Hello,
This is my first post here. Sorry if it's long and thanks in advance for reading through it.
I have had this issue since at least highschool, so 15 or so years. I'll give you the backstory. I experienced what I called "word attacks". Here's how a word attack goes. I'll, for lack of a better word, "hear" a single word of phrase in my head. It will sound funny to me. Not like "ha ha" funny, but like "that's a weird sounding thing and it makes me laugh" funny. I used to think I had to actually hear the word or phrase first, but I've since discovered that I can simply think of it. It's always random words, and after the word attack the same words cause nothing. So I used to think it was the words sounding funny that triggered it, I think now it's just simply that my brain is transfixed on the last words I processed (either from hearing or just thinking of them).
So here's what a word attack is like. It starts off with a tell-tale smirk and one eye sort of squints and tremors. Friends and family can spot it a mile away. I immediately disengage, stair into space, and smirk in a way I never normally do. I can't really talk, but sometimes I can squeek out a word or two. The exception is I can generally say the word or phrase that's associated with the word attack. I can walk, but it's sort of zombie like. It's kind of like my body is just slow to respond, so "take three steps" becomes "ttaaakkkee thhhrreee sstteeppppsssss", and I stagger three steps forward. It's enough that I can generally get out of a meeting at work so I don't have the word attack in front of everyone (though that has happened).
Sometimes it ends with the smirk. 5-10 seconds maybe, and it passes and I'm fine. If it continues, however, the next phase is I turn bright red in the face, I bend over at the waist and turn my head to the side, and I do this sort of inhaling laugh. Almost like a hyperventalating laugh, I "hick hick hick" on the inhales. Not to sound stereotypical, but it's what I imagine when I think of a redneck laughing at something. The whole "That there's funny pa, hick hick hick hick". Hopefully you get what I mean. This will last for, ohh, 10-30 seconds maybe? I'm fully aware the entire time, because I get to see the confused/worried faces of whoever is in the room. If it's a really bad one, I have been known to kick a bit too. I knocked a soda off the coffee table the other day.
Once it passes, I'm tounge-tied for about 20-30 seconds. If I try to speak normally, I'll stumble over the words, so I have to speak slowly. After that, I'm pretty much fine except I'm usually quite tired.
So I called them "word attacks" because of the association with words. I'm assuming they're seizures. I never really looked into it until lately because it wasn't a big problem. I was embarrased if someone saw one, but otherwise I actually enjoy having them. It's almost a euphoric feeling.
Now... that's daytime. I get them maybe once every few weeks or longer during the day. Sometimes I may go a month or two with nothing. Sometimes I'll have two in one day (very rare).
Nighttime is another story. I have them most nights, and usually more than one. At night it's much less controlled, and I flail about like I'm fighting off an attacker. I've smacked my wife a number of times. I've fallen off the bed. Some of my more common moves are pounding the bed with the side of my fist, and big flops from one side to the other. Like I'll flop over to the right side of the bed, "hick hick hick", kick the covers, fist pound five or six times, then big dramatic flop way over to the left side of the bed. I've had upwards of 10 of these on a bad night.
I've noted some things that seem to cause more than usual amounts. Staying up really late, which always confused me because you would think the more tired you are, the deeper you'd sleep. Alcohol, stress, and eating a ton of junk food right before bed all seem to trigger an increased amount as well.
I saw an actual Epileptologist (apparently there aren't many neurologists that are specialized to Epilepsy). He had me do an EEG, a sleep study, and a 24-hour observed stay. Of course I had not a single episode while on camera. I had an MRI of my brain and they found that I had a void in the speech center, which I thought was awesome because 1) it's not a tumor and 2) explains the association with words. So he said I most likely had Gelastic Epilepsy based on the laughing. As far as treatment, he said Gelastic doesn't normally respond to anticonvulsants. He said the risk is that at some point I'll have a full tonic-clonic, but if I've got 15 years without one, then I likely will never have one.
So since I have the majority at night, I never get a good nights sleep. So I had horrible daytime tiredness. I'm currently on NuVigil, which is a narcolepsy or shift-worker medication. It does the trick, and I don't have problems falling asleep during the day.
If you're still with me, thank you.
Here's where my questions come in. I saw some youtube videos of people having Gelastic seizures, and that's not what I have. I think I'm having frontal lobe seizures. Here are some tidbits I took from the web:
- Frontal lobe seizures often occur during sleep and may feature bicycle pedaling motions and pelvic thrusting. Some people scream profanities or laugh during frontal lobe seizures.
-Frontal lobe seizures may produce unusual symptoms that can appear to be related to a psychiatric problem or a sleep disorder.
-In many cases of frontal lobe seizures, brain wave tests (electroencephalograms) may not show the changes characteristic of epileptic seizures that originate elsewhere in the brain. Medications usually can control frontal lobe seizures, but surgery is an option if anti-seizure drugs aren't effective.
-Some people see or hear something that is not actually happening
-Symptoms include
•Thrashing of your arms
•Turning your head to one side
•Carrying out strange and complicated body movements
•Having problems speaking
•Experiencing sexual feelings and showing sexual behaviour
It just sounds like me right down the list. I always thought I contorted down and to the side as an involuntary response to my embarassement. Like subconcously I'm trying to hide. Maybe not though. I never considered the wonderful feeling to be sexual, but I could see how one would describe it that way. I absolutely enjoy having them during the day if no one is around to make me feel embarrased. I hear words that weren't actually spoken, but that didn't seem weird because you can always "talk to yourself" in your head and describe it as hearing words in your mind. It's not like I'm hearing dogs bark when there aren't any dogs barking, but, the cause could be the same. I bicycle kick often enough. I mentioned that I kicked a soda over, and I kick the covers off at night.
So what are your thoughts? Does it sound like I'm on the right track? Or am I just finding my symptoms and seeing what I want to see? My hope is that if this is frontal lobe, and responds to medication, then maybe I can fix the root cause of the problem and stop treating the resultant symptoms. If nothing else, NuVigil is $90 a month and I think Lamictal is like $15. The main driver, however, is my wife. Her cousin has full blown tonic-clonic seizures so it freaks her out when I have my little "word attacks".
Thank you so much for taking the time to read this.
Nosh
This is my first post here. Sorry if it's long and thanks in advance for reading through it.
I have had this issue since at least highschool, so 15 or so years. I'll give you the backstory. I experienced what I called "word attacks". Here's how a word attack goes. I'll, for lack of a better word, "hear" a single word of phrase in my head. It will sound funny to me. Not like "ha ha" funny, but like "that's a weird sounding thing and it makes me laugh" funny. I used to think I had to actually hear the word or phrase first, but I've since discovered that I can simply think of it. It's always random words, and after the word attack the same words cause nothing. So I used to think it was the words sounding funny that triggered it, I think now it's just simply that my brain is transfixed on the last words I processed (either from hearing or just thinking of them).
So here's what a word attack is like. It starts off with a tell-tale smirk and one eye sort of squints and tremors. Friends and family can spot it a mile away. I immediately disengage, stair into space, and smirk in a way I never normally do. I can't really talk, but sometimes I can squeek out a word or two. The exception is I can generally say the word or phrase that's associated with the word attack. I can walk, but it's sort of zombie like. It's kind of like my body is just slow to respond, so "take three steps" becomes "ttaaakkkee thhhrreee sstteeppppsssss", and I stagger three steps forward. It's enough that I can generally get out of a meeting at work so I don't have the word attack in front of everyone (though that has happened).
Sometimes it ends with the smirk. 5-10 seconds maybe, and it passes and I'm fine. If it continues, however, the next phase is I turn bright red in the face, I bend over at the waist and turn my head to the side, and I do this sort of inhaling laugh. Almost like a hyperventalating laugh, I "hick hick hick" on the inhales. Not to sound stereotypical, but it's what I imagine when I think of a redneck laughing at something. The whole "That there's funny pa, hick hick hick hick". Hopefully you get what I mean. This will last for, ohh, 10-30 seconds maybe? I'm fully aware the entire time, because I get to see the confused/worried faces of whoever is in the room. If it's a really bad one, I have been known to kick a bit too. I knocked a soda off the coffee table the other day.
Once it passes, I'm tounge-tied for about 20-30 seconds. If I try to speak normally, I'll stumble over the words, so I have to speak slowly. After that, I'm pretty much fine except I'm usually quite tired.
So I called them "word attacks" because of the association with words. I'm assuming they're seizures. I never really looked into it until lately because it wasn't a big problem. I was embarrased if someone saw one, but otherwise I actually enjoy having them. It's almost a euphoric feeling.
Now... that's daytime. I get them maybe once every few weeks or longer during the day. Sometimes I may go a month or two with nothing. Sometimes I'll have two in one day (very rare).
Nighttime is another story. I have them most nights, and usually more than one. At night it's much less controlled, and I flail about like I'm fighting off an attacker. I've smacked my wife a number of times. I've fallen off the bed. Some of my more common moves are pounding the bed with the side of my fist, and big flops from one side to the other. Like I'll flop over to the right side of the bed, "hick hick hick", kick the covers, fist pound five or six times, then big dramatic flop way over to the left side of the bed. I've had upwards of 10 of these on a bad night.
I've noted some things that seem to cause more than usual amounts. Staying up really late, which always confused me because you would think the more tired you are, the deeper you'd sleep. Alcohol, stress, and eating a ton of junk food right before bed all seem to trigger an increased amount as well.
I saw an actual Epileptologist (apparently there aren't many neurologists that are specialized to Epilepsy). He had me do an EEG, a sleep study, and a 24-hour observed stay. Of course I had not a single episode while on camera. I had an MRI of my brain and they found that I had a void in the speech center, which I thought was awesome because 1) it's not a tumor and 2) explains the association with words. So he said I most likely had Gelastic Epilepsy based on the laughing. As far as treatment, he said Gelastic doesn't normally respond to anticonvulsants. He said the risk is that at some point I'll have a full tonic-clonic, but if I've got 15 years without one, then I likely will never have one.
So since I have the majority at night, I never get a good nights sleep. So I had horrible daytime tiredness. I'm currently on NuVigil, which is a narcolepsy or shift-worker medication. It does the trick, and I don't have problems falling asleep during the day.
If you're still with me, thank you.
Here's where my questions come in. I saw some youtube videos of people having Gelastic seizures, and that's not what I have. I think I'm having frontal lobe seizures. Here are some tidbits I took from the web:
- Frontal lobe seizures often occur during sleep and may feature bicycle pedaling motions and pelvic thrusting. Some people scream profanities or laugh during frontal lobe seizures.
-Frontal lobe seizures may produce unusual symptoms that can appear to be related to a psychiatric problem or a sleep disorder.
-In many cases of frontal lobe seizures, brain wave tests (electroencephalograms) may not show the changes characteristic of epileptic seizures that originate elsewhere in the brain. Medications usually can control frontal lobe seizures, but surgery is an option if anti-seizure drugs aren't effective.
-Some people see or hear something that is not actually happening
-Symptoms include
•Thrashing of your arms
•Turning your head to one side
•Carrying out strange and complicated body movements
•Having problems speaking
•Experiencing sexual feelings and showing sexual behaviour
It just sounds like me right down the list. I always thought I contorted down and to the side as an involuntary response to my embarassement. Like subconcously I'm trying to hide. Maybe not though. I never considered the wonderful feeling to be sexual, but I could see how one would describe it that way. I absolutely enjoy having them during the day if no one is around to make me feel embarrased. I hear words that weren't actually spoken, but that didn't seem weird because you can always "talk to yourself" in your head and describe it as hearing words in your mind. It's not like I'm hearing dogs bark when there aren't any dogs barking, but, the cause could be the same. I bicycle kick often enough. I mentioned that I kicked a soda over, and I kick the covers off at night.
So what are your thoughts? Does it sound like I'm on the right track? Or am I just finding my symptoms and seeing what I want to see? My hope is that if this is frontal lobe, and responds to medication, then maybe I can fix the root cause of the problem and stop treating the resultant symptoms. If nothing else, NuVigil is $90 a month and I think Lamictal is like $15. The main driver, however, is my wife. Her cousin has full blown tonic-clonic seizures so it freaks her out when I have my little "word attacks".
Thank you so much for taking the time to read this.
Nosh