Non-epileptic seizure disorder (DS)

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Has anyone else been diagnosed with this? I was diagnosed a year ago after I started to have random seizures which didn't show up on an EEG. My Neurologist explained that they are not epileptic, but they are real which REALLY confused me! I've just found an article on a website which says that they have more recently renamed NESD, Dissosiative seizures which makes it sound less put on. It's often caused by childhood/teen trauma...

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I have HFA, ADHD, OCD & Tourette syndrome. I love animals, especially my bunnies and hamster. I skate in a roller derby team (but I'll try not to bite )

How did you experience the seizures? My son has had several episodes when he's blacked out completely for a second or two and injured himself from falling as a dead weight. The EEG showed nothing. This hasn't happened in years.

The seizures are much like epileptic ones, staring into space/falling and convulsing. Some of them I was unconcious and others I was semi aware of them. The only thing is that because of their psychological nature, they often last over a minute.

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I have HFA, ADHD, OCD & Tourette syndrome. I love animals, especially my bunnies and hamster. I skate in a roller derby team (but I'll try not to bite )

I have both Non-epileptic seizures (NES) and epilepsy. Fortunately both are controlled with Lamictal. They say NES isn't helped by any medicine but I've known of cases where that is not true. The most common medicine that helped was Depakote.

For the epileptic seizures I black out for a second or two. In the NES ones it would be like grand mal/tonic clonic but I would be conscious. I couldn't control my body. I have also had NES ones where one or both of my arms would shake like I was was doing an excessive imitation of playing the guitar. I was conscious during those and could talk during some of them.

I would much rather have epileptic seizures since they are better understood and people both in and out of the medical field are more helpful (a general rule it seems but I know there are exceptions).

yes I also have non epileptic seizures, they call them conversion or somatiform disorder, I spent a week hooked to electrodes and confined to a hospital bed to find this out . The neurologists told me it actually accounts for a third of suspected epilepsy cases but doctors are reluctant to suggest this diagnosis because people react badly thinking they are being told they are crazy or their symptoms are invalid. This is much preferable to true epilepsy as the drugs used to treat true epilepsy are serious and can cause permanent damage to the patient , I use a herbal nerve tonic tincture with skullcap to help when I am overstressed . throughout my life as early as 9mo i would check out or have convulsions and go to a completely other place . A year ago I attempted to live alone with my kids and the stress of attempting to work and figuring out abstract things like bills (all are in collections) was so overwhelming I began to have serious seizures and badly injured myself and would have bi lateral paralysis after episodes with confusion for days . These continued monthly and ruled my life until I was offered a hypnotherapy session with a highly qualified family friend , we got to the root of why they were happening (in utero trauma I was never told about) and she taught me how to make peace with that. The stay at the epilepsy clinic wasn't very productive because it was post hypnotherapy , now when I feel myself disassociating from my body I use the visualization she taught me but still loose control of my hands and have a facial tic when stressed.

I probably do have some sort of eppilepsy or seziure disorder but they never show up on EEG's because they make me lay still for them and mine are only triggered my movement. I had an EEG as a kid but they had to keep restarting it because I couldn't lay still. If I so much as batted an eyelash, they restarted it. I wasn't even allowed to hold my special stuffed animal which probably would have helped me feel more secure and stay still. I had no control over it. I wonder if I had a grand mal seziure if they would start the thing over again. I had another one when I was older and was allowed to watch TV, I asked the tech if she could change the channel and she said sure and didn't start the machine over. I wonder if the first one I had was just done by a tech who was new at or or just an idot.

I sometimes have these things that I can only describe as "brain spazams" and get so dizzy, I can't stand up or sit down. I get so dizzy I vomit. Sometimes, If I get super stressed, my whole body tenses up and freezes like a deer in the headlights or a Tennessee stiff leg goat. I can't control it and have to use whatever strength I have left to keep from falling. I don't know.

I have been getting seizures since puberty, the last one in august, and have had all sorts of tests EEG's and CAT scans
all with no sign of any form of epilepsy. Most of my seizures occur in when I am in a stressful situation, or bad meltdowns

Yes usually a week before my period starts, I am also prone to migraines
and heard that those may be related to hormonal imbalances.

I used to have non epileptic seizures (conversion disorder) back in 2006. In a way I wish they were "real" and show up on EEG's so they won't say "its all in your head." They looked like Grand Mal seizures and no one could tell the difference. In fact they got so bad at one point that I had 24 hour EEG monitoring at a hospital. It showed its all in my empty head. I am so desperate for something to show up so they can't accuse you of making it up since there is no evidence. I would love to prove that things I experience is real and provide the evidence. I am talking about my depression and other things I have been diagnosed with as well. I mean even my depression looks fake because I still smile even if the entire world is ending. Luckily the conversion disorder only lasted a few months.

Last year, I went for a walk to my local shopping center about a mile away. As I got there, I started to feel really weird, in a way that I can't explain. It was like I was in a dream, and my body was really heavy, or something like that. Not exactly, though. I felt my brain wasn't completely attached to my body somehow, and was so exhausted I just wanted to lie down. I was on a fairly busy street and need to walk a few more blocks before I had the option of sitting down, but it was like gravity had doubled. Finally, I found a place to sit, and could only stare at the ground. I felt like saying, "Help!" but I couldn't talk or pierce through the bubble that was encasing me. It felt like something really traumatic had happened, like some kind of event in my brain, but I didn't know what it could be. At that time, I didn't know much about seizures, and wasn't sure what to think. I had planned on walking back at a quick pace, in time to pick up my kids from school, but that wasn't an option. So I called a friend, who I hate to ask favors of. I wasn't able to talk. The words just wouldn't come, except with a huge struggle. Like, I wanted to say, "Something really strange has happened to me, and I need you to come and give me a ride to my kid's school", but it came out like, "Something....not good....brain....no words." Finding simple words was almost impossible. It lasted for about an hour or so. My friend came and got me, and made a big deal about how I was not to allow anyone to see me like that. I think it embarrassed her. She seemed to not want to acknowledge that I was having such a hard time talking. In fact, when I later apologized for how weird I must have sounded, she said I didn't sound weird. Like it's normal to say, "Car...can't....car...brain...bad" instead of "I don't feel like I'll be able to drive in this condition." Our friendship kind of petered out after that.

I had an EEG, but since they kept losing the paperwork, it wasn't until a month later. I remember getting carpal-pedal tetany (horrible experience where the muscles that work your hands and feet contract really, really, really forcefully, in ways that feel creepy and unnatural.) during the EEG when they made me hyperventilate, but apparently no seizure activity showed up. I never want another EEG, though, because that was horrible. That and the part where they painfully sandpaper off bits of your scalp to put those thingies on.

I still have no idea what that was.

I'm glad I am not the only one with this condition. It is very difficult to live with because people think it's fake. My neurologist just came out with it, 'you are suffering from pseudoseizures' which really upset me. I actually said to her 'does that mean I am faking it?' and she reassured me that no, it doesn't. I think hearing the new name 'dissosiative seizures' would have been easier to understand. I only really get them when I have severe panic attacks or remember something disturbing.

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I have HFA, ADHD, OCD & Tourette syndrome. I love animals, especially my bunnies and hamster. I skate in a roller derby team (but I'll try not to bite )

Thank goodness I did not have a seizure for a long time,
but they do happen, I don't remember a thing, something
happens, then I blank out.

i have been accused of hitting this girl but I
don't think that I did, I was told that she
smacked me first then I swung around and
backhanded her but I don't remember any
such thing. I think she just wanted to sue
someone who did not have any money which
does not compute.

That was my worst one in my life.

They usually happen when someone is mean to
me, but other things make them happen
but I am not sure what causes those.

My local neurologist was dismissive to the point of being rude after my return from the epilepsy clinic he just said "you need to see a psychologist". I even reminded him that I began having these at 9mo he just wanted to move on to the next patient. Having the right doctor makes a world of difference , in my searching I found naturopaths have a better understanding of neurology and non concrete conditions that the average MD alternative methods are best with conversion disorder . And to all people with any anxiety related disorder I highly recommend a tincture for the nervous system or just plain skullcap or passion flower I put a few drops under my tongue at the beginning of a dissociative state it goes straight to your blood stream and stops it in its tracks.