Hello. Gelastic Seizures and coping

Bluesbrkr

New
Messages
77
Reaction score
0
Points
0
Hello everyone,

I was diagnosed about a year and a half ago with adult onset Gelastic seizures. I was told that this is a VERY rare form of epilepsy. only about 15 - 20 cases a year in the USA. I have had no luck in finding others who have my condition, which makes it even harder to deal with. I'd love to find someone else who has this and compare notes.

In addition, I've been having a hard time lately dealing with the overall condition. I find I get pretty depressed some days and found this site hoping to have someone to talk to and get support. I am on anti-depressants, but I'm sure many of you know the occasional feeling of despair. Some days, I just can't stand the meds. I'll do fine for a couple of days, then have several mini-seizures, and lately, I have had a hard time dealing.

I talk to my wife about it, and she is very supportive of me, but she doesn't, and can't, understand how I really feel and how hard it can be.

Anyway, I'm not sure exactly what i'm looking for here.. maybe just someone who really understands to share with.

I look forward to meeting some of you and seeing what this forum may bring.

thanks,
Paul
 

epileric

New
Messages
4,500
Reaction score
0
Points
0
Welcome Bluesbrkr

I never knew what gelastic meant but after looking it up just now I realized that almost all my seizures as a kid were gelastic seizures. We just used to call them "laughing spells". That made more sense to me as a little kid.

I only get that type of seizures on rare occasion now but I do still get them.

Off topic but may I ask..... Is your username in any reference to John Mayalls group?
 

Bluesbrkr

New
Messages
77
Reaction score
0
Points
0
hi epileric

Gelastic seizures are rare enough, but adult onset is extremely rare. Fortunately, they are pretty much under control now, but I have several small breakthrough ones a day, which are more like tingling adrenaline surges that only last 5 to 10 seconds.

And YES... my username is definitely related from the old John Mayall and Bluesbreakers album... Big fan! been playing guitar since I was 12 and Clapton is one of my big influences.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,499
Reaction score
6
Points
148
Hi Paul, welcome to CWE!

I don't know if we have any members with Gelastic Seizures, but I do know that most CWE members are well-acquainted with the frustrations and despair that epilepsy can bring. You're in good company, the folks here "get it" about seizure disorders -- even rare ones like yours.

Some refractory seizures respond to neurofeedback -- any chance that might help with yours? You can read more about that here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 

epileric

New
Messages
4,500
Reaction score
0
Points
0
Gelastic seizures are rare enough, but adult onset is extremely rare. Fortunately, they are pretty much under control now, but I have several small breakthrough ones a day, which are more like tingling adrenaline surges that only last 5 to 10 seconds.
Good that they're under control, I know that I'd occasionally have to make excuses for laughing at inopportune moments.

And YES... my username is definitely related from the old John Mayall and Bluesbreakers album... Big fan! been playing guitar since I was 12 and Clapton is one of my big influences.
:tup:

Like Nakamova said, you're in good company here as well the company of at least one other blues/bluesbreaker fan. (I think I'm showing my age)
 

jyearta

New
Messages
1,550
Reaction score
0
Points
0
:paperbag:I have never heard of this type of seizure.

I just looked it up.

I sometimes get the giggles for no reason, and can't stop. I don't think this is same as you, but I do understand.

It's hard to explan to people when you are in serious situation and I just start laughing.

I hope in some way, this will let you know you are not alone.
 

Krismutt

New
Messages
12
Reaction score
0
Points
0
Hello,

My daughter was diagnosed last year at age 10 with gelastic seizure disorder after a couple of months of having these seizures that we attributed to daydreaming at first. Her seizures are under control and she actually had a clear EEG in July but they said it doesn't mean much until she goes for two full years without one. She was born with a coritcal dysplasia that we had no idea about until the MRI last year showing the lesion in her occipital region. Its too small to remove without damaging too much good tissue. So she is on daily meds until who knows when.

She too is in that rare field being that she was 10 before it started and her cause is not a normal indication for gelastic because of its location. Although she wasn't diagnosed with other seizures we feel she has simple partial seizures along with the gelastic because of her actions because after she laughs a bit she phases out and has no awareness around her.

It was a difficult time the first few months but things have gotten better. She focuses on music, guitar and dance and that really keeps her going.

So yes you are not alone. I too look for people to talk to about it so that I can educate my daughter as much as possible as well as others.
 

Bluesbrkr

New
Messages
77
Reaction score
0
Points
0
Hello Krismutt,

Thanks for the words of support! As I'm sure you know, it's rare to find ANYONE who even knows what gelastic seizures are. There is SO little information on the internet. When I went in for my video EEG at the epilepsy center, all the nurses came running into the room when I would have one, since most had never heard of it, much less seen one. They all sat and watched the video tapes and talked with me about it.

They've done just about every test my Neuro can think of (and she's the director of the clinic) and have come up empty. Everything looks normal.

While the Laughing / outburst side of it is under control at this point, I still have several simple partials week, if not several a day, so I'm sure your feelings on that are right on. Mine are more like adrenaline rushes with short breaths and some twitching. They last about 30 seconds, but I am completely aware while they happen.

It is definitely hard the first few months, but as things settled down a bit, and you know what to expect, things get better and you learn to cope with it most of the time. This forum has been a true blessing for me. It has been wonderful to talk with people who really understand.

Wonderful that your daughter is a musician and guitarist. I've been playing my whole life. I went to music school and have taught and performed guitar for YEARS. It is a great outlet, develops creativity, and is wonderful to exercise the brain! Tell her to keep it up!

Thanks for sharing. I hope things go well with your daughter, and if you ever want to talk about it, ask questions, or need some support, I'd be more than happy to do what I can.
 

Krismutt

New
Messages
12
Reaction score
0
Points
0
Yes its great to be able to share stories with people who can understand. When we told my daughter's neurologist her symptoms he knew exactly what it was without hesitation. We had no idea what it was and I have spent many, many hours researching it. When we were waiting for the MRI results it was the worst week of our lives as most people with gelastic seizures have hypothalmus issues and it has substantial problems. But when we went back in and was told she had a lesion that was not affecting her hypothalmus he said it was the best outcome we could ask for because she was born with it and it will not grow.

When my daughter has her seizure her laugh is not an outburst but it sounds more like an evil giggle. She jerks her body to the right while she is having and stay stationary without knowing has had one most of the time unless its long enough for her to see time pass. The longer they are is when she feels somewhat of an aura but she just told me that recently.

Most of my family and friends don't get it. They don't think its a big deal or that we need to take precautions that the doctor has told us about. Its frustrating. But we don't tell her that.

Yes my daughter is quite the performer. She has been playing for 4 years now long before we knew. She loves music and performing in front of a crowd. It is an awesome outlet and we encourage her all the time.

Thank you for listening as well. And we are here as well for you and others!
 

era

New
Messages
1
Reaction score
0
Points
0
Gelastic Seizures

Hi, I have these too. I've had them for as long as I can remember - since I was a kid and I'm now 31.

Sometimes I'll get 20 a day, and other times I'll go a month without one. It's all very random and I don't know what the triggers are - if any. I've never been able to figure it out. I've had an MRI and I'm clear.

I've never been on medication, mainly because noone has ever believed that I can't control the laughing - they just called them "laughing fits" and thought it was made up. The advent of the internet has been a lovely thing for me - I now know and can prove that this thing does actually exist! And it has a name.

Either way, I've become very good at hiding the seizures, so long as I'm not needing to talk while I'm having one (it changes my voice quality because I'm trying to stifle laughter). Also, I tend to find that one side of my face reacts and the other doesn't.

It can be a bit frustrating because they come on very suddenly, but I've learnt to deal with it.

Happy to chat if anyone needs it.
 
Messages
323
Reaction score
0
Points
0
I am 22 and I deal with adult gelastic seizures as well as Absence and GTCs...my roommates think my laughing seizures are hilarious. I remain conscious and I am aware of what's going on but I 'laugh' for maybe 20 seconds or so and they happen whenever, wherever, etc.Sometimes they happen on the heels of legitimate laughter and sometimes they lead me into a GTC.

My neurologist never believed me until we were talking in her offic about doing a week-long testing trial when I had one...she was so surprised! They are so random and come at any time( usually the most I opportune). I was my sister's maid of honour and I had a gelastic moment during her vows; crazy haha

Let me know if you'd like to talk...it's always interesting and reassuring to meet someone who deals with the exact same thing you do.
 
Messages
2
Reaction score
0
Points
0
I would like to connect you to my son somehow. Right now hes miserable.. But I'm hopeful after reading your blog
 
Messages
24
Reaction score
0
Points
0
I was wondering if I could get you to listen while I tell my tale.
Gelastic seizures what happens to me. How it affected my life and is still. Is someone else having the same problems or symptoms. What kind of suggestions to help etc. You'll have to be patient with me, if you don't really like to get into a lot of reading let me know and I'll see if there is someone else out there. TIA
P.S. does all the info we put here go to the internet to be read by just anyone? If it does then I don't really want to use this site for personal communication. In that case I would give you my email and I would use yours
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,499
Reaction score
6
Points
148
fleshhopw --

For privacy you can use Private Messaging, or post in the "Padded Room" forum here. The "Padded Room" is semi-private:
Threads/posts in the Padded Room are only visible to logged in members now. While this will shield posts from search engines and guests, if someone knows you are a member here and is trying to read things you are writing, they can always register an account and read in here, so privacy is not guaranteed.
 
Messages
24
Reaction score
0
Points
0
where can I find info on the padded room and in the padded room can someone continue on with the same thread?
 

KarenB

New
Messages
1,067
Reaction score
0
Points
0
Have any of you with gelastic seizures had an MRI with the specific protocol for Hypothalamic Hamartoma? This tumor is often overlooked in regular MRIs.

Here is the protocol used at Barrows:

Pre-Treatment MRI Protocol

Following is MR imaging protocol.

MR IMAGING PROTOCOL
HYPOTHALAMIC HAMARTOMA
Division of Neuro-imaging
Barrow Neurological Institute
Phoenix, Arizona

Pre-operative studies
1) 3D TI 1mm isotropic voxels
2) Sag T1 – min TE; 3mm slice, 0.5mm gap; FOV 20cm
3) Sag T2(FSE) – 2mm slice no gap; FOV 20cm
4) Cor T2(FSE) – 2mm slice no gap; FOV 16cm
5) Cor T1 – 3D SPGR; 2mm slice; FOV 24cm – recon for axial
6) Axial T2(FSE) – routine brain


Contrast may be necessary for first evaluation to exclude other lesions
Sag and Cor T2 are critical sequences
Need whole brain cortical evaluation to exclude other cause for seizure activity for initial diagnosis


Follow-Up MRI Protocol

Routine brain MRI without contrast with high resolution sagital & coronal T2 thin slices
 
Messages
4
Reaction score
0
Points
0
My son is 17 has not yet been diagnosed, but I am convinced he is having Gelastic Seizures. He was misdiagnosed with schizophrenia, but became much, much worse with the meds they gave him. He likes to work out and is very intelligent, but the bouts of laughter became so frequent, we had to pull him out of school for awhile. He went from a loquacious, eloquent speaker, to not speaking at all; only laughing and looking lost. With the psyche meds, he had his first bout of crying after laughing, and a bit of rage. He said the psyche meds made him feel dead inside. As per our research, the outbursts of laughing, this diagnosis fits. We requested phenobarbital to tide him over until the appointment, and it was like a miracle. It was like night and day from the first dosage. Within 30 minutes, he had stopped the seizures, and in an hour he was back on the computer. I am actually happy to have found this site because I was in total despair until I found hope here. We have an appointment with a neurologist in two weeks. Are there any questions I should be asking? We are requesting and EEG and Contrast and Non-Contrast MRI's. I feel this is the first glimmer of hope we have had in 3 months, since our misdiagnosis. Thank you all.
 
Messages
4
Reaction score
0
Points
0
Era, so glad you said everyone thought they were "just laughing fits." That was what some people said about my son, that he needed to control himself. So relieved to find support here.
 
Top