgeon.
Thalamic stimulation
Thalamic stimulation is an alternative to thalamotomy. It involves implanting an electrode (a fine wire) deep in the center of the brain. The electrode is connected to a stimulation device, similar to a pacemaker, which is placed under the skin below the collarbone. By sending electrical currents through the electrode, you can interrupt communication between tremor cells. Tremor reduction occurs within seconds of activation and can be dramatic. Significant or complete tremor reduction occurred in approximately 80% of people with this procedure. Tremor medications can often be reduced or even stopped.
The main advantages of this procedure are that implantation on both sides of the brain is possible, the device can be adjusted for optimal effect, and it may be removed, which allows you to keep your options open in case new therapies develop. The risks are similar to thalamotomy. While the surgery is expensive, the procedure and device are FDA-approved and are covered by most insurance providers. 
Though there is no evidence that so-called "alternative therapies" are helpful for ET, people have tried a variety of treatments. No good scientific studies are available to encourage the use of alternative therapies. Always talk to your doctor before starting any alternative therapies. While some herbs that induce relaxation may be helpful, others, such as a Chinese herb called ma huang, can worsen tremor. Many people have tried acupuncture, hypnosis and massage therapy. People whose tremor worsens with stress or anxiety may find biofeedback helpful. Others have found physical and occupational therapy to be helpful in terms of providing suggestions for using wrist weights, plate guards and other adaptive devices. These devices can provide considerable benefit in activities of daily living.
Tremor severity may fluctuate during pregnancy and after delivery. You should discuss the use of ET medications with your physician before getting pregnant, as some medications put the developing baby at risk.
Adults with ET often notice that consumption of alcohol reduces their tremors for 1-2 hours. While it is true that alcohol can temporarily reduce tremor, it may not be an appropriate form of "treatment." Use of alcohol to reduce tremor should be discussed with your physician.
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Research Studies
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Now Recruiting for NIH 1-Octanol Study
The National Institutes of Health (NIH) is in need of 20 volunteers who have ET in their arms to participate in studies of 1-Octanol. Participants need to be otherwise healthy. The study will involve a screening visit and a 4-day hospital admission. NIH will pay for all travel-related expenses. For more information go to http://patientinfo.ninds.nih.gov/Tremor.aspx
Click here for details.
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Trace R&D Center, University of Wisconsin-Madison
The Trace Center is a research and development center at the University of Wisconsin-Madison. We are looking for individuals who have movement disorders of their arms or hands to participate in a study for evaluating usability of information technology such as hand held computers and public kiosks. You will be asked to visit Trace on two different occasions. You will be compensated at a rate of $15.00/hour and will receive a $50 bonus for completing both sessions. You will also be paid for transportation costs incurred traveling to or from study location (bus fare, car mileage at 33 cents per mile or local taxi service if required). Travel time is included in the hourly rate.
If you are interested and would like to help us in making information technology devices that are more accessible, please contact Carolyn Shaffer.
Call 608-263-1156 or email for details.
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Now Recruiting for Research Study
QUEST Research Institute is enrolling people with moderate to severe essential tremor (ET) for an investigational research study at their metro Detroit site. This is a 2 week study assessing an investigational drug for ET. Interested people with moderate to severe essential tremor, please call 888-QUEST-24 or visit www.questri.com. If you qualify ot participate in this study, you will have to go through study-related procedurs. Compensation for your time and travel will apply.
Call 888-QUEST-24 or click here for details.
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ET Community Events
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Northwestern Memorial Hospital Essential Tremor Symposium
Northwestern Memorial Hospital's Movment Disorders Center invites you a free symposium on Friday, May 23rd from 10 a.m. until noon with presentations by Dr. Aleksandar Videnovic, Dr. Joshua Rosenow, and Caren Jeskey. Location for the event is the Third Floor of 251 East Huron Street, Chicago. For more information, call 312-926-8400.
Call 312-926-8400 for details.
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Support Groups
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May 12 - Baltimore Area ET Support Group
You are invited to the Baltimore, MD Area ET Support Group monthly meeting. We meet the second Monday of each month (with the exception of December) from 6:00 p.m. to 7:00 p.m. Join us for our next meeting on May 12, 2008 at the Parkinson's and Movement Disorders Center of Maryland, 8180 Lark Brown Road, Suite 101, Elkridge, MD 21075. For more information, contact Alle Cyhan at 410-303-7660 or artsyalle@gmail.com.
Call 410-303-7660 or email for details.
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May 14 - Lynchburg ET Support Group
You are invited to the Lynchburg VA ET Support Group meeting on Wednesday, May 14th beginning at 2:00 p.m. Our meeting is held in the Craft Room located in the Main Building of the Summit at Wyndhurst, 1400 Enterprise Drive, Lynchburg. For more information, contact Norma Jean McGhee at 434-525-4160 or email, cmcghee2@verizon.net.
Call 434-525-4160 or email for details.
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May 15 - Munster, IN ET Support Group
You are invited to the Munster, Indiana ET Support Group meeting on Wednesday, May 15th from 6:30 to 8:00 p.m. We will meet at the Community Hospital Fitness Pointe, 9950 Calumet Avenue, Munster, Indian 46321. For more information, contact Donn Davidson, 219-712-7063 or email, donn@computerprofessionals.com.
Call 219-702-7063 or email for details.
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May 15 - Wichita KS ET Support Group
The Wichita, KS Area ET Support Group invites you to our monthly meeting on Thursday, May 15th at 7:00 p.m. Dr. Katherine Widnell, neurologist and Movement Disorders Specialist iw our guest speaker. Please come to the Cafeteria of Wesley Rehabilitation Hospital, 8338 West 13th Street, Wichita 67212. For more information, contact Rita Sevart, 316-796-0769 or sevartr@newmanu.edu; Marvin Daniels, 316-260-7958 or jo.daniels@cox.net; or, Jacque Thompson, 316-722-6693 or thompjb@sbcglobal.net.
Call 316-796-0769 or email for details.
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May 16 - Roanoke VA ET Support Group
The Roanoke, VA Daytime ET Support Group invites you to its monthly meeting held on the third Friday of each month beginning at 10 a.m. We meet in the church parlor of the Grandin Court Baptist Church, 2660 Brambleton Ave. SW, Roanoke. For more information, contact Mike Hopkins, 540-721-2087 or email, mhop856@aol.com.
Call 540-721-2087 or email for details.
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May 17 - San Ramon ET Support Group
You are invited to attend the Essential Tremor Support Group Meeting on the 3rd Saturday of each month in the Blackhawk A & B conference room of the San Ramon Regional Medical Center, 6001 Norris Canyon Road, San Ramon, CA 94583. Park in south parking lot near MRI and enter through the glass doors marked "Birthing Ctr". For more information contact Sharon Alexander, 925-487-5706 or email, galexplor@comcast.net.
Call 925-487-5706 or email for details.
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May 17 - Albuquerque ET Support Group
You are invited to join the Albuquerque NM ET Support Group for its regular monthly meeting held the 3rd Saturday of each month at 10:00 a.m. in the Aspen Room of the The Palo Duro Senior Center, 5221 Palo Duro NE, Albuquerque. The center is located one block north of Comanche, east of San Mateo. For more information contact Winnifred at 505-345-3003.
Call 505-345-3003 or email for details.
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May 17 - Los Angeles Area ET Support Group
The Los Angeles Area Support Group invites you to our next meeting on Saturday, May 17th from 10 a.m. to 12 noon featuring our guest speaker, Dr. Arnulfo Quesad, Research Scientist, Assisant Research Professor of Neurobiology. The meeting will be in Conference Room 3232 in the East Wing 3rd Floor of Building 500 of the VA Hospital, 405 Freeway and Wilshire Blvd. For more information contact Bob, 310-276-6875 or bob@kribs.com; or Alta, 818-700-1876 or alta.rudomin@sbcglobal.net.
Call 310-276-6875 or email for details.
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May 18 - Cincinnati/Dayton ET Support Group
The Cincy/Dayton ET Support Group invites you to hear Tom Rinsky, pharmacist speak on medications prescribed for ET on Sunday, May 18th at 2:00 p.m. We'll meet in Dining Room 2 of Sycamore Hospital on Leiter Road in Miamisburg. For more information contact Norma in Dayton at 937-433-0153, normad@woh.rr.com or Arlene in Cincinnati at 513-791-5546, arlenerosen@gmail.com.
Call 937-433-0153 or email for details.
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May 19 - Lynchburg ET Support Group
You are invited to the Lynchburg VA ET Support Group meeting on Monday, May 19th beginning at 6:30 p.m. Our meeting is held at the Fort Avenue Church of Christ, 1132 Sandusky Drive, Lynchburg. For more information, contact Terry Houck at 434-525-6086 or email, terryhouck@webtv.net.
Call 434-525-6086 or email for details.
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May 22 - Richmond VA ET Support Group Meeting
Please join us for a presentation by Lynn A. Klanchar RN, MS, Associate Director of Education, PADRECC Southeast, McGuire VAMC, on Thursday, May 22nd at 6:30 p.m. at the Tuckhoe Library, 1901 Starling Drive, Richmond 23229. For more information, contact Diana Campbell by phone, 804-556-2345 or email, ET.RichmondVA@yahoo.com.
Call 804-556-2345 or email for details.
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May 22 - Roanoke VA ET Support Group
The Roanoke, VA Evening ET Support Group invites you to its monthly meeting held on the third Thursday of each month beginning at 7 p.m. We meet in the offices of the Roanoke Neurological Associates,4431 Starkey Road, Roanoke. For more information, contact Mike Hopkins, 540-721-2087 or email, mhop856@aol.com.
Call 540-721-2087 or email for details.
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May 22 - Falls Church, VA ET Support Group Meeting
You are invited to attend the next meeting of the NEW Washington DC Area ET Support Group on Thursday, May 22nd beginning at 7 p.m. Our featured speaker is Dr. Fatta Nahab with the NIH, National Institute of Neurological Disorders and Storke. We meet at the Thomas Jefferson Community Library in Falls Church, Virginia. For more information, contact Karen at 703-243-1969 or email, kschroeder06@comcast.net.
Call 703-243-1969 or email for details.
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May 27 - West Suburban ET Support Group Meeting
You are invited to the next meeting of the West Suburban Chicago ET Support Group on Tuesday, May 27th. For more information, contact Doug Ward by phone, 630-790-1342 or email, doruwa2@aol.com.
Call 630-790-1342 or email for details.
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May 31 - Atlanta Area ET Support Group
The Atlanta Area Support Group invites you to its next meeting, Saturday, May 31, 2008 from 10:30 a.m. to 12:00 noon. Please come to the Third Floor Conference Room of the Wesley Woods Health Center, 1841 Clifton Road, Atlanta 30329. For more information, contact Lynn Ross at 404-728-6300 or slross@emory.edu.
Call 404-728-6300 or email for details.
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June 1 - Columbus Ohio Support Group
You are invited to attend the March meeting of the Columbus, Ohio ET Support Group. We will meet Sunday, June 1st beginning at 2 p.m. in the Multipurpose Room of Hilliard United Methodist Church, located on the southwest corner of the intersection of Scioto Darby Road and Main Streey (Hilliard-Rome Road) in Hillard, Ohio. Please enter through the glass door at the rear of the church building on the southeast side; a sign will be posted. For more information, contact Dave Willaimson, 614-921-8711 or email, docwmson@sbcglobal.net.
Call 614-921-8711 or email for details.
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June 3 - Stanford CA ET Support Group
Please join us for the Stanford CA ET Support Group meeting on Tuesday, June 3, 2008 beginning at 6:30 p.m. at Standford Hospital, main floor CRC, conference room # HH141. For more information contact Lois Sumner, 650-328-2998.
Call 650-328-2998 or email for details.
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June 3 – San Gabriel CA ET Support Group
The San Gabriel ET Support Group invites you to attend our monthly meeting on the 1st Tuesday of each month from 6:00 p.m. to 7:00 p.m. We meet in the North/South Conference Room of the Wingate Building of Huntington Memorial Hospital, 100 West California Boulevard, Pasadena 91105. For more information, contact Jennifer Birch, phone 626-535-9552 or email, jennifer@pacifichillsneurosurgery.com.
Call 626-535-9552 or email for details.
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June 4 - Daytona Beach FL ET Support Group
The Daytona Beach Support Group invites you to thier next meeting on Wednesday, June 4th from 3:00 to 4:00 p.m. with a special presentation by Stacy Beyer, Occupational Therapist. We met a the Ormond Beach Public Library, 30 South Beach Street (library phone number, 386-676-4191). Generous free parkig availble behind the library. For more information contact, Lloyd Dunham, 386-761-6509 or email, dunham2@bellsouth.net.
Call 386-761-6509 or email for details.
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June 7 - Saginaw, MI Support Group
You are invited to attend the April meeting of the ET Support Group of Northeastern Michigan on Sat., June 7, 2008 at 10:00 a.m. We will meet in the first floor conference room of St. Mary's Ambulatory Care Center, 4955 Towne Centre, Saginaw, MI 48604. Your family members and friends are welcome to come along. For more information, contact Carol at 989-799-5413.
Call 989-799-5413 or email for details.
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June 10 - NEW Roswell, GA ET Support Group
Please join us at the introductory meeting for the NEW Roswell, GA ET Support Group on Tuesday, June 10, 2008 beginning at 1:30 p.m. We will meet at the Roswell Senior Center, 1250 Roswell Road, Roswell. For more information, contact Wayne at 770-552-2760 or wjdubner@comcast.net.
Call 770-552-2760 or email for details.
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Sept 4 - Asheville NC Area ET Suppot Group
The Asheville Area ET Support Group invites you to their next meeting. We meet the first Thursday of each month from September through May beggining at 6 p.m. in the Seymour Auditorium at Care Partners off Sweeten Creek Road in Asheville, NC. Our next meeting is Sept. 4, 2008. For more information contact Howard Henze, 828-687-2356 or bchhenze@bellsouth.net.
Call 828-687-2356 or email for details.
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