Medical Forum / Diseases and Disorders / Epilepsy / October 2004
Not Sure but could use a listen...
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Notsure - 12 Oct 2004 16:40 GMT About 4 years ago I had a generalized or "grand mal" seizure. I was unconscious when it happened, and it happened in front of my children and husband. Since that day, to my knowledge, nor anyone who lives with me, I've not had another one.
Prior to that seizure, which took place in the afteroon, I'd spent the whole day in and out of practically an "aura" type state, tingly, flushy, dream-like, and like my whole head was an explosion (hard to describe... I can never articulate it and have people understand what I mean). It's like I'd be out of this planet and onto another. But I'd still notice the presence of my children and husband.
The events which led up to that generalized seizure were not new to me, however. I had described this "feeling" to doctors in the past, and was diagnosed with schizophrenia (later discarded), dissociative disorder (later discarded as well), and panic/ptsd. (I did have a history of an abusive past).
It was not until that generalized seizure day that it even dawned on me that these episodes might be seizures. I still have these episodes from time to time. It's the tingly flushy dream like state but also a concentration of emotion. I often feel in my whole body like I am about to sob and burst into vehement tears, even though most of the time I do not. Then my arms and legs tend to involuntarily outstretch like when a person stretches to get up in the morning... only it's quicker and like 3 or 4 times in a shoirt period then it stops. My husband says I get quite emotional either happy or sad... and I just need to hold him tight for a while, and if he is not around I lean against a wall or post while it rides out. It seems to come on out of the blue, lasts for a short period of time, then its gone. But I feel exhausted for a long time after.
I am not really looking for a "diagnosis", but I am simply wondering if anyone can relate/validate/reassure me that I'm not nuts. I am scared to go for a diagnosis, because I believed all the previous diagnoses as well, but they turned out to be simply not applicable to me. I did see a neuro after the grand mal, but it seemed to be a "you're normal, and any person given the necessary circumstances can have one". While that is true, I still ahve no explanation for the clusters that take place seemingly out of nowhere. I probably should keep a journal to document this kind of thing.
Anyway, thanks for listening if you got this far.
gaross - 12 Oct 2004 17:11 GMT Hi. Some of us, (well me anyway), also have Memory problems that are part of our seizure types. If you change your Registration ID. or use multiple ones on the group, we might not all realize it's the same person as another post, and either not reply or send you duplicate information that you don't necessarily need a second time.
Pick one ID. you like or are comfortable with and use it consistently so we can help best where we might be able to. Thank, G. R. /
> About 4 years ago I had a generalized or "grand mal" seizure. I was > unconscious when it happened, and it happened in front of my children and > husband. Since that day, to my knowledge, nor anyone who lives with me, > I've not had another one. > ////////// > Anyway, thanks for listening if you got this far. Notsure - 12 Oct 2004 17:24 GMT > Hi. Some of us, (well me anyway), also have Memory problems that are > part [quoted text clipped - 6 lines] > so > we can help best where we might be able to. Thank, G. R. / This post was the hopeful, but unfruitful repair of a mistake I made. I tried cancelling the first post, because the previous one was under an id I did not want to use. I had been sure that I had edited my identity preferences for this group, but was horrified when I read the resulting post to find the previous one (I must have clicked "cancel" instead of "OK"). So, I tried cancelling and reposting with this one, but apparently some people still saw the first one anyway :(
I apologize from the bottom of my heart, for any problems this caused for anybody. :( That is absolutely the last thing I want to be doing. Nice way to get the WRONG foot in the door for a newsgroup entrance, eh?
Now that we've got this out of the way, did you read the actual content of the post?
gaross - 12 Oct 2004 19:14 GMT > > Hi. Some of us, (well me anyway), also have Memory problems that are part
> > of our seizure types. If you change your Registration ID. or use multiple > > ones on the group, we might not all realize it's the same person as > > another post, and either not reply or send you duplicate information that > > you don't necessarily need a second time. Thanks, G. R. /
> This post was the hopeful, but unfruitful repair of a mistake I made. I > tried cancelling the first post, because the previous one was under an id I > did not want to use. I had been sure that I had edited my identity > preferences for this group, but was horrified when I read the resulting > post to find the previous one So, I tried cancelling and reposting with this one, but apparently
> some people still saw the first one anyway :( > > I apologize from the bottom of my heart, for any problems this caused for > anybody. :( That is absolutely the last thing I want to be doing. Nice > way to get the WRONG foot in the door for a newsgroup entrance, eh? **G* Don't worry about the latter or posting w. the 2 Ids. The former one you didn't want to use, will unfortunately (I think) end up in the History Logs of the group (where ever that is) so any spam etc. that might follow it, unless it has hidden (I didn't look) anti spam stuff, will likely attract some junk mails - usually from asia or out and about. I'm not the only one who has ~ erratic memory, so I thought if some others were reading the notes (some people only check posts 2-3x a week, they might not realize they were responding to the same person vs. 2 separate people with similar problems or questions. (If you can't pull over the www addresses I posted to This email ID, reply to me (direct) and I'll look up where ever I have that post filed that lists Julie's Idaho First Aid chart, and their sites plus Ep. Foundation of America one? Howdy Dave (on my system) still has about 2 posts up and his website is listed at end of his posts. Many of his are more specific to stuff he's used or experienced, but I don't remember particular things about Auras and those aspects of Seizures being on his site. )
> Now that we've got this out of the way, did you read the actual content of > the post? Yes. That's why I responded with a list of websites that you might not have been aware of.
The Auras you described are common (or were for me), and are listed under Either Auras, or Simple Partial Seizures depending on which websites you visit. (I listed that because some *new people don't know that an Aura is a Simple Partial Seizure and might think the 2 are different while they read through information. That was an attempt to save you some time.) . I *assumed you weren't prescribed anything (*yet) since your Doctor obviously doesn't know what an Aura is, or that it could be related to a form of Epilepsy --> that's why I suggested seeing a specialist in Epilepsy or Seizures (usually a Neurologist). IF you were prescribed something related to seizures, the medication will show up on the efa. org Medications Glossary, and will tell you *1 how to use it and what Not to use with it *2 the types of seizures it treats so you can compare to what you've been told to date. Also many people around the group use most of the more common seizure medications (AEDs), so if you had been using one, they might also be able to tell you from symptoms if a medication is working, may be too High or too Low a dose, or if you should call a Doctor. Those sorts of things on a support group can be handy and help 'unwind' someone who's worried that their symptoms are 'bizarre or a concern' when they might just be a temporary side effect that should clear up in a day or 2 on a pill.
The Auras you described earlier (above) are common with many of the ~5 seizure types, the particular Form it takes is usually a First step for the Neuro to tell which possible Type of seizure is involved *and the Seizure Focus (the location where the seizure might be starting from **inside, Before they do any tests -- EEG, EKG or MRIs if they were to look for internal damage)
For anyone else here who might want to respond later, do you get any Tastes or Aromas that aren't there when these happen? Or do you get any feelings of being Lost or unaware of where you are (even if you're at home or somewhere familiar normally) -- OR any feelings of e.g. Deja Vu (I've been here before, said this before, done this before?) or Jamais Vu (described 2 lines above where you feel lost even if you're at your own home). ?? Those are symptoms of a number of seizures, before any Medical tests might need to be run to confirm them. In fact in many cases the Symptoms alone are enough to determine the seizure type, and therefore the medication or treatment that might work for a particular seizure type. /;' G.
Julie - 12 Oct 2004 20:00 GMT Not to worry. Welcome to the group, Notsure. Here is my reply from the post sent to Adagio. We will try to keep the thread here.
Welcome to the group. It sounds like you are having seizures. There are so many kinds of seizures and some people have many different kinds of seizures.
Help me understand. Did the neurologist prescribe medication? Are you taking meds now?
Personally I think one of the most helpful things is to educate yourself, your husband, your children, and your friends about epilepsy. Seizures can be really
frightening, especially for those who witness tonic clonic (grand mal) seizures. And for those of us who are unconscious during the event we have the anxiety of feeling we have no control, the pain of the results of the seizure and the exhaustion. I call that part feeling like I've been run over by a mac truck. It helps me to have friends and family that understand. They understand
when I say I don't feel well today, so I won't be driving. They understand when
I say I can't go in that restaurant because of the noise, or the crowd, or the flickering lights. Some days I'm OK with those things, but other days I'm not. I listen to my body and I speak up and let others know what is going on so I don't push myself and trigger a seizure.
The group here have a vast experience and come from several countries. Please feel free to ask questions and comment. We continue to learn from each other, but recognize that we are not doctors (most of us).
Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilespyidaho.org
> > Hi. Some of us, (well me anyway), also have Memory problems that are > > part [quoted text clipped - 21 lines] > Now that we've got this out of the way, did you read the actual content of > the post? Notsure - 12 Oct 2004 20:41 GMT > Not to worry. Welcome to the group, Notsure. Here is my reply from the > post > sent to [otherid]. We will try to keep the thread here. Thank you for understanding about my silly mistake. Kind of embarrassing.
> Welcome to the group. It sounds like you are having seizures. There are > so many kinds of seizures and some people have many different kinds of > seizures. The only doctor validation is by a doctor who is not my own neuro, but a pediatric specialist for a family member of mine. But I once mentioned to him how it goes for me, and he said it sounded like seizures, especially since the exact same thing preceded a generalized one that one day. He recommended a name of a neuro I could see, and when I get brave enough I'll ask for the referral.
> Help me understand. Did the neurologist prescribe medication? Are you > taking meds now? Nothing has been prescribed. There were standard followup procedures after the grand mal, a bunch of scans, an EEG (came out normal), and everything came out normal. The neurologist I saw (one appointment) didn't seem too interested in my descriptions of anything other than the grand mal, which my husband described, since I was not conscious for it. Perhaps my symptoms are not severe enough? Perhaps my history of being (incorrectly) diagnosed with a psychiatric illness? I don't know. Do people get diagnosed without having more than one gm seizure? How do people get diagnosed without an abnormal EEG result?
So far, the most logical description of what I've been going through is that it's called a seizure. It just seems to fit the best.
> Personally I think one of the most helpful things is to educate yourself, > your > husband, your children, and your friends about epilepsy. Seizures can be > really > frightening, especially for those who witness tonic clonic (grand mal) > seizures. My son was six years old when it happened and I had to reassure him for a long time afterward that I was ok.
> And for those of us who are unconscious during the event we > have the anxiety of feeling we have no control, the pain of the results of [quoted text clipped - 10 lines] > not. I listen to my body and I speak up and let others know what is going > on so I don't push myself and trigger a seizure. I've learned to do that for my own self too. Fluorescent lights make me feel that way, as well as a very sudden noise or touch, or insufficient sleep... sometimes though it happens for seemingly no reason at all.
> The group here have a vast experience and come from several countries. > Please > feel free to ask questions and comment. We continue to learn from each > other, but recognize that we are not doctors (most of us). Thank you for your feedback. I appreciate hearing from anyone who has anything to offer, whether it's to tell me I'm either "onto something" or that there is nothing to go on, and should try to see what else it is :)
Thanks NotSure...
Mary Fisher - 12 Oct 2004 21:17 GMT > ... when I get brave enough I'll > ask for the referral. Don't wait.
There's no point in putting it off, the sooner you see an experienced doctor the sooner you'll be in control.
Hugs,
Mary
gaross - 12 Oct 2004 23:18 GMT > > ... when I get brave enough I'll > > ask for the referral. [quoted text clipped - 4 lines] > Hugs, > Mary I agree with Mary too. You might be afraid of what they might find or won't find?? but it's better to know and if there are any things you should avoid (e.g. driving, alcohol, flashing lights, etc), it's better to **know those now than find them out in fits and starts if more occur. An EEG unfortunately will only flag a particular seizure type if they can trigger a seizure during the test. You sound like one of the many who have had a 'clean test' that unfortunately didn't show activity that was erratic. Mine happened to be 'all over the map' when the Drs. first went looking for anything -- some of us show up right away , others don't. But even if the Dr. finds a lesser type szr. that a **Small amount of pills might help, you'd feel better around your Children and They wouldn't be frightened about what's happening to Mom if they were happy that you were taking something that was able to control it. (He's Obviously seen one that has worried or frightened him or he wouldn't be repeatedly asking you if you're O.K. ?? At least that's how the earlier note you put up sounded to me. ) I'm concerned (as an outsider, but fellow epper), that if you Drive, I'd rather have you know that you're Fully Controlled, since some of the seizure types (absence, petit mal, etc.) can happen without warning, so be a potential hazard to yourself or your child if you were Driving when it happened OR even doing something over the Stove.
You *might be able to find out what you 'did' from your child without frightening them, by asking them what you did, while you're 'away', Unless another adult has already witnessed some of your's - in That case they could tell you more accurately what you do during onset. That's also why I listed Julie's (Idaho) First Aid sites in that other link, since a description from any witnesses (if you're not aware), can help you tell which seizure type best describes the types you are having. Your Doctor, so far, doesn't appear to be much help, but the sooner you can put a Name on the seizure type(s) you have, the easier it will be for you to treat it and to read some of our messages or the News Sites and know Which type of seizures or symptoms apply to you, and which other types Don't apply so you can leave those. That saves a lot of extra reading if you go to efa.org site or other ones that have encyclopaedia type lists of topics and comments. Skipping past things that don't apply to you saves a bunch of needless extra reading. G./
Notsure - 12 Oct 2004 23:42 GMT > I agree with Mary too. You might be afraid of what they might find or > won't find?? but it's better to know and if there are any things you > should avoid > (e.g. driving, alcohol, flashing lights, etc), it's better to **know > those > now than find them out in fits and starts if more occur. You're right. I'll see how soon I can get the referral. Hopefully this neuro will be more helpful than the last. I don't drive, or drink alcohol, but any other things to avoid that I am unaware of would be good to know too. I'm just so afraid of not being taken seriously.
> wouldn't be frightened about what's happening to Mom if they were happy > that you were > taking something that was able to control it. (He's Obviously seen one > that has worried or frightened him or he wouldn't be repeatedly asking you > if you're O.K. ?? At least that's how the earlier note you put up sounded > to me. ) Oh, I was referring to 4 years ago, when the gm happened, and he for weeks kept asking if I was ok. He was 6 then. Apologies for the mis-communication.
> I'm concerned (as an outsider, but fellow epper), that if you Drive, > I'd rather have you know that you're Fully Controlled, since some of the > seizure types (absence, petit mal, etc.) can happen without warning, so be > a potential hazard to yourself or your child if you were Driving when it > happened OR even doing something over the Stove. Thank you.
> You *might be able to find out what you 'did' from your child > without > frightening them, by asking them what you did, while you're 'away', > Unless another adult has already witnessed some of your's - in That case > they could My older kids are 14 and 10 now, and they'd point out to me if I did anything "weird" as well as instantly call my husband's office. But that doesn't mean something couldn't happen in the future. It's why I wanted to post here, because I wanted to be a little more certain of what is going on with me, so that I could, with some authority be able to intelligently say what the episodes or suspected seizure types are.
> so far, doesn't appear to be much help, but the sooner you can put a Name > on the seizure type(s) you have, the easier it will be for you to treat [quoted text clipped - 3 lines] > you > can leave those. I think I should print off some information and put a yellow highlighter on the symptoms that apply in my case. Doctors just make me incredibly nervous, and it's something I have to face if I want to find out "what it is" once and for all.
> That saves a lot of extra reading if you go to efa.org > site or other ones that have encyclopaedia type lists of topics and > comments. Skipping past things that don't apply to you saves a bunch of > needless extra reading. G./ Thank you again, for being incredibly helpful, and Mary as well. NS...
Bob - 13 Oct 2004 15:52 GMT > About 4 years ago I had a generalized or "grand mal" seizure. I was > unconscious when it happened, and it happened in front of my children and [quoted text clipped - 7 lines] > I'd be out of this planet and onto another. But I'd still notice the > presence of my children and husband. Hi! Let me join the others in welcoming you to the support group. The "state" that you describe above is shared by many of us here including myself. It really is next to impossible to describe to anybody unless they have experienced it themselves.
> The events which led up to that generalized seizure were not new to me, > however. I had described this "feeling" to doctors in the past, and was > diagnosed with schizophrenia (later discarded), dissociative disorder > (later discarded as well), and panic/ptsd. (I did have a history of an > abusive past). I've never had a grand mal seizure (yet), but I've had the "feelings" at least as far back as my teenage years and probably earlier. There are a couple of possible known causes in my case and I'd like to ask you if you have ever had a head injury of any nature? Have you ever had meningitis or a serious illness with high fever?
> It was not until that generalized seizure day that it even dawned on me that > these episodes might be seizures. I still have these episodes from time to [quoted text clipped - 8 lines] > come on out of the blue, lasts for a short period of time, then its gone. > But I feel exhausted for a long time after. They very well could be seizures. The ones you describe sound very much like what are called Simple Partial Seizures. It's a theme & variations in that no two people have exactly the same symptoms, but there is a common pool of symptoms to choose from.
A "Partial" seizure means that only one area of the brain is involved as opposed to the whole brain as in a grand mal. "Simple" seizure means that the person remains fully aware as in your case as opposed to a "Complex" seizure where the consciouness goes into an altered state and the person does not remember the period during the seizure. Here's a good article to read. <http://www.wordiq.com/definition/Epilepsy#Types_of_epileptic_seizures>
> I am not really looking for a "diagnosis", but I am simply wondering if > anyone can relate/validate/reassure me that I'm not nuts. I am scared to [quoted text clipped - 4 lines] > still ahve no explanation for the clusters that take place seemingly out of > nowhere. I probably should keep a journal to document this kind of thing. I am not a doctor and no doctor would diagnose you without seeing you personally & running tests etc, but it very much sounds as though you have been having Simple Partial Seizures for many years. From your description it sounds as though one of them became what is called "Secondarily Generalized" into your grand mal because perhaps of added factors such as lack of sleep, stress, etc.
> Anyway, thanks for listening if you got this far. Yes, no problem! :-) Hope this helps.
Bob
Notsure - 13 Oct 2004 19:48 GMT
> Hi! Let me join the others in welcoming you to the support group. The > "state" that you describe above is shared by many of us here including > myself. It really is next to impossible to describe to anybody unless they > have experienced it themselves. Thank you for your response!
> of possible known causes in my case and I'd like to ask you if you have > ever had a > head injury of any nature? Have you ever had meningitis or a serious > illness with high fever? regarding head injury. My husband and I have tried to see if I can remember. I was abused as a young child (before age 3) but cannot remember the particulars, so whether a head injury of any description occured back then is unknown.
When I was 13 or 14 and bullied at school another student rammed my head repeatedly against a metal locker so hard that I had massive headaches for days and saw green everywhere. Nothing was done about it. I didn't complain or think anything of it.
I was in a car accident at age 21, but my head was uninjured, just had whiplash to the neck.
> They very well could be seizures. The ones you describe sound very much > like what are called Simple Partial Seizures. It's a theme & variations in > that no two people have exactly the same symptoms, but there is a common > pool of symptoms to choose from. This is similar to what my family member's neuro said. Naturally, he could not diagnose me because he's in pediatrics, but he gave me the name of one who treats adults. His opinion, however was the first which made it seem to me like I'm quite possibly not nuts.
> <http://www.wordiq.com/definition/Epilepsy#Types_of_epileptic_seizures> Thanks, bookmarking this site.
> I am not a doctor and no doctor would diagnose you without seeing you > personally & running tests etc, but it very much sounds as though you have > been having Simple Partial Seizures for many years. From your description > it sounds as though one of them became what is called "Secondarily > Generalized" into your grand mal because perhaps of added factors such as > lack of sleep, stress, etc. Thank you so much, again, for this response. I do notice that lack of sleep, stress, fluorescent lights that don't work properly, suddenness of an occurrence, etc, tend to trigger. Something which makes me respond emotionally tends to trigger it too, be it happiness or sad.
The more I am reading here, the more likely it is that I'll feel more confident to go to the doctor. There's a long waitlist, but if I've waited this long, I can wait again. In the meantime, I'll keep the discussions here, too.
Thanks,
Bob - 13 Oct 2004 21:45 GMT > > I'd like to ask you if you have ever had a > > head injury of any nature? Have you ever had meningitis or a serious [quoted text clipped - 9 lines] > days and saw green everywhere. Nothing was done about it. I didn't > complain or think anything of it. Ouch!! That sure didn't sound good
> I was in a car accident at age 21, but my head was uninjured, just had > whiplash to the neck. It would be a good idea to have all that info and any other you can think of written down for the neuro. It's may be asking too much of your memory, just as I've found it to be of mine, but if you can roughly pinpoint the time in your life when these "feelings" started, it would be helpful. i.e. looking for cause & effect.
> I do notice that lack of > sleep, stress, fluorescent lights that don't work properly, suddenness of > an occurrence, etc, tend to trigger. Something which makes me respond > emotionally tends to trigger it too, be it happiness or sad. Those are all typical and just by themselves point to a diagnosis of epileptic seizures.
> The more I am reading here, the more likely it is that I'll feel more > confident to go to the doctor. There's a long waitlist, but if I've waited > this long, I can wait again. I've had 2 GP's, not Neuro's, start to treat me. When this all came back after being gone for quite a few years, the first GP had an MRI, CT-Scan, & EEG run which were all negative. He then prescribed Tegretol which I didn't take after looking up it's side effects.
We moved and the seizures were becoming worse & more frequent. The new GP started me on Neurontin, which I still take. When the seizures continued, that's when he sent me to a neuro who in turn sent me to an epileptologist after some time. I relate all this only to point out that a GP can diagnose & treat this condition and, if initial drug treatments are effective, it might not need to go any further.
> In the meantime, I'll keep the discussions > here, too. Please do! :-)
Bob
Dave ???? - 15 Oct 2004 03:43 GMT Howdy!
Nope... you're not nuts!
Sounds to me like one of the classic descriptions of some of the sensations that people have during a simple partial seizure.
 Signature Dave ????
http://www.howdydave.com
> About 4 years ago I had a generalized or "grand mal" seizure. I was > unconscious when it happened, and it happened in front of my children and [quoted text clipped - 37 lines] > > Anyway, thanks for listening if you got this far. Notsure - 15 Oct 2004 10:13 GMT Dave ©¿©¬ wrote:
> Howdy! > > Nope... you're not nuts! > > Sounds to me like one of the classic descriptions of some of the > sensations that people have during a simple partial seizure. Thank you so much for your support!
I hope I am not nuts. One of the things which worried me for these past few years is something I read on epilepsy sites about "pseudo-epilepsy". My attacks or episodes or whatever they may be, on a superficial level resemble the description of pseudo, but I can't explain away the grand-mal, or the clusters of things which happened which didn't generate "attention". The tinglying flushing, and seemingly teleporting into a dream I can't escape from, has happened when I am alone, many times.
And even these things leave me exhausted for a long time (a few hours if it is only once, but days if more than once). One article pointed out that exhaustion sometimes is the dividing line between pseudo and neurology based seizures, also having an EEG catch these things in the act (which so far has not been my experience).
The fact that these attacks (which I for a long time assumed were "panic attacks") are often brought on by either good or bad emotional stress (among physical factors like lighting) for years led me to believe that these things could be "pseudo-seizures". Because the emotional spasms of sorts just were too intense...
One of the things that has made me timid about going to the neuro (my GP doesn't seem to understand) is that with each diagnosis I had I was relieved and thankful that I'd finally "found" the answer, only to subsequently find that it wasn't it after all. Here I've been sitting, for the past 4 years, since that grand mal, with the only explanation for my attacks in ~20 years that actually makes the most sense to me, and yet afraid. But I have to face it sometime. I didn't pursue it very hard the first time because the Neuro that I saw after the grand mal seemed so unapproachable.
This time I want to write down, comprehensively a list of symptoms that I commonly experience, in as much detail as possible, things which bring it on, and maybe a little check list of how often it occurs. I can go for months and months off and then months and months on.
Ack, I apologize that this is so long. Often when posts are so long they get skimmed over (sometimes I do that), so I hope I've not made this too long.
NotSure...
Mary Fisher - 15 Oct 2004 10:21 GMT <snip well thought out post - NOT skimmed!>>
> This time I want to write down, comprehensively a list of symptoms that I > commonly experience, in as much detail as possible, things which bring it > on, and maybe a little check list of how often it occurs. Don't just WANT to - DO IT. Write down everything as soon s you can, keep a notebook and pencil with you at all times to do it. Pencil is better than pen because it doesn't run out and will not smudge in rain. Don't just record the time, date, anticipation of and symptoms of what you experience but outside influences - what you're doing at the time. I record where I am, what I'm doing, what I've been eating, what I'm listening to on the radio etc. You might see a pattern, you might not. I don't (except that my partials happen roughly once a month and no I'm too old for a link with a mentstrual cycle) - but it's fascinating to look back on :-)
> I can go for > months and months off and then months and months on. [quoted text clipped - 3 lines] > so > I hope I've not made this too long. You haven't. I only skim uninteresting posts. I enjoy well constructed and interesting posts.
Mary
> NotSure... Notsure - 15 Oct 2004 14:43 GMT Ok, I read a little bit more about pseudoseizure and feel a bit better. I'm now reassured that pseudo doesn't mean that the caregiver think's it's all a big fake.
However, there SHOULD, for all intents and purposes be a different term for ongoing seizures that are not necessarily epilepsy related. The pseudo label would give one a complex, one would think, eh?
At any rate, at this point it's to early to say if what I've experienced for the past roughly 20 yrs is even seizures, although posts here lead me to believe that that is not far off the mark, or something else... so we'll see what happens when I see a neuro and run the gamut of tests needed to examine my head.
the MRI 4 years ago came out normal so it's a relief that I have no indication of brain tumor or anything.. but it still leaves it as a mystery to me.
Ah well, I remain, NotSure
gaross - 15 Oct 2004 15:33 GMT > Ok, I read a little bit more about pseudoseizure and feel a bit better. I'm > now reassured that pseudo doesn't mean that the caregiver think's it's all [quoted text clipped - 15 lines] > Ah well, I remain, > NotSure None of the Standard websites (if you saw posts to you or someone else I did yesterday) including http://efa.org or probably even Google, recognize? the term Pseudo Seizures. The only times I've seen it used 'here' is from mis diagnoses, or people who thought (or implied) that ALL Seizures were Fake. Simple Partials or some of the Petit Mals can be hard to diagnose sometimes, that doesn't make them Pseudo (Fake) Anything.
Look at above site, or Julie or Dave's ones (listed at end of their posts here), where various seizure types are described (Julie's First Aid for seizures 1 at the Idaho Website I mentioned to someone yesterday, lists each of the Main Outward symptoms other might see in the chart). There are only about 5? main ones for Adults -- Grand Mal, Petit Mal, Complex Partial (formerly Temporal Lobe), Absence (Simple Partial) , And some other symptoms are also grouped under S.P.
I *think those are the main ones. Look through the sites if you want, then Pitch the Pseudo ones--> I've only seen those used by Pseudo Doctors or people not trained in what Epilepsy is or looks like.
My opinion. G./
Satch - 16 Oct 2004 09:09 GMT > None of the Standard websites (if you saw posts to you or someone else I > did yesterday) including http://efa.org or probably even Google, [quoted text clipped - 4 lines] > Fake. Simple Partials or some of the Petit Mals can be hard to diagnose > sometimes, that doesn't make them Pseudo (Fake) Anything. Hi,
The term being used currently is PPES (psychogenic pseudo-epileptic seizure). Within the Netherlands it is called PPEA. Pseudoseizures is a term being used in the old days.
Cheers, Marco
Notsure - 16 Oct 2004 12:06 GMT > The term being used currently is PPES (psychogenic pseudo-epileptic > seizure). Within the Netherlands it is called PPEA. Pseudoseizures is a > term being used in the old days. Ahh ok.. I wish I could remember the sites I had seen (I didn't bookmark every single one) but I did a search on seizure types on google and ran across the terms quite a few times.
Thank you all for being so helpful. It will be nice to get this all sorted out, when I see the neuro or at least talk to my gp when I get the referral.
gaross - 16 Oct 2004 16:15 GMT > > None of the Standard websites (if you saw posts to you or someone else I > > did yesterday) including http://efa.org or probably even Google, [quoted text clipped - 12 lines] > Cheers, > Marco O.K. Is there a description (even your own definition would be ok ) of what it is? Is it another condition (stroke, diabetes, allergy?) causing a Symptom that *looks like Epilepsy? What I wondered is if it was Epilepsy-based or related, why not call it Epilepsy instead of 'Pseudo-epilepsy' ( "It's a Pseudo - Ford -- try it, you'll like it" ). Even if it was an Olde term, we rarely (now) use Tonic Clonic seizures though we might recognize the term, but have now got ~5-6 main groups of seizures. What I was trying to find was if what they were describing fit in the 'boxes' of those 5-6. Since they've kept a 'New name' to describe something from 'the old days', I assume the Drs. still recognize it ?? as a Real Seizure-based condition OR is it suggested as Psychosomatic based (Imagined) ? That's what I didn't understand as they described it on the earlier post (above). Cheers. G./
Satch - 16 Oct 2004 18:18 GMT > O.K. Is there a description (even your own definition would be ok ) of > what it is? Is it another condition (stroke, diabetes, allergy?) causing [quoted text clipped - 14 lines] > post > (above). Cheers. G./ Hi Gaross,
Our local epilepsy center had a couple of links in regards to PPAE (or PPES in English).
Dutch PPAE: psychogene pseudo-epileptische aanvallen English: PPES: psychogenic pseudo-epileptic seizures
<snip> Dutch (from http://www.sein.nl) Een afkorting die staat voor psychogene pseudo-epileptische aanvallen. Dat klinkt moeilijker dan het is. Psychogeen betekent voortkomend uit psychische spanningen en pseudo-epileptisch: de aanvallen lijken op epileptische aanvallen. De aanvallen hebben geen biologische, maar een psychische oorzaak. Dat betekent dus dat de aanvallen voortkomen uit spanningen. Zoals sommige mensen last kunnen krijgen van hoofdpijn, rugpijn, hoge bloeddruk of andere lichamelijke problemen als ze onder druk komen te staan, zo kan je ook last krijgen van deze aanvallen door spanning. Waarom de een nu hoofdpijn krijgt en de ander aanvallen weten we nog niet.
English -I translated the above by myself hence my disclaimer: An abbreviation which stands for psychogenic pseudo-epileptic seizures. This sounds more difficult than it really is. Psychogenic originates from psychological stress and pseudo-epileptic means seizures which are look alikes of epileptic seizures. The seizures do not have a biological, but a psychological cause. This means that the seizures are caused by stress. Some people suffer from headache, pain in the back, high blood pressure or other health problems while being exposed to stress, some people can be suffering from these kind of non-epileptic seizures. Why one suffers from a headache while the other suffers from seizures, is something we do not know (yet). <snip>
It is just one of those conditions where the patient is between the doctors having difficulties to explain / getting the right diagnose :-(
Cheers, Marco
gaross - 16 Oct 2004 20:57 GMT Hi. Thank you for taking the Time to do that for us (me). I appreciate your translating what they were saying.
MY interpretation is they're talking about seizures that May be caused by stress, High Blood pressure or other physical conditions that could **provoke a seizure. In other words it's *Not* Pseudo in the sense I use it in English -- Pseudo is usually used to mean 'Fake' as in it doesn't really exist in fact --> "He's a Pseudo-Millionaire -- he only has 400 Dollars in his Bank account... " Therefore I took (and still do) Pseudo-seizure as Not a 'Real' Seizure, the way we talk about one around here ?? including Petit Mal that might just contain a brief Aura or dizzy feeling then clear up.
So a seizure that's produced by Stress, high heart rate or high blood pressure, the originators of definition (you translated below for us -- at **s) doesn't consider a Seizure caused by one of above as a **Real? Seizure. When *I went into several C.P. Seizures in Crowds, under stress or being tormented by 2 Police Officers-- Those were not *Real seizures, they were just 'pseudo seizures' ---> so I should *not have paid the bill I got for the Ambulance since it wasn't a Real Seizure that caused them to take me to the Hospital in 1998... :-< (2 more ***s below at G. ) //
> > O.K. Is there a description (even your own definition would be ok ) of > > what it is? Is it another condition (stroke, diabetes, allergy?) causing a [quoted text clipped - 5 lines] > > seizures. What I was trying to find was if what they were describing fit > > in the 'boxes' of those 5-6. Since they've kept a 'New name' to describe
> > something from 'the old days', I assume the Drs. still recognize it ?? as
> > a Real Seizure-based condition OR is it suggested as Psychosomatic based (Imagined) ?
> > That's what I didn't understand as they described it on the earlier post (above). Cheers. G./
> Hi Gaross, > Our local epilepsy center had a couple of links in regards to PPAE (or PPES [quoted text clipped - 18 lines] > An abbreviation which stands for psychogenic pseudo-epileptic seizures. This > sounds more difficult than it really is. *G* I commented above about this definition, or my feelings about it. A seizure that might result from Psychological stress are (for me) real Complex Partial seizures, and in fact the stress or emotions were the Triggers of what used to be called Temporal Lobe Seizures and are now grouped within Complex partial types. As I suspected, it's not a New Seizure type but a different description for one that already has a (North America at least) definition and Symptom list within Complex Partial types. ? So when I see 'psychogenic', I can just mentally replace that with C.P. seizures and understand what someone using that term means then. /
Psychogenic originates from
> psychological stress and pseudo-epileptic means seizures which are look *********************************************************
> alikes of epileptic seizures. The seizures do not have a biological, but a **********************
> psychological cause. This means that the seizures are caused by stress. Some *******************************************************
> people suffer from headache, pain in the back, high blood pressure or other > health problems while being exposed to stress, some people can be suffering **************************************
> from these kind of non-epileptic seizures. > Why one suffers from a headache while the other suffers from seizures, is > something we do not know (yet). > <snip> ***G.** Mmmmmm but they *still said why someone has a Headache but others have a seizure <--- etc. So at this part of the definition they Still separate Seizures (Epilepsy) from Headaches. So after they went to the trouble to set up a 5th? type of seizure (pseudoseizures), they seem? to leave those for headaches and the followup feelings that occur After a **Full Seizure ( Grand Mal, C.P. or other type ) they went back to calling Seizures. Which was where we were at 'over here' on the Group.... So (Below) if someone has trouble, headaches, erratic behaviours or 'drop down seizures', until the Doctor accepts that they can find an EEG or MRI to prove it's a Real Epileptic Wave, it's just a PseudoSeizure on that Paper.... Wish I had known that when I was struck by a car or got on a Bus I didn't need in 1998 -- *I thought it was a *Real Seizure-- so did my Neuro-- since I was Unaware what I was doing.... Thanks for explainiing that. /G.
> It is just one of those conditions where the patient is between the doctors > having difficulties to explain / getting the right diagnose :-( > Cheers, > Marco Satch - 17 Oct 2004 11:18 GMT Hi Gaross,
> MY interpretation is they're talking about seizures that May be caused > by [quoted text clipped - 7 lines] > 'Real' Seizure, the way we talk about one around here ?? including Petit > Mal that might just contain a brief Aura or dizzy feeling then clear up. Hi Gaross,
I agree that the term is confusing. Especially, when there is translation needed between several languages :-( So, here comes a complete article on this topic written by Raj D Sheth, MD, Director Comprehensive Epilepsy Program, Chief, Professor, Departments. http://www.emedicine.com/neuro/topic403.htm <snip> Background: Pseudoseizures are paroxysmal episodes that resemble and are often misdiagnosed as epileptic seizures. The term pseudoseizure refers to any nonepileptic episode that simulates an epileptic seizure. Paroxysmal nonepileptic episodes can be either organic or psychogenic. Syncope, migraine, and transient ischemic attacks (TIAs) are examples of organic, nonepileptic paroxysmal symptoms. This article only covers psychogenic seizure. The terminology on the topic has been variable and, at times, confusing. Various terms are used, including pseudoseizures, nonepileptic seizures, nonepileptic events, and psychogenic seizures. Psychogenic nonepileptic seizures (PNES) has become the preferred term and is the term used throughout this article. PNES are common at epilepsy centers, where they are seen in 20-30% of patients referred for refractory seizures. PNES are probably also common in the general population, with an estimated prevalence of 2-33 per 100,000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia. Pathophysiology: Unlike epileptic seizures, PNES do not result from an abnormal electrical discharge from the brain; they are a physical manifestation of a psychological disturbance. They are a type of conversion disorder and are usually involuntary. Frequency: In the US: PNES are commonly misdiagnosed as epilepsy. It is the most frequent nonepileptic condition seen in epilepsy centers, where they often represent 15-22% of referrals. Internationally: The prevalence internationally is similar to that in the United States. Sex: Like most manifestations of conversion and other somatoform disorders, PNES occur more frequently in women (approximately 70% of cases) than in men. Age: PNES (similar to conversion disorders) typically begin in young adulthood. PNES do occur in children and adolescents and have been reported in elderly people. One should be particularly cautious in diagnosing PNES (and psychogenic symptoms in general) with onset in early childhood or old age. In these age groups, nonepileptic physiologic events may be more common. For example, in children, parasomnias (eg, night-terrors), breath-holding episodes, and shuddering attacks may occur.
CLINICAL Section 3 of 9 Author Information Introduction Clinical Differentials Workup Treatment Follow-up Miscellaneous Bibliography History: The misdiagnosis of epilepsy is common. Approximately 25% of patients who have a previous diagnosis of epilepsy and are not responding to drugs are found to be misdiagnosed. Most cases of misdiagnosed epilepsy are eventually shown to be PNES or, more rarely, syncope. Occasionally, other paroxysmal conditions can be misdiagnosed as epilepsy, but PNES is by far the most common condition. Often, EEGs interpreted as providing evidence for epilepsy contribute to this misdiagnosis. As is true in other chronic conditions, reversing a misdiagnosis of epilepsy can be difficult. Unfortunately, once the diagnosis of seizures is made, it is easily perpetuated without being questioned, which explains the usual diagnostic delay and cost associated with PNES. Despite the ability to make a diagnosis of PNES with near-certainty, the time to diagnosis remains long at about 7-10 years; this indicates that neurologists may not have a high enough index of suspicion for the diagnosis of PNES. This article first examines the steps involved in making the diagnosis and then reviews management considerations. The diagnosis can be suspected on the basis of the history. Several red flags are useful in clinical practice and should raise the suspicion that seizures may be psychogenic rather than epileptic. Resistance to AEDs can be the first clue and is usually the reason for referral to the epilepsy center. Approximately 80% of patients with PNES have been treated with AEDs before the correct diagnosis is made. A psychogenic etiology should be considered in patients who are completely unaffected by AEDs (ie, no difference when taking AEDs). The presence of specific triggers that are unusual for epilepsy can be suggestive of PNES, and this should be specifically asked about during history taking. For example, emotional triggers such as ?stress" or "becoming upset" are commonly reported in PNES. Other triggers that suggest PNES may include pain, certain movements, sounds, and lights, especially if they are alleged to consistently trigger a "seizure." The circumstances in which attacks occur can be very helpful. Like other psychogenic symptoms, PNES usually occur in the presence of an "audience," and (although this has not been studied) occurrence in the physician's office or the waiting room is suggestive of PNES. Similarly, PNES usually do not occur during sleep. Detailed description of the spells often includes characteristics that are inconsistent with epileptic seizures. In particular, some characteristics of the motor (ie, convulsive) phenomena are associated with PNES (see EEG-video monitoring). The past medical history can be useful. Although this has not been documented, coexisting poorly defined and probably psychogenic conditions, such as fibromyalgia, chronic pain, or chronic fatigue, are associated with psychogenic symptoms. In a population of patients with refractory seizures, a history of fibromyalgia or chronic pain has a high predictive value (~70-80%) for a diagnosis of PNES. Similarly, a florid review of systems suggests somatization. The psychosocial history with evidence for maladaptive behaviors or associated psychiatric diagnoses should raise the suspicion of PNES. Pay particular attention to mental status evaluation, including the general demeanor and appropriate level of concern, overdramatization, and hysterical features. By contrast to the above, certain symptoms, when present, argue in favor of epileptic seizures. These include significant injury. In particular, tongue biting is highly specific to generalized tonic-clonic seizures and a helpful sign when present. Physical: Physical and neurological examination findings are usually normal. Psychological features (consistent with psychogenic episodes) include anxiety, depression, inappropriate affect or lack of concern (la belle indifference), multiple and vague somatic complaints suggestive of somatization, or abnormal interaction with family members. Causes: PNES is, by definition, a psychiatric disorder. According to the Diagnostic and Statistical Manual for Mental Disorders (DSM) classification, physical symptoms caused by psychological causes can fall under 3 categories: somatoform disorder, factitious disorder, and malingering. A somatoform disorder is the unconscious production of physical symptoms due to psychological factors. This means that symptoms are not under voluntary control, ie, the patient is not faking and not intentionally trying to deceive. Somatoform disorders are subdivided into several disorders depending on the characteristics of the physical symptoms and their time course. The 2 somatoform disorders relevant to PNES are conversion disorder and somatization disorder. The Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition (DSM-IV) added a new subcategory of conversion disorder (from the Diagnostic and Statistical Manual for Mental Disorders, Revised Third Edition [DSM-III-R]) specifically termed conversion disorder with seizures. By contrast to the unconscious (ie, unintentional) production of symptoms of somatoform disorders (including conversion), factitious disorder and malingering imply that the patient is purposely deceiving the physician, ie, faking the symptoms. The difference between factitious disorder and malingering is that, in malingering, the reason for the deception is tangible and rationally understandable (albeit possibly reprehensible); in factitious disorder, the motivation is a pathologic need for the sick role. An important corollary is that malingering is not considered a mental illness, whereas factitious disorder is. A generally accepted view is that most patients with PNES fall under the somatoform category rather than the malingering or factitious category. However, although the DSM classification is simple in theory, knowing whether a given patient is faking it is nearly impossible. In some circumstances, intentional faking can only be diagnosed by catching a person in the act of faking (eg, self-inflicting injuries, ingesting medications or eye drops to cause signs, putting blood in the urine to simulate hematuria). Malingering may be underdiagnosed, partly because the diagnosis of malingering is essentially an accusation. From a practical point of view, the role of the neurologists and other medical specialists is to determine whether organic disease exists. Once the symptoms are shown to be psychogenic, the exact psychiatric diagnosis and its treatment are best handled by the psychiatrist. The role of antecedent sexual trauma or abuse is thought to be important in the psychopathology of psychogenic seizures and psychogenic symptoms in general. A history of abuse may be more frequent in convulsive rather than limp type of PNES. <snip>
 Signature Thanks.
Marco The Netherlands
gaross - 17 Oct 2004 16:14 GMT I hope you aren't typing all those. The only part we needed that describes about what I was getting at yesterday is the top part (left below), where they imply that the type of event they're talking about isn't 'really epilepsy' . Some of the milder forms (like Simple Partial) could be put into that class if the Dr. wasn't careful or had 'markers' that would allow them to say it's Related to Epilepsy or it's not. (I marked part I'm talking about below with **s and removed rest.) G.
Also lower about 5 paragraphs they refer to this occurring? about 2-3 per 100,000 patients , etc. above where I typed <<<here>>>> . Epilepsy is supposedly present in the General population at rates of 1 in 15 or 1 in 30 people, depending on the information source. 3 per 100,000 is Massively BELOW what occurs with General epilepsy and is almost statistically irrelevant, unless you were one of the 3 having it. If 3 in 100,000 people had xxx condition, that's only 30 per million. (Other parts with ***s are just where I cut this to try get 11kb down to a size that others might read. Longer posts like that, many of the general group might just click Next and not read the content. G./
> Hi Gaross, > > > MY interpretation is they're talking about seizures that May be caused by
> > stress, High Blood pressure or other physical conditions that could **provoke a seizure.
> > In other words it's *Not* Pseudo in the sense I use it in English -- > > Pseudo is usually used to mean 'Fake' as in it doesn't really exist in > > fact --> "He's a Pseudo-Millionaire -- he only has 400 Dollars in his Bank
> > account... " Therefore I took (and still do) Pseudo-seizure as Not a > > 'Real' Seizure, the way we talk about one around here ?? including Petit [quoted text clipped - 8 lines] > <snip> > Background: Pseudoseizures are paroxysmal episodes that resemble and are *****************************************************
> often misdiagnosed as epileptic seizures. The term pseudoseizure refers to *********************************
> any nonepileptic episode that simulates an epileptic seizure. ************************************************
> Paroxysmal nonepileptic episodes can be either organic or psychogenic.
> Syncope, migraine, and transient ischemic attacks (TIAs) are examples of > organic, nonepileptic paroxysmal symptoms. This article only covers [quoted text clipped - 4 lines] > seizures (PNES) has become the preferred term and is the term used > throughout this article.
> PNES are common at epilepsy centers, where they are seen in 20-30% of > patients referred for refractory seizures. PNES are probably also common in > the general population, with an estimated prevalence of 2-33 per 100,000, <<<<<<<< here >>>>>>>>>>
> making PNES nearly as prevalent as multiple sclerosis or trigeminal > neuralgia. > Pathophysiology: Unlike epileptic seizures, PNES do not result from an *************************************************
> abnormal electrical discharge from the brain; they are a physical ***********************************
> manifestation of a psychological disturbance. They are a type of conversion > disorder and are usually involuntary. [quoted text clipped - 4 lines] > Internationally: The prevalence internationally is similar to that in the > United States. < snip > Unfortunately, once the diagnosis of seizures is made, it
> is easily perpetuated without being questioned, which explains the usual **************************************
> diagnostic delay and cost associated with PNES. Despite the ability to make > a diagnosis of PNES with near-certainty, the time to diagnosis remains long > at about 7-10 years; this indicates that neurologists may not have a high > enough index of suspicion for the diagnosis of PNES. This article first > examines the steps involved in making the diagnosis and then reviews > management considerations. <snip>
> The presence of specific triggers that are unusual for epilepsy can be > suggestive of PNES, and this should be specifically asked about during > history taking. For example, emotional triggers such as "stress" or > "becoming upset" are commonly reported in PNES. Other triggers that suggest > PNES may include pain, certain movements, sounds, and lights, especially if > they are alleged to consistently trigger a "seizure." **********
> Detailed description of the spells often includes characteristics that are > inconsistent with epileptic seizures. In particular, some characteristics of > the motor (ie, convulsive) phenomena are associated with PNES (see EEG-video > monitoring). *********
> By contrast to the above, certain symptoms, when present, argue in favor of > epileptic seizures. These include significant injury. In particular, tongue > biting is highly specific to generalized tonic-clonic seizures and a helpful > sign when present. ********** /
> <snip> > Thanks. > Marco > The Netherlands Satch - 17 Oct 2004 17:58 GMT Hello,
> I hope you aren't typing all those. I copied and pasted from the following Internet site: http://www.emedicine.com/neuro/topic403.htm#
> The only part we needed that > describes about what I was getting at yesterday is the top part (left [quoted text clipped - 6 lines] > I'm > talking about below with **s and removed rest.) I agree.
It is extremely difficult to diagnose correctly. GP's and even neurologists are not completely familiar with PNES and describe AED's while these do not really help in those cases (the Dutch website I referred to earlier described some private stories of people who had to take AED's).
 Signature Thanks.
Marco The Netherlands
Julie - 19 Oct 2004 00:08 GMT Hi G.R., it is possible that NotSure read the article on our webiste regarding non-epileptic seizures. http://www.epilepsyidaho.org/nonepileptic.htm
Take care, Julie, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org
> > Ok, I read a little bit more about pseudoseizure and feel a bit better. > I'm [quoted text clipped - 40 lines] > > My opinion. G./ Notsure - 19 Oct 2004 12:16 GMT > Hi G.R., it is possible that NotSure read the article on our webiste > regarding non-epileptic seizures. > http://www.epilepsyidaho.org/nonepileptic.htm Yes indeed I have. I just wanted to read everything I could. Because if what I've been experiencing for the past approx 20 yrs isn't actually epilepsy, I want to see what else it could be.
Thanks
Dave ???? - 15 Oct 2004 20:02 GMT Howdy!
IMNSHO: "Pseudoseizure" is just a word that people in the medical field use when they don't have the balls to make a diagnosis!! It's a "cover your professional a.s" diagnosis.
 Signature Dave ????
http://www.howdydave.com
> Ok, I read a little bit more about pseudoseizure and feel a bit better. I'm > now reassured that pseudo doesn't mean that the caregiver think's it's all [quoted text clipped - 16 lines] > Ah well, I remain, > NotSure David Ruether - 19 Oct 2004 16:56 GMT > Howdy! > > IMNSHO: "Pseudoseizure" is just a word that people in the medical field use > when they don't have the balls to make a diagnosis!! It's a "cover your > professional a.s" diagnosis. As my neurologist friend puts it, "Dissociative Disorder" (read "Hysterical Disorder", "pseudo-seizures", "psychogenic seizures", etc.) is the last refuge of the diagnostically bankrupt. It is all too common for conditions that are hard for neurologists to diagnose to be called "in your head", with your being trundled off to a psychiatrist. For some reason, neurologists often appear to be deathly afraid that they may treat a "head case" as a neurological problem, and they use this "pseudo-seizure" escape. BTW, I find it ironic that one term used is "hysterical", which refers specifically to women - as if they are more emotional than men, and therefore are more likely to have this condition...;-) --DR
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