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 PNES (Psychogenic Non-Epileptic Seizures). I don't know if they are identical to the NEAD diagnosis. In general, someone with PNES 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 PNES tends to be counseling and therapy to try and deal with the stress.

You search for comments about PNES 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 epi 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]

Thanks Very Much

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?

 

[us4innc]

know what you mean

I have seizures myself. I had a head injury when I was a child, out grew them and then began having them again when i pregnect with my first child. Latter I found out that it was possable to have them again while being pregnect due to hormone change. Well never the less I had yet another EGG but this time when I was an adult. It came back seizure activity. The doctor I was seeing left her practice to take care of her mother full time due to illness. I began seeing another neurologist and he said it was psuedo seizures. how can it be one minute activity showing seizures activity and next minute it isn't epilepsy no more but psuedo seizres. I am frustrated and getting no answers. I latter found out doing researce that some seizures are hard to catch on EGG and sometimes takes years to catch on the test. I don't have no idea. The bad thing is that I have physical promblems which the seizures are making them worse as far as mobility and pain. I am sure some people think b/c sometimes it shows on an EGG and some times it don't people automaticly believe it is in your head, your making it up, go see a therapist or what not. but I am sorry no one would ever want to have a seizure and cause so much pain you want to cry like a baby and barely be able move. It is no fun having seizres you have headahes, body aches , muscle cramps , feel like you want to sleep for a year, ebarressment and that is only a few. I live with seizres all the time and it really does scare me but all you can do is take it a day at a time and hope for the best. My mom is the one who messaged me this site, she live thousands of miles from me and it breaks my heart knowing that she is so worried about me and believe me I love my mom more then life itself. she is my strength!! well better stop or I will fill a whole page up.

 

[Nakamova]

I began seeing another neurologist and he said it was pseudo seizures.

Time to find a new neurologist. I know it's a pain, but it can be worth it to find one who listens and also understands that absence of EEG evidence does not = diagnosis of pseudo -seizures (now called PNES).

Are you on any medication right now? It's important to find a way to control your seizures so they don't continue to get worse. Another reason to find a neurologist who can help you properly. In the meantime here's some good general info that might help: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[drarvindr]

you may want to get serum prolactin levels. prolactin gets elevated after a "real" seizure and doesnt following pseudoseizures. it's a decent objective test. Having seen a couple of patients with pseudo seizures , it wont work to tell them its feigned . its a conversion disorder. you dont voluntarily feign a seizure. its subconscious.
Other tell tale signs of a pseudo seizure are a lack of tongue bite/ bladder/bowel incontinence/ post ictal confusion , though these are not written in stone ( you CAN have a "real" seizure without any of the above , though post ictal confusion is very rare following a pseudoseizure (few people know even subconsciously what to fake))
Hope this helps your friend
all d best
arvind

 

[LJ-Bain]

Joining in a little late on this, but I certainly have some experience with this issue.
It is frustrating, isolating, painful and emotionally draining and the stigma exists everywhere when it comes to mental health.
I have now 4 neurologists in my area that won't go near me.
I cannot go to three e.r. rooms because I have been blacklisted by the neurologists there and told just to stay home with ativan to lean on because they don't want to "harm" me un-intentionally.
Family and friends feel helpless because they want to help but they don't know how.
It is a grey area. The worlds of epilepsy and pseudoseizures absolutely overlap.
However, many doctors do not recognize this and you feel marked by a scarlet letter. They like to compartamentalize people and they have their own specialties. This is understandable. If they don't appear like regular epileptic seizures then they toss you over to psychiatrists. If psychiatrists don't believe you have psychogenic seizures then they toss you back to neurologists and it becomes a tennis match.

Who is right?

We know who suffers.

Everyday I cross my fingers and hope for the best and find the joy in the simple pleasures of life. And document every blessed thing that happens and try to be my own personal best health advocate and wait.

This has been my experience. I still love my life and my family and who I am. I try not to let bitterness creep in and imagine a better future.
I've had to develop a tough skin that I didn't ever dream I'd have.

You just gotta dig in and hang on and believe in yourself. Keep an open mind and don't give up.

 

[thornton8000]

I was diagonised with PNES and after talk with my pharm and a family friend whom is a nurse who did a extensive intern in a neuro clinic and my wife told her my whole story which is one here just look up my profile, she said agreeing to have my neuro add keppra to my meds was the best thing ever it stopped my seizures almost right away within 3 hours! she beilieves I have deep in brain epilpsy soory cant spell today lol, and thats why all my eegs didnt show anything, and I need to talk to my neusro on tuesday nad if he will not reverse my diagnosis I need to get a new neuro right away they are real but as she put it and this is out of her mouth not mine "doctors dont know a D@#% thing" they usually just go by what they see not alawys go by what we tell them we know what goes on day to day. Good luck to you and your friend!
mike