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Posted 1/20/2013 5:28 PM (GMT 0)
I'm looking for anyone else out there who has emotional epilepsy.

Where brain scans look normal...yet if you get too much of an emotion you dont know how to cope and have a seizure.

I am concious throughout these seizures but I've no control of what I'm doing. During my most recent episode I self harmed. My body is covered in scratches as I've been clawing at my skin. I hate myself for getting like this. And I hate even more that I end up having my episodes in front of people. I dont want my friends to see me like this, most especially when none of them understand it.

Its difficult to find information online about this type of epilepsy. I just want to talk to somebody who is going through the same thing so I dont feel so alone.
Posted 1/21/2013 8:23 AM (GMT 0)
look up psychogenic non- epileptic seizures (or pseudo seizures) and conversion disorder
Posted 2/24/2013 9:34 PM (GMT 0)
hi.I am 27th years old. i have temporal lobe epilepsy. where i did have funny tastes. but have the feeling that something bad is going to happen or that i feel i have seen something before in another life time. feel scared and very unhappy. i wished i had never been born or found out that i had it. i hope we can help each other
Posted 2/26/2013 1:59 PM (GMT 0)
Since this post I have been to the doctors to get to the bottom of this. I explained my symptoms. Straight away they said it is not epilepsy...but it does sound very similar. He feels they are panic attacks. So I was referred to counselling.

She also thinks its panic attacks...but it seems a bit of an over-reaction to just be panic attacks to me? I know that I suppose panic causes it - I get too emotional, I don't know how to cope so I have a 'fit'.

Since the original post I've still not found anyone like me with this. Doctor says "its not epilepsy...but what you have is extremely rare, because I've never heard of it" (the councillor also says this). I'm trying really hard to keep in control. It is difficult. So difficult. But I've not had a 'fit' since this original post although I have come very close to it with ticks and such. If I'm honest, I feel more stressed by trying to stay in control. But at least I'm not a danger to myself or anyone else this way.
Posted 2/26/2013 6:26 PM (GMT 0)
zdrast,

I also have the same symptoms as you and my brain scans all look normal.

Hi from Ontario for everybody reading this post.


I've had epilepsy since 1979, controlled by meds.
I get a form of petit mal seizures that my Dr. calls "speech arrest". It only lasts a few seconds, I am aware of what is going on around me but I can't respond.

When I try to talk, my speech is slurred (more than usual).
Most people have no problem speaking but I have to concentrate to form every word. (all the time but twice as hard during a speech arrest).
Everybody thinks I'm stoned all the time.

Boy, I didn't realize that we take our speech for granted so much.

Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Posted 3/5/2013 3:47 PM (GMT 0)
RanMan,

Ha my accent in the UK is to slur. I barely pronounce anything, but now I'm at uni and have moved out of my home town for a few years now I've had to try to speak better. Its hard to stress words and sounds that arent natural to you isnt it?

Think you'd feel more at home in my home ;)

How do you feel about being on these meds. Do the meds make you have this speech arrest (as appose to something greater) or is this why you are on the meds?

Again I've stuck with counselling and they are adamant its anger issues. I nearly had another 'fit' the other day. I was in a nightclub (completely sober) and something set me off. I was scratching at my arm and felt parts of my body twitching ready to contort into a seizure. But instead I ran off to the toilet on my own, sat myself down and concentrated on crying it all out rather than setting off. It was very difficult - like holding back a sneeze. I dont really remember much on it now as this was 2 weeks ago. But i just remember feeling more stressed at turning it into tears.

I suppose like some tourettes - with will power you could control it, but its difficult and stressful and uncomfortable
Posted 3/8/2013 9:24 PM (GMT 0)
I had an episode last night which prompted me to search "emotional epilepsy" today and I found this thread.

My background: In 2005 at age 29 I had my first grand mal seizure. I was hospitalized and had two more seizures during my three-day hospital stay. Although, my EEG and CT scans didn't turn up anything definitive regarding epilepsy, I was prescribed anti-seizure medication which I took for the next two years. In that two years, I only had one other seizure. In December 2007 I stopped taking medication.

Meanwhile, since high school I've had what I've come to realize is (probably) temporal lobe epilepsy with simple partial seizures (incredibly strong but difficult to explain feelings similar to jamais vu, deja vu, and lucid dreaming). However, I haven't had one of those episodes in several months. I saw a neurologist last year regarding these episodes, and he didn't find anything then either. (Although he said they might have seen something if I'd experienced an episode during the test.)

Last night, however, I experienced something new. I got home around 10pm after a three-hour session of group therapy/yoga/guided mediation. You'd think when I got home I would be in a blissed out, zen-like state. Instead, I went into a rage. Rather than decompressing on the couch with my husband and pets, I sought out places where my semi-incontinent senior dog might have soiled. I discovered that about 90% of the books on the bottom shelves were ruined. I started to go through the books to see if any could be salvaged and something snapped. I started throwing the books across the room and screaming. I was so enraged, I wanted to break or hurt something. I vacillated between throwing things and sitting almost catatonic, unable to move. When I finally straightened up the books, I took a long shower. I spent a good deal of shower time sitting in a ball repeating "Make it go away make it go away make it go away". It was very scary.

The entire evening I knew I was being irrational and out of control; but I couldn't use that knowledge to get centered and focus. It was truly as if I had no control over my emotions at all; like an out-of-body experience except I wasn't watching myself, I was experiencing myself.

I'm feeling a little better now; about 14 hours later. And now I realize there were probably several factors that may have led to this episode. The aforementioned potential TLE; lack of food (except for an apple after yoga and before meditation, I hadn't really eaten since lunch); dehydration; menstruation; and two other things.

1) I've been a regular pot smoker for several years and I've recently decided to quit. It's still early, but I haven't smoked in about a week. I believe a semi-constant "mind fog" kept intense emotions at bay. The hour-long guided meditation session could have unleashed some pent-up, raw emotion that was a little more intense that I'd anticipated or was prepared for. (Hopefully, regular meditation - and avoiding MJ - should eventually help gain better control of said emotions.)

2) My wellness coach advises to never be H.A.L.T.: Hungry. Angry. Lonely. Tired. I was all four

I also had my first panic attack in early February. I think that might be somehow related, too.

Brains, huh? Anyway, sorry for the long post. But thank you for starting this conversation!

Post Edited (spacedaisie) : 3/8/2013 2:29:15 PM (GMT-7)

Posted 3/9/2013 9:03 PM (GMT 0)
Thank you for the long post. All your reasons you've stated that could have explained your behaviour seem very likely. I'd never considered such things like HALT etc. The weed I've known can be a problem, so its good that you've stopped. It will probably be badly for now since you've stopped so suddenly, but in the long run that seems best.

Its a shame there isnt much information out there about emotionally triggered seizures. Even more so a shame that doctors can't pin point it. But I'm glad this thread helped you out, if only a bit.

When you were repeating yourself in the shower. Did you have much control over what you were saying? Or did the words seem to flow out on their own constantly looping? And did you feel a bit spaced out during this?
the rage before, Were you screaming and contorting your body into positions that i suppose arent natural?

I have Lucid dreams all the time...are they connected to epilepsy? because i've never thought much on them
Posted 6/30/2013 4:01 AM (GMT 0)
I have what is called emotionally epilepsy. My problem is excess anger. I am lucky as it is known as Intermittent Explosive behaviour or Disease. I have wrecked two marriages and a few jobs. I feel for you.
Posted 3/20/2014 5:14 PM (GMT 0)
hi - our daughter, aged just 4yrs, is seeing a play therapist for attachment anxiety issues. she has some terrible meltdowns, triggered sometimes by obvious things (being told off, getting upset etc) and other times for no apparent reason or very minor issues (my hair clip has fallen out) - these episodes can last over an hour - consist of her growling and shouting, repeatedly, the same few nasty comments. she goes rigid from head to toe - so bad that sometimes afterwards she complains that her muscles ache. her eyes goes blank and she doesnt seem to recognise us, cannot bear to be touched (yet is a very loving and tactile child) and afterwards usually cant remember what has happened. although she does usually remember the trigger. she has a strength way beyond her normal capability and can punch and kick, things that would normally render her in tears with 'a poorly', she doesnt even seem to feel it. sometimes she will shout 'i cant stop, i cant stop, help me stop, help me stop'. her therapist has told us to research 'emotional epilepsy' as there is nothing 'physically' wrong with her. thank you for starting this thread and i hope other people can share their stories to give us more of an understanding, in case our baby is a sufferer. thanks
Posted 4/29/2016 1:14 AM (GMT 0)

zdrast said...
I'm looking for anyone else out there who has emotional epilepsy.

Where brain scans look normal...yet if you get too much of an emotion you dont know how to cope and have a seizure.

I am concious throughout these seizures but I've no control of what I'm doing. During my most recent episode I self harmed. My body is covered in scratches as I've been clawing at my skin. I hate myself for getting like this. And I hate even more that I end up having my episodes in front of people. I dont want my friends to see me like this, most especially when none of them understand it.

Its difficult to find information online about this type of epilepsy. I just want to talk to somebody who is going through the same thing so I dont feel so alone.



I'm not sure if you're still active on here.. But I would love it if you would contact me or reply. All of your symptoms are the exact same as mine and I have no idea what it could be. I've had it for years and its only gotten worse. Your posts are the closest I've ever gotten to hearing someone describe what I experience.
Posted 12/10/2016 4:38 AM (GMT 0)
You will be interested to read the book, "Seized", which details isolating Temporo Limbic Epilepsy in the 1970's and 80's by using deeply implanted electrodes. This protocol resulted in epilepsy patterns, which had not shown upon superficial EEG's. Most of those docs have died or are retired. But there is one who is still alive and practicing - Dr Andrew Herzog. He is quite elderly now, but still practices.
He was a young resident during the collecting of "Geshwind's Syndrome", which is very similar to this description of emotional seizures. My dd has a severe case of these seizures. Possibly they were triggered by a traumatic brain injury, possibly by the onset of Lyme disease - not sure. But they are best controlled with therapeutic levels of anticonvulsant. Enjoy the read!
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