[Research] Frontal lobe epilepsy research

[tam bam]

Here is another link I found while Binging today (I have to get used to that word instead of Googling) LOL! It is talking about Nocturnal Frontal Lobe Epilepsy (but keep in mind that FLE can happen during the day and this study does state it). It even has pictures of case studies. I hope it is helpful to someone out there. It is very detailed and an overall great study that is why I thought I would add the link.

http://brain.oxfordjournals.org/cgi/.../122/6/1017#F2

tam bam

[Aubrey]

Firstly, occb, I just want to thank you for posting an FLE thread. My doc thinks I have FLE with, when unmedicated, a rapid spread to generalized T/Cs. I have a number of weird 'things' I do that are more associated w/ FLE than temporal lobe epilepsy. He keeps having me tested to see if he can just figure out where THE source is. He wanted me to be a surgery candidate, but I have combed the internet high and low and I just can't find any accounts of success stories from people with my combo. As a matter of fact, like lots of us on here, I haven't found hardly anyone with my particular combination of seizures. I finally just got sick of having more tests, to see if I was a surgery candidate for a surgery that was frequently unsuccessful for people with a focal point where mine is rumored to be. It would still be cool to know what was causing it I guess.

[occb]

Hi Aubrey,

I'm pleased that this thread is here for people like you. It's a very confusing type of epilepsy that is often missed. Is the surgery a last ditch effort for control, or is your doctor looking at it as an alternative to taking daily meds?

What sorts of weird "things" do you do? (if you're comfortable sharing that information). I find that clinical descriptions aren't as clear as descriptions from experience. Have you had seizures for your whole life, or did it develop later in life? Do you have both daytime and nighttime seizures?

[Aubrey]

I may or may not have night time seizures - I grind my teeth in my sleep and have had brain spikes while sleeping in EEGs. I have staring spells with absence spikes that began in adulthood. I have complex(?)-partials with loss of consciousness with continued movement from what I was doing previously (including julienning carrots!) or talking. I have complex-partials where I am conscious/able to comprehend, but mute/unable to respond, and my ability to respond verbally will precede my ability to force my body to move. Sometimes I am lucid afterwards, but if I have a stream of seizures in a row I will become confused. I never have an aura. Ever. (bummer they sound cool.) When the tonic-clonic seizures go generalized (since I started taking the Lamictal, these are usually arrested at the tonic phase, but this pattern is what makes my doctor think I have FLE) - I freeze, clench my jaw, followed by a slow head turn always to the left, a nice gruesome grimace (my words), fiddling with my clothes, and then it goes into a typical clonic. Depending on the severity, I can be extremely uncooperative post-ictal.

I have had what appear to be generalized seizures since I was 11, off and on. The absence and complex-partial were not diagnosed until I was in my early 30's.

My doctor is trying to control it with various meds. It is mostly under control. He knows I want complete control and he is trying to accommodate that, but I just don't feel comfortable with surgery for 2 really big reasons: he hasn't actually been able to pinpoint the spot, and I have found way more accounts of FLE surgeries with less than perfect results than those with perfect results (none). Sorry to be so long, but you did ask...

[occb]

That wasn't long at all! That's what I was looking for! Thank you Aubrey.

A lot of what you describe fits my partner, except he doesn't have T/Cs, but we suspect he has had at least two in his past, unfortunately without witnesses, just him waking up with paralysis for at least an hour and no memory for the preceding half a day/night.

If you'd like to read what he experiences, I've been keeping a seizure diary here. It's MUCH longer than your post lol

[Nakamova]

Hi Aubrey --

Lamictal caused me to grind my teeth at night. Don't know if that's the case for you, or it's a seizure thing instead...

[Aubrey]

Hi Nakamova,

I think I have been grinding my teeth even before I took the lamictal, even when I wasn't having seizures, but who can tell what is a side effect of the medicine and what is part of the condition.

[Blondie47]

Thank you occb for this information!

I read the articles and learned that frontal lobe epilepsy is resistant to anti-epileptic drug's.
That explains why my DD, 14 is still struggling to be seizure free after a year and a half. We have found the greatest success with Trileptal, but she still has Frontal lobe seizures 2x a week.
The doc tried to add on Zonegran, which failed to control the breakthroughs, and we are in the middle of a trial of adding Diamox. Not much success so far with this drug. I believe the next drug will be Lamictal.
Thank you again!

[Aubrey]

Lamictal gets a bit of a bad rap on here, but for me it has been, while not perfect, way better than Trileptal, and definitely the best thing I have tried so far. Good luck finding something that works for your daughter. Some people with FLE do get complete control. Just very sllloooowwwlly increase the dose.

[occb]

My partner was prescribed Lamictal for other reasons, but he responded really well to it as well.

[Blondie47]

Thank you Aubrey and occb!

[Blondie47]

Oh - just a thought and question for you... we take generic Trileptal. Would you suggest a move to brand name? I know that generics can be up to 20 percent less effective than the brand names.

[occb]

Some people respond better to generics, and some respond better to brand names. Everybody is different, so there's no predicting what might work best. I wish I could be more help than that.

[occb]

I just found this article -- interesting reading.

At one point they discuss the Wisconsin card sorting test:

...the Wisconsin card-sorting task, which requires the patient to sort a special deck of cards into two piles.

“I had that one. All cards with red symbols were supposed to be placed in the right-hand pile, all other colors in the left-hand pile.”

But of course the patient has to figure this out from the responses elicited from the neuropsychologist. The patient is not given any specific instruction. He just starts sorting the cards into two piles and the neuropsychologist says yes or no after each card, depending on whether the correct criterion for sorting was used — in the example, yes if a card with a red symbol was placed on the right pile. Patients catch on to the criterion after a short while and soon are hearing a yes after each card. But that’s not the hard part.

Partway through the deck, the neuropsychologist changes the criterion without any warning. Now it’s yes if cards with three symbols are placed on the right pile, regardless of color. Since the neuropsychologist doesn’t mention that the criterion has changed, the patient’s only clue is hearing no. Over and over. A normal person soon realizes that the rules have changed and tries another sorting pattern and eventually discovers the new criterion by a string of yes responses.

“So that’s what was going on. It was rather fun, actually. But maybe that’s because I caught on each time she changed signals on me.”

The patient with damage to one frontal lobe catches on to the original sorting strategy and gets the string of yes answers. But, when the needed strategy changes, he keeps on sorting the cards the way he started out, red on right, despite the string of no answers that this elicits. He seems unable to adapt his behavior to the new game. So it’s the same problem as in Luria’s patients, an inability to adapt behavior to contingencies.

That inflexibility, inability to adapt I see when partner has his moods. He's not normally like that. In fact, he's usually quite flexible, adaptable, and spontaneous, but when that afternoon mood comes a knockin' forget adapting. He'd go through a brick wall if he had to.

[Camille]

Hi, my name is Camille. I thought we could be friends. I live in Brandon MB. I have seizure and am currently seeking help for a possible frontal lobe (feelings) diagnose. I have been diagnosed with frontal lobe activity but not with actual symptoms from it.

[jyearta]

I have been reading this thread on temporal lobe epilepsy (which I have). I hope am not stepping out of line to ask this.

I saw where temporal lobe epilepsy seizure can be in the form of rage.

My seizures over the last few years.

1st. they started with deja vu - then I would stare, stop speaking to who ever I was talking to, smack my lips. My Seizures used to bad.

However last several years they have been VERY mild, my husband does even know I'm having one, it is that mild and short.

Now having said that I have been experiencing RAGE about every 5 days, uncontrollable rage. I get mad at small things and will tell you so. (Not a pretty picture)

I thought this rage was coming from the B-12 shots ( I get for my deficiency)

I have spent I don't know how many days trying to find out where this rage is coming from.

I am on Dilantin and Klonopin-in the process of reducing dilantin.

Could this rage be a seizure? just asking

[epileric]

Personally I think that if you are aware of when you have your seizures then you'd be aware of your seizures even if you were in a rage.

I would question if this excess energy can come from having less dilantin in your system.

Of course please remember that this is just my non-medical opinion.

[jyearta]

Yes, I have been aware of my seizures, and Yes I am aware of the rage. But just like I can't stop a seizure, I am also unable to stop this rage.

I would have thought it had something to do with decreasing the dilantin also, however these anger (Outburst) started before the process of decreasing my dilantin.
The Only new/diff. thing that happening was the B-12 shots - that why I associated this with the shots.

When this (feeling) rage starts coming on I feel my heart racing so fast. I start shaking, and it feels like the shaking starts spreading from the bottom of my body to the top. That is when my outburst of rage/anger come. I try to get somewhere all by myself so that I don't hurt someones feelings.

I use to ALWAYS say, you have a CHOICE on how you deal with things, and to a degree I still feel this way.

But whatever this is, is out of my control. I have asked for depression medic. to hopefully help.