[Research] Frontal lobe epilepsy research

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

occb

occb

New
Messages
1,190
Reaction score
1
Points
0
I've read a number of papers and studies about Frontal Lobe Epilepsy, and I can't find most of them anymore :( So, I decided to start this thread in order to post links to in-depth information about FLE.

Another reason I want to do this is because, although it's the second most common type of focal epilepsy, it's not been as researched as TLE. Because EEGs often do not display FLE seizure spikes, uit can often be misdiagnosed as mood disorders, parasomnias and psychogenic seizures. Seizures with FLE can be downright weird and even experienced neurologists may have difficulty recognizing FLE for what it is.

Anybody who has information to add to this thread, please do so, from links to papers or studies, to books or videos containing good information about FLE. I can use all the help researching this as I can get.

So here are my first links:

A General overview of FLE from the Mayo clinic website

Frontal Lobe Epilepsy Author: Sheryl Haut, MD

Autosomal Dominant Nocturnal Frontal Lobe Epilepsy from the National Library of Medecine

Symptomatic and Probably Symptomatic Focal Epilepsies: Topographical Symptomatology and Classification Author: C. P. Panayiotopoulos
 
Yes, this is a strange topic. Epilepsy in general as well. as everyone's symptoms and seizures are different. One might smell lavender instead of burning rubber. Others might smell chemicals instead of oranges. etc etc. Plus behaviours are not always the same. someones eyes can be closed during a seizure *although rare* but it does happen. Maybe bring to your neuro's attention that this is your suspicion based on your extensive research, and you need his help to confirm it, or another type of seizure disorder.
Even if it turns out to be NES, Psychogenic etc, at least its a start on saying that; yes, his seizures are seizures, and we are willing to offer help

Although I think that because he hasnt responded any better to a psychologist/psychiatrist to me, seems like they arent pychogenic in nature
 
This thread is more intended as a research thread for FLE, rather than one specifically about what my partner experiences. Hopefully it can be a resource for those who do fall between the cracks and need to be able to bring credible information to their doctors regarding what they're experiencing.

FLE seizures aren't just mildly different than other focal seizure types, but can be vastly different: frequency, duration, and level of consciousness during both the ictal and post-ictal state can be very different than those experienced by sufferers of TLE. For example: someone who just falls over as if pushed -- there's no disturbance of consciousness, no dizziness, no lost balance or stumbling, not obvious muscle tone loss. It's neither a tonic or an atonic seizure, and is most often dismissed as clumsiness, even if it happens upwards of 10 times day. The thing is that it can be a sign of an FLE focal seizure that starts in one part of the brain and then quickly moves to another.

Also FLE non-convulsive status epilepticus may manifest in ways that are easily misinterpreted; for example, extended periods of rage, or stuporous depression lasting days, weeks, or even months.

Each kind of focal epilepsy has its general pathophysiology, although each individual may experience the seizures somewhat differently. Literature about TLE pathophysiology is abundant, as are studies of unusual clinical manifestations of TLE. Good, detailed information about FLE and unusual clinical manifestations of FLE are harder to find.
 
True, as I do believe there is lots out there, just nobody has documented it, or not recorded it properly and to a detailed presicion. I also think that doctors are quick to dismiss symptoms and diagnose the most common ailments that match only a few of the symptoms. I think that most doctors do care about their patients, but most are not willing to look deeper. sometimes its not even that they arent willing, its that they jump on the first possible diagnosis as if that all that it could be, even though there are far too many other possiblities. A blood test doesnt always show all the possible deficincies etc, because its the doctors that tell the technicians what to look for.

When it comes to something neurological or mental, people are quick to assume that it is either depression, bi-polar, schzoprenia etc, when it could be something as simple as an allergy or sensitivity or and over/under amount of a hormone/substance in the body. Alternately it could be something way more complex that they are just too blind to see. I think that there may be alot more people out there who have FLE, but are misdiagnosed. It may be even more common that TLE, but because of its complex symptoms and the inability to catch it on a standard EEG it is easily missed.

On the other hand I think that most patients will quickly accept the first diagnosis because it "seems to fit" when they should be questioning why some symptoms still persist dispite medication etc. The only test that I can think of that MAY be able to shed some more light on symptoms is a Video EEG, or a one week Ambulatory EEG, or even an intercranial EEG. it gets rid of the "brick wall" that muffles the sounds/readings.
 
True dat!

Okay -- I said this wasn't about my partner, but I'm just going there as an example of what you're saying. He was initially diagnosed as suffering from major depression with anxiety, then later as Bipolar II with Agoraphobia (the latter added, because he often didn't leave the house because he felt sick or was in pain. Later it was determined that he had a major back injury, which neither the GP, nor the psych knew or believed he had at the time of his diagnosis).

We simply accepted the diagnoses, because they were somewhat descriptive of what he experienced, and we thought, "what do we know?" He had many more issues than just the psychological ones, but he, and his docs, were starting to think he was a hypochondriac. It wasn't until I witnessed a very obvious "space-out" while he was on medication that he had an extreme adverse reaction to, that we began discussing his symptoms and medical history in depth, and discovered that what he experiences doesn't really fit with his diagnoses.

After months of reading and research, and thinking we might be wrong about his having E despite some sporadic signs (terrible smells, perception problems, myoclonus, time loss, memory loss, confusion), we hit on the signs of FLE, and I almost fainted. It was as if someone had watched partner and written down what his most common experiences were. FLE doesn't just fit some of his symptoms, but nearly all of the symptoms he's had since childhood, which were ignored and belittled by doctors.

Hopefully, with credible literature in hand, I can walk into the doctor's office and have someone at least take this a seriously, and attempt to figure out what's wrong with him.
 
Yes, If it is even at all possible I think that someone should be able to see if an epilepsy advocate can come to the neuro with them, especially for newly diagnosed or those in the process of dianosis, because most people are too shy to ask questions, or dont know what they/the doctor is talking about
 
Hi all,

I possibly have FLE or PNES. I do not know at this time. It is as of yet to be determined but hopefully soon by an epileptologist at Emory. He is going to study some video EEG's that I had performed and wait and see if some meds work for me. (Started meds about week and half ago. The meds normally take effect in about 2 or three weeks the doctor said). If the meds do not work then I have to have a 3 day long video EEG. Fun! At least I have found a doctor who cares but I do not meet all the normal requirements for FLE. For example: My seizures are mainly during the daytime hours. While I do have some night time seizures but most are during the daytime hours. This struck my doc as being a little odd. He said this is possible but rare. Also as Rae was saying some people on, rare occassions, close their eyes during seizures well this is me. I do this. Sometimes I do open them but most of the time my husband tells me that my eyes are shut. I guess I am just a weird case. No wonder I get weird looks in the doctor's office when I inform we inform them of this. LOL!

Also, I would like to add that I have tried several anti-depressants in the past and they have not helped my spells or seizures. My spells or seizures were worse on anti-depressants. I feel at my best on AED's but perhaps I haven't found the right dose or the right one for me yet. Oh yeah and I have also in the past seen a neuropyschiatrist and in his notes he was evaluating me psych. and he treated me with anti-depressants as well and AED's and I seemed to have baffled this man but he found nothing psych. wrong with me according to his notes but then again I guess this doctor could have been wrong. I do not know.

Hopefully I can add somemore links regarding FLE to help Occb out with her quest. I just had to put my 2 cents in as always since I am the other person on the board that possibly has FLE or let's at least say that I had an abnormality show up in my frontal lobe on a video EEG.

tam bam
 
Traditional classification systems divide the frontal lobes into the precentral cortex (the strip immediately anterior to the central or Sylvian fissure), prefrontal cortex (extending from the frontal poles to the precentral cortex and including the frontal operculum, dorsolateral, and superior mesial regions), orbitofrontal cortex (including the orbitobasal or ventromedial and the inferior mesial regions), and superior mesial regions (containing, primarily, the anterior cingulate gyrus). Each of these areas has widespread connectivity.

Given the unique connectivity between the frontal regions and deeper brain structures, lesions of these areas or their connections generate relatively distinctive clinical behaviors.

*The dorsolateral frontal cortex is concerned with planning, strategy formation, and executive function. Patients with dorsolateral frontal lesions tend to have apathy, personality changes, abulia, and lack of ability to plan or to sequence. These patients have poor working memory for verbal information (if the left hemisphere is predominantly affected) or spatial information (if the right hemisphere bears the lesion brunt).

*The frontal operculum contains the center for expression of language. Patients with left frontal operculum lesions may demonstrate Broca aphasia and defective verb retrieval, whereas patients with exclusively right opercular lesions tend to develop expressive aprosodia.

*The orbitofrontal cortex is concerned with response inhibition. Patients with orbitofrontal lesions tend to have difficulty with disinhibition, emotional lability, and memory disorders. Patients with such acquired sociopathy, or pseudopsychopathic disorder, are said to have an orbital personality. Personality changes from orbital damage include impulsiveness, puerility, a jocular attitude, sexual disinhibition, and complete lack of concern for others.

*Patients with superior mesial lesions affecting the cingulate cortex typically develop akinetic mutism.

*Patients with inferior mesial (basal forebrain) lesions tend to manifest anterograde and retrograde amnesia and confabulation.

This is an except from the following website:Frontal Lobe Syndromes

I thought I would broaden the spectrum a little too, by adding syndrome and disorder to "Frontal Lobe". All of these above can also have seizures as a symptom. Both simple Partial, Complex Partials, Myoclonics, and less frequent Tonic Clonics. *patients can go years inbetween TCs) Mostly because some people call epilepsy a disease, and sometimes it is is called Temporal Lobe Syndrome
 
Last edited:
Oh yeah, good idea Rae, thanks! That's part of the reason why I came here, because personal experience stories can help clarify all the clinical descriptions.

The above descriptions of what happens when there is damage to different parts of the frontal lobe is very interesting. There's very little information about how frequent frontal lobe seizures might mimic these kinds of issues though, which is something I'm curious about.
 
Emedicine has good information on frontal lobe epilepsy. It has been so long since I have been here, I am not sure if I am allowed to post links. (sorry, been too busy with school and my son). Sam has frontal lobe as well as temporal lobe epilepsy> he is one who has been through misdiagnosis because his seizures were not showing up on VEEG. Frontal Lobe epilepsy can e difficult to detect on Scalp EEG. Doctors KNOW this, but sometimes argue with patients about this! his chart shows that he has some abnormalities in VEEG, but it was not ENOUGH for the epi until the 7th veeg. (his earlier ones an epi said he WOULD outgrow his epilepsy, a fellow stated in her final report that she believed it was frontal lobe E) the Senior epi felt it was parasomnia. We went through all kinds of testing for SLeep disorder, cardiac syncope, sleep apnea, you name it! It was epilepsy all along. 3 years he remained off meds. 6 years he had no dx (after 3.5 years dx with E) age 11-17 no dx. Depression from 14 till now at almost 19 it is very severe.

HIs seizures had become harder to treat during the time off medication and he had been listed as intractable before being taken off.

Frontal Lobe epilepsy is a tricky dx for certain.

GM
 
My second link is to the emedicine article. I suppose I should have written that instead of just the author's name.

Thank you for sharing your story kayakmom. I can't imagine what a struggle it's been for you and your family getting appropriate help for your son. My partner has also suffered severe depression as a result of his health concerns, which peaked at about the same age as your son is now. What are your next steps in getting him help?
 
Thank you for the support. Because of this emotional challenges at this point, we are working to find a partial hospitalization program. He has a wonderful neurologist now. He has his epilepsy diagnosis. We may find a new psychiatrist at some point in the near future who is used to working with more adult issues (his is at a children's hospital and he may be beyond his area at this point). We have just started with a new therapist so having a psych in the same area would be good. We live in an area where psych treatment is not the best. just over the state line it gets better. We have been traveling 2 hours for care, now we are traveling 30 min or so. Lucky it is that close!

We are working to find the proper med combo (been on 4 meds, trying another again for the mood issues). Dropping an AED lower that may be causing trouble.

FLE is tricky.

I will see what I have in my archive for FLE< I know some is on paper, not sure it is on the web. You can always check PUBmed and AES archives (the 2009 archives at AES just went up this week.
gm
 
It definitely is tricky on a lot of different levels *sigh* I hope you're able to get him a little more under control with meds and partial hospitalization.

Since we currently have no support from doctors, we're going back to basics and altering our diets to see if food can help us get control of what's going on. We're specifically working on the GARD elimination diet, with some modifications (nuts are apparently a no-no at the beginning of the elimination diet, but since nuts actually make partner feel better, we're just going to keep them in for now). Somewhere I'm getting the energy to be Suzy homemaker again. I dunno where that came from, but I'm going to ride the wave to the end.
 
Hi all,

It has been about two and half weeks now since my AED's have been upped to the epilepsy dose and the epileptologist said if I remained seizured free then I have FLE and if not then I have to have another video EEG for 3 days so he could see the spells or seizures or whatever they are. Well, I have remained seizure free at this point... It appears that I do have frontal lobe epilepsy and my neurologist was right the whole time when he found the abnormality in my frontal lobe on my 2nd video EEG. It has been nice not having seizures for this long finally!:woot: and to know what is wrong with me now. :woot:

tam bam
 
WOOTWOOT! Yaaaayyyy for you! That is really wicked that the meds are working!

I'm so happy you've gotten the help you need.
 
Tam Bam, congratulations!! Best wishes with continuing control! It took us a long time to gain control once the doctor believed and we went on polytherapy. Finding the right treatment can take time, but when you finally find some control it DOES feel so much better!! Celebrating with you!!

GM
 
Thank you for the link Tami -- there's some valuable info in there!
 
You must log in or register to reply here.
Back
Top Bottom