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Botulinum toxin injections for dystonia

What is botulinum toxin?

Botulinum toxins are a group of proteins produced by the bacterium Clostridium botulinum. Currently there are seven identified types of botulinum toxin: A, B. C1, D, E, F and G.  Three of these are available for clinical use in the United States in the form of injections.  These are type A which includes Botox produced by Allergan, Inc., Dysport, produced by Ipsen, and Xeomin produced by Merz, as well at type B (Myobloc, produced by Solstice Neurosciences, Inc).

Botulinum toxin injections are used to treat certain types of dystonia.  Dystonia is a neurologic syndrome characterized by involuntary muscle contractions of opposing muscles that may result in twisting and repetitive movements or abnormal postures. Botulinum toxin injections have been approved by the FDA for treatment of the following types of dystonia: blepharospasm and cervical dystonia.

How do botulinum toxin injections work?

Botulinum toxin injections work by blocking the signals that are sent from the nerve cells to the muscles.  When these signals are blocked, the release of acetylcholine is prevented.  Acetylcholine is neurotransmitter found in the body and when its release is blocked, the affected muscles are rendered unable to contract.  Patients treated with botulinum toxin injections usually notice the effects 3 days to 2 weeks following treatments.   After approximately 3 months, the effects of the botulinum toxin will diminish.

The success of a botulinum toxin injection depends on:

  • the dose
  • the injection site in the muscle
  • experience of the physician administering the injection
  • clear communication between the physician and patient regarding the symptoms being treated and the potential outcomes

It is important to remember that it may take more than one cycle of injections before the optimal benefit is achieved.

What is EMG?

EMG is the abbreviation for electromyography, a technique used for evaluating and recording the activation signal of muscles.  EMG is performed using an instrument called an electromyogram which helps the physician to locate the most active part of the muscle.  EMG is primarily used for targeting deep muscles that are difficult to access.

If your physician uses EMG, he or she will place two small electrodes on your skin and one will attach to the injection needles.  When the needles is inserted into the muscle, the electromyogram will emit a sound similar to static and indicate to the physician through sound and a display on the screen, where the most active part of the muscle is located.

Your appointment

It is normal to feel nervous prior to your first botulinum toxin injection.  We recommend following your typical daily schedule and eating a meal before your visit.  Some patients prefer to bring an MP3 player to listen to during the visit while others practice relaxation techniques.

The procedure prior to injection varies slightly depending on the injection site.  Typically, the doctor or nurse will first clean off your skin using an alcohol swab.  This may feel cool against your skin.  Depending on the site, the doctor or nurse may use a numbing cream to help with pain at the injection site.

The needles used to inject botulinum toxin are very fine and most patients report feeling mild discomfort during the injection.  The needle may be connected to an EMG machine and the doctor will inject specific muscles depending on the type of dystonia.

Are there potential side effects?

Side effects from botulinum toxin injections are infrequent and transient.  For blepharospasm patients, mild side effects may include drooping of the eyelid, blurred vision, facial asymmetry and double vision.  Tearing may occur.

General side effets of botulinum toxin injections may include pain, tenderness and/or bruising at the injection site, difficulty swallowing, upper respiratory infection, neck pain and headache.  Most side effects recover spontaneously.

Rare but serious side effects include severe problems swallowing, serious heart problems and severe allergic reactions.  If you are experiencing a severe side effect, contact emergency services immediately.

Can I continue taking my oral medications for dystonia?

Botulinum toxin injections can be used in conjunction with oral medications as well as in place of oral medications.  The response to drug therapies for dystonia can be inconsistent.  No single drug works for every individual and several trials of medications may be necessary.  Establishing a satisfactory treatment plan requires patience on the part of the patient and the neurologist.

Medications typically used to treat cervical dystonia include:

  • Artane (trihexyphenidyl)
  • Ativan (lorazepam)
  • Cogentin (benztropine)
  • Klonopin (clonazepam)
  • Lioresal (baclofen)
  • Parlodel (bromocriptine)
  • Sinemet (levodopa)
  • Valium (diazepam)

Patient specific treatment plans

Treatment with botulinum toxin injections should be administered by a trained physician however collaboration from various specialties is very helpful for developing a comprehensive treatment plan.  Your doctor may refer you to other specialties that work closely together including physical and occupational therapy, psychology, psychiatry and social work.

What else can be done to help with the symptoms?

Stress can worsen the symptoms of dystonia.  Using stress management and relaxation techniques may be beneficial.  Education is vital when dealing with a dystonia diagnosis and reassurance from family, friends and others is beneficial.  Support groups can be beneficial by offering encouragement and camaraderie.

My doctor is not familiar with this condition. What should I do?

Give your doctor a copy of this page as an introduction.  Make sure your primary care provider (PCP) has a good relationship with your neurologist or ophthalmologist.  This will ensure they will work together in collaboration for your benefit.

What should I do now that I have been diagnosed with dystonia?

Knowledge is your best tool. Work closely with your doctor to find a treatment plan that works for you.  There are plenty of interventions that can be done to help alleviate symptoms.  Be sure to alert your doctor if your treatment plan has undesirable side effects or if you have questions or concerns.  Remember to persevere and keep a positive attitude.