Neuro app: some embarassing TLE stuff exposed

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vapour

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Hi, before you all read on, this could be considered R rated, not sure what hte guidelines are here on that.. just to let you know.

I saw my Neuro today and it went well. She was extremly caring given what Ive been through since I last saw her.

Good news is .. she is in great contact with psych UCLA now...so they are collobariting as a team together (for the time until i know whats happening there) as meds overlap for mood and epilepsy.

I am doing better than the other week, which is good.

We spoke about alot of things together and how she is happy with this psych at UCLA as he knows alot (she told me) about TLE which is awesome for a psychiatrist.

SO..

I explained to her I read an article a while ago about hypersexuality and TLE. For a while now I have been extremly hypersexual (very embarassing) and esepcially after being in status epilepticus. Its actually that bad that it interferes with my work because its *something* I cannot get off my mind.

We didnt get into discussing a solution .. and not sure if there was one as time was running out (had been in ther ean hour) and she needed to quickly type up notes.

Was wondering if anyone else has had.. or has this problem...and what they did for it .. apart from getting married LOL (joke)

ALso explained how Ive become obsessed with religion over the years...its actually crazy, all I do in my spare time if Im not thinking about... that ..hypersuxuality is sit in the hammock and think about the universe, god, theology, philosophy. Usually when you read about a disorder you think.. oh wow im like that.. everyone does....but this is to a ridiculous extent.. a RIDICULOUS extent.. I mean TLE describes me to a *T*..I have Bipolar also, but when I read about bipolar I dont relate to it as much as I relate to this diagnosis.

We discussed reflex epilepsy, she is not sure if I have it.. since its rare.. but I think I do... she also said the seizures i have when around alot of conversation or stimulation might not be reflex epilepsy .. but the stress of being around so much .. triggering them instead, and that psych department will be able to help me with this part.

We always get talking alt during my app, she spends alot of time with her patients, and she told me some of the worlds greatest thinkers have TLE!
 
Seems to me that you might find ways to use your energy in positive ways.
Have you ever considered writing a book?
 
There have been studies (using galvanic skin response, sort of like a lie detector) that show people with TLE have an unusually emotional response to religious words. The thought is that the medial temporal lobe may be specifically involved in generating some of the emotional reactions associated with religious words, images and symbols.

As for hypersexuality -- it's rarer with TLE, but when it shows up it either shows up after a seizure, or after someone has had a temporal lobectomy. Sounds like it's the former case for you.

I hope your neurologist and psychiatrist can figure out a way to modulate the um, more compulsive parts of your brain that the TLE has stimulated. It's great that your docs will be working as a team.
 
Thanks.

Yes Robin I have considered writing a book...never got around to it though. A while back I meant to start writing down my ideas, thoughts... my own quotes I have made up ex "I like to think the way I think" lol .. that one came out when someone was asking me what i was thinking about and my reply was "Im thinking about why I think the way I think"

SO I could write a bunch of stuff down that goes through my head and sort of talk about it .. around it and such... but I have not doe it yet, but maybe I will start....I want to do something right now that gives me meaning.

Nak...I didnt know it was unusual to get the hypersuxual stuff.. but.. after the status epilepticus 3x it was extremly bad... right now its still bad. my neurlogist basically said its typical TLE and that ... (I see this as unfortunate)... once you start getting like that... your sort of attatch to it because it becomes a comfort thing.. whether the religion or hypersexual stuff... and so I guess its almost a vicious circle.

I have been too embarassed to talk about this for months but I figured oh well.. Im going to tell someone and I feel relieved.
 
I wonder if it's something that neurofeedback might help with?
 
Vapour,

I'm so glad to hear that you've found a neurologist who takes time to listen to you, plus a psychiatrist who knows about temporal lobe epilepsy. Treating temporal lobe epilepsy is different. A percentage of folks with temporal lobe epilepsy, some do experience the hypersexual and religious episodes you describe.
And some of the great thinkers, leaders, writers, etc. of the world did experience epilepsy; Dante, St. Paul, Alexandar the Great, Napolean, Joan of Arc, Edgar Alan Poe, Van Gogh, Tchaikovsky, Beethoven, Dickens, and many more (like us). :)

For some interesting info on this subject visit:

YouTube-Ramachandran, the Temporal Lobes & God
 
Hey thanks cint, thats an interesting documentary.

I also wanted to get something else off my chest. She knows about my symptoms of complex partial seizures on waking or falling asleep (rarely during the day..usually only simple partial in the day) but I didnt mention 2 symptoms to her (at least I think they are sympsoms/seizures)

2 weeks ago or so when my seizures were bad and i started having complex partials again....this happend (and it happened early hours of this morning)

I woke up chewing.. or maybe coming out of the seizure and noticing im chewing.. and my right arm go down in my freaking pants...

Now, the weird thing is .. they say you never remember complex partials... there is alot I dont remeber .. like how long it went on for .. and afterwards Im unsure if something I experienced really did, but I can tell you I do wake up chewing and my arm going down my pants.

I PRAY this wont happen during the day...I may tell her this today call her up, I dont know.

About a week ago.. Im guessing something happened as I was sleeping or waking up and I didnt realize... because.. my friend came in here (friend im staying with currently) to say goodnight and turn the light off... and when I woke up I realized my hand was over my private area. When I realized.. I totally freaked up and jumped up.

Cint, I am so hyperreligious and hypersexual right now and have been for months it seems all my private time or even life (since its interfeering with work) is built around it.

Its been a weight off my shoulders to tell her and write this post. I am still very embarassed though, i am considering calling my therapist and going to talk to her about it...if I can pluck up the courage/

My Neurologist said after a bad on going seizure it can do this.....she also said then you can grab hold of this problem as a comfort...and Im worried thats what happened. Perhaps its not due to having a seizure right now.. or having seizure activity going on.. what if its become a chronic condition.. I dont know.

Im wondering what hte treatment can be for it. Im not so bothered by the hyperreligious stuff as I am the hypersexual stuff.
 
vapour:
(I'll start off by saying, please dont take this the wrong way, but it's the only exapmle I remember hearing about.)

I was doing a study in my psychology class about addictions. And you were asked to pick one out of a hat. There were things like hair pulling, cutting, illegal drugs, pain killers, alcohol etc. The one I got was a sex addiction (yes this happens)

And what I found is that the addiction arose from one of 3 things. 1) sexual abuse as a child and this was found to be acceptable where the person lost the comfort of the closeness felt with the person doing it.

2) they have a chemical or hormonal imbalance that causes the "horny" feeling (similar to a chemical imbalance that causes a depression feeling) that they need to get rid of, and sex is what they turn to

and 4) that something misfires in the brain during an orgasm or during regular activities that triggers the "horny" sensation "similar to the fear aura" and they decide that to get that to stop, (or they like the feeling of being a "sex god" ) they must have sex and their libido is higher.

My suspicion is that during a seizure your brain might be misfiring those signals, or while seizing your producing those excess chemicals and hormones, where as your coming out of the seizure you feel Hypersexual.

Just my two cents. sorry if that was a little too much information!
 
Hey Vapour, I can't remember -- are you on Lamictal? In some relatively rare cases Lamictal has caused hypersexuality, or made it worse.

In terms of treatment, the SSRI drugs have been used with some success (they're known for killing the libido) so maybe your neurologist/psychiatrist will have some recommendations about that.
 
I think in the case of epilepsy-related hypersexuality, it is indeed related to chemical imbalance, specifically with dopamine.
 
Hey its not too much information at all. I appreciate that knowledge its helpfu, at the moment I feel my life is driven by this problem, also driven by the religiousity also...

Yes I am on Lamictal I had to re-start it (yet again) but I will add that I startd lamictal 3 years ago at first for bipolar, and I never had this problem then. This has become a problem as the seizures became more prevelant...I noticed the pattern in hindsight.

Right now im on a low dose...and plus.. when off it ... it didnt solve it, so I dont think its lamictal...

Now Im worried perhaps this has led to an addiction,.. perhaps seizure activity to start with .. but now an addiction .. because though I do have a few seizures during the day at the moment (not as bad as 2 weeks ago) maybe im just now addicted...or maybe these few seizures are still causing it .. I dont know.

My neurologist should be calling me later today as I emailed them due to forgetting to mention the .. hand going down my pants on waking thing.. and I need to ask another question, so Ill ask her more about this...

I just feel its driving my life....as soon as someone leaves the house .. it goes through my mind.. as soon as i go to the bathroom it does... infact ... sometimes I have to leave where I am .. multiple times during the day because of this...when im playing a video game i have to keep pausing it...man .. I know this is extremly...personal or maybe too much i should not be saying.. or watching a movie....

anyway...the replies are helpful, I should probably talk to my therapist about it.
 
I don't think it sounds so unusual. My dad had complex partials and always seemed to "touch himself" during it. A little embarrassing for a 14 year daughter to witness but I got over it. As for my simple and complex partials well they did have an almost orgasmic feel maybe thats why we always want to sleep after and yes I've also always been very spiritual. I was positive by age 4 that there was a God and only one God and by age 10 that we were not our physical bodies but something much greater. My yoga teacher was so jealous how I would "see" things during meditation. Near the end of my dads life, he died during a tonic clonic, he became obsessed with religion and of all things time travel. After seeing the movie Somewhere in Time he kept reading about it. I happened to be watching that movie while I was at the EMU and later during a seizure I realized how much it felt like the scene where Christopher Read gets pulled back into present time. That must have been what triggered his need to research it. We saw that movie together and he went back several nights in a row. My dad was also an amazing thinker and I find I now over think all the time sometimes to the point of exhaustion I notice many people here do that also. As you can see I'm doing it right now - sorry.
 
Ive had the same thing, Im of weird TLE and bad bipolar form. I believe it goes something like this.. seizure (the brain decreases neural activity, an attempt to inhibit seizures hence "post-ictal depression") however the brain also increases testosterone, (as testosterone is an anticonvulsant, eg decreases of which probably cause the menstrual-seizure link). I personally get it after multiple seizures and in the following order seizures, then depression, increase libido, normal, mania, seizure.
 
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