Coping With Epilepsy SUDEP Action
Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen



Reply
 
LinkBack Thread Tools
  #1  
Old 09-12-2016, 04:40 PM
acshuman's Avatar
Weaving the Community Fabric
 
Join Date: Feb 2016
Location: Glencoe, MN, USA
Posts: 497
Thanks: 56
Thanked 187 Times in 154 Posts

NEE(Non-epileptic episodes)


I saw something happen last Friday that I had never seen before and never knew existed!
A person who was speaking at an EFMN(Epilepsy Foundation of Minnesota) had a NEE. The person suddenly collapsed down to the floor just the way a person who is having a seizure would. The part I didn't understand w/o some explanation was that this person did not have an epileptic seizure! What members of CWE know about someone who has this kind of problem?
It was really interesting to google 'Non-Epileptic Episodes' and read about the explanations of how this happens for people.
I would think that NEE could very easily be mistaken by someone for an Epileptic Seizure!
Anybody have any thoughts about this?

acshuman
__________________
Epilepsy doesn't control MY life, I DO!
Reply With Quote
  #2  
Old 09-12-2016, 06:00 PM
Venerable Voice of CWE
 
Join Date: Apr 2013
Location: British Columbia, Canada
Posts: 2,080
Thanks: 867
Thanked 1,105 Times in 781 Posts
acshuman: It is extremely common for someone to be misdiagnosed and told they have epilepsy when they have some other condition, and it is common to be misdiagnose as having some other condition when in fact they do have epilepsy. Just go to Google Scholar and type in: "Epilepsy Imitators". You'll get a whole range of conditions that can cause episodes that may look like seizures but are not, including (but by no means limited to) falling/fainting due to orthostatic hypotension, paroxysmal dyskinesia, tics, and dystonia attack.
Reply With Quote
The Following 2 Users Say Thank You to masterjen For This Useful Post:
acshuman (09-12-2016), CathyAnn31 (09-13-2016)
  #3  
Old 09-12-2016, 07:00 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,491
Thanks: 950
Thanked 7,341 Times in 5,421 Posts
I'm curious to know how it was determined that the speaker wasn't having an epileptic event? As masterjen pointed out, there are many conditions that mimic symptoms of epilepsy, but given the context, an epileptic seizure would be the first thing to come to mind...

A condition often discussed at CWE is Psychogenic Non-Epileptic Seizures, in which seizure-like symptoms are caused by emotional stress. It can sometimes be tough to diagnose, and is sometimes mistakenly applied to people with epilepsy who have negative EEGS.
Reply With Quote
  #4  
Old 09-12-2016, 08:04 PM
acshuman's Avatar
Weaving the Community Fabric
 
Join Date: Feb 2016
Location: Glencoe, MN, USA
Posts: 497
Thanks: 56
Thanked 187 Times in 154 Posts

Exclamation Condition Known


The speaker's condition was known to the people from EFMN(Epilepsy Foundation of Minnesota). Because of this knowledge no one was worried about what happened. Some of these people had seen what happened when the speaker had an episode like this, so they were never worried about what to do and what NOT to do!
This was something that was new to many of the 200+ people at the fund-raiser, so there were quite a few gasps when the speaker first collapsed.

acshuman
__________________
Epilepsy doesn't control MY life, I DO!
Reply With Quote
  #5  
Old 09-12-2016, 10:00 PM
StrongerThanEpilepsy's Avatar
Weaving the Community Fabric
 
Join Date: Mar 2016
Location: United States
Posts: 107
Thanks: 89
Thanked 42 Times in 25 Posts
Originally Posted by Nakamova View Post:
I'm curious to know how it was determined that the speaker wasn't having an epileptic event? As masterjen pointed out, there are many conditions that mimic symptoms of epilepsy, but given the context, an epileptic seizure would be the first thing to come to mind...

A condition often discussed at CWE is Psychogenic Non-Epileptic Seizures, in which seizure-like symptoms are caused by emotional stress. It can sometimes be tough to diagnose, and is sometimes mistakenly applied to people with epilepsy who have negative EEGS.
I think I've seen a psychogenic non epileptic seizure before. This girl I knew out of nowhere collapsed, was shaking and was crying during it (like crying out loud). It was only a few seconds but it was enough to scare everyone. Afterwards, she was talking and eating pizza a few minutes later like nothing happened. She told us that she has severe anxiety and has "severe panic attacks" a week after that. I'm air quoting because it looked just like a seizure and I've never seen a panic attack like that before.

Not sure what was the cause of the speaker's event, but:
-eyes closed during the episode
-ictal crying
-more so trembling movements than clonic
-sudden start and stop
-movement in limbs not "together" (like asynchronous basically)
is more likely psychogenic non-epileptic seizures than epilepsy (this doesn't mean that this can't happen in epilepsy but it's rare and this is common in psychogenic non-epileptic seizures)

This is a long list on many imitators of epilepsy.
Reply With Quote
  #6  
Old 09-12-2016, 11:59 PM
Venerable Voice of CWE
 
Join Date: Apr 2013
Location: British Columbia, Canada
Posts: 2,080
Thanks: 867
Thanked 1,105 Times in 781 Posts
Originally Posted by StrongerThanEpilepsy View Post:
I think I've seen a psychogenic non epileptic seizure before.
Not sure what was the cause of the speaker's event, but:
-eyes closed during the episode
-ictal crying
-more so trembling movements than clonic
-sudden start and stop
-movement in limbs not "together" (like asynchronous basically)
is more likely psychogenic non-epileptic seizures than epilepsy (this doesn't mean that this can't happen in epilepsy but it's rare and this is common in psychogenic non-epileptic seizures)

This is a long list on many imitators of epilepsy.
Some of these features are often seen in frontal lobe seizures, which is why those with frontal lobe seizures are often misdiagnosed as having psychogenic non-epileptic seizures.
Reply With Quote
The Following User Says Thank You to masterjen For This Useful Post:
Nakamova (09-13-2016)
  #7  
Old 09-13-2016, 06:55 AM
acshuman's Avatar
Weaving the Community Fabric
 
Join Date: Feb 2016
Location: Glencoe, MN, USA
Posts: 497
Thanks: 56
Thanked 187 Times in 154 Posts

LightningBolt I Found Out Why!


After talking with some people who knew the speaker, at the fund-raiser, I found out that the speaker had not been asked to speak at the fundraiser until after the event started. This meant that she had no time to prepare for being on the stage. She has a severe case of anxiety and the fact that she was going to suddenly be up in front of the audience is probably why.
She was back standing up and speaking again in less than 5 minutes! She never even thought of not continuing.
I spoke with her later and I would never have know that something like that had happened by the way she presented herself.
It was obvious she had the right kind of attitude for a person who has a condition like this! She accepted having that episode as a normal part of her life and never thought about it after it had happened.
This is the same way I accept having a seizure. Of course it helps that I have never been injured during a seizure!
From speaking with people at the fund-raiser I found out that many of them had experienced something similar to me. The people told me that either they or their child who was having an EEG seemed to NOT have a seizure while hooked up to the EEG. One lady said her daughter had over 100 seizures a day, but when she was hooked up to the EEG she went for several hours w/o a seizure. The mother said 'Can you imagine trying to keep a 4 year old sitting still for several hours?'.
Has anyone else had this happen?

acshuman
__________________
Epilepsy doesn't control MY life, I DO!

Last edited by acshuman; 09-13-2016 at 07:06 AM.
Reply With Quote
The Following 2 Users Say Thank You to acshuman For This Useful Post:
Nakamova (09-13-2016), StrongerThanEpilepsy (09-13-2016)
  #8  
Old 09-13-2016, 03:31 PM
StrongerThanEpilepsy's Avatar
Weaving the Community Fabric
 
Join Date: Mar 2016
Location: United States
Posts: 107
Thanks: 89
Thanked 42 Times in 25 Posts
Originally Posted by masterjen View Post:
Some of these features are often seen in frontal lobe seizures, which is why those with frontal lobe seizures are often misdiagnosed as having psychogenic non-epileptic seizures.
Ohhh good point! Speaking of the two getting mixed, I read that people with psychogenic non-epileptic seizures can "react" during a seizure, so if you poked them with a thumbtack, they can flinch. But people with frontal lobe seizures can also have preserved consciousness in some type of seizures, so I don't know how this really works.

This has to do with the EMU but
I also saw in a medical journal that bringing a teddy bear, wearing cartoon pajamas, and using ten or more colors to describe your seizures when asked to describe them with a drawing is a good indicator of psychogenic non-epileptic seizures. Sounds like bs in my opinion.
Reply With Quote
  #9  
Old 09-13-2016, 08:30 PM
Venerable Voice of CWE
 
Join Date: Apr 2013
Location: British Columbia, Canada
Posts: 2,080
Thanks: 867
Thanked 1,105 Times in 781 Posts
I'm not exactly sure what you mean by "flinch", but people with many types of seizures in which consciousness is in no way affected (whether frontal lobe or from some other part of the brain) will likely react in some way to a poke with a thumb-tack, or at the very least will be able to recall that they were poked with a thumbtack. (So in a case like this, the "poker" better watch out because the one that was poked may come after them )
Reply With Quote
  #10  
Old 09-13-2016, 11:39 PM
valeriedl's Avatar
CWE Supporter
 
Join Date: Feb 2010
Location: Pittsburgh, Pennsylvania
Posts: 4,017
Thanks: 1,492
Thanked 1,463 Times in 1,061 Posts
I'm sure many of you have heard about Hillary Clinton 'fainting' after giving a speech by now and probably seen the video of it. She basically fell and one of the security guards caught her and literally threw her in the van. Some people are saying she had a seizure and others are saying this happened because she has the pneumonia. A few hours after it happened she walked out smiling and waving at people, this is what my husband says I'm like after a seizure. If she has an pneumonia you'd think she would have been in bed all day, just my opinion.

Could she have just fainted because of the pneumonia, had some sort of NEE or could she actually have epilepsy and this was a real seizure? I don't want to start some sort of huge argument over this on here, the whole world is arguing about it right now, so please remove this post if you think it should be.
Reply With Quote
  #11  
Old 09-13-2016, 11:49 PM
Joined the Party
 
Join Date: Feb 2016
Location: Seattle area
Posts: 91
Thanks: 20
Thanked 27 Times in 21 Posts
Another diagnostic problem is that people with psychogenic non-epileptic seizures can also have epilepsy. Having one does not mean one doesn't have the other.
Reply With Quote
The Following User Says Thank You to Hobbes For This Useful Post:
StrongerThanEpilepsy (09-14-2016)
  #12  
Old 09-14-2016, 12:26 AM
StrongerThanEpilepsy's Avatar
Weaving the Community Fabric
 
Join Date: Mar 2016
Location: United States
Posts: 107
Thanks: 89
Thanked 42 Times in 25 Posts
Originally Posted by masterjen View Post:
I'm not exactly sure what you mean by "flinch", but people with many types of seizures in which consciousness is in no way affected (whether frontal lobe or from some other part of the brain) will likely react in some way to a poke with a thumb-tack, or at the very least will be able to recall that they were poked with a thumbtack. (So in a case like this, the "poker" better watch out because the one that was poked may come after them )
Lol! If I find the study then I'll post it here but I think it was referring to the tonic clonic type where the person is unconscious.
Reply With Quote
  #13  
Old 09-14-2016, 12:36 AM
StrongerThanEpilepsy's Avatar
Weaving the Community Fabric
 
Join Date: Mar 2016
Location: United States
Posts: 107
Thanks: 89
Thanked 42 Times in 25 Posts
Originally Posted by valeriedl View Post:
I'm sure many of you have heard about Hillary Clinton 'fainting' after giving a speech by now and probably seen the video of it. She basically fell and one of the security guards caught her and literally threw her in the van. Some people are saying she had a seizure and others are saying this happened because she has the pneumonia. A few hours after it happened she walked out smiling and waving at people, this is what my husband says I'm like after a seizure. If she has an pneumonia you'd think she would have been in bed all day, just my opinion.
This has been all over my facebook. People kept commenting on the video (posted on a news page) that she had a seizure and others were saying it wasn't one. Some are saying she has Parkinson's disease. There was another video of her from April and she kept shaking her head back. I think she moved her head in disbelief (like when you cock your neck back after hearing something ridiculous) but it was a little too long, repetitive, and over exaggerated so I saw comments about that video too about she was having a seizure and others said no.
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
episodes during sleep??? Gretel The Kitchen 6 04-16-2014 03:30 AM
What are these episodes?? masterjen The Kitchen 5 03-07-2014 11:09 PM
My 2 year old has epileptic episodes milkymum The Nursery 35 01-05-2010 06:10 AM
Myoclonic episodes and negative EEG seastes The Foyer 9 01-27-2009 04:53 PM
my son has 'episodes' lahacade The Foyer 11 06-24-2008 07:33 AM


All times are GMT -5. The time now is 08:26 PM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.