Gelastic seizures are the most specific symptom associated with hypothalamic hamartomas (HH). These are also referred to as laughing seizures although not all individuals with gelastic seizures present with a true laughing sound. They are usually brief, often lasting less than 30 seconds, however they can go longer – sometimes up to a few minutes in duration. They can be occasional or very frequent, with hundreds of seizures per day in more severely affected individuals.

Gelastic seizures can be associated with little or no change in consciousness, although making this determination in infants and young children can be challenging. Although gelastics may sound like laughter, individuals  generally do not experience happy feelings, and most family members can readily distinguish the gelastic seizure from true laughter. Some individuals may also experience seizures that more closely resemble crying rather than laughing. These crying seizures are called dacrystic seizures and may occur with or without the presence of gelastic seizures.

Gelastic seizures can also be quite subtle. They are commonly mistaken for other conditions, particularly during early infancy, including colic and gastroesophageal reflux disease (GERD).

When Laughing or Crying is a Seizure

Gelastic Seizure – Most Common Characteristics:

  • Often look like a forced smile, sometimes only a one-sided grin. Eyes may dilate and one eye may droop.
  • Laughter, grunting or vocalization may be very rhythmic and repeat several times.
  • May include eyes or head moving to the side, lip-smacking, mumbling and fidgeting of the hands.
  • May occur infrequently (weekly, monthly) or they may be frequent (daily, hourly or several events in one hour).
  • May be brief and last less than 30 seconds, or they may go on for longer periods lasting minutes.
  • Often occur as an individual is dropping off to sleep. They may occur throughout the night, waking the individual. It is not unusual for the individual to drop right back to sleep.
  • They can be disconcerting to the individual and they may feel the need to run. They may feel they are running from something uncomfortable or not even know why they are running.
  • May be unsettling to the individual because, for many, they cannot be completely suppressed – only covered up with a different vocalization or over emphasized laugh.
  • Are not usually painful but may leave a person feeling tired.
  • May be mis-diagnosed, especially in toddlers and younger children/adults as “tics”, “quirky laugh”, acid reflux, or autistic behaviors.
  • Some individuals have unpleasant sensations in their stomach prior to or in conjunction with a gelastic seizure and this can lead to an incorrect diagnosis of gastrointestinal distress or acid reflux.
  • Can be triggered by seemingly unrelated events like loud noises, fearful responses, excitement, anxiety, anger, fatigue, stress, or frustration.
  • May not present as a laugh or giggle, but rather an unusual type of breathing for some.
  • The laugh during a gelastic seizure is often different than the individual’s true laughter.
  • There may be visual and auditory disturbances, ranging from exaggerated sounds and distorted vision to hallucinations.

As you can see from the list above, gelastic and dacrystic seizures do not have one set of manifestations for everyone. But for each individual, a pattern often develops and becomes very recognizable.

Gelastic and Dacrystic Seizure Videos

Parents, caregivers, friends and family often ask what does a gelastic seizure “look” and “feel” like?

So we asked some adults with HH to share their experiences:

Carrie F. (Adult with HH)

“I am going to describe my gelastics in two different ways but both share very similar similarities it is purely dependent on the severity.

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If it is a very brief gelastic, I don’t really feel a build up to them.  I am just hit with a small rising sensation from my tummy to my throat and can feel my face lifting on the one side and my eyes dilate.  I don’t always laugh with the brief ones as I have some level of control and am still conscious while they happen so I am able to carry on with whatever activity I am doing.

However, to an outsider that knows me they will realize I am having a seizure purely because of the grimace look – but a stranger would be none the wiser!  The less intense ones I would say have a less fear feeling because the rising sensation is not so intense. Never the less, when it does happen you almost get a sense of relief afterwards.

The more intense ones I can feel building up for a while before hand.  My heart almost feels like it’s beating differently and again the fear feeling is coming and going with the rising sensation coming up and down continuously beforehand, almost like it’s brewing and getting stronger the more it happens.  When the buildup gets to a certain stage, the rising sensation (with a fear feeling) will come from my tummy to my throat and follows with an overwhelming feeling that the only way to let it out is with the laughter that feels so intense you cannot control it.  It’s a hollow sound in comparison to a normal laugh and would happen at inappropriate times.  Again though, once it’s out of my system, I get a sense of relief and I will have the same expressions on my face but much more prominent.

The best way to describe them is when you trip up a step and you get that shock feeling that is like the rising sensation.  Or when you are on a ride the buildup of adrenaline is like the buildup prior to the gelastic and once the ride has ended you feel relieved.  Well, this is how it feels when the gelastic and the buildup is over!

It is usually the intense ones that I tend to feel a slight loss of awareness.  Sometimes because they have briefly gone to the next stage as a complex seizure”.

Megan K. (Adult with HH)

It’s been over 17 years since I last had a full gelastic. When on the wrong meds I’ve had auras. The aura starts with a sudden zing of feeling really giddy for no reason. I also feel very distracted from I’m doing.

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Prior to surgery, the aura felt the same. Next thing I knew I would be in a different location than I was before it started. Usually I was in a bathroom, having felt like I was about to lose bladder control during the seizure. While I was having the seizure, I would often have hallucinations of a man in a black trench coat. In my mind we had conversations.”

Hollie M. (Age 16)

My gelastic seizure felt like a quick rush of butterflies and heat that  went from my tummy right to my head. It felt like I was on a really quick rollercoaster and sometimes I even got a floating sensation.

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I felt extremely happy as if everything in life was perfect. (Sometimes I miss this feeling!) This was my warning signal that the laugh was coming. When I was laughing I felt slightly out of control particularly because I couldn’t stop it and if I tried to hide it, I ended up with a strange grin or smirk on my face. My heart felt like it was beating really fast and sometimes I felt the sensation of my heart beating in my head. After my laugh ended, I always felt a quick surge of anger. My fists and muscles would tense up really tightly, and sometimes I felt like I had to clutch onto something or squeeze something. Once my muscles relaxed, I would feel emotional and want to cry. I was told when I was a baby my laugh would have actually turned into a cry. It felt like every single emotion had just happened all at once.

Erica W. (Caregiver for her daughter Grace)

Grace’s gelastics as an infant and toddler didn’t present with the hallmark laugh as many others with HH experience. Grace’s gelastics would start with a startled or surprised expression with her eyes dilating and rolling up and to the side.

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Her mouth would transform into a half-smile or grimace. Her breathing would escalate and would sound very nasally. As the seconds passed she’d looked more distressed. When the seizure was over, she’d begin to calm herself by sucking her thumb and often would require a nap. At this early age, her triggers nearly always involved mealtime and bath time. As Grace got older the triggers and presentation of her gelastic seizures changed. After the age of 5, Grace would get very ‘happy’ moments before her gelastics. She’d begin to swing her arms back and forth and would say ‘I’m happy. My hands are happy’. This would follow with the same eye dilation, side smile/grimace and heavy breathing. As she got older, we found that she became more agitated after these episodes and we believe it may have been because she was older and more aware of what was happening to her. Although she didn’t nap as she did when she was younger these seizures definitely took a toll on her energy and mood for the remainder of the day.

Getting a Diagnosis:

Gelastic seizures associated with HH usually begin at an early age and are usually the first seizure type.  Getting a correct clinical diagnosis is almost always delayed by months or even years.  In retrospect, parents and caregivers can identify the onset of peculiar laughing spells at a very early age.  Individuals and families have reported the onset of gelastic and dacrystic seizures during the first month of life, and even as early as from birth. Less commonly, some individuals with HH may not develop gelastic seizures until early adulthood.

The EEG features associated with HH and gelastic seizures can be challenging to interpret correctly – specifically because ictal recordings, obtained with the conventional placement of electrodes over the scalp, often show no change in the EEG from the ongoing background, which itself is often normal. Hence, clinicians need to be alert to this fact so as to not miss the correct diagnosis of epileptic seizures. Video EEGs may be slightly more helpful because the occurrence of a gelastic seizure can be indicated by a parent or experienced caregiver.

Gelastic seizures do not usually respond to antiepileptic drugs (AEDs).  Consequently, the timing of surgical intervention is the major decision point facing the individual, family and clinician.  If a child is only experiencing gelastic seizures and making good developmental progress, in some cases, a decision to delay surgical intervention may be appropriate.  However, under these circumstances, the individual needs to be monitored carefully for any adverse changes in symptoms. That may be new seizure types, decline in cognitive function, severe behavior challenges, or declining quality of life.

For many, if not most individuals, over time the seizures usually become more complicated, other seizure types develop, and cognitive deterioration occurs.

Things you can do to help get a correct diagnosis for gelastic or dacrystic seizures:

  • Video as many of the events as possible. Focus on the facial features and the dilation of the eyes and eye movements.
  • Keep a diary of when the events occurred. Note if there were any triggers that you can remember. Was the laughter or crying in context – was there something funny/sad that may have triggered the laughter/crying? Often times there will NOT be a reason for the behavior. The individual may seem confused as to why they were laughing or crying in the first place.
  • Look for a pattern in the events. Are they predictable over the course of the event?
  • If able, ask the individual to describe what they are feeling during the event.
  • Show the videos and event diary to your neurologist and discuss the possibility of gelastic or dacrystic seizures.