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Non-epileptic seizures? Has anyone experienced this?

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Posted 7/19/2005 3:59 AM (GMT 0)

Hi.  I'm new to this.  My daughter is 17 and began having seizures 1 year ago.  She has had 2 EEG's as well as a 3 day VEEG.  Also had an MRI and full cardiology workup.  All tests have been negative.  We have now been told she has "non-epileptic" seizures caused by psychological triggers or stressors.  Trouble is....she is having 2 different types of seizures.

Type A seem to follow the stress pattern.  Her hand/arm starts twitching, then her eyes roll up and she becomes unconcious.  However, she reports that she can hear what is going on but is unable to respond.  These usually last a few minutes then she is quick to recover and go on with whatever she was doing.  Frequently, we can relate these to a stressful event.

Type B.  Complains of a general sense of not feeling well - maybe all day.  Sometimes complains of double vision prior to arm twitching, eyes rolling up, and becoming unconscious.  During these seizures, she is completely unaware of anything.  Usually does not remember the few minutes prior to seizure, the seizure, and is slow to recognize her surroundings.  Feels tired and worn out afterward and just wants to sleep.  Complains of being dizzy.  Sometimes that feeling lasts 1-3 days afterward.  These "seizures" tend to come in clusters lasting up to 40 minutes in length.

I have trouble believe all these seizures are not epileptic in nature.  Has anyone else experienced this?

Posted 7/22/2005 6:01 AM (GMT 0)
I also have a teen that just started having seizures this spring. They say hers are stress related. Apparently epileptic or non-epileptic still need to be controlled with meds. Good Luck!! Where are you located? We are in PA. Keep you chin up, I know there can be moments of despair. Helps me to know you guys are out there, also feeling everything I am. Let me know if I can help. Pam  :-)   sad mad confused
Posted 7/22/2005 4:54 PM (GMT 0)

Hello!

 

I have been epileptic since I was 7 and several years ago during a particularly stressfull time in my life I began to have what sounds like Type A of what your daughter seems to be experiencing.

 

After several bouts of test, one of which was hospitalization w/a 24hr. EEG, I was told that I was suffering from pseudo-seizures which is basically a fancy term for "false seizures". My doc told me that while they are "false" seizures they are still, in fact, seizures to a point and that there is a very real cause for them.

 

Have you/your daughter been referred to a psycologist/psychiatrist? Is she taking any meds at all? This came out of the blue with no apparent cause?

 

Please get back to me and let me know how things are going. It can be frightening when these things occur and there seems to be nothing you can do to help. The feeling of impotence can be immense.

 

Take care!

 

 

Posted 7/22/2005 9:29 PM (GMT 0)
confused  
Posted 7/22/2005 9:50 PM (GMT 0)
I have a friend who was diagnosed with epilepsy. He now leads a fantastic life. No drugs, looks terrific and has the confidence that he will control his problem as long as he continues in the lifestyle he is in. This lifestyle works for everyone who wants to try it. Commitment, dedication and persistance is a must. If you would like to have this same confidence just let me know.

Panda
Posted 7/23/2005 3:05 AM (GMT 0)
Thanks for all the replies.  My daughter recently started taking Lexipro for anxiety/depression.  I do think it is helping somewhat.  She has been seeing a counselor since the first of the year and has had counseling off and on over the years.  Had a couple of seizures this week but this was the first time she stayed conscious during them.  I consider it progress!

Lots of issues stemming from emotional abuse from her father.  She was able to visit with him this week along with relatives that she feels very secure with.  The relatives helped moderate conversation and her father actually admitted to having made a lot of mistakes.  He seemed to be committed to learning more about his daughter and trying to heal old wounds.

I'll let you know how it goes.  Although I have no doubt that some of her seizures are stress related, I still don't know what to think about the others.  Time will tell I guess.

I just feel so frustrated.  As a parent, I just want to help her heal.  I realize there is only so much I can do.

Posted 7/23/2005 3:49 AM (GMT 0)
From what I have read most anti depressents like Lexipro counteract drugs/people with seizure disorders. It lowers the threshold. Just a thought. The stress and abuse can have alot to do with it as well. I hope she feels better. Take care, Tracy
Posted 8/11/2005 1:58 PM (GMT 0)
concerned mama,
you may also want to have her blood sugar tested. Low blood sugar can be accountable for bringing on extreme anxiety. Does she sweat a lot? Shake? My seizures are always in association with times I've skipped meals or had too much sugar/ not enough protein. Also, I've learned that seizures can be caused directly by low blood sugar. A high protein, low sugar diet can help. Several small meals a day instead of 3 big ones. Snacks before bed. In my experience, if I've already got something I'm stressed out about, having my blood sugar low magnifies that stress 10-fold! Add that to PMS, and those are the times I have my episodes.
Just a thought,
Cherarole
Posted 9/14/2005 6:22 AM (GMT 0)
Hi I am new to this bored and have found it very interesting. I have had various test carried out and have now diagnosed me with NES seizures. I have had so much miss guided advise thinking that i was going mad, as i was first told that these episodes were acted out to gain sympathy, which is so untrue. I know the things that can triggure my seizures like drinking alchohol, periods/hormones, if my body gets over heated, storms and also low blood sugar levels. However sometimes i will have seizures without any warning infact i now have a sos necklace as i have been rushed to hospital so many times. At one point not that long ago i was having 5 seizures a day which can be very tiring. I am sure i will be able to prove people wrong in time as more research is being carried out, thhe best advice i was given was from a epilepsy helpline who views sometime ago were these seizures didnt exist now they have new evidence to prove that they are very real so never believe that they are not whoever tries to tell you otherwise.
Posted 9/20/2005 9:12 AM (GMT 0)
Thank you for replying to my message, as I explained before I suffer with NES seizures I do also suffer from mental health problems which hasbeen an ongoing thing. I regularly see a psychologist on a weeekly basis which is supposed to help, it has not lowered the amount of seizures that i have had but it has taught me to accept them a bit more and coping methods to live with them happenening. In the past I have gone to the extremes of overdosing as i had felt so alone. I also felt that as I was having a large amount of seizures it had changed my life completely, I had owned my own business and shutting down was one of the most hardest things I have ever had to do, as i could no longer work. I have been signed off work for over a year now, it has been tough but recently i have moved in with my partner who completely understands my seizures and excepts them infact when he explains to me that he is not bothered by them it really comforts me. I wish to thank him for that he has made a huge difference to my life.
Posted 11/6/2005 12:51 AM (GMT 0)
HI.  I just joined but the topic of non-epileptic seizures caught my eye and I decided to reply even though your post was a while ago.  People say medicine won't help non epileptic seizures (NES) but I find Depakote does.  I also have epileptic seizures and an abnormal EEG.  In my seizures my arm (occasionally both arms or arms and legs) will move like they have a grand mall.  I can talk during them if I really try.  I hear and understand.  I get this weird ache before hand, yet sometimes get that ache with no seizure.  Different than you described.

Anyway, you're not alone with NES.

Uhura

Posted 11/7/2005 7:35 PM (GMT 0)
Sounds very familiar. My 15 year old has never has an EEG show any seizure activity. However, an MRI shows scarring on her Left Temporal Lobe. So as one person said it is important to control the seizures no matter what thier cause.

My 15 year old is just today showing signs of depression. Pray for her. She used words like alone, overwhelmed and tired of being scared. I don't know what to say. I just tell her, she's not alone, and everyone walks around scared with the what ifs . Any advice on how to keep her spirits up? Sorry didn't mean to take over. Just tell you, YOU'RE NOT ALONE>

 

Posted 11/7/2005 8:55 PM (GMT 0)
Hi to everyone, im newwwwwwww lol, but am so glad to found you all. My 15 yr old daughter had her first seizure in feb and after her 3rd was sent for an eeg which confirmed primary generalizes epilepsy, during the summer her seizures increased and meds werent helping, a second eeg was normal and now they are saying she in in fact suffering from non epiletic seizures and not epileptic ones at all, ive been pulling my hair out trying to find answers and so far have come up with the fact that 1 in 4 epileptics suffer non epileptic seizures also, i would love to find out if anyone else is having the same problem in getting the dr's to listen?

regards to you all Hayley xx

Posted 11/14/2005 6:17 PM (GMT 0)

I was originally diagnosed with epilepsy when I was 5.  I have numerous abnormal EEG's.  Now, They're saying that my seizures are actually Non epileptic.  But, I'm on my Dr has me on Topamax AND it's actually helping to partially control my seizures.  I asked him if my seizures were truly non epileptic would the meds conrtol them and he said "no".  I'll be 32 in March.  Why the sudden change in diagnosis?  I completely understand your frustration. I have been to a psycologist who said that he feels I show enough neurological symptoms that I DO have epilepsy and not NES.  I don't know why these Dr.s won't listen to us.

Shaun 

Posted 11/16/2005 5:44 PM (GMT 0)

Hi Everyone-

After reading all the posts, I just have to say...I'm glad I'm not alone.  I have had epilepsy for nearly 25 years and just had brain surgery 5 months ago.  Back when I was 22, I didn't even realize it was complex partial seizures I was having for the first 4 years before I was diagnosed.  I thought I was just overtired and feeling sick. 

For years I thought all my episodes were seizures.  It was a real eye-opener when, during my video-EEG to prepare for my brain surgery, the camera captured a  "seizure" on the video.  After it was over, I asked the technician who watched me the whole time if she saw me have the seizure, and she told me I didn't have any seizure activity on the EEG!  I learned from researching that a significant number of people with epilepsy have NES as well.  My doctor didn't make me feel like there was something wrong with me.

The bottom line- always work to find the BEST solution, work WITH a doctor that you trust, and SUPPORT the ones you love emotionally. 

Glenda :-)

Posted 10/11/2006 9:44 PM (GMT 0)
Hi my name is Tille (pronounced Tilly), I am twenty years old and a little scared. When I was young I had febrile seizures. I was a very sick baby born with heart problems. I know that febrile seizures are very very very rare in adults so i was wondering what is goin on with me. I am not epileptic, and i have only had 3 seizures in the last 3 years. I had one last night. I was sleeping with my boyfriend and he said that I woke him up because i was rigid and shaking. He said that i sounded like i was choking on my tongue and that i was hot to the touch and sweating. I looked like i was blinking very fast and i wasnt responding to him talking to me or trying to wake me up. All i remember is waking up to a very scared and worried boyfriend. I felt like there was a fire inside of me i was so hot. My muscles were tired and i couldnt catch my breath. I felt like i had just finished running a marathon. Brad said that it lasted from the time he woke up about 45 sec. He said that he rolled me over on my side and i gasped for air and woke up. He said that I wasnt really breathing the whole time and sounded like i was trying to, but my whole body was shaking and my limbs were stiff. I would really like to know what you all think. I am very tired today and my legs and arms feel funny, like fatigued and a little sore. Please let me know if anyone has ever heard of this and what it might be. I am really worried and scared. confused
Posted 10/12/2006 4:01 PM (GMT 0)

Hi Tille,

Have you seen a neurologist regarding these seizures? It sounds like it could be epilepsy but epilepsy is not the only cause of seizures and so a proper medical exam would probably be best. I am 21 and have been epileptic for about 6 years and I understand how scary it can be when you are not sure what is happening.

Darren

Posted 11/20/2006 2:03 PM (GMT 0)
tongue  I am new to this forum. i was diagnosed with epilepsy back in January 05. Now after a four day stay at an epileptic clinic on 24 hour video EEG they tell me it is non epileptic seizures. My meds have been cut in half ans they will be treating this with therapy. This is all new to me. If anyone has some helpful advise I would love to hear it. I feel as if they think I'm crazy. ellie
Posted 12/26/2007 1:04 PM (GMT 0)
Shaun-how do they determine the difference between an epileptic seizure and a non-epileptic seizure?
Posted 12/26/2007 9:52 PM (GMT 0)

Hi,

My name is Terri, My son is currently in the hospital with back to back seizures. He is 29 years old and was diagnosed with epilepsy about 8 years ago.  Currently the doctors are saying he has sudo seizures (fake seizures).  His whole body shakes but he can hear us and he reacts to amonia and pain stimulant. The doctors are saying that he is causing these seizures psychologically.  The doctor ordered a psyc consult yesterday and now on top of all the other seizure medcations he will be taking an anti depressent.  I know my son is depressed, any body would be if they lost thier job, their (so called) friends, and the freedom to drive and just go any where on his own.  He has lost his purpose and I feel it is up to me to help him find it again.  I'm his mother and I'm always supposed to make things better and now I feel I can't.

Terri

Posted 12/27/2007 2:31 AM (GMT 0)

Terri,

The anti-depressant will probably be a positive thing for your son.  When I was diagnosed at 55, I was still working and had to quit.  It certainly changed my lifestyle.  It has taken me 15 months to get my driving privileges back and I worry every day about having a seizure.

I can't imagine the affect it would have on a young man your son's age to have his job taken away.  I think when you get him to come on the forum, he will find others in the same situation and hopefully he can get some inspiration from them.  Darren, our moderator, is a young man also.

Take care!

Carla

Posted 2/16/2008 2:05 AM (GMT 0)
Hi I call myself housebound at 55 I was diagonosed with NES it seemed to happen 4 days after I had surgery to remove hardware from a disc I had removed a year early.  I also lost my job my license so called friends and family.  I have an aura & sometimes can tell when it comes on I also fall asleep am not aware of surrondings and do not remember what happens before or after I have about 5 a day from 30 mins to 1 hour they say no treatment no cure so here I sit with no meds and not even a dr anymore no job no car in more then out I have been to Rhode Island were I live New Hampshire,  Lahey Clinic in Mass. anymore suggestions on where to get some help fractured my collar bone 3 times and a concussion  knocked right out of the picture.  Any help would be helpful  thanks and I wish you all well and hope we can find a cure and try to live amore normal life Thanks for listerning it helps Sherry

Posted 2/16/2008 4:05 AM (GMT 0)

Homebound,

Hopefully, an NES member will come along with an answer for you.  Try to have a good weekend.  I'll be around if you need me.

Big Hugs!

Carla

Posted 2/21/2008 2:44 PM (GMT 0)
i just started having seizures around the first of december. never had them before in my life. had 3 CT scans, MRI, and and EEG. all of them came back clear. well now Im being told that im having non-epileptic pseudo seizures and I need to see a psychatrist because it could be from a repressed memory. has anyone else been told this?

Posted 2/21/2008 3:10 PM (GMT 0)
hi toy

yeah your not alone, i too was told that i was having non-epilepstic seizures after being diagnosed with epilepsy.

I too started having seizures when i was 19 for no apparent reason, i think that if dr's cant find a possible cause for your seizures then its automatically put down to psychological problems, when this isnt always the case, a person with epilepsy can have normal, eeg mri ct results and still be having seizures, because the electrical activity is only disturbed during a seizures or the abnormal electrical activity is too deep within the brain for the eeg to record. 

I decided to get a second opinion after having seizures for quite a while, one which landed me in intensive care on a life support machine because i didnt regain contiousness. 

I am now finally getting somewhere after 18 months and dr's now think that i didnt experience non-epileptic seizures while in hospital due to all the stress and medication etc but the epi dr also thinks that i may actually be experienced (what she described as) true epileptic seizures.

what type of seizures do you have?

how long do they last?

have you ever been incontinent?

do you bite your tongue? 

do you get any warning before a seizure?

what happens during a seizure?

how do you feel after you have had a seizure?

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