WHAT IS BLEPHAROSPASM
BENIGN ESSENTIAL BLEPHAROSPASM (BEB) is a focal dystonia—a neurological movement disorder involving involuntary and sustained contractions of the muscles around the eyes. The term essential indicates that the cause is unknown, but fatigue, stress, or an irritant are possible contributing factors. Blepharospasm may appear as frequent blinking, squinting of both eyes, spasms of eyelid closure, or simply difficulty in keeping the eyes open. Blepharospasm is often misdiagnosed because of lack of awareness of the condition. Too often it may be initially diagnosed erroneously and effective treatment delayed.
Symptoms can be dry eyes, sensitivity to light, blinking frequently, winking or squinting and often is first noticed when driving. Many people mention that driving becomes a real concern before they are diagnosed.
HOW TO FIND A DOCTOR
First step is to visit your GP who may or may not be familiar with BEB. Ask for a referral to an Ophthalmologist or a Neurologist.
An optometrist can also provide a referral.
Other treating doctors are Neuro-ophthalmologists and Oculoplastic surgeons. You will find some information about doctors who treat BEB under Medical Treatment and lists of doctors in the State pages: WA, QLD, NSW, VIC, SA, TAS, NT and ACT.
WHAT TREATMENT IS AVAILABLE?
There is no cure for BEB at the moment. The most usual form of treatment in Australia is Botulinum Toxin injections. There is also some drug treatment but our experience is that it is not widely used in Australia. Lastly there is surgical intervention – myectomy.
WHAT IS BOTULINUM TOXIN
Botulinum Toxin is a neurotoxic protein produced by the bacterium Clostridium botulinum. It is also produced commercially for medical, cosmetic, and research use. There are two main commercial types: botulinum toxin type A and botulinum toxin type B. It is approved for use in over 60 countries. There are three products used in Australia: Botox, Dysport and Xeomin. Links to these products can be found on the Medical Treatment page.
HOW DOES IT WORK?
When injected into muscles, it temporarily weakens those muscles. Your doctor will use a very fine needle and inject into several locations around the eye into the muscles that are contracting and causing the eye to spasm. It can take several visits to determine the correct sites for injecting based on the results you get. You may notice a difference within a few days of the injections. Often the full effect will take about two weeks to kick in. Everyone is different. Some find the treatment can last for up to three months or longer and with others only a few weeks. Our members report that the longevity of the treatment differs according to the product injected.
DOES IT HURT?
Sometimes! Some doctors use a cold compress prior to the injections and this seems to help. There is also a cream – Emla – that is available over the counter at pharmacies and can be used prior to having the injections and some people find this helps. It is only a momentary pain in most instances and it is worth putting up with to experience the relief that comes from not having constant spasms.
Another company making an anaesthetic cream is CustomCare Compounding Pharmacy. They are happy to send samples to treating doctors.
Note: Emla cream needs to be applied an hour before treatment whereas purpose made cream from the compounding pharmacy is much faster acting therefore more convenient for a busy doctor.
ARE THERE ANY SIDE EFFECTS?
There are sometimes some side effects but these are usually short lived. You may experience some drooping (ptosis) of the eyelids . You may experience some irritation, dry eyes, tearing or light sensitivity. Very occasionally you may experience blurry or double vision. If you experience any of these, tell your doctor and he may adjust the dosage he gives you next time. It does take time to determine the exact dosage that is right for you.
NOT GETTING A GOOD RESULT?
Whilst we cannot offer medical advice there is nothing to prevent you from asking your GP for a referral to a different specialist.
If you belong to a support group, members can share experiences and discuss their treatment and the results. You can also contact us with your concerns.
Botulinum Toxin is covered by the Pharmaceutical Benefits Scheme. Your doctor may or may not bulk bill.
Each treater charges a different application fee. Our experience is that this can range from $150 to $400 so we advise asking first and if you are concerned you can always go somewhere else. Depending on personal circumstances there are rebates.
Contact us if you have further questions and you can also refer to the BEBRF (Benign Essential Blepharospasm Research Foundation in the US) for a more comprehensive list of questions.