Education

The 2023 BEBRF Symposium was held at Hyatt Regency St. Louis at the Arch, St. Louis, MO on September 22, 2023. Our Program Director was John Holds, MD.  The symposium was sponsored by Abbvie. When you are finished viewing a presentation, use your browser’s back arrow to return to the Videos page.

The symposium was held at the Hilton Phoenix Airport, Phoenix, AZ on October 22, 2022. Our Program Director was Padma Mahant, MD.  This symposium was sponsored by Merz Therapeutics. When you are finished viewing a presentation, use your browser’s back arrow to return to the Videos page.

• Oromandibular Dystonia and Meige Syndrome- Virgilio Gerald H. Evidente, MD

• Overview of Blepharospasm Risk Factors, Diagnosis, and Treatment- Padma Mahant, MD

• Botulinum Toxin:  Injection Techniques and Toxin Choices- Johan E.S. Samanta, MD

• Dry Eyes and Photophobia- Obada Subei, MD

• Deep Brain Stimulation Surgery for Blepharospasm:  What Do We Know? – Francisco Ponce, MD

• Exploring Alternative Management for Blepharospasm and Related Conditions- Indu Subramanian, MD

• 2022 BEBRF Presenters Q&A Session

The symposium was held at the Doubletree by Hilton Philadelphia Airport, Philadelphia, PA on October 9, 2021. Our Program Director was Juij Bilyk, MD.  This symposium was sponsored by Allergan.  The PowerPoints of the presentations have been posted.  In viewing the PowerPoints, you may have hit the minus sign in the top toolbar several times to get the slides to fit the height of the screen. When you are finished viewing a presentation, use your browser’s back arrow to return to the Videos page.

• Research Summary – Boyd
  • Dr. Jane Boyd – Research Summary
• Overview of Facial Dystonia – Lao
  • PowerPoint
  • April Lao, MD – Overview of Facial Dystonias: BEB, Cranial (Meige), Apraxia of Eyelid Opening
• Botulinum Toxins: Pluses and Minuses – Bilyk
  • PowerPoint
  • Jurij R Bilyk, MD – Botulinum Toxins Pluses and Minuses
• Botulinum Toxin Injection Patterns, Complications, and Adjunctive Therapies – Watson
  • PowerPoint
  • Alison Watson, MD – Botulinum Toxin Injection Patterns, Complications, and Adjunctive Therapies
• First Panel Q&A  – Lao,  Bilyk,  & Watson
  • First Panel Q&A
• Surgical Management of Blepharospasm – Murchison
  • PowerPoint
  • Ann P Murchison, MD, MPH – Surgical Treatment Options
• Coping with Dry Eyes and Photophobia – Kanesa-Thasan
  • PowerPoint
  • Aditya Kanesa-Thasan, MD – Coping with Dry Eyes and Photophobia
• Second Panel Q&A – Bilyk, Murchison, & Kanesa-Thasan
  • Second Panel Q&A
• Medical Marijuana for Blepharospasm (and a bit on Transcranial Stimulation as well) – Berman
  • PowerPoint
  • Brian Berman, MD, MS, FAAN – Medical Marijuana for Blepharospasm & a bit on Transcranial Stimulation
• Lower Facial & Neck Dystonias – Krein
  • PowerPoint
  • Howard Krein, MD, PhD, FACS – Management of Lower Facial & Neck Dystonias

Patient Panel on Complementary Treatments

• What is Neuroplasticity – Renehan
  • PowerPoint
• PressOp and other Sensory Trick devices for Blepharospasm – Bakalor
  • PowerPoint
• Neurologic Dry Needling – Cundiff
  • PowerPoint
• Reiki: a Complementary Practice – Clark
  • PowerPoint
• Patient Panel on Complementary/Alternative Therapies – Renehan, Bakalor, Cundiff, Clark
  • Patient Panel on Complementary/Alternative Therapies

The symposium was held at the Hyatt Regency, Houston Intercontinental Airport, Houston, TX, on September 7, 2019. Our Program Director was Michael Yen, MD. Symposium was funded courtesy of Merz Pharmaceutical.

• Medical Treatments for BEB & Dystonia – Ondo 
• Causes of BEB & Related Dystonias – Richani-Reverol 
• DBS for Dystonia – Guillet 
• First Question and Answer Session
• BEBRF: Past, Present, & Future of Research – Jankovic
• Supporting the Supporters – Brown 
• Navigate the Social Security Disability Process – Healy 
• Second Question and Answer Session 
• New Treatments for Dry Eyes – Weikert 
• Update on Botulinum Toxin Injections for Blepharospasm- Allen
• Lenses for BEB & Dry Eyes – Hemmati 
• Surgical Myectomy for BEB – Yen 
• Third Question and Answer Session 

The symposium was held at the Hilton Garden Inn Atlanta Airport North, Atlanta, GA, on August 4, 2018. Our Program Director was H. A. (Buz) Jinnah, MD, PhD. Symposium was funded courtesy of Allergan.

• Clinical Spectrum of Facial Spasms – Scorr 
• What Causes BEB & Related Disorders – Miller 
• Treatment: BEB & Oromandibular Dystonia – Jinnah 
• Surgical Options for BEB: Myectomy – Kim 
• DBS for BEB – Miocinovic 
• First Question and Answer Session
• Research Advances and Future Priorities – Kilic-Berkmen
• Insurance & Reimbursement for Treatment – Arrendale
• Second Question and Answer Session
• Patient Panel 

The symposium was held at the University of Minnesota, St Paul, MN, on September 9, 2017. Our Program Director was Andrew Harrison, MD. Symposium was funded courtesy of Merz Pharmaceutical.

• Welcome to the Symposium – Harrison
• Diagnosis of Eyelid Spasm Disorders – McClelland
• DBS for BEB: Are We There Yet? – Schrock 
• Surgery & BEB – Mokhtarzadeh 
• What’s New in Botulinum Toxins? – Soparkar
• First Question and Answer Session 
• BEB & Dry Eye – Soparkar
• What’s New in BEB Research – McLoon 
• BEB & Low Vision Therapy – Ruff 
• Second Question and Answer Session 

The symposium was held at the University of Colorado Denver Anschutz Medical Campus, Aurora, CO, on August 6, 2016. Our Program Director was Brian Berman, MD, MS. Symposium was funded courtesy of Allergan.

• Introduction to the Symposium – Berman 
• Overview of BEB & Other Neuro Eye Disorders – Comella 
• Epidemiology & Genetics of BEB – Fahn 
• Pathophysiology of BEB & Photophobia – Hallett 
• First Panel Discussion – Q/A 
• Imaging Research in BEB – Berman
• Relationships of BEB to Dry Eye – Pelak 
• Treatment Approaches to BEB – Jankovic 
• Surgical Treatment of BEB – Anderson 
• Second Panel Discussion – Q/A 
• Reflections on BEBRF’s 35 Years 

The symposium was held at the Ochsner Medical Center, New Orleans, Louisiana, on August 1, 2015. Our Program Director was Georgia Lea, M.D. Symposium was funded courtesy of Merz Pharmaceutical.

• Introduction to Facial Dystonias – Lea
• Pathophysiology of the Facial Dystonias – Houghton 
• Non-invasive Treatments of BEB & HFS – Rao 
• The Surgical Treatment of BEB – Oberg 
• Medical Uses of Botulinum Toxins – Calegan
• First Panel Discussion / Q&A 
• Research Priorities in BEB & the BEBRF – Stacy 
• Second Panel Discussion / Q&A 

The symposium was held at University of Pittsburgh in Pittsburgh, PA on August 16, 2014.  Our Program Director was Raymond Sekula, M.D.  The program was supported by an Educational Grant from Allergan.

• Blepharospasm, Meige, Apraxia of Lid Opening & Other Facial Dystonias, and Their Mimickers – Jankovic
• Insight into the Pathophysiology of Blepharospasm and Photophobia – Hallett
• First Question & Answer Session
• Botulinum Toxins Indications, Benefits, and Limitations – Jankovic
• Understanding Dry Eye and Treatment, Part 1 – The Tear Film and Blinking – Evinger & Stefko
• Understanding Dry Eye and Treatment, Part 2 – Dry Eye – Evinger & Stefko
• Surgery for Blepharospasm – Stefko
• Second Question & Answer Session
• Animal Models for Blepharospasm and Update on Research – Evinger
• Deep Brain Stimulation for Facial Dystonias – Richardson
• Third Question & Answer Session

The symposium was held at the University of California, in San Diego, on August 10, 2013. Our Program Director was Peter Savino, M.D. Symposium was funded courtesy of Merz Pharmaceutical.

• Relevant Anatomy in Treating Blepharospasm – Korn 
• Pathophysiology of Focal Dystonia – Wu
• Clinical Manifestations of BEB & Dystonia – Edwards 
• Treating BEB: Medical Options – Frishberg 
• First Q & A Panel Discussion 
• Different Types of Botulinum Toxins – Frishberg 
• Research in BEB: Modulating the Blink Reflex – Wu 
• Second Q & A Panel Discussion 

The 27th International Conference and Scientific Symposium in Irvine, California, on August 8, 2009. The conference was funded courtesy of Allergan.

• Clinical Features of BEB & Hemifacial Spasm – Jankovic 
• Blepharospasm & Ophthalmic Disorders – Savino 
• Epidemiology of Blepharospasm – Dafazio
• Genetic Approaches in Primary Dystonia – Ozelius
• Cranial Dystonias: Pathophysiology – Berardelli
• Using Animal Models to Understand BEB – Evinger 
• Treating Eye Disease in People with BEB – Soparkar
• BEB: Current; New; Future Treatment – Scott
• BEB, Photophobia, & FL-41 – Katz 
• Oral Agents for the Treatment of BEB – Comella 
• Myectomy Surgery for Blepharospasm – Anderson 
• Deep Brain Stimulation for Blepharospasm – Ostrem

Managing Dry Eye with speakers Rebecca Petris & Charlene Hudgins

• Dry eyes
• Light sensitivity
• Occasionally increased blinking, winking, or squinting
• First symptoms are often noticed when driving!

• Increased blinking, squinting, or forced eyelid closure
• Eyelids clamp shut and eyebrows pull down
• Symptoms may become so severe that the patient becomes functionally blind
• May develop lower facial problems such as grimacing of the mouth
• May develop breathing problems

Neurologists, neuro-ophthalmologists, ophthalmologists, and oculoplastic surgeons. However, look for one that specializes in blepharospasm and has experience injecting botulinum toxin.

• Botulinum toxin injections
• Medical (drug) treatment
• Surgery (myectomy)

Botulinum toxin is currently the treatment of choice for blepharospasm. When injected into muscles, it temporarily weakens the muscles. It is approved for use in over 60 countries. Blepharospasm patients in the U.S. are currently injected with the following FDA approved botulinum toxins:

Watch Video: “What’s New in Botulinum Toxins?”- Soparker

Several injections of botulinum toxin, using a very fine needle, are made around the eye directly into muscles that are contracting excessively. Positive effects of the treatment for blepharospasm are often seen within about 3 days of botulinum toxin treatment and the maximum effect is often achieved 2-3 weeks after injection. Results from one treatment can last up to 3 months.

It’s hard to say. The severity of blepharospasm and the response to botulinum toxin treatment is not the same for everyone.

There can be momentary pain during each injection. Some are bothered by the pain more than others. EMLA cream (a prescription topical anesthetic) can be placed on the area approximately 1 ½ hours before injection and may be helpful. A cold compress (or a bag of frozen peas) applied to the injection site after the injections may also be helpful.

There is not a standard dose as each patient is different, the types of dystonia vary, and botulinum toxin comes in various forms. Most physicians start injecting with a low dosage to avoid possible side effects, increasing it as needed. If the first set of injections is not satisfactory, the physician should be notified so that he/she can personalize the treatments to suit the individual patient.

• Temporary drooping of the eyelids (ptosis) may partially obscure vision
• Eye irritation, dry eyes, tearing, or light sensitivity
• Occasional blurry or double vision
• Side effects are usually mild and short in duration

Discuss it with your injecting physician. If he/she is not willing to work with you, or if after several attempts at solving the issues, you’re still not satisfied, you may need to go to a different physician.

• Keep a diary
• • When injected
  • Number of units
  • When it kicked in
  • Side effects
  • How long it lasted
• Communicate honestly with your doctor
• Watch video “Getting the Most Out of Your Botulinum Toxin Injections for Blepharospasm” 

• Incorrect reconstitution of the toxin by the injector
• Insufficient dosage
• Injection site selection
• Injection technique
• Apraxia of eyelid opening (inability to keep eyelid open in absence of spasms)

As a rule, patients who receive treatment only for blepharospasm do not develop antibodies.

Injections should be covered (to some extent) by Medicare and private insurance. Through their Patient Assistance Programs, Allergan (Botox®)and Merz Pharmaceuticals, LLC (Xeomin®)are dedicated to supporting patients who are subject to financial hardships. For information, contact:

Allergan (Botox®) Botox Patient Assistance Program (uninsured and underinsured)

• Phone: 1-800-442-6869 from 9 am to 8 pm (ET), Monday thru Friday
• Online: https://www.abbvie.com/patients/patient-assistance/allergan-patient-assistance-program.html

Merz Pharmaceuticals, LLC (Xeomin®) XEOMIN Patient Savings Program

• Phone: 1-888-493-6646 from 8 am to 8 pm (ET), Monday thru Friday
• Online information: https://www.xeomin.com/patient-assistance

Drugs used to treat benign essential blepharospasm require a prescription and physician supervision. It requires trial and error to find a drug that helps. Some of these drugs may have severe side effects, may lose effectiveness over time, and may be addictive. When stopping these drugs, under a doctor’s supervision, they must be tapered off and not stopped abruptly.

The following drugs are helpful to some. This is not a complete list.

BEBRF does not advocate any particular drug treatment option; therefore, it is strongly suggested that patients do not change medications without first consulting with their physician.

Some drugs are belonging to a class called “dopamine receptor blocking agents” (DRBAs) that may aggravate blepharospasm and lower facial and jaw spasms. BEBRF does not advocate any particular drug treatment option; therefore, it is strongly suggested that patients do not change medications without first consulting with their physician.

Before proceeding with this treatment option, check with your insurance company to be sure that they will pay for it. If the insurance company does not cover it, the full out-of-pocket cost for a myectomy can be as much as $20,000.

• Wear sunglasses (the type that wraps around to cut wind and glare)
• Wear a hat with a brim
• Sit facing away from windows
• Wear tinted lenses
• Place warm or cold compresses on the eyes
• Use sensory tricks
  • Concentrate on a hobby or non-stressful activity
  • Talk, sing, or hum
  • Touch temple or forehead

• A gene for blepharospasm has NOT been identified
• 5% of patients with blepharospasm have family members that have facial movement disorders (95% don’t)
• There may be some “disposition” for blepharospasm that can be inherited, but it has not been identified

Complete remissions have been reported but they are rare. Sometimes temporary remission occurs.

No! It is a neurological disorder. It is sometimes misdiagnosed as a psychiatric disorder.

It may take some experimenting to find out what works for you.

• Use artificial tears
• Use moisturizing gels or ointments
• Place warm or cold compresses on the eyes
• Take fish oil or flaxseed oil supplements
• Use a humidifier
• View Dr. Soparkar’s video

BEBRF has a packet of material available at no charge for those patients who are considering filing for Disability under the Social Security Act. This information is also available online. This packet does not include disability application forms. These forms may be obtained directly from Social Security or filled out online at https://www.ssa.gov/benefits/disability/.