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Questions and Answers about Blepharospasm/Meige (FAQ)

This information is also available as a downloadable PDF

Question: What are the early symptoms of benign essential blepharospasm?
Answer:
  • Dry eyes
  • Light sensitivity
  • Occasional increased blinking, winking or squinting
  • First symptoms are often noticed when driving!
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Question: How do the symptoms of benign essential blepharospasm or oromandibular dystonia (Meige) progress?
Answer:
  • 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
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Question: What type of doctor treats blepharospasm?
Answer: Neurologists, neuro-ophthalmologists, ophthalmologists and oculoplastic surgeons. However, look for one that specializes in blepharospasm and has experience injecting botulinum toxin.

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Question: What treatments are available for benign essential blepharospasm?
Answer:
  • Botulinum toxin injections
  • Medical (drug) treatment
  • Surgery (myectomy)
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Question: What is botulinum toxin?
Answer: 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

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Question: What is the procedure for a botulinum toxin treatment and what results should I expect?
Answer: 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.

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Question: Will botulinum toxin injections make it possible for me to perform activities as before the onset of blepharospasm/Meige?
Answer: It's hard to say. The severity of blepharospasm and the response to botulinum toxin treatment is not the same for everyone.

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Question: Is a botulinum toxin treatment painful?
Answer: 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 prior to 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.

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Question: What is the usual botulinum toxin dosage?
Answer: 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.

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Question: What are the possible side effects of botulinum toxin treatment?
Answer:
  • 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
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Question: What should I do if I’m not getting good results from my botulinum toxin treatment?
Answer: 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.

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Question: Is there anything I can do to make the botulinum toxin treatment more effective?
Answer:
  • Keep a diary
    • When injected
    • Number of units
    • When it kicked in
    • Side effects
    • How long it lasted
  • Communicate honestly with your doctor
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Question: What are some reasons for having unsuccessful results from botulinum toxin injections?
Answer:
  • 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)
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Question: Can I develop antibodies from botulinum toxin injections?
Answer: As a rule, patients who receive treatment only for blepharospasm do not develop antibodies.

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Question: Is botulinum toxin treatment covered by Medicare and medical insurance?
Answer: Injections should be covered (to some extent) by Medicare and private insurance. Through their Patient Assistance Programs, Allergan (Botox®), Merz Pharmaceuticals, LLC (Xeomin®), and Solstice Neurosciences (Myobloc®) are dedicated to supporting patients who are subject to financial hardships. For information, contact:
Allergan (Botox®) Botox Patient Assistance Program (uninsured and underinsured) Merz Pharmaceuticals, LLC (Xeomin®) Patient Savings Program Solstice Neurosciences (Myobloc®) Patient Reimbursement Program (financial hardship) Back
Question: Do any drugs help benign essential blepharospasm?
Answer: 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.

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Question: What are the names of drugs that may help benign essential blepharospasm?
Answer: The following drugs are helpful to some. This is not a complete list.

Generic NameBrand NameDrug Type
ClonazepamKlonopinAntiepileptic
LorazepamAtivanAnxiolytic
DiazepamValiumAnxiolytic
TrihexiphenadylArtaneAnticholinergic
BaclofenLioresalAntispastic
CarbamazepineTegretolAnticonvulsant
DiphenhydramineBenadrylAntihistamine

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.

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Question: Are there drugs that may make blepharospasm worse?
Answer: There are some drugs belonging to a class called "dopamine receptor blocking agents" (DRBAs) that may aggravate blepharospasm and lower facial and jaw spasm. 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.

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Question: Will my insurance company pay for myectomy surgery?
Answer: 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.

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Question: What are some things you can do to relieve the symptoms of benign essential blepharospasm?
Answer:
  • Wear sunglasses (type that wrap 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
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Question: Can benign essential blepharospasm be inherited?
Answer:
  • a gene for blepharospasm has NOT been identified
  • 5% of patients with blepharospasm have family members that have facial movement disorders (95% don’t)
  • It is possible that there may be some "disposition" for blepharospasm that can be inherited, but it has not been identified
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Question: Is it possible for someone with benign essential blepharospasm to have a spontaneous remission?
Answer: Complete remissions have been reported but they are rare. Sometimes temporary remission occurs.

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Question: Is benign essential blepharospasm a psychiatric disorder?
Answer: No! It is a neurological disorder. It is sometimes misdiagnosed as a psychiatric disorder.

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Question: What can I do to help relieve dry eye symptoms?
Answer: 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
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Question: I need to apply for disability. What should I do?
Answer: 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 also available on-line. This packet does not include disability application forms. These forms may be obtained directly from Social Security or filled out online at http://ssa.gov/.

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