Cleveland Clinic Online Health Essential Tremor Text Chat

Cleveland Clinic welcomed essential tremor patients to join a Cleveland Clinic Online Health Text Chat on Monday, March 14, 2016. Tremor Action Network posted Chat registration details and reminders on Facebook, Twitter and Yahoo. Cleveland Clinic offered participants to submit their questions the day before the Chat. Submitting questions in advance is a helpful feature for patients with hand tremors.

The Chat Topic was “Essential Tremor Essentials.” Dr. Darlene Lobel, neurosurgeon affiliated with Cleveland Clinic Center for Neurological Restoration and associate professor of surgery at the Cleveland Clinic Lerner College of Medicine, shared her expertise by answering questions in a text format on the diagnosis and treatment of essential tremor. The Chat scheduled at Noon EST for 1 hour began 10 minutes later to allow for participants that hadn’t submitted questions the day before to submit their questions by typing in a box below the Chat, and clicking on a Submit Question button. The question box was available for additional questions during the Chat.

There was a Chat Moderator whose name and details about them were not revealed but was personable with a shout out, “Good Morning Everyone from Cleveland, Ohio!” Chat text “About the Speaker and About the Clinic” introduced Dr. Lobel and Cleveland Clinic to the Chat audience. Participants were identified by their sign in user names. Tremor Action Network used the sign on “tremor action” to ask questions.

The Moderator framed the chat with a text summary of what the majority of essential tremor patients have heard before about Essential Tremor Essentials:

• 5 million Americans diagnosed with essential tremor
• essential tremor is uncontrollable shaking that usually begins at middle age
• the cause of essential tremor is unknown
• essential tremor is associated with a family history
• life expectancy is not affected by essential tremor
• essential tremor affects every day activities
• essential tremor can be reduced with medications
• deep brain stimulation is available for treating essential tremor

The Moderator was in charge of rolling out the questions. Unless your Internet service provider goes down, an online text Chat with a transcript is most efficient. A text Chat doesn’t have sound and slide technical difficulties that can occur with webinars and teleconferences. You don’t have to take notes that can be a difficult task for most people with hand tremors. A transcript of the text Chat is automatically archived. The Cleveland Clinic Chat will be available in one week. Registered participants will receive an email with a link to the transcript. But, with a text Chat you don’t have to wait for a transcript link. You can copy and paste the text chat into a Word doc.

A total of 21 questions were asked. Tremor Action Network submitted 4 questions (Responses to TAN questions in Italic) that were all answered by Dr. Lobel. The majority of participants “told a story” within their question that is an effective advocacy tool. Participants shared their current age, the age the tremor began, the type of tremor (hands, head, voice) affecting them, their tremor progression from the time they first noticed a tremor, how their tremor interferes with daily activities, the medications prescribed that do not help reduce their tremor, atypical symptoms not associated with tremor, their family history, occupation if they were still working, their concern for Parkinson’s, and the stress caused by the tremor.

A text Chat has no sound, but Dr. Lobel’s responses indicated she is a dedicated and caring movement disorders professional. Dr. Lobel performs both Deep Brain Stimulation (DBS) and Gamma Knife Radiosurgery. She has worked with Dr. Alim-Louis Benabid, founder of DBS for Parkinson’s Disease. Dr. Lobel constantly emphasized “that though there are medications and surgery that can treat ET, her primary recommendation is to be evaluated by a neurologist who specializes in movement disorders as the first step in confirming a diagnosis and evaluation for the treatment of essential tremor.”

Dr. Lobel framed the Q & A Chat with the following responses:

1. Typically head shaking is caused by essential tremor (ET) rather than a symptom of Parkinson’s Disease (PD). It is rare, but some patients do have both ET and PD.
2. There are more side effects with beta-blockers (Propranolol/Inderal) than the anticonvulsant Primidone/Mysoline, that can be prescribed up to 250mg 4 times a day. Inderal is not advised in patients with asthma or some cardiac disorders.
3. Deep Brain Stimulation (DBS) typically reduces ET by about 90%. DBS surgery is best at controlling hand tremor. DBS can relieve head tremor and voice tremor in some patients.
4. ET commonly starts in 1 arm/hand and affects 1 arm/hand more than the other. Tremor does not always start in the dominant hand. As the disorder progresses, tremor can severely affect both sides. Tremor that starts in both arms/hands at the same time is likely not associated with ET.
5. Clinical trials are underway to study new medications to treat ET. Gave the website clinical trials.gov for medication trials, but did not specifically address the new medications being studied.
6. Focused Ultrasound results have shown a tremor control of 80% or better. Focused Ultrasound is an option for patients that are not medically or psychologically approved for DBS. Focused Ultrasound creates a permanent lesion in the brain, while DBS is a modulatory procedure and so is reversible.
7. Anxiety and caffeine definitely make tremors worse. Alcohol in moderation may temporarily reduce tremors, but the often rebound effect the next day worsens tremor. Severity of tremor can be affected by hypoglycemia, or low blood sugar that can make tremors worse.
8. Most patients with ET will have some cognitive decline and possibly mild memory impairment.
9. 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.
10. Mysoline and a beta-blocker can be taken together because the 2 medications work very differently. However, patients on both medications may not see an added benefit. Mysoline lowers the efficacy of beta blockers.
11. Occupational therapy (OT) can help patients cope with tremors, although OT does not reduce tremors. There are many assistive devices that can be very helpful to ET patients.

Dr. Lobel thanked everyone for their questions, and let the participants know Cleveland Clinic is available to help in any way. The Moderator provided Cleveland Clinic resources for essential tremor. Tremor Action Network plans to follow-up on the Octanoic Acid response (#9).

Living with essential tremor
Essential tremor FAQs
Deep Brain Stimulation Overview

TAN Blog Contributor
Kathleen Welker