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teft
teft

Nonepileptic "Events" vs. "Seizures"

Nonepileptic Seizures are "seizures", plain and simple. They are not considered true "Epileptic" seizures but they are actual seizures. The old term (unfortunately still in use in some areas) is psuedoseizures, which, of course, is outdated and implies "faked" (psuedo) seizures. Nonepileptic Attack Disorder (NAED)is being used in England, but is problematic in its use of the word "attack". A newer term, now in use by some researchers, is Nonepileptic Events. In my opinion this is not a step forwards in the study and treatment of these seizures. This term is meant to clarify that these seizures are not Epileptic in nature. While this may be helpful to researchers it does a diservice to those who suffer from NES. To me it actually downplays the severity of the seizures as well as implying that the seizures are something other than "real" seizures. They are, in fact, exactly as debilitating as Epileptic Seizures. We don't need to isolate those with NES any further than they already have been isolated. We need to make sure that these are "Seizures" we are dealing with, despite the cause. The medical community convienently conveys responsibility for treatment of NES to the psychological community which seems to know next to nothing about them. I beleive that Nonepileptic Seizures is the correct term. It implies that they are not true Epilepsy and yet it retains the seriousness of the main sympton, seizures. Besides, we sometimes seem more interested in labels than we do in solving the problem. Lets just keep Nonepileptic Seizures as the term to use and get on with the treatment and cure. Teft

By teft at Fri, 09/16/2005 - 10:09pm | 2710 views | 21 comments
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Stupid Question
this is a stupid question, but why are you seeking information about nonepileptic sz on a site dubbed 'epilepsy.com' and in a forum known as 'my epilepsy'? please don't think i'm being a hard a$$, but wouldn't you recieve better info. at a place more suited for non epileptic szs? Sunshine and Daisies, ~Cass "There is no exquisite beauty without some strangeness in the proportion" -Edgar Allen Poe
Cassie_W
By Cassie_W on Sat, 09/17/2005 - 1:23pm
It's not a stupid question
Cass, there are no sites I'm aware of strictly for NES. There should be though. Teft
teft
By teft on Sat, 10/01/2005 - 3:12pm
"more suited for non epileptic szs?"
Sorry Cass, there really doesn't seem to be any place like that and epilepsy.com is one of the more sympathetic and listening forums. There isn't much info out there about the condition, and many of us are sceptical and confused about our diagnosis. I personally find some of my anxiety alleviated by being able to share my concerns and experiences with other people. The similarities between different diagnosed conditions, I guess, are up to the individual to discern - but there aren't many people that have much idea of what NES sufferers go through, just as most people walking down the street can't fully empathize with epileptics and their families. Last time I saw my neuro he said there is no difference between the physical and the mind, I'm not sure how existentialism is supposed to help me understand what's going on, but maybe someone else will get it?
lmcg82
By lmcg82 on Sun, 09/18/2005 - 3:10am
My thoughts on referrals
I would say that when the other medical conditions are explored and ruled out, the referral to psychological help is appropriate. But getting a good psychologist/psychiatrist is the real trick. They are few and far between in our experience. Teft
teft
By teft on Sat, 10/01/2005 - 3:16pm
NES
My sister-in-law is 50yo and has had epilepsy since she was a child. She has suffered grandmals and Complex Partials and been on a cocktail of drugs for years. Two years ago she had surgery and has been seizure free and is going for a drivers licence for the first time in her life. She celebrated her 1st year seizure free by going for a joy ride in a bi-plane. During the tests leading up to her surgery she was found to be having some NES as well as her epileptic seizures. She said her neuro explained that, at times, possibly under stress, her body/brain would mimic the epileptic seizures. Same result, different catalyst. Apparently this is more common than previously thought. She was evaluated as a surgery candidate after suffering third degree burns while trying to hug/polish a kettle full of boiling water while having a complex partial seizure. You ARE in the right place. Smiles, Maryanne :)
yannie44
By yannie44 on Sun, 09/18/2005 - 2:44pm
NES
My experience in my research has been to read that non-epileptic seizures (auras, weird feelings, few seconds of feeling out of it, or feeling of momentarily being paralyzed, and so many more symptoms) are indeed a "form - albeit a more benign form" of epilepsy. It's just that the medical profession does not like to "call" it true epilepsy because of the lack of losing consciousness or falling, thus they use the term NES. (Myoclonus, kind without loss of consciousness which I have, is also a form of SP's.) They also are called Simple Partial SEizures and EVERY time I have looked up this terminology, it appears in conjunction with all other kinds of seizures AND... epilepsy. I don't know how you can really separate them in the light of this. Also, SP's often progress into generalized or complex partial seizures at some. I personally ... am ... on medication for the SP's, Lamictal and Neurontin (both indicated for SP's by medical literature and studies); and though recently it has been strongly suspected I have progressed into complex partial seizures, it has not been confirmed... as of yet. The neurologist and epileptologist say it MAY be do to the fact that I am on already on meds and they are actually controlling "epileptic "seizures. As said, this site provides information on NES. They are not the same as "faked" seizures which does happen sometimes. I agree that psuedoseizures is an inappropiate and misleading name to call NES. They originate from a disturbance in the electrical activity of the brain just as convulsive seizures. just my thoughts... =) take care
hewie
By hewie on Wed, 09/21/2005 - 4:11am
True Epilepsy vs. NES
Remember though that with NES there is also loss of consciousness or falling and can resemble grand mal. Teft
teft
By teft on Sat, 10/01/2005 - 3:22pm
Re: True Epilepsy vs. NES

I have NES and I have these episodes daily and lose consciencness for about 15 min. up to 2 hours. I don't have shakes often just go catatonic for a while, and the auroa's can last for hours after the episode.

MarilynB
By MarilynB on Mon, 08/08/2011 - 10:22pm
Re: True Epilepsy vs. NES

I agree. I found this info useful. Epilepsy

kkmorr
By kkmorr on Wed, 10/28/2009 - 12:34pm
Epilepsy and Seizure Site
E.Com gives information on both epilepsy and seizures. The forum also discusses both. You're in the right place! -Spiz
spiz
By spiz on Sat, 09/17/2005 - 8:31pm
Thanks Teft
Yes, if what's been happening to me isn't epileptic then they are still definitely seizure - I'm just stuck in a position where I don't really see my emotional trigger, but am aware of physical ones. I'm really glad you are promoting awareness of this condition as most of the world appear to be clueless about it. Lynsey.
lmcg82
By lmcg82 on Sat, 09/17/2005 - 12:56am
Thanks Lynsey
Keep trying to find that emotional trigger. I't very difficult to face past things but my wife is making much progress by doing just that. Take care, Teft
teft
By teft on Sat, 10/01/2005 - 3:11pm
NES
Teft, Well said! I couldn't put it any better or agree more, Maryanne :)
yannie44
By yannie44 on Sat, 09/17/2005 - 12:41am
Thanks Maryanne
We're All In This Together Teft
teft
By teft on Sat, 10/01/2005 - 3:17pm
Re: Nonepileptic "Events" vs. "Seizures"

Hi All,

Been reading through all your posts with interest, and just want to add something.

Although e.com DOES deal with epilepsy & seizures, the original comment about it not being a dedicated non-epilepsy resource is correct.

If anyone's looking for info or a dedicated support group/forum for NEAD, we've recently launched one at http://nead-scotland.org

NEAD Scotland is a voluntary online resource for users anywhere (called NEAD Scotland cos that's where we're based).

I'm a sufferer and run the whole site from home with no financial support from anyone.

Come and pay us a visit, and leave us some comments in the guestbook or join our forum.

Cheers

Gerry

NEAD S...
By NEAD S... on Fri, 02/27/2009 - 9:18am
Re: Nonepileptic "Events" vs. "Seizures"

Keep trying to find that emotional trigger. I't very difficult to face
past things but my wife is making much progress by doing just that.
Take care

 

 

http://garbagedisposalreview.info

disha
By disha on Mon, 06/20/2011 - 8:16pm
Re: Nonepileptic "Events" vs. "Seizures"

There are some links and valuable information of our NES/ PNES FaceBook pages.  Please join in our discussions and add your own personal experiances. You are not alone.

 

http://www.facebook.com/pages/Non-Epileptic-Seizures-NES/130...

MarilynB
By MarilynB on Mon, 08/08/2011 - 10:32pm
Re: Nonepileptic "Events" vs. "Seizures"

I had a non epileptic seizure disorder for almost 4 years.  I have had all of the testing and scans there are, seen the top Epileptic doctors in the country, had 2 complete in hospital brain wave sleep studies, tried epileptic medication with no positive results.
 
Symptoms:
- Dizziness
- Feverish headaches (without actual fever)
- Sluggish, extreme fatigue
- Temporal headaches & migraines
- Trouble walking straight
- Spastic right arm and side with bobble neck
- Fainting at the end of elevator ride or looking up
- Extreme vertigo
- loss of vision, blurred change of depth vision
- Chronic soft stool, Diahrea
- Grand Mall Seizure, 1 large one every 2-4 months
- Small Seizures,spacing out, mouth quivering
- Slurred speech
- Extreme motion sickness
- Depressed Mood
 
During a bout with the flu, I was very weak for almost an entier week and did not eat much. I knew I needed something, so I began to drink bottled vitamin water to not be dehydrated. 
I still felt sick and congested, but the regular daily "fuzzy" fever feeling I had always experienced was much less. 
Wow, I felt better and realized that I may have a vitamin deficiency. 
 
I researched all combinations of vitamins. I am not a doctor, however the body has various neuro pathways that need a variety of vitmains and nutrients end electolytes to function properly. You must be your own advocate.  Doctors treat symptoms, and symptoms based on what YOU tell them.  YOU must speak up and ask questions, YOU must advise ALL your ongoing and current new symptoms whether you think they are related or not. 
 
Before you take any supplements, Have your doctor check your Vitamin levels.  Check: Vitamin D, Vitamin B6, Vitamin B12.
You may consult a naturopath or a nutritionist for any nutrient or vitamin deficiency questions. If you have chronic diahrea, you may think nothing of it, as I did, and you may have an absorption issue as well as I did.  Do your research. Speak to reliable sources.  Do not take any supplements or try any medication without consulting with your regular physician.
 
With proper nutrition, sleep, exercise, vitamins B6 + D (see your physician) , and regular counseling, I have been seizure free for almost a year. 
I do take a mild anti anxiety medication for anxiety.
 
You can get your life back.
I actually have energy now to get more exercise and I am sleeping better than ever.
Best of luck to all.

seizur...
By seizur... on Wed, 05/11/2011 - 8:53am
Re: Nonepileptic "Events" vs. "Seizures"

Wow that is great.  I will see my Dr. and ask about the vitamin test. I have some of the symptoms you had described, so I am definatly going to look into it. I am so happy to hear a positive side to this illness. Stay well.

MarilynB
By MarilynB on Mon, 08/08/2011 - 10:29pm