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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by sleepygirl on February 18, 2007, at 22:14:38
within what they've experienced
I don't now, but I think I have before
periods stuck, unable to talk (intelligibly anyway), unable to move, staring, nasty headache post experience, super-fear during, unreal sort of feeling, deja vu, voicesand weird feeling in stomach
anyone?
Posted by notfred on February 19, 2007, at 0:05:35
In reply to anyone find seizure sort of experiences......., posted by sleepygirl on February 18, 2007, at 22:14:38
> within what they've experienced
>
> I don't now, but I think I have before
> periods stuck, unable to talk (intelligibly anyway), unable to move, staring, nasty headache post experience, super-fear during, unreal sort of feeling, deja vu, voices
>
> and weird feeling in stomach
>
> anyone?Yes, some of them & I have a seizure disorder.
I get the super-fear (I like your term, I never had a good word for it) and the opposite of deja vu, jamais vu, explicitly not remembering having seen something before. This happens after a seizure, for me, I do not remember anything prior or during my seizures.Some of your list are assoc. with an effects just prior to a seizure, called an aura and the others with post seizure effects or effects during seizures. Many seizures do not take the form of convulsions and there are many different kinds of seizures.
As you nailed many common things assoc. with seizures you should get this checked out.
Posted by sleepygirl on February 19, 2007, at 0:59:53
In reply to Re: anyone find seizure sort of experiences......., posted by notfred on February 19, 2007, at 0:05:35
> > within what they've experienced
> >
> > I don't now, but I think I have before
> > periods stuck, unable to talk (intelligibly anyway), unable to move, staring, nasty headache post experience, super-fear during, unreal sort of feeling, deja vu, voices
> >
> > and weird feeling in stomach
> >
> > anyone?
>
>
>
> Yes, some of them & I have a seizure disorder.
> I get the super-fear (I like your term, I never had a good word for it) and the opposite of deja vu, jamais vu, explicitly not remembering having seen something before. This happens after a seizure, for me, I do not remember anything prior or during my seizures.
>
> Some of your list are assoc. with an effects just prior to a seizure, called an aura and the others with post seizure effects or effects during seizures. Many seizures do not take the form of convulsions and there are many different kinds of seizures.
>
> As you nailed many common things assoc. with seizures you should get this checked out.I am thankful for your response notfred and I hope you are doing well. :-)
I am trying to make sense of this stuff I just sort of casually mentioned to my pdoc. I told him a while ago, but sort of dismissively because it didn't do me any harm and it has been a while.
It has been some time (about 8 years?) since I had an episode like the one I described.
In thinking about it though, I realized that for much of that time I have happened to be on either a benzo or an anticonvulsant (neurontin briefly, ativan, klonopin for a long time, and now lamictal- all for anxiety)my last very brief episode (just a little fear/deja vu/staring thing) happened while on neither a benzo or any other anticonvulsant..that was just a few months ago now.
Me...since I happen to be more fascinated by my biochemistry than anyone else ;-), do wonder... so hence my posting.
I was on phenobarbital my first six months for seizures secondary to oxygen deprivation, so that also adds to my curiosity.
I suppose it will now be something I will pay attention for, and bring to the prompt attention of my pdoc should it recurr. I'll pay more attention probably should I ever get off lamictal.
Anyway...it's nice to know someone else knows a little bit about what the heck I'm talking about. :-)
all the best,
sg
Posted by Phillipa on February 19, 2007, at 12:12:02
In reply to Re: anyone find seizure sort of experiences....... » notfred, posted by sleepygirl on February 19, 2007, at 0:59:53
Did you lose bladder control? That is common. Love Phillipa
Posted by sleepygirl on February 19, 2007, at 14:53:50
In reply to Re: anyone find seizure sort of experiences....... » sleepygirl, posted by Phillipa on February 19, 2007, at 12:12:02
> Did you lose bladder control? That is common. Love Phillipa
no, didn't go that far
-sg
Posted by notfred on February 19, 2007, at 17:30:40
In reply to Re: anyone find seizure sort of experiences....... » notfred, posted by sleepygirl on February 19, 2007, at 0:59:53
>
> I suppose it will now be something I will pay attention for, and bring to the prompt attention of my pdoc should it recurr. I'll pay more attention probably should I ever get off lamictal.
>
>
Yes, the fact that you have events while not on antiseizure meds but do not while on them seems to be saying something.Do get this checked out, you are at risk for having a seizure while driving or in another
risky situation. Sudden Unexpected Death in Epilepsy (SUDEP) is a serious risk, also.
Seizures tend to kindle; once you have had
one you are more likely to have more and growing to greater frequency. This is all very treatable.All AD's increase the chances of a seizure, as do most stims.
Posted by sleepygirl on February 20, 2007, at 0:42:12
In reply to Re: anyone find seizure sort of experiences......., posted by notfred on February 19, 2007, at 17:30:40
>
> >
> > I suppose it will now be something I will pay attention for, and bring to the prompt attention of my pdoc should it recurr. I'll pay more attention probably should I ever get off lamictal.
> >
> >
>
>
> Yes, the fact that you have events while not on antiseizure meds but do not while on them seems to be saying something.
>
> Do get this checked out, you are at risk for having a seizure while driving or in another
> risky situation. Sudden Unexpected Death in Epilepsy (SUDEP) is a serious risk, also.
> Seizures tend to kindle; once you have had
> one you are more likely to have more and growing to greater frequency. This is all very treatable.
>
> All AD's increase the chances of a seizure, as do most stims.Thanks for your concern, but it's been years now and when they did happen they were not everyday. I'm not sure why they happened when they did...I felt like it was "deja vu" that I let get out of hand. The worst and last episodes were in my mid 20's- a really crappy time on top of it all- I remember them occurring all around a particular time in college which was really tough...then for a while nothing...then eventually I got on meds, then just a few months ago the briefest of episodes, and it got me thinking about them again, and how I happened not to be on a benzo or an anticonvulsant
and you know generally I think sometimes about how much overlap there is with meds...you know why so many anticonvulsant meds as antianxiety/mood stabilizer meds? so I think about my weird experiences, and what my biochemistry is and if it makes any sense you know?
I'm not sure I'll ever know, but I'll always pay attention....when you mentioned driving I thought of a little episode I had once while driving, was fairly in control at that time though- I heard god talk to me though which is ironic really because I'm an atheist....it was like a thought really- spoken aloud "everything's going to be ok" I suppose because I was scared that I felt it coming on, and "oh god!" seems like the appropriate sentiment I suppose, weird feeling, then headache, there was a weird automaton feeling sometimes and sometimes a compulsion to repeat a phrase or something.
I remember I had the impression that I could stop them if I felt one coming on and say, moved abruptly or something like that, there was a definite feeling when they would comeI feel pretty ridiculous describing this :-(
thanks for responding
Understand I really didn't understand what was happening at all then (and I NEVER told anyone when it did). It has been some years though since I had these experiences - just the really slight experience a few months ago - brief fear/deja vu(not on benzo or anticonvulsant) so it's definitely not a chronic thing for me now.Their intensity hit their peak in my mid 20's I suppose....happened once in a chemistry class while everyone stared at me, a couple of times at work (try answering the phone when you can't make a sentence-clearly anyway), when I was stressed out at school
really they're just a curiosity for me now...like what the hell was that? now that I'm less concerned about how people might judge the experience (and me) and just now interested in understanding how I've functioned in certain ways, and in certain situations, and what my vulnerabilities might beI know that deja vu is such a common phenomena, but I know these episodes were beyond that, but somehow a worsening of the deja vu thing
again thanks for responding and I hope the seizure disorder isn't giving you too much trouble...why don't brains behave?
warm regards,
sleepygirl
Posted by Phillipa on February 20, 2007, at 18:09:54
In reply to Re: anyone find seizure sort of experiences....... » notfred, posted by sleepygirl on February 20, 2007, at 0:42:12
Sleepy ever have an EEG? or a brain MRI? Might be a good idea to see a neurologist and let him/her rule out any abnormal conditions then you can forget it forever. Love Phillipa
Posted by sleepygirl on February 20, 2007, at 20:27:33
In reply to Re: anyone find seizure sort of experiences....... » sleepygirl, posted by Phillipa on February 20, 2007, at 18:09:54
> Sleepy ever have an EEG? or a brain MRI? Might be a good idea to see a neurologist and let him/her rule out any abnormal conditions then you can forget it forever. Love Phillipa
I wouldn't bother with the EEG....they don't seem to pick up much (like it has to be glaringly obvious from what I hear)
the MRI I wouldn't mind...as long as I could keep the pictures and make some sort of artwork with them ;-)
but seriously I won't bother
I was just curious about who else out there in babbleland has had such experiences, if it was common or not common or what. if it ever recurrs I'll know what to do though.
thanks,
-sg
Posted by notfred on February 20, 2007, at 21:11:28
In reply to Re: anyone find seizure sort of experiences....... » Phillipa, posted by sleepygirl on February 20, 2007, at 20:27:33
"I wouldn't bother with the EEG....they don't seem to pick up much (like it has to be glaringly obvious from what I hear)"
That is not my experience, 5 seizures in ~20 yrs
and my EEG suggests seizures: temporal lobe, complex partial progressing to generalized seizures. Normal MRI. EEG also helps define what part of the brain the seizure happens (if a localized seizure) or indicates a general seizure (seizure activity across large parts of the brain) or some kind of partial seizure spreading to a general one. Choice of med depends on which kind of seizure you have, but it is not uncommon to have more than just one kind of seizure.It is true that some people with epilepsy have normal EEG's, so as with many tests it is not absolute. An EEG + MRI is the standard workup for seizures.
Posted by sleepygirl on February 20, 2007, at 21:22:16
In reply to Re: anyone find seizure sort of experiences......., posted by notfred on February 20, 2007, at 21:11:28
> "I wouldn't bother with the EEG....they don't seem to pick up much (like it has to be glaringly obvious from what I hear)"
>
>
> That is not my experience, 5 seizures in ~20 yrs
> and my EEG suggests seizures: temporal lobe, complex partial progressing to generalized seizures. Normal MRI. EEG also helps define what part of the brain the seizure happens (if a localized seizure) or indicates a general seizure (seizure activity across large parts of the brain) or some kind of partial seizure spreading to a general one. Choice of med depends on which kind of seizure you have, but it is not uncommon to have more than just one kind of seizure.
>
> It is true that some people with epilepsy have normal EEG's, so as with many tests it is not absolute. An EEG + MRI is the standard workup for seizures.
>
Don't you have to have had a recent event though, and not be on any meds?
Posted by notfred on February 20, 2007, at 21:39:58
In reply to Re: anyone find seizure sort of experiences....... » notfred, posted by sleepygirl on February 20, 2007, at 21:22:16
> Don't you have to have had a recent event though
Nope. EEG right after a seizure is always abnormal
and is useful in defining the kind of seizure. Some with seizure disorder have an abnormal EEG at baseline, between seizures, which can suggest seizure discorders and type of seizure. That is true in my case. My understanding is while some will have a normal EEG between seizures it is common that the EEG is always abnormal., and not be on any meds?
>
I was told to take all my normal meds, but I was not on an antiseizure med. I know EEG is used to
see if a med is supressing the abnormal electrical
activity, ie if the med is working, so this would
be done while you are on an antiseziure med. It seems like at some point you need a baseline EEG, not on antiseizure meds, a nd most get this in their initial workup for seizures.
Posted by sleepygirl on February 20, 2007, at 21:51:49
In reply to Re: anyone find seizure sort of experiences......., posted by notfred on February 20, 2007, at 21:39:58
> > Don't you have to have had a recent event though
>
> Nope. EEG right after a seizure is always abnormal
> and is useful in defining the kind of seizure. Some with seizure disorder have an abnormal EEG at baseline, between seizures, which can suggest seizure discorders and type of seizure. That is true in my case. My understanding is while some will have a normal EEG between seizures it is common that the EEG is always abnormal.
>
> , and not be on any meds?
> >
>
>
> I was told to take all my normal meds, but I was not on an antiseizure med. I know EEG is used to
> see if a med is supressing the abnormal electrical
> activity, ie if the med is working, so this would
> be done while you are on an antiseziure med. It seems like at some point you need a baseline EEG, not on antiseizure meds, a nd most get this in their initial workup for seizures.what made you go for a workup not fred?
Posted by notfred on February 20, 2007, at 23:02:59
In reply to Re: anyone find seizure sort of experiences....... » notfred, posted by sleepygirl on February 20, 2007, at 21:51:49
"what made you go for a workup not fred?"
I have been to the ER twice with injuries due to seizures. A lovely face plant into a hardwood floor several yrs ago split open the skin over the brow line & in Jan this yr I had a major convulsion and ended up in the ER with chest pain (pulled muscle), 30 mins missing time and wierd behavior post seizure. I pulled my back during the seizure and missed a month of work. Of course I had no memory of these seizures and till I reciently consulted with a neurologist I did not know these events were caused by seizures. Those are the notable events but there are a few other cases where I got all banged up & do not know why. Some evidence I may have seizures while asleep.
Th Jan event triggered workups for heart issues, which were excluded. My pdoc picked up on the possibility I had a seizure had sent me to a neurologist.
Posted by sleepygirl on February 21, 2007, at 22:59:38
In reply to Re: anyone find seizure sort of experiences......., posted by notfred on February 20, 2007, at 23:02:59
> "what made you go for a workup not fred?"
>
> I have been to the ER twice with injuries due to seizures. A lovely face plant into a hardwood floor several yrs ago split open the skin over the brow line & in Jan this yr I had a major convulsion and ended up in the ER with chest pain (pulled muscle), 30 mins missing time and wierd behavior post seizure. I pulled my back during the seizure and missed a month of work. Of course I had no memory of these seizures and till I reciently consulted with a neurologist I did not know these events were caused by seizures. Those are the notable events but there are a few other cases where I got all banged up & do not know why. Some evidence I may have seizures while asleep.
>
> Th Jan event triggered workups for heart issues, which were excluded. My pdoc picked up on the possibility I had a seizure had sent me to a neurologist.
>
>
>
wow, notfred that seems like quite a ride!
man! I am glad it's diagnosed at least, but sorry it's causing such havoc with you. :-(
I hope the diagnosis means it won't give you trouble (or at least less trouble) now.
I wish you good health notfred.
thanks,
sg :-)
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