frontal lobe epilepsy diagnosis? what symptoms?

[Aubrey]

Do you have frontal lobe epilepsy? How does it act for you? My Dr. is (almost!) certain I have frontal-lobe epilepsy. I have almost entirely controlled tonic/clonics and semi-controlled partial seizures by medication. I have day time seizures, not nocturnal. My partials present in a number of ways: Sometimes I just stop what I am doing and stare, sometimes I keep doing what I am doing, sometimes I walk around, or I am immediately lucid afterward or confused, or comprehending but mute, or saying a jumble of random words. Last night at the grocery store was H) all of the above. I have had one EEG that showed an almost imperceptible abnormality in the left frontal lobe. The interictal-spect, the tech was not paying attention so they didn't squirt in liquid at the start of the seizure so it looked like the seizure arose from the temporo-parietal area, but I guess those are not the type of seizures I have. I may or may not be a candidate for surgery, but not if they can't narrow down which region of the brain my seizures are coming from? Do I even want a surgery?

[Nakamova]

Hi Aubrey --

temporal lobe epilepsy symptoms vary depending on which parts of the temporal lobes and the rest of the brain are affected. Simple seizures in small areas of the temporal lobe don't tend to affect consciousness and usually show up as auras or sensations (like deja vu, a certain smell sound or taste), and also feelings of fear or euphoria, etc.

It sounds like you what you are experiencing are Complex Partials, which tend to originate in a larger part of the temporal lobes. Symptoms include staring, involuntary movements, inability to respond to others, unusual speech and/or behavior. It can be tricky to narrow down a specific originating point in the brain however. EEGs can point the way, but they also show false positives and false negatives. There are people on this site whose epilepsy has never shown up on an EEG. If your seizures are fairly well-controlled, surgery may not be for you -- it's a big step, and there is no guarantee that the seizures will disappear entirely. There are people on this site who have had surgery -- you can search and get information about their experiences.

Best,
Nakamova

[Aubrey]

Thanks for the input. I guess I have this irrational fear that there is more than one focal point - the one they are expecting to find and therefore focusing on looking for and another. Then, if I have a surgery for the one, I will still be dealing with the problems caused by the other. Does anybody else with confirmed FLE have in the daytime like this? From what I read it is mostly nocturnal. Also, I have never once had an aura for any partial or t/c.

[dfwtexas]

I also have simple and complex partials. My complex partials are when I continue doing what I was (like working, cooking, etc). I have been on Keppra for a little over a year. I have had my meds adjusted when seizures pop up...they just upped me again in May. Maybe you just need need an adjustment on your meds or a change in meds.
Surgery should be a last choice in controlling your seizures

[Aubrey]

Thanks guys - I am going down on Friday for another chance at finding the elusive focal point

[cjole]

temporal lobe epilepsy symptoms vary depending on which parts of the temporal lobes and the rest of the brain are affected. Simple seizures in small areas of the temporal lobe don't tend to affect consciousness and usually show up as auras or sensations (like deja vu, a certain smell sound or taste), and also feelings of fear or euphoria, etc.

Boy did this hit a nail on the head! I have had these really weird feelings for years... kind of a deja vu feeling, and also this feeling that I should just run and hide under or behind something. It's pretty indesribable(?) for me, and I have NEVER been able to tell anyone about it. It comes on so quickly, and then pretty well just disappears. After it's over, I am not even really sure that "it" happened, or if I was just making it up in my head. I did say something the last time to my neurologist, but she kind of didn't really seem to really pay attention to what I was saying, or how I was saying it..

OOPs Gotta get back to work!

CJ

[Aubrey]

Part of why I posted this thread is because I am so confused because I seem to have symptoms of both frontal and temporal lobe epilepsy. I have done a lot of reading on the internet (I know, dangerous as a source) but I finally found an article that explains why FLE might look like temporal lobe epilepsy. I don't think I can post the link. I was wondering if anyone else was having those same issues. I guess I should trust my doctor more, but I want to know as much about my brain as he does. I want to know when he says "99.9%" sure it's FLE, where's the 0.1? Anyway, apparently, when a partial seizure with a frontal lobe focus spreads quickly enough you can have a combo of symptoms. Also they (doctors) tell me my seizures spread too fast for them to catch the focus. I guess that's what's with the 0.1. Still a little nervous that I have two bad spots instead of one, though, and that matters when you are talking surgery. My current cocktail helps, but, not like we all don't, I'd rather have it stop altogether.

[dfwtexas]

I know my neurologist had told me that I have 2 areas of my brain that have seizure activity...I didn't really ask him more info as I was in shock and denial at the time

[doihaveepilepsy]

my neurologist decided that i might ne having frontal lobe seizures although to be fair i think they make stuff up as they g along with me. just as stuff pops up on te eegs. i have abnormal eegs in the frontal lobes but i dont really understand much about it, just no i have seizures that get on my nerves and land me in hospital alot. im on my 5th med now (keppra) fingers crossed this one will have sum effect its not so far but hey im hopeful. i have tonic clonic seizures.

[RobinN]

I agree with you... I think they make stuff up as they go doihaveepilepsy.

Aubrey - a quick summary of my daughters situation. She has a heterotopia in the frontal lobe. I was told by two neurologist that this is why she was having seizures. Another neurologist team told us that this was not of importance, and she was not having epileptic seizures. Okay... who to believe.

Meds didn't work, nutritional changes, and neurofeedback, and supplements have made improvement. From 6 seizures a month while on meds, to none in over three months off of meds. .... who to believe. I believe what works.

So... even with a brain "birthmark", she is far more controlled off meds than on.
We have also since found out that hypoglycemia was possibly causing some or all of her seizures too. Doctors did not catch that one. They wouldn't even test it, until she had a very scary seizure where her blood sugar was down to 32. So... who to believe.

Search for YOUR truth. knowing the names of it, won't necessarily help. Finding your triggers and raising your threshold will.

[Cint]

Aubrey,

The seizures you describe sound like complex partials to me, also. Since your tonic/clonics are controlled by meds, why would you want to consider surgery? How many complex partials are you having a day?

I had a left temporal lobectomy, but was only seizure free for 14 months, then they came back with vengeance. They said the seizures originated in my left temporal lobe, but after the surgery and the seizures returning, they wanted to do a 2nd surgery. After more testing, we discovered it couldn't be done because the focal point was too deep in the brain to operate. I'd end up in a vegetative state. Nooooo thanks!!

Since the surgery I've tried 12 meds and nothing works completely for me, so please think long and hard before going under the knife.

[Aubrey]

You make good points, Cint. I am more hesitant since coming on here about surgery. At first I was of the attitude, just cut the problem right out of my head - better than meds. Now, not so much. I am driving (no, passenger seat driving) 200mi on Friday for a 3T MRI (anyone know how perceptive this is?). My epileptologist says he doesn't discuss surgery with everyone, and stresses the people who have had it who are seizure-free. Why with T/Cs (mostly) under control do I want complete control to the point of taking such extreme measures? I am a bit of a fool, and that's why. I have had 2 spans in my life where I thought I had E under control, and, as a result, I am obsessed with wheeled transport. I know that's wrong, I am not sure there is any counseling me out of that. There is 0 transit here - I am not averse to it, if it exists. I live in an island off of the city mainland, though. Also I gambled that new meds or surgery would have been the magic ticket and I would be counting down my days to my drivers license - banking on this I applied to law school. By the skin of my teeth I got in. Other options my doctors have also mentioned: VNS if the spot is too deep. They have also mentioned a chip that is planted inside of your skull - they scan your brain, determine your own personal "normal", and anytime any abnormal or start of seizure activity is detected, it arrests it immediately. They reprogram this every 10 years. Has anybody else heard of this?!