Symptoms, Auras, and Look-Alikes in FTLE

Because familial temporal lobe epilepsy (FTLE) often involves feelings and sensations rather than the dramatic shaking most people associate with seizures, it is frequently misunderstood. Understanding the specific symptoms of your type of FTLE is the first step toward getting the right treatment.

The “Aura” is a Seizure

In epilepsy, an aura is actually the beginning of the seizure itself ^[1]. It is a focal aware seizure, meaning the electrical activity is limited to one small part of the brain, and you are still conscious enough to experience and remember it ^[1].

Depending on which family “neighborhood” of FTLE you have—mesial or lateral—your focal aware seizures will feel very different.

1. Mesial Symptoms (The Inner Feeling)

The mesial temporal lobe is deep inside the brain and is closely tied to memory and emotion. If your seizures start here (FMTLE), you may experience:

• Déjà Vu: An intense, sometimes overwhelming feeling that you have lived this exact moment before ^[1].
• Epigastric Rising: A strange sensation that starts in the stomach and moves up toward the chest or throat, often described like a “roller coaster” feeling ^[2].
• Sudden Fear or Anxiety: A wave of intense dread or panic that appears out of nowhere, unrelated to what is happening around you ^[1].
• Derealization: A feeling that the world around you is suddenly “fake,” “dreamlike,” or distant ^[2].

2. Lateral Symptoms (The Auditory Experience)

The lateral (side) part of the temporal lobe processes sound and language. If your family has this type (often called FEAF), your focal aware seizures usually involve:

• Auditory Distortions: Hearing buzzing, humming, or ringing sounds that aren’t there ^[3].
• Complex Sounds: Occasionally hearing voices or music ^[4].
• Receptive Aphasia: A sudden, brief inability to understand what people are saying, even though you can hear their voices clearly ^[5].
• Vertigo: A sudden feeling of spinning or dizziness ^[6].

When Awareness Fades

If the electrical activity spreads further into the brain, the “aura” may progress into a focal impaired awareness seizure. At this point, you may no longer be fully “there,” and you likely won’t remember what happens next ^[7]. During this phase, observers might see:

• Behavioral Arrest: You suddenly stop what you are doing and stare blankly into space ^[7].
• Automatisms: These are involuntary, repetitive movements that look semi-purposeful but aren’t. Common examples include:
  • Oral: Lip-smacking, chewing, or repeated swallowing ^[8].
  • Manual: Picking at your clothes, rubbing your hands together, or fumbling with objects ^[8].
• Dystonic Posturing: One arm may stiffen or move into an unusual position ^[8].

Look-Alikes and Misdiagnosis

Because the symptoms of FTLE—like fear, déjà vu, and “spacing out”—overlap so much with other conditions, many patients are misdiagnosed before the family connection is discovered ^[1].

Panic Attacks vs. Seizures

The sudden fear and stomach sensations of a mesial temporal seizure are often mistaken for a panic attack. While brief duration (seconds to a minute) and stereotypy (feeling exactly the same every single time) are clues that point toward epilepsy, panic attacks can also be unexpected and stereotyped ^[1][9]. Importantly, having epilepsy does not rule out having an anxiety disorder; the two conditions can and frequently do coexist, and mental health treatment remains appropriate when needed.

Psychiatric and Functional Conditions

Symptoms like “dreamlike states” or hearing sounds can be mislabeled as primary psychiatric issues like schizophrenia or dissociation. In FTLE, these are brief electrical events in the brain, though mental health conditions can also coexist ^[1][2].

Additionally, some individuals experience functional seizures (often called PNES). Functional seizures are real, involuntary episodes that occur without abnormal electrical brain discharges. They are not simply “triggered by psychological distress,” and epilepsy and functional seizures can coexist in the same person. Distinguishing between them often involves a video-EEG to see if physical movements match electrical activity ^[10][11]. However, a routine scalp EEG can sometimes miss abnormal electrical activity deep in the mesial temporal lobe, so capturing a typical event is essential for accuracy.