Gelastic Seizures.

[jmg121980]

Hi!! I'm really new to this, so please excuse me if I seem to ramble on!! Anyways, I'm trying to see if anyone on here has ever heard of or knows someone who suffers from Gelastic Seizures? My 12yr old son has just been diagnosed with Epilepsy and suffers from this type of seizure. We are pretty shocked and in disbelief. He has never had any type of medical condition at all. He has been an overall healthy child. Last Oct, he started to have what seemed like Anxiety attacks. He would feel slightly lightheaded, have changes in his breathing and also felt a bit of what he explained as an adreneline rush, sorta. We made an appointment with his pediatrician who then sent him to a cardiologist. The cardiologist didnt seem to find anything at all. His problem continued. It also progressed into something very strange. He would have the same strange feeling as he did before but then it would be followed by a forced laugh, which lasted just a few moments. He was unable to talk during these " Episodes". It would happen about 3 to 4 times a day. Unprovoked. So, back to the pediatrician we went. He recommended we take my son to a Neurologist. Long story short, he was admitted to the hospital and was given an EEG and MRI. The doctor told us he was suffering from seizures and that this type of seizure is really rare. Most of the time it is caused by a brain tumor or lesion. We were devastated!!! Good news, he didnt have either. So, WHAT is causing these?? They have put him on 1000mg Keppra in the morning and 1500mg at night. He has been on it for about 2 weeks. It hasnt helped at all. We are calling the Dr back next week to get his meds changed. I feel so bad for him. He is a walking zombie. His once happy care free attitude is gone. He wants to distance himself from his friends. We feel so helpless and lost........

[Earth Mother 2 Angels]

((((((jmg121980))))))

Welcome to Brain Talk! I'm glad that you found us, but I'm so very sorry for the reason you need to find us.

Both of my sons have had Gelastic Seizures. My son, Michael, had a variety of seizure types, and Gelastic was one, which appeared every so often. They were actually a relief for us from his typical 20-30 minute tonic/clonic seizures. He was nonverbal, so he was unable to explain his experience, including his aura, so I can't be of assistance to you in that respect.

My sons laugh, giggle, and are unable to stop for a few minutes to several minutes, when they have Gelastic seizures. That's how we can distinguish them from laughing from a happy feeling or thought.

Gelastic seizures, from my understanding emanate from the Hypothalamus, typically from a lesion or tumor, but in many cases, like your son, and my sons, no lesion or tumor is present. The hypothalamus also regulates body temperature. Does your son's body temperature ever fluctuate? Is he prone to unexplainable low grade fevers? This is the case with both of my sons.

Unfortunately, often there is no explanation for the sudden onset of seizures or other neurological conditions. Common culprits might be explored, such as a dormant virus or bacterial infection, or head trauma, which was overlooked. But for many, it is all a mystery.

That makes it more difficult to accept and understand. The "Why?" can be overwhelming. You may not receive an answer to that question. And that is immensely frustrating.

My guess is that regardless of the cause, the neurologist would offer the same options to treat the seizures, beginning with Anti-Epileptic Drugs (AED's as we call them here), such as the Keppra your son is taking.

All AED's:

1. Have potential adverse side effects
2. May require time and dosage adjustment to achieve therapeutic levels
3. May increase seizures or introduce new seizure types
4. May cause allergic reactions
5. May be ineffective and require changes to other AED's
6. Are not targeted to treat a specific seizure type

I know that is all very scary, but I feel that it's important for you to know the truth. Finding the right AED or combination can be a challenge. You need to weigh efficacy over side effects. The risks over the benefits.

After 2 weeks on Keppra, your neuro may suggest that your son needs to be on Keppra longer to determine whether it will eventually work. Or your neuro might decide to try another AED in conjunction with Keppra, or to replace the Keppra with another AED.

I recommend requesting a blood level to determine how well your son is utilizing the Keppra to control his seizures. It's best to have that level taken at a trough time (right before his next dose), when his level would be lowest. You might also correlate that to the timing of his seizures.

I can relate so well to your feeling of helplessness. It is absolutely draining and painful to watch your child seize and be unable to do anything to prevent or stop it. My heart goes out to you, with so much empathy.

The best thing you can do to help your son is to be an advocate for his care, to learn more about epilepsy, seizures, Gelastic seizures, AED's and their side effects. The internet is overflowing with useful and enlightening information. And knowledge is power. You are about to learn an entirely new language and become an expert in epilepsy. That is your best armor as you battle to help your son.

Please join us on Child Neurology, where most of us know exactly what you're going through and can offer you support and the benefit of our experience. You're not alone.

Only registered and activated users can see links., Click Here To Register...

Love & Light,

Rose

[jmg121980]

Thank u so much for responding!! I really apreciate u taking time to help me understand Epilepsy a lil more!! Its definitely something we are new to. U seem to have so much knowledge and experience to share. I will certainly take what u have told me and put the information to good use. When my sons neurologist calls us in a couple days, I'll be sure to to find out if and when they will be checking his blood to see if he is at the right dose of Keppra. I guess I should be patient and allow the medicine to work before I start feeling hopeless. And about the low grade fever, that's not something I have noticed with my son. He seems to be ok when it comes to that. Although, when u mentioned bacterial infection or some type of dormant infection, he did come down with a case of MRSA May of last year and then again in Jan of this year. Just like the Epilepsy, it literally came out of no where. His pediatrician told us he cld have picked it up from anywhere. And not to worry about it, its common. Now I'm starting to wonder if maybe the MRSA has played a roll in my sons illness? Hmmm. Not knowing is making me crazy. On the other hand, I need to realize things could be much worse and that the Gelastic Seizures are far less frightening than the seizures u talked about ur sons having. I couldn't imagine. My heart goes out to u!!

[Earth Mother 2 Angels]

((((((jmg121980))))))

I'm happy to help you on this journey, and I know it is very frightening for you.

Both of my sons had MRSA, which they picked up in our ER most probably. But your son's pediatrician is correct that MRSA is everywhere. Any public place, counters, door handles, ATM buttons, etc. and multiple bacteria are present. Many people are colonized with MRSA, which means they carry it in a dormant state, with no symptoms. However, any kind of injury or infection can activate MRSA.

My sons had a seizure disorder before they contracted MRSA, so there wasn't a correlation there for them. You might try Goggling MRSA and seizures, as well as check the side effects of the antibiotic he was given (probably Vancomycin?) to see whether any connection has been noted. You can check the antibiotic by using the Drug Info link at the top of our pages here on Brain Talk.

Another thought occurred to me ~ your son is about to enter puberty. This is a prime time for hormonal imbalance, which can sometimes result in seizures. Jon's (my son) seizures have occurred primarily at times of hormonal change for males: 2, 13, 18, 26, 40's. This is something you may want to consider. You might want to have his thyroid checked (blood draw), to see whether he has low thyroid levels.

Once again, I encourage you to join us on the Child Neurology forum. You need all of the support you can get, and that's what we're here for!

Love & Light,

Rose

[jmg121980]

Well, I find myself back on here hoping to find out a lil more info about the seizures my son is having. The last time I was on here, I had recieved some really good suggestions. Altho, my sons doctors have yet to return any of my calls. Ugh. I just don't understand. Anyways, my son has not responded to the 2500mg of Keppra the doctor had put him on, at all. He continues to have atleast 6 seizures, maybe more, every nite. They usually start from the time he lays down for bed until he wakes at 10am to take his meds. Stil, they begin with an Aura, followed by the Gelastic Seizure. He stil isn't able to verbally respond to me but strangely speaks uncontrollably inbetween his forced laugh. He says the same thing everytime. Its so bizarre. After his seizure is over, he has no idea he was speaking. He only knows he was laughing. He tells me its as if he was in his own lil world. I really wish his doctors would return my calls. Its very frustrating. Hopefully, when iwe go on the 28th of this month, we will be able to figure out what is going on. I would like to kno why he has most of his seizures at night? I'd also like to kno why he speaks uncontrollably?

[Earth Mother 2 Angels]

((((((jmg121980))))))

Seizures occurring at bedtime or upon awakening are not uncommon. Both of my boys' seizures are sleep-associated. I don't know the reason for this phenomenon. I just know that it's common.

Be sure to mention this to your son's neuro at your visit next week. He might suggest a sleep study or a video EEG in the hospital. Do you have a video camcorder? If so, I suggest that you video your son's seizures and show them to the doctor.

The reason your son speaks uncontrollably is the same reason that he laughs uncontrollably. This is another manifestation of a Gelastic seizure.

Unfortunately, you don't seem to be receiving very many responses here to your posts (other than mine, that is). Please post a new thread on the Child Neurology forum, where you will connect with parents of children with seizures, not necessarily Gelastic, but still seizures, and who have vast experience with neuros, meds, tests, etc. Come on over to Child Neuro, where you will get a bit more help.

Love & Light,

Rose

[swilliams1265]

Hello,

I am a 34 year old female who was diagnosed with gelastic (laughing) seizures 9 years ago. I, too, have been allergic to most medicine and the only one that remotely helped was Keppra. I was on 3000mg daily. A good daily schedule helps. I find that not getting enough sleep really compounds the problems. I can have as few as 1 a week to upwards of 50 a day. I would be happy to talk to you if you would like.

Stephanie

[funnylegs4]

I don't know too much about seizures except some stuff I learned in medical documentaries. I heard once that there can be brain damage but sometimes MRI's etc don't pick it up(maybe because it is mild). I'm not sure if that is true or not. As to him wanting to be away from friends, he may be embarrassed about the seizures and/or not want to scare his friends by having a seizure in front of them. You should figure out a way for him to explain the condition to others in a way he is comfortable with. Wish I could help more! Best of luck.

[johnmcd75]

Going through similar Gelastic Epilepsy with 9 year old son

About 3 months ago we noticed our 9 year old son, who is smart and athletic, 4th grade playing 11 year old competitive soccer, was having 20-30s laughing seizures. Initially we were told it was a "tic." His seizures escalated and an MRI was scheduled. The 1T MRI showed a clean brain, free of any lesions or defects. His seizures escalated until he was having 40 per day and eventually he had a tonic clonic seizure that landed us in the ER. A great neurologist saw us immediately and put him on tegritol which controlled his seizures immediately. Unfortunately he was severely allergic to tegritol and nearly died of aplastic anemia. He was taken off and his seizures returned and he was put on Topamax which did nothing. Keppra also did nothing. Phenobarbitol was added but again he had a serious reaction that required hospitalization. Over the last 3 months he has been in the ER, ICU and regular children's hospital for 30 days. I do not want to scare you as our son's case is extremely rare. I just want to let you know that we are going through a rough time and that we have seen over 30 different doctors, each trying everything they can to make his situation better. Please feel free to contact me to talk if you ever need it. We have seen a lot in the last 3 month and have met amazing people(nurses and doctors) who all want to help.

[swilliams1265]

I wanted to share this with parents whose children suffer from gelastic seizures. As an adult that has them it is easier for me to explain what I am feeling. Children often lack a significant vocabulary to explain everything that is going on with them. This is the most accurate article that I have found that truly explains what is going on in my body and mind when this occurs. I would take the time to read this with your children and see if this is how they feel.

GELASTIC - of or pertaining to laughter; from the Greek gelastikos, 'able to laugh'.

A rare syndromal related type of neurophysical event, a gelastic seizure could best be described as a paroxysm; i.e., a sudden and involuntary outburst of emotion, action or activity.


2. General:

The medical designation seizure is a misnomer and more indicative of grand mal and petit mal epilepsy where patients drop, fall and writhe.

As well, the connotation that the patient laughs per se is misleading.

But regardless of which is the more applicable designation 'seizure' or 'paroxysm', the severity, impact and implications of the episode are in no way diminished.

During a gelastic seizure, a patient can be heard to make a repetitive noise strikingly similar to a laugh, cough, bark, or even a cry.

The telltale emotional signs of the gelastic seizure are the result of the stomach rapidly expanding and contracting; i.e., the diaphragm oscillates - the stomach vibrates.

Gelastic seizures can be experienced by day, or nocturnally (i.e. during the night); they can occur intermittently or frequently in more severe cases.

A young child whom experiences a gelastic seizure nocturnally may associate his or her 'laughter' on waking with a funny dream; e.g., being in a circus - whereas a baby will gurgle or fret.


3. Sequence of a Gelastic Seizure:

The phases that characterize the sequence of a gelastic seizure are, once experienced, usually quite consistent and predictable.

Where young children are concerned, parents and those closest to the child will become more able to distinguish the paroxysm from normal emotional and responsive behaviour.

Usually the patient might experience a sensation of fullness behind the nose, or eyes - the aura - which is indicative of the impending onset of the gelastic seizure. It is at this time that some patients describe feeling "funny in the stomach."

A patient whom experiences, and has learnt to identify the onset (aura) of a gelastic seizure, will usually remove him or herself abruptly from a group situation for fear of embarrassment, or consequences.

Between the initial aural sensation and the onset of the seizure itself, there is usually a period of between 5 to 15 seconds during which time the patient may be seen to rub his or her nose, squint their eyes, take a big deep breath, followed by a number of rapid short breaths.

As the seizure progresses the patient, still fully conscious (unless asleep), experiences deep (often euphoric) feelings of déjà vu where he or she senses and feels an intense awareness of familiarity with his or her surroundings.

During the déjà vu phase, which can last from about 15 seconds, up to a full minute or more, the patient can experience and feel a sensation akin to jumping on a trampoline.

The patient can appear dazed and become confused with his or her surroundings and feel as if he or she is somewhere else at another time.

Observers will often notice the patient's pupils are fixed and dilated.

It is at this time that the oscillating (vibration) of the patient's stomach will result in the involuntary emission of any one or more of those telltale sounds characteristically associated with a gelastic seizure: laugh, cough, bark, or even a cry.

As the déjà vu phase culminates the patient will usually be compelled to lie, or sit down.

Where a gelastic seizure occurs nocturnally (at night), the patient may awaken from his or her sleep with an acute stomach ache similar to that suffered during bouts of diarrhoea; he or she may not even remember experiencing the paroxysm itself, but the consequences of it are set in motion.

When the patient experiences a gelastic seizure during the day, he or she can experience symptoms of nausea, an acute stomach ache, convulse, or in extreme cases vomit gastric fluids.

After the gelastic seizure has run its course the patient will usually be quite exhausted and drowsy, with recovery, depending on the severity of the paroxysm, taking up to an hour.

Gelastic seizures recurring in quick succession can be quite daunting and frightening to the patient and those around them resulting in elevated adrenal levels, panic attacks and hightened irritability.

The patient can appear to be in a shock like state: pale, sweaty and shivering with uncontrollable shaking.

Adults who experience a gelastic seizure can appear and act as if they are intoxicated, so it is advisable for patients to advise family and friends of their condition to avoid any panic, misunderstandings, unnecessary confrontations, or embarrassment.

Where adults are concerned, it is advisable for patients to carry a medical card with them outlining their condition.


4. Treatment - Medication:

Many antiepileptic medications have side effects and the results of their use vary from person to person.

It should also be noted that some patients can be adversely affected when taking their medication with certain foods and drinks; particularly reactive with some seizure medications are citrus based drinks and/or foods and some fruits like mangoes.

A particularly reliable medication is the antiepileptic prescription drug Trileptal (Oxcarbazepine), but its use is affected by citrus based drinks and/or foods.

[Earth Mother 2 Angels]

((((((swilliams1265))))))

Welcome to Brain Talk Stephanie!

My goodness, 50 seizures a day! Bless your heart! Are you still on Keppra? Are you stable now, or do you still have Gelastic seizures?

Thank you for providing the information about Gelastic seizures. When my sons had Gelastic seizures, they didn't experience many of the things described. I never noticed their stomach vibrating, nor any stomach distress (no vomiting, for example). It makes sense, however, since there is a brain in the gut. And there are such things as abdominal seizures.

My sons would just suddenly begin giggling uncontrollably, sometimes to the point of nearly losing their breath.

I hope your seizures are under control now.

Hope that you'll stay with us and get to know our friendly, caring members. I'm looking forward to getting to know you.

Love & Light,

Rose

[Earth Mother 2 Angels]

((((((johnmcd75))))))

Welcome to Brain Talk!

I'm so sorry that your son is enduring such an arduous ordeal with his seizures. Adverse reactions to medications makes it so difficult to treat, I know so well.

Have any of your son's doctors thought outside of the box? By this I mean, exploring less than obvious potential causes for your sons seizures, such as environmental factors, allergies, food intolerance, a virus of some kind. No evidence of a head injury from soccer as a possible cause? Pesticides used on soccer fields to keep the grass green? I'm guessing that his folic acid and Vitamin B levels have been checked. I'm sure that he's had an extensive blood work up having been hospitalized so many times.

Have any of your son's doctors discussed non AED options to control your son's seizures? The VNS? The Ketogenic Diet? I have no idea whether either one would work to control Gelastic seizures, but it can't hurt to ask.

How about alternative, naturopathic therapies, like acupuncture or herbal supplements? Most physicians don't go there, but occasionally you may find one, who is open to the possibilities, when traditional medicine is failing.

My heart goes out to you, and to all parents, whose children are struggling with seizures. For 22 years, my son, Michael, seized nearly every day. When I say, "I understand," I truly do understand.

Please join us at Child Neurology, where you will meet some fantastic parents, who will offer you support, compassion and a world of knowledge and experience.

Only registered and activated users can see links., Click Here To Register...

Love & Light,

Rose

[swilliams1265]

Rose,

I am currently not on any medicines. I had a lot of adverse reactions to Keppra. Keppra Rage was one of them. For the most part my seizures are okay. Not right now though. I am having so many and it is so hard to get into a neurologist. My insurance no longer carries my old neuro so now I have waiting a week for a referral having as many as 100 seizures a day. On the bright side, I am getting abs of steel from all the laughter. Thank you for your kind words.

[johnmcd75]

How did your son's visit to the doctor go?

We are currently at Stanford and have Doctors at Stanford and UCSF working to figure out a solution. Two days ago he had 40-50 gelastic seizures and a generalized tonic clonic seizure. Since he has had 40 each day and is on 2 different meds. Apparently thee are very hard to control.

Let me know how everything went, I can get you any info from our end as we have seen a lot over the last 2 months.

[Earth Mother 2 Angels]

((((((Stephanie))))))

I'm so sorry that you are having 100 seizures a day! To me, that constitutes status, and you should be seen immediately by a neurologist, if not admitted to a hospital for treatment. Please call your insurance company tomorrow and demand a referral to a neuro, explaining that you are seizing nearly non stop. In your shoes, I would call them every day and hound them until they made the referral.

Options need to be explored for you, like alternative treatments, a VNS, other AED's, diet changes, hormones, anything and everything needs to be discussed as a possible treatment for you. What would happen if you showed up at the ER? Would your insurance cover it?

My heart just goes out to you, and to all of our BT friends, who are coping with unrelenting seizures. I know, from my son's intractable seizures of 22 years, that untreated seizures beget more seizures, changes in seizure types, and an increase in frequency and duration of seizures. It's called the "Kindling Effect."

One neurologist described it to me as a record with a scratch, and the needle gets stuck on that scratch, until it wears a groove so deep that it skips the scratch to the next groove. Then wears it down, and skips again.

But the journey to find the treatment, with the most efficacy and the least side effects, is fraught with so many disappointments and failures. It is incredibly frustrating.

My prayers are with you that you get a referral immediately. Please call your insurance tomorrow and insist that you need help right now.

Keep us posted.

Love & Light,

Rose