Seizures in patients with Batten disease are characterized by a variety of behaviors, but not every abnormal behavior is necessarily a seizure. Seizures usually occur in an unpredictable and episodic manner. They may last from a few seconds to a few minutes, with similar symptoms.

In most cases, seizures occur suddenly without any warning. However, in some cases, they are preceded by warning signs — symptoms experienced by the patient, which are less severe than a seizure. The patient is usually conscious and aware of such warning symptoms.

Types of seizure warning signs

There are two types of seizure warning signs: the signs that occur in the years preceding the first “full-blown” seizure, and; the signs that occur just before a seizure.

Seizure warning signs before the first ‘full-blown’ seizures

Some patients with Batten disease may experience warning signs for months or years before the first “full-blown” seizure occurs. These warning signs may include feeling “funny” or dizzy, or having jerking and twitching for several years. Other signs include fainting, headaches, vomiting, losing sensation in a certain parts of the body, daydreaming, and blackouts.

Seizure warning signs before every seizure

Some, but not all, patients with Batten disease experience warning signs each time a seizure is about to happen. These seizure warning signs also are known as auras that range from headaches to seeing colors.

Some patients describe experiencing unusual smells, tastes, or feelings that could not be described. Other patients report having unusual experiences such as “out-of-body” sensations, feeling detached, or their body looking different. Some patients may have a feeling of having lived a certain experience in the past, known as “déjà vu.” Other warning signs preceding seizures include daydreaming, jerking movements of an arm, leg, or body, feeling fuzzy or confused, having periods of forgetfulness, feeling tingling or numbness in a part of the body, and unexplained sleepiness or weakness.

What to do

These warning signs can be noted, tracked, and subsequently used by the healthcare team for the patient’s treatment and care. Each time a patient experiences seizure warning signs, he or she should try to reach a safe place before the seizure starts. The patient also can inform other people around them about what is going on. The patient should follow a seizure management plan and keeping the appropriate medicines or interventions ready for when a seizure occurs.

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