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NON-EPILEPTIC SEIZURES
Tue, 05/10/2005 - 18:39Hi Everyone,
I know this is a touchy subject but I need more info on it if anyone has experience of this. The docs have told me they think my 'episodes' are non-epileptic because I had one on EEg and it showed no abnormality in my brain waves. I was just wondering if anyone has experience of these being triggered off by things like, too much scrolling on the computer, low blood sugar, lack of sleep etc. Because I am finding it hard to accept the doc's recommendation when literally EVERYTHING other than the EEG points towards it being epileptic! Has anyone heard of non-epileptic events occuring as a result of looking at the old-type flashing computer screens? This is madness! Does anyone have any info on seizure's that happen when hooked up to the EEG but don't show up abnormalities? I am at my wits end here, why is no one listening to me? :o(
Jess
Comments
Re: RE: NON-EPILEPTIC SEIZURES
Submitted by Maggie on Mon, 2008-04-07 - 23:23
Hi Jess...Wow all this sounds to familar.Hope this isn't to long,but I feel as though it may help you feel better.In September of '04 I was in a minor car accident.The police said that I was having a seizure and told my son to get me to the ground.Did not bump my head as far as I know,but was taken by ambulance to hospital.Tests normal but did have a concussion.Told by ER doctor to see neuro.When I went to the neuro he did an EEG.on the next appt.he said I had slow brain waves,then put me on Tegretol.The next appt.he said oh I must have you confused with someone else.Now this can be scary! So he took me kept me on Tegretol for awhile then decided to take me off and to see and EPI (epileptologist).I did that and she put me in hospital for an VEEG.All came back normal.Ok,thought i had better get another opinion.This neuro said,I have no idea what is wrong with you.Hmmmm??? Go see another I thought.I did and he said yes you do have a small meningioma tumor maybe that is the cause for the seizures.Go see a neuro surgeon.I did that also.He said not causing the seizures...it is on the left side.Another neuro said that I do do anything I want to do including driving...nothing wrong with you.I called to get that in writting..haha..no way would he put it in writting.So I am now back with the first neuro.He says yes these are true seizures called NES.Go see a Psychologist and Psychiatrist.I am thinking now I am crazy.All doors have been shut on me.Psychologist says not a psychological problem.Psychiatrist says not a psychiatric problem.The psychiatrist said he will put me on meds and see what happens.The neuro says meds won't help since not epilepsy.Guess what...meds are helping somewhat,if not epilepsy the meds wouldn't help at all.I have been pushed and shoved so many times and still feel confused.This is 4yrs. now and still no real answers.Psychologist says they are idiopathic seizers,(cause unknown).I stiffen with tremors,eyes closed.Sometimes go into a flopping all around semi concious.Have fallen down steps.The aura is a strange feeling in my head and right eye dropping,smells,flashing lights.I hope this has helped you some.So you are not alone at all...I truely understand you situation.Good luck and I pray that you get the answers that help you through this,cause it can make ya feel like you are loosing it.Prayers are with you.God bless you always
*Peace I leave with you; my peace I give to you.I do not give to you as the world gives.Do not let your hearts be troubled,and do not let them be afraid.* ~John 14:27
Hi Jess...Wow all this sounds to familar.Hope this isn't to long,but I feel as though it may help you feel better.In September of '04 I was in a minor car accident.The police said that I was having a seizure and told my son to get me to the ground.Did not bump my head as far as I know,but was taken by ambulance to hospital.Tests normal but did have a concussion.Told by ER doctor to see neuro.When I went to the neuro he did an EEG.on the next appt.he said I had slow brain waves,then put me on Tegretol.The next appt.he said oh I must have you confused with someone else.Now this can be scary! So he took me kept me on Tegretol for awhile then decided to take me off and to see and EPI (epileptologist).I did that and she put me in hospital for an VEEG.All came back normal.Ok,thought i had better get another opinion.This neuro said,I have no idea what is wrong with you.Hmmmm??? Go see another I thought.I did and he said yes you do have a small meningioma tumor maybe that is the cause for the seizures.Go see a neuro surgeon.I did that also.He said not causing the seizures...it is on the left side.Another neuro said that I do do anything I want to do including driving...nothing wrong with you.I called to get that in writting..haha..no way would he put it in writting.So I am now back with the first neuro.He says yes these are true seizures called NES.Go see a Psychologist and Psychiatrist.I am thinking now I am crazy.All doors have been shut on me.Psychologist says not a psychological problem.Psychiatrist says not a psychiatric problem.The psychiatrist said he will put me on meds and see what happens.The neuro says meds won't help since not epilepsy.Guess what...meds are helping somewhat,if not epilepsy the meds wouldn't help at all.I have been pushed and shoved so many times and still feel confused.This is 4yrs. now and still no real answers.Psychologist says they are idiopathic seizers,(cause unknown).I stiffen with tremors,eyes closed.Sometimes go into a flopping all around semi concious.Have fallen down steps.The aura is a strange feeling in my head and right eye dropping,smells,flashing lights.I hope this has helped you some.So you are not alone at all...I truely understand you situation.Good luck and I pray that you get the answers that help you through this,cause it can make ya feel like you are loosing it.Prayers are with you.God bless you always
*Peace I leave with you; my peace I give to you.I do not give to you as the world gives.Do not let your hearts be troubled,and do not let them be afraid.* ~John 14:27
Re: RE: NON-EPILEPTIC SEIZURES
Submitted by stnash on Fri, 2009-04-24 - 09:15
hi
ive suffered with epilepsy since i was 15 and im 23 now, mine are related to food, i cant leave myself get too hungry, cos if i do i get a sugar boost and i get all dizzy and start halucinating and seeing things coming towards me and things are disappearing, its very scary cos i think im going to have a seizure, also when im trying to go to sleep if the room is too hot i will get dizzy and it causes me to have a panic attack, i am on lamictal once a day to control them. its like im gettin the start of the seizure but going into one.... does anyone have these side effects????
when eating?trying to sleep?when tired?is this normal????
does anyone relate to this???
please help :(
hi
ive suffered with epilepsy since i was 15 and im 23 now, mine are related to food, i cant leave myself get too hungry, cos if i do i get a sugar boost and i get all dizzy and start halucinating and seeing things coming towards me and things are disappearing, its very scary cos i think im going to have a seizure, also when im trying to go to sleep if the room is too hot i will get dizzy and it causes me to have a panic attack, i am on lamictal once a day to control them. its like im gettin the start of the seizure but going into one.... does anyone have these side effects????
when eating?trying to sleep?when tired?is this normal????
does anyone relate to this???
please help :(
RE: NON-EPILEPTIC SEIZURES
Submitted by hewie on Tue, 2005-05-10 - 06:53
Hi Jessica,
What kind of things (seizures) are you experiencing? Has the docs themselves witnessed any? And friends or family?
One OK lone EEG certainly does not rule out epileptic seizure activity as seizures don't just decide to "act up" just when the EEG is being done... Seizure activity goes back to normal after awhile and that while can be very short or much longer - but it just depends on the seizure activity... how strong, long, etc. it was.
Are the docs planning to do another EEG or a Video EEG (where you go into the hospital and get a continous video monitored EEG for about 3 days or more)? I think you need to be a bit more reassured re: this and I don't blame you. My seizure activity did not show up on any of my first 3 EEG's. I hope you are indeed having Non-epileptic seizure activity. It would be much better for you! ... but understand your need to know. PS - LOTS of things can cause non-epileptic seizure activity and in fact, the stats are that many people will have at least one seizure in their lifetime - and only REPEATED seizures are considered to be Epilepsy. Tiredness often (not always) precipitates mine... sometimes it seems they come out of nowhere...!
Hope this helps at least some... =)
Linda
Hi Jessica,
What kind of things (seizures) are you experiencing? Has the docs themselves witnessed any? And friends or family?
One OK lone EEG certainly does not rule out epileptic seizure activity as seizures don't just decide to "act up" just when the EEG is being done... Seizure activity goes back to normal after awhile and that while can be very short or much longer - but it just depends on the seizure activity... how strong, long, etc. it was.
Are the docs planning to do another EEG or a Video EEG (where you go into the hospital and get a continous video monitored EEG for about 3 days or more)? I think you need to be a bit more reassured re: this and I don't blame you. My seizure activity did not show up on any of my first 3 EEG's. I hope you are indeed having Non-epileptic seizure activity. It would be much better for you! ... but understand your need to know. PS - LOTS of things can cause non-epileptic seizure activity and in fact, the stats are that many people will have at least one seizure in their lifetime - and only REPEATED seizures are considered to be Epilepsy. Tiredness often (not always) precipitates mine... sometimes it seems they come out of nowhere...!
Hope this helps at least some... =)
Linda