Education

VIDEOS

Medical Glossary

A reference for BEBRF Patients.

PDF

FAQ – Frequently Asked Questions

  • 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:

Botulinum Toxin Type FDA Approval
Botox® A 1989
DysportTM A 2009
Xeomin® A 2010
Myobloc® B 2000

 

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

  • 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.

Generic Name Brand Name Drug Type
Clonazepam Klonopin Antiepileptic
Lorazepam Ativan Anxiolytic
Diazepam Valium Anxiolytic
Trihexyphenidyl Artane Anticholinergic
Baclofen Lioresal Antispastic
Carbamazepine Tegretol Anticonvulsant
Diphenhydramine Benadryl Antihistamine

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/.