Online Health Chat with Darlene A. Lobel, MD

March 14, 2016

Description

Many people have experienced shaky hands, especially at times of high stress or anxiety. But for five million Americans, involuntary shaking — or essential tremor — is a constant problem. Essential tremor is an uncontrollable shaking of the muscles, usually upon movement. It can occur at any time, but commonly begins at middle age. While the cause of essential tremor remains unknown, a family history exists in about half of cases. Essential tremor does not affect life expectancy, but it can become disabling for many common activities, such as writing and eating. Medical treatment can reduce essential tremor in many patients. A type of surgical treatment known as deep brain stimulation (DBS) is considered for people with tremor who have not been helped by medical therapies.


About the Speakers

Darlene A. Lobel, MD, is a staff neurosurgeon in the Center for Neurological Restoration in the Neurological Institute and an associate professor of surgery at the Cleveland Clinic Lerner College of Medicine who also holds joint appointments in the Department of Biomedical Engineering and in the Gamma Knife Center. Dr. Lobel performs deep brain stimulation surgery for patients with Parkinson's disease, tremor, dystonia and psychiatric disorders, as well as procedures for patients with intractable pain syndromes and spasticity. She also performs stereotactic biopsy and resection of brain tumors as well as gamma knife radiosurgery for tumors and movement disorders.

In 2011, Dr. Lobel was invited to work in Grenoble, France with Dr. Alim-Louis Benabid, the founder of modern day deep brain stimulation for treatment of Parkinson's disease. She also worked with Dr. Benabid on the development of a brain-computer interface (BCI) system for patients with traumatic spinal cord injury.

Dr. Lobel has demonstrated her dedication to clinical expertise, research pursuits and education. She has made major contributions to the medical and biomedical communities. Dr. Lobel is an internationally acclaimed speaker. She has served as co-investigator and consultant in clinical trials in the US and in France and has authored several publications, including peer-reviewed manuscripts and book chapters. Her expertise is widely sought after as a reviewer, invited speaker and as an expert by other scientists and researchers.


Let’s Chat About Essential Tremors

About Essential Tremor

hugh: Is ET connected to the development of cognitive defects/declines?

Darlene_Lobel,_MD,_FAANS: Most patients with ET will have some cognitive decline and possibly mild memory impairment. Severe dementia is not usually caused by ET.

claudette: Is ET the same as voice tremor and, if so, are the remedies the same? Thanks.

Darlene_Lobel,_MD,_FAANS: Essential tremor typically causes hand tremor and, occasionally, head tremor and voice tremor. Medications and surgery are both best at controlling the hand tremor; however, deep brain stimulation can relieve head tremor and voice tremor in some patients.


Is It ET or PD?

Peppy: My head started shaking lightly when I was in my 40s. I am now 68 and it is the same. Stress makes it worse, such as being at the dentist. The neurologist I saw for migraine said she saw no Parkinson's disease. However, my dad had Parkinson's late in life and my maternal grandmother and aunt had head tremor only. That’s a triple genetic whammy. My three sisters are not affected so far at all. Why me? Does Parkinson’s start with a head tremor and not progress beyond that for more than twenty years? This tremor hasn't interfered with my lifestyle so far. Thank you.

Darlene_Lobel,_MD,_FAANS: Typically, head shaking alone (without arm shaking) is more likely to be caused by essential tremor (ET), rather than Parkinson's disease (PD). PD has other symptoms including a resting arm tremor, stiffness and slowness of movement, among other symptoms. ET causes arm and hand tremor when trying to perform activities such as drinking coffee, eating or writing. ET can also cause head tremors. ET runs in families about 50 percent of the time. It sounds like your grandmother and aunt may have had ET, and you may have ET as well. There are medications and surgery that can treat ET. I recommend you be evaluated by a movement disorders neurologist, who can confirm a diagnosis and evaluate whether your tremors are severe enough to need treatment. Typically, if your tremors don't interfere with your lifestyle or don't cause social embarrassment, treatment is not needed. ET does worsen over time, but more slowly than Parkinson's disease, and may progress at different rates in different people.

loveitaly: Since I was in my twenties, my hands would shake and sweat if I was going through a lot of stress. Two years ago, I had carpal tunnel syndrome surgery in both hands. Since then, even though I don't have any pain, tingling or any symptom that I had before the surgeries, I find that my tremors are more frequent. The tremors are especially bad if I am writing (my handwriting has deteriorated badly) or drinking or having soup, and with fine motor activities. No one in my family has ever been diagnosed with Parkinson's disease or any movement disorder as far as I know. I also have suffered from Meniere's disease over the years and have had terrible vertigoes, which had been controlled since October 2014, when I had ear/head surgery to repair the eardrum and to drain the fluid from the endolymphatic sac inside the ear. I don't know if this had anything to do with my tremors. My life is a constant stress due to multiple situations and illnesses in the family, so that doesn't help either. Thanks for your input and expertise.

Darlene_Lobel,_MD,_FAANS: It sounds like you may have essential tremor (ET). ET gets worse as patients get older, so I think that your tremors are getting worse because the ET is progressing rather than due to your hand or ear surgeries. The symptoms you describe (trouble eating soup, drinking, writing) are classic problems in patients with ET. Parkinson's disease has other symptoms (stiffness and slowness of movement) and usually starts around age 60, except in a few percent of cases. I recommend you be evaluated by a movement disorders neurologist who will likely start you on medications to treat your tremors.

witter123: I have had tremors in both hands for years. How can I tell the difference between ET and Parkinson's disease (PD)? I've been taking propranolol for years (with little relief), and recently I've developed a pill rolling tremor on my thumb. I started taking Sinemet a couple of months ago, also resulting in little relief. I'm 80 years old and have a goal of being able to legibly write my name again. Can I have both ET and PD? ET has been in my family -- grandfather, mother, father and sister. Any advice will be appreciated. Thanks.

Darlene_Lobel,_MD,_FAANS: Pill rolling tremors are classic for Parkinson's disease. The tremor with PD also occurs at rest, rather than when performing an action, which is more common with ET. Patients with PD often require higher and higher doses of Sinemet over a period of time to control their symptoms. That being said, although it is rare, some patients do in fact have both PD and ET. I recommend you be evaluated by a movement disorder neurologist.


Other Tremor Causes

JennM13: I have started trembling more than normal, including jerking and having over-spastic deep tendon reflexes and clonus. My last MRI was last fall and was clean. Some seem like Parkinson’s disease symptoms, and other symptoms I've had are like multiple sclerosis (MS). My neurologist thinks it's just autonomic dysfunction. Should I look deeper or could that be the problem since I have a clean brain MRI?

Darlene_Lobel,_MD,_FAANS: Trembling that is associated with jerking and clonus is not typical for Parkinson's disease or essential tremor. It is possible to have a normal brain MRI with MS, although typically this may be abnormal if the MRI is taken at a time you are having acute symptoms. There are many other tests that can be done to evaluate your condition including blood tests and a spinal tap. I recommend you be evaluated by a neurologist who specializes in movement disorders as the next step.

pidfmd: I have fibromuscular dysplasia of the carotid. I was told that it goes up into my brain. I am having tremors and spastic movement in instances like using the computer mouse and small motor movement i.e., lifting a coffee cup. Is this treatable?

Moderator: There is an upcoming health chat in April that might be of interest: Understanding FMD http://chat.clevelandclinic.org/chatpage.aspx?chatid=3835 on April 14, at noon. The speakers may be able to provide additional information for you.

GritGirl: I was previously diagnosed with hyperthyroidism, which I first noticed with hand tremors. Labs now show my thyroid to be stable and I need no medications, yet I still have tremors in my hands and feel a slight tremor in my whole body that has thrown off my balance some. I did not have any tremor issues prior to my hyperthyroidism and expected the tremors to cease once my labs were in the accepted range. A neurologist said they are now essential tremors. How do I know if that is correct or if there is something else that I should be looking for as an after effect of my hyperthyroidism?

Darlene_Lobel,_MD,_FAANS: If your tremors are affecting both arms equally, then that is not likely to be due to ET, but is more likely to be an effect of hyperthyroidism or another underlying medical condition. ET typically affects one arm preferentially. If your tremors are more prominent on one side of your body, you may still have ET, and it was just masked by the tremors you had when your hyperthyroidism was not being controlled by medication. I recommend that you be evaluated by a movement disorder neurologist for diagnosis and management.


Deep Brain Stimulation (DBS)

mfar: I had a fever of 106º when I was a child. Neurologists have mentioned that as a possible cause of my tremor, which started very early. By high school, my tremor was very noticeable. I am now 53 and it impacts many aspects of my life. Most importantly, I am a dental hygienist and it makes practicing impossible. I have tried propranolol 80mg, and it just does not stop my tremor enough to go back to practicing dental hygiene. It also lowers my blood pressure significantly. I would give anything to not have my hands tremor. I need to go back to work so very badly. I survived inflammatory breast cancer, but I am financially devastated. I know surgical intervention is very serious, but I really need to stop my tremor. Do you have any suggestions?

Darlene_Lobel,_MD,_FAANS: Essential tremor typically is diagnosed around age 50 or 60. However, some patients say that they first noticed tremors in their teenage years. When tremors are affecting your daily activities or your ability to perform your job, as you are describing, we recommend first medications to control symptoms. It sounds like your symptoms are not well controlled with propranolol and you are having side effects from the medication. There is another medication that your doctor may want to try, which is primidone (Mysoline). If that medication doesn't work, then I would recommend that you be evaluated at a comprehensive movement disorders center for possible deep brain stimulation (DBS). DBS involves placing tiny electrodes deep inside the brain. It sends an electrical signal from a "pacemaker-like” device to help control the tremors. The surgery is typically done with the patient awake for part of the surgery. You would be sedated for the initial part of the surgery and are woken up when we need to test the lead. This sounds a bit scary, but is actually a wonderful part of the surgery for many patients, because, for the first time in a long time, they can see their tremor stop with the stimulation.

frustrated@31: I have had ET for a very long time and have been taking Mysoline 200mg daily. It continues to get worse to the point where I am unable to write. I am 84 years of age, and other than deep-brain stimulation, is there any other treatment/drug that might restore my writing abilities?

Darlene_Lobel,_MD,_FAANS: Mysoline, or primidone, is a common treatment for essential tremor. It helps to reduce tremors in about half of the people who take the medication. There is another class of medicines known as beta-blockers (including Inderal) that can help reduce tremors as well. You can ask your doctor about switching to one of those medications. You cannot take beta-blockers with some medical conditions (severe asthma, some cardiac disorders) and there are more side effects with these medications than with Mysoline. Deep brain stimulation (DBS) is a good choice for patients who do not respond to these medications or cannot take them due to other medical problems or medication side effects. DBS typically reduces the tremors associated with ET by about 90 percent. The evaluation process to determine if you are a candidate for DBS is involved, and requires evaluation by a neurologist, neurosurgeon and psychologist, as well as an MRI. I recommend that you speak with your movement disorders neurologist about either increasing your dose of Mysoline (can be given up to 250mg four times a day) or switching you to a beta-blocker. While there is no age cut off for DBS per se, if medications can control your symptoms, we prefer to use them to treat ET.

LZ: I'm a 49-year-old female. My tremors began in my mid 30s. (My mother also has tremors.) They are transient but seem to get MUCH worse when I'm aware of them or try to suppress them. As a labor and delivery nurse, my already nervous patients get quite concerned when I come at them with a huge, shaking IV needle. Is there anything aside from medication to help control these frustrating tremors? I've already eliminated caffeine since that seems to exacerbate the tremors.

Darlene_Lobel,_MD,_FAANS: Anxiety and caffeine definitely make tremors worse. When tremors begin to interfere with your job, particularly in younger patients, we typically recommend deep brain stimulation (DBS) if mediations cannot control their tremor. If you have tried medications and they are not helping sufficiently, I recommend you undergo an evaluation for DBS.


Tremor Treatments

warren: What are the latest medications for essential tremor?

Darlene_Lobel,_MD,_FAANS: There are no new medications outside of research medications to treat essential tremor. Beta blockers and primidone have been used for a number of years and reduce tremors in about half of the patients who take them. Clinical trials are underway to study new medications to treat ET.

tremoraction: Would you recommend focused ultrasound to patients who are not candidates for DBS?

Darlene_Lobel,_MD,_FAANS: Focused ultrasound can be a good treatment for patients with ET to help control tremor. Although this is a newer therapy, early results have shown good tremor control (80 percent or better). This is a good option for patients who are not medically or psychologically healthy enough to have DBS. The difference between this treatment and DBS is that ultrasound is an ablative procedure, so it creates a permanent lesion in the brain, while DBS is a modulatory procedure and so is reversible.

tremoraction: Do you have an update for the NINDS study on octanoic acid?

Darlene_Lobel,_MD,_FAANS: The latest published study on octanoic acid for ET treatment did not demonstrate tremor improvement with the medication more than the placebo medication. However, newer trials with higher doses are underway, so there may be some promise for this medication in the future.

tremoraction: Do you recommend taking Mysoline and a beta-blocker together?

Darlene_Lobel,_MD,_FAANS: These two medications work very differently, so they can be taken together. However, patients on both may not see an added benefit of taking both medications together. One reason for this is that Mysoline lowers the efficacy of beta blockers. If you have tried maximum doses of Mysoline and beta blockers, I would recommend an evaluation for DBS.

ccquestions: Are there any exercises that would help limit or offset the tremors? Does diet affect the condition in any way?

Darlene_Lobel,_MD,_FAANS: Occupational therapy can help patients learn how to cope with tremors, although it does not reduce the tremors. There are many assistive devices, such as weighted spoons, button assist devices and even software to help reduce extra key strokes when typing on a keyboard that can be very helpful to patients with ET. The International Essential Tremor Foundation website essentialtremor.org has a list of many of these devices and links to locations where you can purchase them. Some insurance companies will cover the cost of these devices, as well. If your diet includes high amounts of caffeine, this can worsen the tremors. Alcohol in moderation may temporarily reduce the tremors, but there is often a rebound effect, which causes worsening of the tremor the next day.

tremoraction: How can patients find out where the clinical trials are taking place to study new medications?

Darlene_Lobel,_MD,_FAANS: All current clinical trials for medications and surgery are listed on the website clinicaltrials.gov

tenacious: My daughter has pronounced hand tremors diagnosed as essential tremor more than 40 years ago. She has taken Inderal over that period of time, which has provided some degree of control. Is Inderal relatively safe over that long time period? Are there more effective medications? Thank you.

Darlene_Lobel,_MD,_FAANS: Inderal is relatively safe to be taken over a number of years. However, it is not advised in patients with certain medical disorders, including patients with asthma or some cardiac disorders. Primidone is currently the only other medication that treats symptoms of ET.


Signs and Symptoms

Jack_in_Florida: My brother (88) has BET tremors in his right hand, but not his left. Is this common? He has difficulty signing his name (he’s right handed). I know there are medications that can reduce the tremors. What are the latest recommended drugs?

Darlene_Lobel,_MD,_FAANS: Essential tremor commonly affects one arm more than the other. As the disorder progresses, it can start to affect both sides severely. It causes difficulty with writing, eating and other daily activities. Medications to treat tremor include beta blockers (such as Inderal) and primidone (Mysoline.)

hugh: Does ET typically affect only the dominant hand/arm? Is this a diagnostic sign?

Darlene_Lobel,_MD,_FAANS: ET typically starts on one arm preferentially. This is not always the dominant hand. Tremor that starts in both hands at the same time is likely not due to ET, but due to other medical conditions. Evaluation by a movement disorders neurologist would help to properly diagnose the disorder.

ajr00: I have experienced the symptoms of ET for about 20 years. I "self-diagnosed" after my wife was diagnosed with Parkinson's disease. My father and one aunt also experienced it during their lives. To my knowledge, they were not diagnosed either. My symptoms occur mostly on my right hand. Holding a large coffee cup (which puts a slight strain on the hand) makes it more noticeable. No one in the family has had extreme lifestyle changes as a result (including me). My handwriting is not affected. Holding hands with others in prayer often brings comments from whoever is on my right. I don't plan to investigate further unless symptoms progress. Do you have any recommendations?

Darlene_Lobel,_MD,_FAANS: It sounds like your tremors are not interfering with your lifestyle for the most part. In your case, you likely do not need treatment at this time. If your symptoms progress and you start having trouble with handwriting, etc., or if the tremors begin to bother you in social situations, then I would recommend being evaluated by a movement disorder neurologist for medical or surgery therapy.

sbdav: Why are tremors sometimes severe and sometimes milder? Is there any relation to blood sugar level?

Darlene_Lobel,_MD,_FAANS: Severity of tremors can be affected by several factors, including other medical conditions such as hypoglycemia, or low blood sugar, which can make tremors worse.


Closing

That is all the time we have for questions today. Thank you, Dr. Lobel, for taking time to educate us about the diagnosis and treatment options for Essential Tremors.
 
On behalf of Cleveland Clinic, we want to thank you for attending our online health chat. We hope you found it to be helpful and informative. If you would like to learn more about the benefits of choosing Cleveland Clinic for your health concerns, please visit us online at http://my.clevelandclinic.org.

Darlene_Lobel,_MD,_FAANS: Thank you very much everyone for your thoughtful questions. Please let us know if we can help you further in any way.


For Appointments

To make an appointment or schedule an evaluation with Dr. Lobel or any of our other specialists in the Center for Neurological Restoration, please call 866.588.2264.


For More Information

Cleveland Clinic
Cleveland Clinic’s Center for Neurological Restoration is among the first in the world to bring together a team of experts, including renowned neurologists, neurosurgeons, researchers, psychiatrists, psychologists, physiologists, biomedical engineers, imaging specialists, physician assistants, nurse practitioners, technicians and a host of support personnel and other specialists who offer the latest proven treatments for people with movement disorders, psychiatric disorders and other neurological conditions. Our team offers comprehensive, leading-edge care at Cleveland Clinic’s main campus. The center — focused on advancing treatment through ongoing basic and clinical research — is nationally recognized for expertise in medical management and for innovations in the surgical treatment of movement disorders, including essential tremor, Parkinson’s disease and dystonia as well as obsessive compulsive disorders, depression and chronic pain.

Cleveland Clinic Health Information
Learn more about symptoms, causes, diagnostic tests and treatments for essential tremors:

Cleveland Clinic Treatment Guide
Get more information about treatment options for movement disorders and neurological conditions.

Clinical Trials
For additional information about clinical trials: ClinicalTrials.gov.

Essential Tremor Support Group – Northeast Ohio Region
For people living in Northeast Ohio, we hope you can join us for our support group series dedicated to people living with essential tremor. The next support group meeting is Tuesday, March 15, from 7-9 p.m., at the Cleveland Clinic Independence Family Health Center, Conference Room A, 5001 Rockside Road, Independence. Register today by calling 216.444.2685 or email ehrmanb@ccf.org.


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