Hello. Gelastic Seizures and coping

Bluesbrkr

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I have had Gelastic Seizures for about 3 years now. I was diagnosed at age 40. they just came out of nowhere. no previous sign or indications. It is definitely a frustrating and ultra rare form of epilepsy. So many doctors have even heard of it, much less treated it. I have even talked to some neuros who are not familiar with it. I was very fortunate to find a neurologist here in Salt Lake City who is familiar with it and am doing very well at this point. I went through the frustration and social anxiety as well. I felt hopeless often. All I can tell you is that it does get better. As for tests, my neuro went straight for the MRI and then a video EEG.

I would highly recommend finding not only a neurologist, but one who specializes in epilepsy and is familiar with Gelastic Seizures. Funny thing was, when I was referred to the specialist, I was told it would take 3 months to get in to see her. (put on the general seizure meds, which did help some). When they found out it was Gelastic, I was in within 5 days and in for video eegs and such almost immediately. They so rarely get to work with it that they jumped at the opportunity. Even the nurses that worked in the epilepsy clinic had heard of it, but never seen it. While I was in for the vid eeg, when ever I would have one, all the nurses would run in and then go watch the video. Pretty entertaining actually.... lol.

There is really not alot of information out there about adult onset gelastic seizures. believe me, I've scoured the internet, and, as you said, it is often misdiagnosed.

All that being said, please let me know if there is anything I can do to help. Compare notes, share my experiences, answer questions, etc. I'm glad to do whatever. It definitely helps to be able to talk to someone who has gone through, or is going through something similar. And this board has been great.. so supportive. It's a great place you've found.

Again, let me know how I can help.

Good luck
 

Bluesbrkr

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Funky,

I've been going through them for about 3 years now. started when I was 40. I'd be happy to share what I've been going through and listen to your story. It's always good to compare notes as well. feel free to private msg me and we can go from there.

Blues
 
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Bluesbrkr,
Thank you so much for the information. My son also had an appointment in 3 months, and they bumped it up to next week. I will ask this neuro if he knows of a epilepsy specialist. As I said, you have really given my family a lot of hope. Thank you for sharing your story.
 
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Hello to all. To Bluesbrkr, I'm excited, not for you condition, but to know that someone else shares the adult gelastic seizure condition and can relate to some of the things I've been through. Hopefully we can be helpful to each other in some way. This all started after the birth of my child in my 30's and I'm now 51. My seizures did not start out gelastic but "improved" to that after starting out with my sense of unacconted for time, blank staring, and one episode seizure where I fell to the floor and clenched up. After EEGs and MRIs they were determined to be complex partial. After lots of medications and combinations of meds my seizures changed from blank staring/absence to these giggling spells that I was not aware of until my husband witnessed it. He thought I was laughing about the inches of rain water that accumulated in the shoes he'd left outside. It was funny but I continued giggling at nothing. I even talk and walk during part of my gelastics saying things like I'm tired and yawning. They even involve me walking from one room to another and one time I down a flight of stairs that I didn't realize until afterward. But usually I stay put. It's like by body is on auto pilot; or perhaps the seizure is over and my consciousness is slowly returning. The spells last only a few minutes. My family and coworkers are familiar with the giggling sound and have described it "like a little girl" "freaky" and "weird". None of those descriptions make me feel good but at least they're honest and I appreciate that. I've never been videotaped but gave permission to friends and family to do so because I've never seen it.
I'm on Keppra , Dilantin and Gabapentin daily and don't have a seizure very often unless I've not had enough rest, extremely stressed or eaten too many sweets. Also have to avoid strobe lighting. Not able to drive at this time. Thanks for reading. Hope this helps someone.
 

KarenB

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Do any of you wake up at night giggling? Or maybe not really wake up, but have some family or friend tell you that you were giggling in your sleep?

This is how our Jonathan's (age 9) gelastic seizures started. We didn't realize they were seizures at the time (he has other, very obvious, tonic clonic and tonic seizures). We just thought he was having a funny dream, and wasn't it just so cute?

Then, one day, when I picked him up at school, his teacher reported that he had been laughing ALL DAY -- and nothing was especially funny. That happened once or twice over the next couple months, but we really didn't think that much about it -- he has lots of odd quirks.

Then, one day we were going to fly from the east coast over to the west coast for our daughter's college graduation. We had a one-hour drive to the airport, and Jonathan is usually perfectly happy in the car, but he cried all the way to the airport (we later found out that this can be part of a gelastic seizure). We popped in his favorite CD, tried to offer him a drink or a little snack, but he continued crying (and this is a child who NEVER cries). We were just dreading that long plane trip across the country -- what if he cried the whole way?? Finally, we got to the airport, and ate supper before boarding, and he stopped crying and then started giggling.

He giggled all the way from Florida to Texas, giggled all the way through the transfer to the new plane, and then giggled all the way to California. The other passengers thought he was adorable, and it was certainly better than crying!! The next morning he woke up crying again. But by mid day the crying had turned into giggling again He giggled all that day and the next. Then things pretty much went back to normal, but the next several months.

Then, in August, we were in Asia, and had a trip to Loas from Bangkok, and he wasn't able to sleep much during the travels, and so got overtired, and that set off another spell. He started giggling around lunch time, and giggled the rest of the afternoon, through the evening, and continued giggling when we were all trying to settle down to bed. He refused to sleep -- just giggled.

Two days later, his other seizures -- which had been few and far between -- came back with a vengeance. He began having two or three bad tonic clonic seizures every night.

He was finally put on Zonegran, which controlled the tonic clonics (still has tonics), and mostly stopped the gelastics. We didn't even know that there was such a thing as a gelastic seizure until someone here tipped us off (I think Nakamova). Every once in a while he'll wake up giggling and sit up, and it scares me -- is it a happy dream or a seizure?
 
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Gelastic seizure when sleeping?

I've been told by my husband that I'd had what could have been night seizures a few times where I giggled a bit then hugged him and said I'm tired and went back to sleep. Not sure if this is just tiredness, sleep talking or a seizure. I had a gelastic laughing seizure once on an airplane too. This was after having a six-hour flight delay and sitting in the airport all that time, then going from the west coast to east coast. I was talking with a lady sitting next to me and felt the aura coming, then it happened. It lasted less than two minutes. So she wouldn't think I was being rude, I explained my condition and apologized if it frightened her. Tiredness, not eating properly, stress and eating too many sweets have been triggers for me. I hope your son gets the right med or combination that will help. Sometimes it takes a while but they can be controlled to a certain extent, but breakthrough seizures may happen from time to time. I basically had to go on the internet an diagnose myself when the gelastic seizures started. My neurologist had never heard of them. Best wishes for you and your son. Keep us posted.
 

KarenB

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Yes, well, the Zonegran is mostly controlling them. We haven't had any of those all day episodes. There were a couple times (when he was also having a lot of tonics) that I think he was having very brief episodes -- just a minute or two -- it was sort of a wierd laughter -- not a true giggle.

But during this time period, he never had any real laughter or smiles -- just that eerie giggle at nothing funny. That was often followed by a tonic seizure.

His seizures got pretty bad, and he had to be hospitalized in October, and during that time, he had an MRI to rule out a Hypothalamic Harmotoma (which can be a cause of gelastic seizures in children (and sometimes younger adults). That came out clear.

His neurologist took him off of all his other seizure meds (Diazepam and Keppra) except the Zonegran, and increased that, and we also tweaked the Ketogenic Diet, and that seems to have almost completely eliminated both the tonics and the gelastics. (it seemed that being over-medicated was causing some of the problems)

Now he's laughing and smiling again at things that are really funny. Nice to see that again.
 

DeenaCann

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Also diagnosed as adult

Hello,

I completely understand and you are not alone. I am 35 and was just diagnosed with gelastic seizures, simple partial and tonic seizures. I have no prior history of epilepsy. It started about 4 years ago but we didn't realize that they were seizures. The tonic one's are what sent us to the Dr. 2 weeks ago.

I too can't find anything on the internet. Most of what I find is children, for any type of Epilepsy. Even if they are adults now, they were diagnosed as a child.

I go for my MRI tomorrow to look for a hypothalmic hamaratoma. I'll let you know what they find. I just started by medications today, so we'll see how that goes. However, I did want to describe my gelastic seizures as many here have mentioned the giggles and I really don't giggle at all.

What happens to me is an INTENSE feeling of love of happiness. Like when you first fall in love and you are just so overwhelmed. Sometimes I will just tell my husband I love you in a short burst, like I have to get it out. Or the really 'bad' ones I get dizzy and 'out of it' like simple partial and then I start smiling. I'm completely aware of what is going on but I cannot respond.

I had one while in the Dr office and he said that is a simple partial gelastic, a combination of two. I start smiling and feel happy, like I am drugged before going into a surgery or like when you get laughing gas or something. These will last 2 or so minutes. Other one's will just be a few seconds when I feel like shouting out my love.

Other times I get angry or rage over nothing, or I'll feel light headed then my eyes mist up like I"m going to cry.

I've had 6 tonic seizures now. I can't breathe and these last 3.5 minutes.

I too have bursts where it feels like adrenaline rushes through my body in a wave, out to my extremities. I get goose bumps out of no where etc.

Like I said, I just started medication TODAY. I have no idea what it will do and my MRI is tomorrow to confirm if I have an HH. How in the world this wasn't noticed all my life I have no idea. But looking back now, we think this has been going on since childhood but so mild that we never noticed, but who knows! Anyway, you are NOT alone! It is nice for me to find someone else too!

Oh and I HATE that I'm not allowed to drive anymore!
 

KarenB

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Well, the good news is that you most likely don't have a Harmotoma, because you probably would have started having symptoms long before your thirties.

Some of your symptoms sound to me like temporal lobe seizures -- which are also sometimes associated with gelastic seizures (this is what our son has).

Just curious -- what meds did your doc put you on?
 

DeenaCann

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Hi!

Yes, it is very rare to have an HH, but I do have other symptoms that are leading them to want to look for that. From what I have read and what the Dr did tell me it is possible that you can have an HH and go un-diagnosed until adulthood, but even more rare than having an HH in the first place. So I'm not holding out on that.

I was put on Trileptal today. Over the next two weeks he is building up my dosage. I'm new to all this and know nothing about epilepsy. It also seems like no one has seizure behavior the same as the next person even if they are the same seizure type, which makes it harder to understand.
 

stuartbungle

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Hi bluesbrkr
I was diagnosed with Gelastic dycrastic seizures September 2011, believe i'd been having them for maybe 3 years, never realized (although they were longer lasting), its something that happens when you find something really funny, but couldn't really explain when it happened when having a conversation about something serious but i'd just sort of apologize/ crack a joke to get round it. Only when someone pointed out it appeared that i was doing cocaine in the pub (seriously each to there own but I don't do that kinda thing) - Took me about 4 days of solid googling to find that it was a cps - and i got it sorted out, thru my radiologist (whom has been asking if i had seizures since about 2005 where they saw a dnet in my right temporal lobe, cause of those pretty pictures they take of my brain from a previous problem that they are checking on).
slightly gobsmacked, but find the hardest part (as you said not a lot of info about them)
is on the odd occasion you have to explain to people, they look at you with the look that your poking fun.
 
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My son is going through the same thing as you. He also had all the tests and nothing showing.
 

TheresaSC

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Thank you all. My son is 6 yrs old and has GELASTIC seizures. I've seen more laughing than crying. This is amazing what I'm learning on here. He could not take kepra. He s developmentally delayed & non-verbal & doesn't walk w/o assistance. He also laughs and looses muscle control & can fall. I've had a time with him for sure, but he's my sweet boy!
 

aehasting

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Finally Something about adult onset Gelastic Seizures!!! I don't have them but my Fiance does. 2 1/2 years ago he was run over by a bus... (alcohol was involved) but he had a broken hip they did MRI's and found nothing. 11 months after that he started to say things that didn't make sense then laugh and cry at the same time for up to 5 min and couldn't stop, he also looked like he was shaking his head yes. (he doesn't do the head thing anymore). We went from hospital to hospital and no one could figure it out. They stopped for a while so he stopped going to the Dr. Well they started back up 4 months ago. We saw a different Dr. they did an MRI and EEG but found nothing but last week he told us he was pretty sure they are Gelastic seizures stemming from the accident. He put him on Kepra and that made things WAY worse. The next morning he couldn't stand, saying words that were not really words went into many seizures. So we stopped that but the last few days have been horrible. They are switching his meds but I just don't know what to do. I would feel so much better if there was more information about them. Anyone have any stemming from an accident? Oh and btw he is 25
 

Nakamova

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Hi aehasting, welcome to CWE!

I'm sorry you and your fiance are struggling with this. Hang in there! There are a lot of anti-seizure meds, so the next one may do the trick. You might also ask about treatment with ACTH (see http://adc.bmj.com/content/81/3/278.9.full) a hormone that was used successfully to treat the seizures in one case.

I assume that pseudobulbar palsy (http://en.wikipedia.org/wiki/Pseudobulbar_palsy) has been ruled out, but if that's still a possible diagnosis there are treatments with tricyclics or SSRIs that might help.
 

Haircut

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Hi, My seven year old daughter has just been diagnosed with Gelastic Epilepsy, she has them every 15 minutes and has now been on medication for two weeks and there is some improvement. The MRI didn't show a tumour, but we are due to see the Neurosurgeon within the next week, who might shed some light on to why this is happening. This all started a month ago, with no signs of anything previously. It feels so devasting, if anyone can give me some hope then please do.
 

Nakamova

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Hi Haircut -- welcome! I'm sorry for you and your daughter. Hang in there -- it can sometimes take awhile for the meds to kick in. It can also take a bit of trial-and-error to find the right med at the right dose. I don't have gelastic seizures myself, but perhaps others will be able to chime in with their experiences.
 

Lang709

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Hello bluesbrkr, does any of this sound familiar since you have been Diagnosed with gelastic seizures? Ever since I was born, I've had these "laughing fits" every night before I fell asleep. As I got older, they would occur during the day if I were tired or stressed. It has happened for several years into my early adulthood, and nothing has come of it, so my family took it as just something I did. Lately, perhaps due to stress or some other unknown factor, they have been increasing in frequency and strength. Worried that something may be medically wrong, I am going to have tests done soon to discover what is causing these seizures. We have thought it to be gelastic seizures but are not sure because it seems like there is no one out there that has it... especially as an adult. I can't really put into words what my laughing spells are like.. I get this odd rush of adrenaline a few seconds before they come and then the spell begins. It's an intense adrenaline rush and seems like fireworks going off in my neurons (as silly as that sounds, it is the closest I can manage to describing the intensity). The laughing will subside after about 10 seconds. Sometimes I am drained afterwards or fired up and angry for nothing. Regardless, these seizures are something that I have to deal with and hide from my friends. Because of its rare form, it is hard to find support.
 
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