TLE

January 20, 2005 1:15 PM

TLE, possibly one of the most common diseases, believed to affect 600,000 to a million Americans, remains obscure. It is what afflicted Julius Ceasar, Alexander the Great, and Dostoyevsky. Known through the work of Bear and Geshwind, it is virtually impossible to diagnose except in a severe cases where a seizure can be witnessed by an MRI or EEG, also because of the controversial theories on personality. While a neurological disorder, it is treated by psychiatrists, and when medicated, artists have often felt that the muse has left them.
posted by scazza (38 comments total)

Wait.. if it's virtually impossible to diagnose, how would we know Julius Caesar had it?
posted by John Kenneth Fisher at 1:43 PM on January 20, 2005

Good point. I should have thought out that wording better. They speculate that he had it based on his symptoms, I assume, in the ways in which TLE is different from other disorders.

Today it is often the case that doctors have not been able to pin down what is wrong with a patient, that this is the only thing that fits all the symptoms, and that a course of TLE treatment/medication has been the only thing that has helped. Thus, even without an EEG confirmation, I'd say they'd be right.
posted by scazza at 1:50 PM on January 20, 2005

Great post, scazza! These are really interesting links.

This is fascinating stuff, even if I totally hate the whole "scientists discover that artists are mentally ill!" vibe. Obviously, there are many artists living and dead who do not / did not have TLE. (I assume.) I agree, too, with the William James quote in one of those articles.
posted by josh at 2:00 PM on January 20, 2005

Wow. Great stuff. Thanks, scazza.
posted by Shane at 2:04 PM on January 20, 2005

wow! Inman kicked Joe Gould's arse! Nice link, scazza. Thanks.
posted by shoepal at 2:10 PM on January 20, 2005

Actually, it's not that hard to diagnose anymore - the first link points to an article published in 1988, when it was still hard to objectively diagnose - although surgeons have been doing temporal lobectomies for decades on the basis of symptoms alone (with mixed success.)

Current imaging technologies (brain SPECT scans and PET scans) are very good at pinpointing the seizure foci, so that objective diagnostic tests can usually definitively diagnose both the CPS (complex partial seizure) and SPS (simple partial seizure) forms, even if the patient isn't seizing at the time the imaging is done.

Because of these improved imaging methods, evidence is building that bipolar and unipolar depression are actually caused by TLE - the most effective drugs to treat bipolar illness happen to also be anti-epileptics, and psychiatrists are finding success with using anti-epileptic medication (especially Lamictal) to treat patients with depression who haven't been helped by the usual SSRIs etc. - which turn out to be mainly only treating the symptom of depression and not the underlying cause. In cases of TLE-induced depression, anti-epileptics treat the cause.
posted by JAHxman at 2:13 PM on January 20, 2005 [1 favorite]

1988 is the best of the web?

Maybe so. Good links. I especially like how that article basically suggests that all religion finds its root in brain disorders.
posted by absalom at 2:18 PM on January 20, 2005

interesting post, thanks!
posted by blendor at 2:23 PM on January 20, 2005

Its not hard to diagnose at all. When I was 19 I started having strange experiences where it seemed like I was completely reenacting a dream I had the night before but did not remember when I woke up. About six months later I had a full-blast grand mal seizure. When the symptoms complained of are related to experiences related to time distortion and there is seizure activity, it usually results in a diagnosis of Temporal Lobe Epilepsy.

The religion stuff is real too. Four or five years after I was diagnosed, I got into Buddhism pretty big. Then one day I was working in a library and came across an article describing the religion-TLE link. I was upset. Was it all fake? My aunt, a psychologist had some wise words. If you come to religion, does it matter what direction you reach it by? I realized that in some ways, it was a gift.
posted by Ironmouth at 2:28 PM on January 20, 2005

I'm really not of the belief that all religion and art is caused by brain disorders. I think whether the experiences are caused by a disorder or not, it is still completely valid. We see everything in this world as filtered though our own perspectives. So, I don't mean to start the religion/art vs. science arguement. That would just be silly, people.

Current imaging technologies (brain SPECT scans and PET scans) are very good at pinpointing the seizure foci, so that objective diagnostic tests can usually definitively diagnose both the CPS (complex partial seizure) and SPS (simple partial seizure) forms, even if the patient isn't seizing at the time the imaging is done.

JAHxman, how does this work? I got the impression that TLE is hard to diagnose from my own psychiatrist, also because I have had certain symptoms all my life and it has been 10 years of seeing doctors that has actually resulted in one considering TLE.

With medications btw, TLE meds concentrate on the Limbic system, which is, as I understand it, a different part of the brain than some anti-convulsants ("anti-epileptics") target. I've been taking Neurontin for years and have been resigned to it's ineffectiveness in certain situations. Thus, possibly changing my medication to something that targets the Limbic system makes the anti-convulsant work better.

In the mean time, I have been pumping the Omega-3s (and don't worry, you can't take too many, "There are populations that consume over 20 grams of EPA/DHA daily, without adverse effect").
posted by scazza at 2:37 PM on January 20, 2005

absalom, that's one aspect of what I mean when I say that TLE is obscure. There is nothing current on the web!
posted by scazza at 2:39 PM on January 20, 2005

Fascinating post. And makes me think of how in modern society we seem to have all our "abnormalities" diagnosed, with treatments to correct everything from hyperactivity to obsessive-compulsive behavior, ADD and on and on. But this attempt to homogenize behavior often robs the individual of unique traits that can produce greatness in literature, performance arts and sports, among others. I remember reading one claim that the animal lover Francis of Assisi, historically portrayed feeding pigeons or glancing intently at a squirrel or some other creature, was actually a borderline schizophrenic holding silent conversations with those animals. Others believe Edgar Allan Poe was a manic-depressive who created his greatest works while in the latter state.
posted by terrier319 at 2:40 PM on January 20, 2005

but dogs are loyal.
posted by gorgor_balabala at 2:49 PM on January 20, 2005

Mark Salzman has a short novel called Lying Awake about this subject, which is pretty good.
posted by abcde at 2:53 PM on January 20, 2005

Ironmouth: There was a thread in Ask about precognitive dream experiences like that - I wonder if any of those who said they had them routinely might be TLE, come to think of it.
posted by abcde at 3:00 PM on January 20, 2005

scazza: I take Tegretol. Works like a charm. Can create some liver problems over time. Are you having mixed seizure events?

abcde the Ask thread was freaky. Some of those people should see a neurologist. I had no idea about my epilepsy until I had a huge seizure. It was the last thing on my mind.
posted by Ironmouth at 3:26 PM on January 20, 2005

Also --many seizure events create a tremendous sense of well-being, at least initially. I remember going to my neurologist and explaining how it seemed like everything was going so well in my life and how peaceful I felt. I was surprised when he told me that that is a common side-effect of seizures. He explained that electro-shock therapy tries to recreate this by basically inducing seizures. If it does what my first grand mal seizure did, then it must work. Can't imagine what it feels like though.
posted by Ironmouth at 3:29 PM on January 20, 2005

I'm on Trileptal (for frontal lobe sleep grand mal), which is closely related to Tegretol except with far fewer side effects (other than on your wallet).
posted by abcde at 3:44 PM on January 20, 2005

Ironmouth, I'm afraid of Tegretol. Liver problems, decreasing the effectiveness of the birth control I'm on (meaning I'd have to change my birth control as well), and all those other scary side effects. For a year or so when I started treatment after getting more frequent "episodes," as I like to call them, when I was 18 or so, I was bounced around on a bunch of different meds from Paxil to Trazodone. So I'm not looking forward to the adjustment period.

Recently my episodes have gotten worse, where I feel like I can't breathe. So, in light of my history of having certain symptoms ever since I was a child as well as my family history of random freak outs, this new doctor I've been seeing suggested the TLE possibility and that I should try Tegretol. The Neurontin I currently take doesn't help in any sort of heightened state at all, except to put me to sleep.
posted by scazza at 3:52 PM on January 20, 2005

Wow, this post is incredibly interesting. I've never really thought about epilepsy at all, but some of this applies to some weird stuff I've been experiencing lately. I'm not talking about alien abductions or anything, but recently I had this episode of strange sound distortions that I haven't experienced since middle school (I'm 19 now). I also have the obsessive creativity and some other traits, too, so this seems like something I should be aware of.
posted by buriednexttoyou at 5:01 PM on January 20, 2005

You tagged this with "the"? hehe
posted by graventy at 5:11 PM on January 20, 2005

Brains are definitely weird things, and I think the ease with which we lump all the effects of a certain kind of brain into one category is a little misleading - ie, to say that the artistic or philosophical aspect of a personality is the "result" of the disorder, doesn't seem necessary to me. Perhaps the seizures are the "result" of the personality (ie, a brain overwhelmed by intense mental experiences runs out & goes chaotic now & then...). Or perhaps they're different manifestations of an underlying structure (which does not mean that the 'negative' effect invalidates the 'positive' effect).

a little bit about my epilepsy here.
posted by mdn at 5:17 PM on January 20, 2005

Oh, and this reminds me of Tom Waits:

At 14, Waits went through a period when he was certain he had a disease no one else had. At night, just as his heart slowed for sleep, all the sounds in his room, in his house, out in the street, would increase in volume and size like monsters. TW: "My hand across the sheet sounded like I was doing it across a live microphone," Waits says. "My fingers would roar around my face in the air trying to make it stop. Just scratching and clawing at my face was maddening, it was so loud. It was a violent and terrifying thing to me as a child. I knew whatever it was, a doctor could not help me, and I was probably going to die." Waits told no one, not even his parents, and slowly developed his own meditation techniques for isolating the sounds and decreasing their volume. After curing himself, Waits began sampling sounds and studying them, recording on wobbly reel-to-reel machines, amplifying his guitar by listening to it with an ambulance driver's stethoscope stuck in the body while he played."
posted by buriednexttoyou at 5:37 PM on January 20, 2005

Thank you all!
A great post and an enlightening thread.
I'm not in the same league (me, generalized & controlled) but have known folks with TLE and I can add nothing other than a few links:
South Africa
Canada
UK
Some other links deal with sugical intervention and VNS (don't get on my case for passing it along, friends):
Medscape (reg required, Flash, biased toward hippocampal surgery)
Vagus Nerve Stimulation (real results, Any MeFites?)
posted by nj_subgenius at 6:02 PM on January 20, 2005

This is so interesting--thank you, scazza. And thank you too to everyone who added links in their comments and who talked about their own experiences. Good stuff to read.
posted by lobakgo at 7:01 PM on January 20, 2005

sorry, link here
posted by mdn at 7:12 PM on January 20, 2005

Current imaging technologies (brain SPECT scans and PET scans) are very good at pinpointing the seizure foci, so that objective diagnostic tests can usually definitively diagnose both the CPS (complex partial seizure) and SPS (simple partial seizure) forms, even if the patient isn't seizing at the time the imaging is done.

JAHxman, how does this work? I got the impression that TLE is hard to diagnose from my own psychiatrist, also because I have had certain symptoms all my life and it has been 10 years of seeing doctors that has actually resulted in one considering TLE.

scazza, I'm just learning about it myself - and like you, most of what I know I was told by my pdoc.

I didn't mean to suggest that TLE is generally easily diagnosed - it takes a docter clued in enough to the symptoms, and asking the right questions, to get things going in the right direction. I think there are lots of people with undiagnosed TLE out there, just because they have never had a seizure that generalized (became a full-brain seizure.) My pdoc says you don't even have to have seizures at all to have TLE - just auras are enough.

I've seen about a dozen doctors before my current one who never asked the right questions. I've never had a seizure that looked like a seizure - just occasional distortions of space and time, olfactory hallucinations very rarely, etc. Enough to make me think something was weird but I never suspected epilepsy - and the docs I saw were just focused on the more obvious symptoms - ADD type stuff and depression.

Anyway, here's a link to some SPECT studies, plus and here. Also PET studies. (usually can only get PET at a big research hospital.)
posted by JAHxman at 7:15 PM on January 20, 2005

graventy, that was part of "Alexander the Great" I was trying to tag. I've never used tags on MeFi before, I was seeing what would happen, so shoot me.

mdn, I think that is exactly why the personality arguement is not taken seriously at all, also because those traits are generally seen in people with mental disorders in general. I just wanted to put some sides of the arguement out there.

buriednexttoyou, that Tom Waits thing is very interesting. One of the symptoms that jumped out at me when reading the first link I posted is the "Alice and Wonderland" syndrome, where things appear enlarged or shrunken. I've had that ever since I was a child.
posted by scazza at 8:35 PM on January 20, 2005

JAHxman, I didn't mean to imply that you were wrong, no need to defend yourself, I am just interested in learning more. Thank you for the links.

Doctors have looked at my symptoms as anxiety just short of formally diagnosing me with anxiety, and anti-convulsants have been the only effective treatment. My mother is a nurse and as a child when I described to her the depersonalization and "Alice and Wonderland" syndrome that I was experiencing and really freaking me out, she brushed it off. TLE is the only thing that encompasses all my symptoms, family history and events in my life that I just assumed didn't have an explanation. I have assumed that this is just how my emotions function.

I'm considering asking my doctor if going up to Boston to Beth Israel Medical Center (where TLE research is being done and where I think Bear and Geschwind worked) would help, even though we do have NY-Presbyterian here in NYC.
posted by scazza at 8:46 PM on January 20, 2005

wow. i've never seen "temporal lobe epilepsy" abbreviated as TLE ever before. way to go 1988! nice that you've finally caught on... i imagine this erroneous abbreviation might be why you're having difficulty finding articles. also, have you looked at such websites as webmd and the national epilepsy foundation? there's tons of stuff on the web as these days, the disease is hardly obscure.

there are other forms of epilepsy which are still hard to diagnose, most notably frontal lobe epilepsy. the techniques that are used to diagnose temporal lobe epilepsy are only effective in 70% of frontal lobe epilepsy patients. the most accurate way of diagnosing frontal lobe epilepsy is still by implanting electrodes directly into the brain... a very very rare procedure. frontal lobe epilepsy is also much more rare than temporal lobe epilepsy, if i remember correctly, it only affects 3% of all people diagnosed with epilepsy.

anyway, while i always appreciate more reading info on epilepsy, i thought i'd point out that temporal lobe epilepsy is not as obscure in 2005 as it was in 1988.
posted by grapefruitmoon at 4:47 AM on January 21, 2005

"you don't have to have seizures to have epilepsy." - wow. whoever said this never talked to any of my doctors. some of whom believe that even if you do have seizures, you don't actually have epilepsy.

also : seizures are still the major diagnostic criteria of epilepsy. don't go self-diagnosing yourself as "possibly epileptic" because you're creative. i really think the epilepsy-creativity connection is overblown on the part of epileptics who want to make themselves feel better, because quite frankly, living with this disease sucks.
posted by grapefruitmoon at 4:56 AM on January 21, 2005

scazza--I'm a guy so I don't have to worry about the pill. That's one you gotta think over twice. Still, tegretol is great for me.
posted by Ironmouth at 9:15 AM on January 21, 2005

grapefruitmoon, thanks for the flame but I haven't been using the abbreviation in my searches. Would you like to share the plethora of sites that you have found? I think we all would appreaciate it.
posted by scazza at 4:00 PM on January 21, 2005

heck scazza, your post is excellent and all the flame does is seal in the juices.

grapefruitmoon needs a new MD. 25 years ago (when I was diagnosed) the major diagnostic criteria included a) EEG (waking and sleeping) 2) CAT scan (PET now of course), full blood work and in some cases a brief hospital stay for observation etc. 'Course that was before managed care. Ah, well.

PedanticFilter: A seizure is a seizure. Their recurrence can indicate of a seizure disorder but a competent neurologist uses all the tools available to eliminate non-epileptic etiologies, such as febrile seizures, those due to electrolytic imbalance or a hundred more anyone could Google up.

Thanks again.
posted by nj_subgenius at 5:01 PM on January 21, 2005

excellent first post, scazza - very interesting. good in-thread links & discussin, too. thank you.
posted by madamjujujive at 9:41 PM on January 21, 2005

I had my first seizure in 1973, when I was 13. I was told, after numerous tests including a spinal tap, that I had idiopathic seizures. I found out later that meant they had no idea why I was having them. I was put on lots of meds that didn't help. I barely remember high school. I think I slept through most of it.

It wasn't until 1997, after a seizure at the bus stop landed me in the hospital, that I was accurately diagnosed. I took the neurologist all of about five minutes to do it. I have JME (Juvenile Myoclonic Epilepsy). It's partially genetic, and only affects about 4% of the epileptic population. I'm completely controlled now with Depakote ER.

Interestingly, I also have some TLE issues, like the walls shifting, moving like a wave runs down them every so often. I'm also creative, and I'm spiritual, although I'm extremely fond of poking through different religions.

Another author who is epileptic, Karen Armstrong, is also an ex-nun. Currently she describes herself as a "freelance monotheist."

FWIW, in ancient times people who had epilepsy were said to be "touched by the finger of God" and respected as very holy people.

Sorry for the length of the post.
posted by Beansidhe at 7:19 AM on January 22, 2005

So, is this the Michael Jackson defense in the making?

Very interesting link. Thanks!
posted by ParisParamus at 8:03 AM on January 22, 2005

You might want to check out PubMed which gives 7,597 results for "temporal lobe epilepsy". They're almost all abstracts, though, so you might need to go to the library to read them.

"I especially like how that article basically suggests that all religion finds its root in brain disorders."

Wait. This article? The one that says,

To plead the organic causation of a religious state of mind in refutation of its claim to possess superior spiritual value is quite illogical and arbitrary. [Because if that were the case], none of our thoughts and feelings, not even our scientific doctrines, not even our dis-beliefs, could retain any value as revelations of the truth, for every one of them without exception flows from the state of the possessor’s body at the time.

posted by nTeleKy at 11:39 AM on January 25, 2005