temporal lobe

[lobespaz]

I was diagnosed with temporal lobe epilepsy when I was about 20-ish...

Some years back, I experienced drug toxicity issues with Tegretol, so was then placed on Dilantin and taken off of the other....
I guess my doctor didn't feel dilantin was good enough, so he placed me on a drug that had just cleared the FDA process.  This drug was called Trileptol.  I had major issues with retaining much water...I would retain a thumb indent for well over ten minutes, and I had no ankles left to speak of.  It was very depressing to carry around all of this excess water weight, but my doctor didn't seem concerned, so....I stopped seeing him, and just went without treatment.

Years later, I was also diagnosed with severe depression and labeled with ADHD...

Although the stimulants seemed helpful, I got worried because of my family's history with drug abuse...so I stopped taking them....

I did, however, continue on with the other medication prescribed: Paxil.

Unfortunately, I am still taking Paxil...Have been on it for going on 10? years...
This one medicine I cannot seem to not take.  When I stop taking it, I have anxiety...get really grouchy, and explosive, and then I start having issues with confusion and not being able to make my mouth  say what I'm wanting to say--often...

I still have some issues with that anyways...and occasionally smell things that aren't really there (usually I have alot of fear when that happens).

I guess I'm trying to ask if Paxil has ever been considered helpful treatment for temporal lobe epilepsy or not...?
It certainly seems I possibly have far more troubles with the latter when I'm not on the former....

Thanks for any information you might be able to provide me....

[CCFNeuroMD JT, MD]

Dear lobespaz,

Thank you very much for your question.  I will try my best to address your concerns, although it is important that you realize that diagnosis is contingent on a thorough history and exam; since I am not able to do either, the following information should be used solely for educational purposes.

As you may already know, epilepsy is a diagnosis that is made when and individual has greater than one unprovoked seizure.  In general, seizures occur when the electrical activity within the brain becomes abnormally synchronized ultimately resulting in seizure-like activity.  In most cases, the abnormal activity arises froma  particular region of the brain (i.e. focal epilepsy), although there are cases where the epileptic discharged are generalized at onset involving the entire brain.  The good news is that most people with epilepsy tend to gain fairly good control of their seizures with medications (about 60-70%).  For those patients that have medication intractable epilepsies, evaluation in a large epilepsy center such as the one at the Cleveland Clinic is appropriate in order to evaluate for other management options such as surgery.

It is not uncommon for patients with epilepsy to also have co-existing psychiatric disorders, depression and anxiety being fairly common.  The medication that you are currently taking, Paxil (generic name paroxetine) is actually not an antiepileptic medication at all but rather an antidepressant.  Sometimes, there is an association between anxiety, stress, and depressive symptoms and seizure frequency in that stressful situations have been known to lower the seizure threshold.  As such, it is important to control these symptoms in epileptic patients in order to optimize seizure control.

If in fact you do have temporal lobe epilepsy, you should be followed by a neurologist.  In some of the larger hospitals, epilepsy specialists may be available to better address your particular problem.  You describe episodes where you are smelling things that are not really there.  These sound as though they may be what we call olfactory aura which is in fact a very small seizure (simple partial seizure).  The overwhelming fear sensation may also be a type of aura.  Auras are sometimes helpful in giving us clues as to where your seizures may be coming from.  An olfactory aura may suggest that your seizures are coming either from the amygdala (part of the temporal lobe) or from the frontal lobe; both are common areas for epilepsy.  If you are having ongoing seizures, you may benefit from an antiepileptic medication, although you should be seen by a neurologist for further evaluation prior to initiating any new medications.

An epilepsy center (such as the Cleveland Clinic) is especially equipped to deal with patients with seizures in that there is a multidisciplinary approach; that is, neurologists, psychologists, psychiatrists, social workers, and surgeons all work together to formulate a management plan that is specifically taylored to each individual patient.  I encourage you to seek help with a qualified neurologist and wish you the best of luck with your treatment endeavors.  

[FromRachael]

EEG showed seizure activity in the left temporal and frontal lobes?!  Wow,  I have a 3mm scar that lay dormint in my temporal lobe laying suspecion to my complex-partial seizures with secondary diagnosis of bi-polar disorder with mania.  

Temporal lobe epilepsy reminds me of the Lennox-Gastault syndrome.  In plain terms it could be described as lightening striking twice on the same place and in the same manner every time lightening strikes. We know for a fact that lightening is never that way and can never be that way because it isn't the way that lightening is designed to be.  We don't know why really, we assume, but it just doesn't.  Temporal lobe epilepsy generalizes the seizures into one area and concludes that there are no other premises.  

Lennox-Gastault was a study by Dr. Lennox and Gastault with a patient that had uncontrollable seizures and they studied that by cutting the corpus collosum that it would generalize the seizures into one area so they would not reach the other lobes in the brain.  In fact, it did conclude their theory to be true.  However, not without significant consequences to the ability of leading a productive, adult life with meaning afterwards.  

Since I have had the same experience myself with the necessities in adult onset of seizures, I understand the dilemma that you have with your license.  It is not a fun thing, but it could be detrimental to the life of yourself and/or others with the increase of your seizures.  

Paxil?  I am not sure about it, but I take Lamictal and it is the same thing really, just more of an anti-convulsant and coupled with Lexapro makes a great combination.  

I have researched the Ketogenic diet lately,  have you checked it out?  It is a supplement also to controlling seizures for those that are allergic to everything under the sun or can't control them with normal medication.  

Hope this helps,
From Rachael

[lobespaz]

Oh...thought I would add that, yes, eeg's showed seizure activity in left temporal lobe that extended to ...some area outside (can't remember name of it) the lobe...Occasionally--on some eeg's--there was not seizure, but only 'abnormal' activity....like a 'slowing'....In the mid eighties, they performed an mri, and nothing seemed unusual...Also, the Dilantin Doctor was a second opinion following my first Neurologist ignoring my complaints about confusion and inability to retain anything I read or that was told to me. (I was in college at the time) My first Doc told me I should just go work at McDonald's, then....Second doctor ran some tests that showed other 'evidence' of Tegretol toxicity--severely elevated med levels and liver enzyme issues, if I remember correctly?  Also, my tongue lists to one side, I guess, in my mouth--noted on numerous exams--and that was worse, or something...
My work requires I drive from city to city, so I don't want to go to a neurologist, as I don't want my license taken away.  I just mainly want to know if paxil could be helping my stress level enough to reduce seizure activity...or if there's been any studies showing any value regarding paxil and temporal lobe epilepsy.