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pseudo seizures / non-epiletic seizures

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

Karen,  You didn't mention your age which might be very important.  Things change as we get older and as someone who has real seizures, but not a medical person, can tell you they do impact you in ways overt and subtle.You may have had panic attack or anxiety tossed out at you.  I'm glad you aren't stopping there.  They cleared my brother of having a heart attack with all the tests, but he had responded to initial treatment for heart attack.  Blood sugar.  He had no blood sugar and it caused a full body migrane constricting his blood vessels so that his heart had to pump that much harder to move the blood.  He is severe hypoglcemic...opposite of diabectic.  I have been boarderline all my life.  While they check for diabetes, you must make them check for low blood sugar. An older woman at work in her 60's recently discovered she has a genetic heart problem which was causing her to feel faint and dizzy.  Had it all her life, but it's just now showing up.Also, not knowing your age, a sudden drop in hormones causes all sorts of grief.Don't discount the anxiety, you may not know what it is yet.  But do persue all avenues of physical causes.  Good Luck!

RE: pseudo seizures / non-epiletic seizures

Sorry about leaving out the age - 61 yrs oldagain, any info is greatly appreciated!

RE: RE: pseudo seizures / non-epiletic seizures

Karen - I just wanted you to know that you will be in EXCELLENT hands at MCV! Thats where I had everything done from top to bottom - EVERY TEST YOU MENTIONED.  The doctors were wonderful and caring and they were always there for you no matter what happened. I couldn't have felt more secure.  When I went there I was 27 (now 32).  If you have any questions let me know. Good luck. My angels are looking out for you...   JoAnne 

RE: pseudo seizures / non-epiletic seizures

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

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

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

RE: pseudo seizures / non-epiletic seizures

I was also told i have these, but i have other seizures as well. They told me i had these after i had my last brain surgery to remove scar tissue the doctors said was caused by lack of Oxygen during grand mals. He said it was due to nerves and that i had to see a psychiatrist. Well, i did try that, but he, as well as my pastor who has a Masters in psychology and the local doctors tell me they don't think nerves are the problem. I do the best i can and am working an average now of about 35 hours per week and still manage to teach a Bible study at the church and help lead the singing. During the night last night i had a period of about 2 hours seizures.With the pseudoseizures the only difference i have really found for sure is that they can not record them on an EEG. That may be because they are deep in the brain or something. In many cases they find out later that they are real seizures. For example, one patient who was considered for surgery that i know of had wires put into the head through where the upper and lower jaws attach to be monitored. there were several wires along the lower side of the brain and they picked up seizures that had not been recorded before. He was in the hospital for two weeks at that time and has since had surgery removing brain tissue where seizures had been recorded as starting. These would not show up on a regular EEG.

RE: RE: pseudo seizures / non-epiletic seizures

Thank you for that information, I go for my video EEG a week from tomorrow. They said something about attaching to my jaw, but I didn't understand why.