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pseudo seizures / non-epiletic seizures

Mon, 03/28/2005 - 18:39

I need as much information on dealing w/ pseudo seizures as well as "regular" seizures.  The meds for "regular" seizures is not controlling them completely.  All tests (EEG, MRI, CT Scan, blood work) shows no seizure activity.  I am now being sent to MCV in Richmond, VA for an EEG/Video/Audio.  Docs are now saying that part of my problem in pseudo seizures.  I don't feel anxious / stressed... live a "normal" life - I am used to being on the go / very active got a PT job I love, grandkids, great husband, kids, etc. - must be something I am not aware of which is what I am having a very hard time with.  What is treatment for pseudo seizures?  Is there medication for this? 

Would appreciate any advice or insight anyone can give that suffers from this.  I have been having multiple seizures weekly for 2 months & end up in the ER and then home in bed for days from Rx and being so tired.  My life has come to a hault because of these seizures.  Therefore, I am becoming very depressed and want my life back.  

Karen / karenn@jamesewarren.com

 

Comments

RE: pseudo seizures / non-epiletic seizures

Submitted by theresab72 on Sun, 2005-03-27 - 11:38

I was also told I was having pseudo-seizures and later found it to be a movement disorder called paroxysmal dyskinesia (or dystonia).  Please check out the info on these at wemove.org-click on the dyskinesias (paroxysmal) tab on the left side of the page.

So you know, these episodes which resemble seizures do not show up on MRI's, EEG or extended EEG's.  To my knowledge there are only several hundred people in the US who suffer from this and many doctors don't know about them.

Good luck,

Theresa

I was also told I was having pseudo-seizures and later found it to be a movement disorder called paroxysmal dyskinesia (or dystonia).  Please check out the info on these at wemove.org-click on the dyskinesias (paroxysmal) tab on the left side of the page.

So you know, these episodes which resemble seizures do not show up on MRI's, EEG or extended EEG's.  To my knowledge there are only several hundred people in the US who suffer from this and many doctors don't know about them.

Good luck,

Theresa

RE: RE: pseudo seizures / non-epiletic seizures

Submitted by knorton105 on Sun, 2005-03-27 - 15:09

Thank you for the info - I printed alot of info off of the site (We Move) - I will talk w/ docs - or at least bring it to their attention - I feel like I should be getting paid - I'm suggesting my own treatment...

What are the symptoms or what happens when you have this "spell" - sorry, I'm not sure what they are called - also, what is the treatment?

again, thanks!

Thank you for the info - I printed alot of info off of the site (We Move) - I will talk w/ docs - or at least bring it to their attention - I feel like I should be getting paid - I'm suggesting my own treatment...

What are the symptoms or what happens when you have this "spell" - sorry, I'm not sure what they are called - also, what is the treatment?

again, thanks!

RE: RE: RE: pseudo seizures / non-epiletic seizures

Submitted by theresab72 on Mon, 2005-03-28 - 18:39

I also diagnosed myself by finding this info on the computer!  It won't be the first time!

If you looked at me, you would think I am having a seizure, but they are non-epileptic.  People kept saying pseudo-seizures to me too, but like you, I just have the normal everyday stresses and not enough to cause the pseudo-seizures and I knew that wasn't what it was, although people had no problems telling me that I needed to get unstressed and it would all go away!  BULL!

Basically for me, I will start to have a jolting movement in some part of my body, usually a hand first, and it will go to the other hand, then legs and my back will twist.  I will be conscious through the whole thing, but will be unable to communicate most of the time.  My eyes will usually be closed and rolling around and my face will grimace.  This has lasted from 2 minutes to 40 minutes and afterwards I am extremely tired and have weakness in my legs and body.  I had several bad episodes during a week, for about 6 months before I found info on the dyskinesias on the internet.  It still took almost 2 more months for the neurologist to treat me as if I were having them, due to further testing.  Before they knew what was happening to me, I was put on Depakote and then Topamax and neither helped at all.  Now I have started on Dilantin and have been on it for almost 2 months and am doing much better.  I hardly ever have the episodes, but have different things happen.  I'm not sure if they are because of the medicine, or just the episodes without the jerking movements.  I get very weak and cannot hold my head up and usually have to sleep for an hour or two to get over it.  If I am in a place where I cannot lay down, my head will stay in a fixed position, tilted back, or to the side for minutes to hours and it becomes painful.  This again, is not part of the dyskinesias.  I think it's part of the side effects from the medicine, but it also could be something else, like dystonia.

There are also other medicines that treat this, and most are epilepsy drugs.  My neurologist even called it basal ganglia epilepsy, because years ago, they saw this as a form of epilepsy, even though the tests showed no epileptic activity.  If you look up the basal ganglia, you will find that it is the part of the brain that controls movement.  When there is something wrong, like the metabolism if off, it can cause problems like these.  To my knowledge, they don't know much about these and there is no cure for them, yet. 

The best to you and please let us know how you doctor visit goes. 

~Theresa

I also diagnosed myself by finding this info on the computer!  It won't be the first time!

If you looked at me, you would think I am having a seizure, but they are non-epileptic.  People kept saying pseudo-seizures to me too, but like you, I just have the normal everyday stresses and not enough to cause the pseudo-seizures and I knew that wasn't what it was, although people had no problems telling me that I needed to get unstressed and it would all go away!  BULL!

Basically for me, I will start to have a jolting movement in some part of my body, usually a hand first, and it will go to the other hand, then legs and my back will twist.  I will be conscious through the whole thing, but will be unable to communicate most of the time.  My eyes will usually be closed and rolling around and my face will grimace.  This has lasted from 2 minutes to 40 minutes and afterwards I am extremely tired and have weakness in my legs and body.  I had several bad episodes during a week, for about 6 months before I found info on the dyskinesias on the internet.  It still took almost 2 more months for the neurologist to treat me as if I were having them, due to further testing.  Before they knew what was happening to me, I was put on Depakote and then Topamax and neither helped at all.  Now I have started on Dilantin and have been on it for almost 2 months and am doing much better.  I hardly ever have the episodes, but have different things happen.  I'm not sure if they are because of the medicine, or just the episodes without the jerking movements.  I get very weak and cannot hold my head up and usually have to sleep for an hour or two to get over it.  If I am in a place where I cannot lay down, my head will stay in a fixed position, tilted back, or to the side for minutes to hours and it becomes painful.  This again, is not part of the dyskinesias.  I think it's part of the side effects from the medicine, but it also could be something else, like dystonia.

There are also other medicines that treat this, and most are epilepsy drugs.  My neurologist even called it basal ganglia epilepsy, because years ago, they saw this as a form of epilepsy, even though the tests showed no epileptic activity.  If you look up the basal ganglia, you will find that it is the part of the brain that controls movement.  When there is something wrong, like the metabolism if off, it can cause problems like these.  To my knowledge, they don't know much about these and there is no cure for them, yet. 

The best to you and please let us know how you doctor visit goes. 

~Theresa

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