Psuedo seizures/non epileptic attack disorder

[Elaine H]

Hi guys

Just wanted your feedback on the above, to help a friend out really. Have any of you ever experienced psuedo seizures, or Non Epileptic Attack Disorder, these are attacks that are feigned either consciously or sub-consciously, and are thought to be a used as a means of manipulating people, such as the person's family or doctors. They almost always occur when there is someone present to witness it, and tend to be extremely dramatic with arms and legs flailing about in a very wild manner. They can be very difficult to deal with especially when they are happening to people who also have epileptic seizures, and the medical profession have great difficulty in distinguishing between the two, and intensive investigation is neccesary.

If any of you have any experience of either having them, or knowing anyone who has, I'd appreciate some feedback from you, as it may help a friend of mine who has very bad epilepsy, but for some unknown reason, has recently started having psuedo seizures too, and is very frightened by them, doctors and nurses seem to think that they are all in the mind, and all a big act!! Hope all is well with you, and I'm halfway through typing the book up, it is finished though!!!

Love to you all

Many thanks

Lainey
xxxx

[Nakamova]

Hi Lainey --

A number of people here at CWE have talked about having been diagnosed with psychogenic non-epileptic seizures (Psychogenic Non-Epileptic Seizures). I don't know if they are identical to the NEAD diagnosis. In general, someone with psychogenic non-epileptic seizures isn't thought to be feigning the seizures for attention, rather the seizure is considered to be an emotional (rather than electrical) event, perhaps a manifestation of Post-Traumatic Stress Disorder. Treatment for psychogenic non-epileptic seizures tends to be counseling and therapy to try and deal with the stress.

You search for comments about psychogenic non-epileptic seizures using tab at the top -- maybe that will be helpful to you and your friend.

Congrats on the book progress, keep it up!

[Endless]

Hey, Lainey,

It takes a VERY GOOD epileptologist to tell the difference between epileptic seizures and psychogenic non-epileptic seizures. If they are the generalized type they should show up on an eeg. But if they are partials they may not, and some pretty deep investigation has to happen to tell the difference. There are some ways other than an eeg. (seizure pattern, observation, response to medication, PET scan, etc.)

Your friend may have had a video eeg that made the doc think that they are psychogenic, and they may be. Sometimes the type of movement says it is psychogenic. But they may also be non-psychogenic so they just don't show up on the eeg - caused by some physcial reason, like a heart problem or hypoglycemia. Robin can tell you a lot about hypoglycemia It was the cause of her daughter's seizures. It takes a really GOOD doctor to find the physical causes of seizures, too. What it has in common with psychogenic seizures is that it doesn't usually respond to anti-seizure medication and sometimes won't show up on an eeg. And to complicate matters, some people have a mix of psychogenic, non-psychogenic, and epileptic seizures.

If your friend has been diagnosed with psychogenic seizures of any kind, if it were me, I'd get her or him in to see the best doctor possible and get a second opinion. Know her medical and life history down to the tiniest breath, do your research on possible causes, then ask the doctor so many questions you drive him nuts. (did she fall on her head as a kid or was she in an auto accident? If so ask for a PET scan. Does she get sweaty or tired or grumpy when she doesn't eat? If so ask for a 5-hour glucose tolerance test. Has she had a heart workup lately? If not ask for one. Has she had food allergy testing and testing for celiac's disease? She can do an elimination diet and test these for herself.) Drive for testing for every plausible cause. Then if psychogenic seizures are confirmed, get her in to the best psychologist possible for talk therapy. That is, if it were me that's what I'd do.

[Elaine H]

I'll pass your comments on, the poor person is so terrified, their family doctor has actually told them that they don't think that they have epilepsy anymore, only psuedo seizures, can you believe that?! I suggested that they get in touch with their specialist as soon as possible and get it sorted out, they have no idea why these psuedo seizures started, why they are happening, they have caused a lot of injury, lasted a long time, caused the person to be taken to hospital, and generally caused a lot of pain, injury, and all round inconvenienence, as if two lots of brain surgery and epilepsy wasn't enough for them to put up with!!! I've been reading a lot on these seizures, and all I can find out is that they are feigned, and occur either consciously or sub consciously, and can also be as a result of Post Traumatic Stress Disorder, or a major trauma, or general life stress, but they have said there is nothing bothering them at the moment, wow, I am just so intrigued by the human brain. Thanks for taking the time to reply to me.

Very Best Wishes

Lainey
xx

[Endless]

Hey again, Lainey,

It may be that the surgery took care of the epileptic portion of her seizures, and all that's left are some psychogenic ones. I've read that most people have a mix of both. But when I hear that she's been hurt, I kinda doubt that. I also doubt she's had strictly psychogenic if she had brain surgery. They insist on pretty solid evidence, including positive eeg's and also pinpointing the origin of the seizures, before they operate. Is this a new doc? One she didn't have before? One that doesn't understand her history?