Medical Forum / Diseases and Disorders / Epilepsy / August 2005
A video
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kenny - 31 Jul 2005 03:24 GMT Hi all Please don't think I'm sad, but althought I have our problem I myself have never seen how a person behaves during a G-M, my girlfriend tells me that I look like a totally different person. And a few other things that I will keep secret. I would like to get a video of someone during a G-M so I can see for myself, how I might look. Any help??? Thanks Kenny I guess it might be a bad thing to post so please E-mail me direct.
Beck - 31 Jul 2005 04:29 GMT I may be totally wrong here and other regulars in this group please tell me if I am. I find it a little rude asking people for such things. You have things you want to keep secret about your situation, yet you are asking someone to send something (that may be very personal to them) to you. I don't know about anyone else but I would be a little suspect about someone wanting a video of this. I don't think you are "sad" but I do think its an invasion of privacy. Beck.
> Hi all > Please don't think I'm sad, but althought I have our problem I myself [quoted text clipped - 6 lines] > Thanks Kenny > I guess it might be a bad thing to post so please E-mail me direct. Mary Fisher - 31 Jul 2005 12:40 GMT >I may be totally wrong here and other regulars in this group please tell me >if I am. I find it a little rude asking people for such things. You have [quoted text clipped - 4 lines] >invasion of privacy. > Beck. I think that it depends on the subject of the seizure - the person having it. It wouldn't bother me a bit, I wouldn't see it as an invasion of my privacy. If I wanted to keep such things private I'd live alone and never go out so that I'd be sure of no observation.
That, by the way, doesn't mean that I'm an exhibitionist. Seizures are part of what we all are here, we can't separate ourselves from them. Since they're often unpredictable we can't protect ourselves from being observed 100%.
What's more, I don't think we should. I think it's GOOD for others to witness seizures with the aim of education.
When I was a teenager a friend at our youth club often had a grand mal while we were dancing. It taught me that it wasn't frightening for us, it wasn't embarrassing for him, when it was over we all carried on as we had done before. Thats of course was in the fifties and before 'personal space' had been invented.
It also meant that when I had one I wasn't frightened, I realised that the cause should be investigated but it was interesting more than anything else.
I realise that this isn't what the OP was wanting but I think it's an interesting question. Perhaps his friend could video him next time he has a seizure. I'd have liked to see myself at that time.
Mind you, I'd have liked to see a film of the brain surgery which was performed on me. And the breast cancer surgery. And the birth of my children. And Spouse's hip replacement. Now those were all invasions of privacy of the most personal kind but we were grateful for them. And it's not fair that others could watch and I couldn't!
Mary
Dave ©¿©¬ - 31 Jul 2005 04:31 GMT Howdy!
I would suggest asking your neuro/epileptologist. S/he probably can show you a video of a person having a G-M seizure.
There is a BIG difference in what end of the seizure you're on! I always gave the "no big deal" speil about my siezures. Then I had a room mate in college who had GM seizures EVERY NIGHT!!!
I freaked out the first time I saw one! After the third or fourth I was ok. After that I had some perception of "what the big deal was" and my explanations were given with a bit more compassion.
 Signature Namaste
Dave ©¿© "Ego sum quis ego sum quod ut est quicumque ego sum"
http://www.howdydave.com
> Hi all > Please don't think I'm sad, but althought I have our problem I myself [quoted text clipped - 6 lines] > Thanks Kenny > I guess it might be a bad thing to post so please E-mail me direct. G.Ross - 31 Jul 2005 05:23 GMT Find some recent posts by Howdy Dave or Julie on the group. They both list websites they've developed over last 7+ years, that describe the various symptoms of various szr. types. Under the Idaho (Julie's ) Website there is a First Aid for Seizures page that describes possible behaviours of the main seizure types (about 5 of them). Each of the main seizure types have a unique set of possible behaviours that Doctors use to identify the type you are having. Show the page to her. You *are a totally different person during seizure onset, since the electrical storms that are occuring in your brain and nervous system are what produce the seizures. How people around us behave will determine how easily and safely we might come out of a seizure.
We did this, from the 'inside' about 3 months ago on the group, and various people explained how they felt from our side of the seizure fence. I don't know where to get the History file, unless Google or your internet provider can call it up. But since a bunch of us already posted that stuff back then (early July?), plus many of the regulars are away on vacation, you may not get a lot of response to a generic question like below. Start first by showing her the First Aid for Seizure chart. Those will show her what a 'normal' seizure looks like. If that's something she might have difficulty with or handling, it's probably best you find that out now.... This is an International Newsgroup. While many of the Europe and Australia/New Zealand regulars are not posting currently, sometimes they only read the group each 4-6 days. You may get some more direct (on the group) answers from them, if they didn't already participate before. For some of us 'olde ones', starting over and reposting the stuff over will either repeat what we've already done, or bore some of the others whose opinions we might value.
What are the things she's concerned about that she described to you? I assume she didn't just give you that one liner below, and you headed off to the internet. A Grand Mal (French for Great Sickness -- named in the 1700s?) is one of the more common types of seizures. And the commonest symptoms and First Aid are described in a few sentences on that First Aid Site I mentioned. Alternatively, there might be more detail too under the U.S. Ep. Foundation of America site --http://efa.org . You could try those first. (Oh, and most of us don't consider this a problem. It might be a pain, or take a while to get used to, but it's part of who we are, and we don't consider ourselves 'a problem'. I don't know if that helps explain an earlier post, but at first you sounded like you might be newly diagnosed? or not used to removing any Labels that might impede us. Once any negative labels get discarded we seem to adapt to this better. I hope some of that made sense. )
The only video I've ever seen was one that was made (possibly in Canada) called The Centre of her Storms. It likely wouldn't be much help as it shows a young woman who had Severe Intractible Seizures since childhood, who undergoes surgery for the type she had. I don't even remember if they were Grand mals, just they reduced her functioning severely with their intensity and frequency. If you have a local chapter of an Epilepsy Association they might have a copy of it, but like an earlier poster suggested, most of our seizures tend to be unique to some extent- and the type she has in the movie were Extreme and Severe since her childhood. /G.
> Hi all > Please don't think I'm sad, but althought I have our problem I myself [quoted text clipped - 6 lines] > Thanks Kenny > I guess it might be a bad thing to post so please E-mail me direct. kenny - 31 Jul 2005 21:31 GMT Hi Sorry Becks I don't want a video of you or anybody in perticular and I wouldn't dream of asking anyone to send me a video of themselves having a seizure. Want I would like is a website address were I can go and have a look. I have nothing to hard hide about my situation at all. The secret I mentioned were to do with the mess I made in the bed and a few other places and nobody wants to read that do they??? I have had Epilepsy for only one year, and am constantly amazed when I read some of the postings here about how people have been coping with it for years. Thanks Kenny
Mary Fisher - 31 Jul 2005 21:34 GMT > Hi > Sorry Becks I don't want a video of you or anybody in perticular and I [quoted text clipped - 4 lines] > mentioned were to do with the mess I made in the bed and a few other > places and nobody wants to read that do they??? We've all done it at one time or another.
> I have had Epilepsy for only one year, and am constantly amazed when I > read some of the postings here about how people have been coping with > it for years. Well, Kenny, when you're a hardened epileptic you'll be able to talk with authority to others.
Stick around! Don't despair, just consider the alternative if your brain weren't active ...
Mary
Wygtya - 02 Aug 2005 20:37 GMT > > Hi > > Sorry Becks I don't want a video of you or anybody in perticular and I [quoted text clipped - 8 lines] > > Mary "We've all done it at one time or another." Aw Christ, way too many times, way too many f*cking times. I was never "there" when I had mine. Yeah, "woke up" soaked. Wondered who did it. The 2nd time I went in for a Video-EEG, they got their f*cking film. (I gave it to them. I chewed (my choice/my decision/my gd brain) a dozen Wellbutrin SR's) They got video & I got Ativan. I'm now 1.5 years post- op Right Mesial Temporal Lobe Schlerosis Ectomy and sz free. As a result of the surgery I may have lost any "religious-osity" I may have had, but I'm still so absolutely f*cking scared of those gd szs that I consider lamictal my twice daily (literally) blessed sacrament, mandatory without fail. No joke friends.
Mary Fisher - 02 Aug 2005 20:48 GMT >> > Hi >> > Sorry Becks I don't want a video of you or anybody in perticular and I [quoted text clipped - 20 lines] > lamictal my twice daily (literally) blessed sacrament, mandatory without > fail. No joke friends. How eloquent.
G.Ross - 03 Aug 2005 04:17 GMT >> We've all done it at one time or another. >> Mary > > "We've all done it at one time or another." Aw xxxxxxxx way too many > times, way too many f*cking times. I was never "there" when I had mine. > Yeah, "woke up" soaked. Wondered who did it. G.- You're posting on an International Group of about 60 people who have had, or currently have, uncontrolled seizures. Your comments or experiences, though they might be new to you, are not new to the rest of us. If you want or expect replies or possible websites you might not have already found, pretend you already know that. Mary is one of our regular posters and has been around since at least 1999 helping people newly diagnosed. If you need a dartboard, there isn't one here. G./
> The 2nd time I went in for a Video-EEG, they got their xxxxxxxx film. (I > gave it to them. I chewed (my choice/my decision/my gd brain) a dozen > Wellbutrin SR's) They got video & I got Ativan. *G* More than 60% of us had a video eeg or a static eeg already as part of our diagnosis too. Those are standard tests used to diagnose the type of seizures we each have. They probably also did an MRI before and after your surgery to check how things went.
I'm now 1.5 years post-
> op Right Mesial Temporal Lobe Schlerosis Ectomy and sz free. *G* You haven't had seizures for more than 1.5 years, then below you said you were still scared of having another one. Why is that? Are you expecting to have more, when you're controlled with meds. and following the operation above? Or are you still having Auras as part of your daily life?
(I was told in 1993 to hope for 2-3 seizures per month as my 'new normal'. Last 2 I had were in 1997 and 1998 (one each). My seizure focus is also in my Right Temporal Lobe. I don't know how the Mesial part relates to the Temporal part. I had thought those were 2 separate sections of the brain on some diagrams? ) /
As a result
> of the surgery I may have lost any "religious-osity" I may have had **G.** what does that mean and how does it relate to control of your seizure types?
, but
> I'm still so absolutely xxxxxxx scared of those gd szs that I consider > lamictal my twice daily (literally) blessed sacrament, mandatory without > fail. No joke friends. Most of us here use one to four medications to control our various seizure types. If your's are under control, using only one (lamictal) why is that a problem? Some people don't get control at all, no matter what type of medications they've tried. Some people have to be medicated to a level where they hardly know where or who they are. So we're lucky, compared to them? G./
Patsy and Darryl - 05 Aug 2005 04:06 GMT > "We've all done it at one time or another." Aw Christ, way too many > times, way too many f*cking times. I was never "there" when I had mine. [quoted text clipped - 7 lines] > lamictal my twice daily (literally) blessed sacrament, mandatory without > fail. No joke friends. Has your neurologist discussed the possibility that you may have lost the seizures and ended up with Tourette's?? Just a thought.
kenny - 06 Aug 2005 01:19 GMT Many thanks for all the replies, the website from the Netherlands has exactly what I wanted. Regards Kenny
Beck - 02 Aug 2005 03:33 GMT No need for an apology, I didn't mean to sound as hard as I did, it's me who should apologise. I guess I was being protective of people here as I would never send anyone a video. I was also using my feelings to judge how others may have felt. I see people here don't feel the way I do. I know that when I was in hospital a couple of years back for unrelated problems, I had nurses and doctors ask if I was okay with students observing me. I said I would talk to them and answer any questions they wanted, but I didn't like the idea of being observed. I guess I just used my experience and thought I was some how protecting others. I do apologise if I sounded harsh. I didn't mean to. Beck.
> Hi > Sorry Becks I don't want a video of you or anybody in perticular and I [quoted text clipped - 9 lines] > Thanks > Kenny chris - 09 Aug 2005 06:19 GMT >>Hi >>Sorry Becks I don't want a video of you or anybody in perticular and I [quoted text clipped - 22 lines] > I do apologise if I sounded harsh. I didn't mean to. > Beck. Hey Beck,
I can relate to the feeling of "being observed" and not liking it. A few years back I was visiting my neuro when 4 strangers (doctors or interns) just walked in to the exam room. Only then did my neuro ask me if I would mind some visitors! Now I have very infrequent szr activity, and knew there would be no show that day, but I was cordial, and told doc that I wouldn't mind. I then explained to my "audience" that I was confident there would be no seizures activity, but I would be glad to answer any questions... All I got were blank stares from the group, and after everyone was sufficiently uncomfortable, they promptly moved on. I've never in my life felt like such a freak.
To be observed while having a szr would have been more comfortable... (I wouldn't have remembered it)
I'm all for everyone from students, to doctors, to John Q. Public learning all they can about EP. It's beneficial to all of us. However, in my case, a little more tact would have been greatly appreciated!
 Signature chris k.
Mary Fisher - 09 Aug 2005 10:01 GMT > I can relate to the feeling of "being observed" and not liking it. A few > years back I was visiting my neuro when 4 strangers (doctors or interns) [quoted text clipped - 6 lines] > everyone was sufficiently uncomfortable, they promptly moved on. I've > never in my life felt like such a freak. Why do you think they were uncomfortable?
I've been observed (sometimes in very personal, gynaecological) ways for years, doctors have to learn and I never mind being observed. In UK the patient HAS to be asked if s/he minds. It seems very fair to me, the patient can refuse and there's no comeback. There are always extraverts like me who'll invite them in. as it were :-)
I once had a circle of about twenty students for an interview about a skin problem, it was quite rare and the consultant was keen for them to see it and hear his questions, my answers and his conclusions. ...
> I'm all for everyone from students, to doctors, to John Q. Public learning > all they can about EP. It's beneficial to all of us. However, in my > case, a little more tact would have been greatly appreciated! In your description I can't see any lack of tact, perhaps you haven't told us everything?
Mary
G.Ross - 09 Aug 2005 16:35 GMT *********
>> I can relate to the feeling of "being observed" and not liking it. A few >> years back I was visiting my neuro when 4 strangers (doctors or interns) [quoted text clipped - 20 lines] > us everything? > Mary The older post (expired here now), I took originating poster asking for opinions about whether we thought it would have been less 'goading' for a Doctor or their receptionist to explain the purpose of the Video, ahead of the meeting, what it was for and whether they would mind it, or having some students present during the examination and Doctor interview, as part of those Doctors' training. It sounded like they were confronted with it in the presence of all the Trainee Doctors at the start of the actual interview-> "This is your Life and we're going to Televise this on BBC 2 at 11 -- now shall we continue? or do you want to look like a spoilsport?" and no matter what answer you give, it's the wrong one --> Yes, I want to be on TV, no matter how uncomfortable I might look, when all I wanted was help to get better, or No, I don't want to play along, or have a chance in win a trip to the Gobi Desert in a Dune Buggy with 4000 metres of Saran Wrap for a weekend...
Although I had similar experience to what they described (where I was already in the Doctor's office, and had met the student he was training), it was afterward where I thought I could have been asked first during my wait at the receptionist's. And while I used to take a list of questions I wanted to ask him, as I only saw him each 4-6 weeks by that time, I didn't know as I left that day-- after finishing my Tutoring Duties, if I had asked him Questions *I had wanted to ask about, or if I had received anything from the appointment. (Formerly, appointments were intended for the patients? ) /G.
chris - 11 Aug 2005 06:30 GMT >>I can relate to the feeling of "being observed" and not liking it. A few >>years back I was visiting my neuro when 4 strangers (doctors or interns) [quoted text clipped - 8 lines] > > Why do you think they were uncomfortable? Speculation... I had nothing else to go on since they didn't speak.
> I've been observed (sometimes in very personal, gynaecological) ways for > years, doctors have to learn and I never mind being observed. In UK the [quoted text clipped - 5 lines] > problem, it was quite rare and the consultant was keen for them to see it > and hear his questions, my answers and his conclusions. As I said: I had no problem with the whole scenario initially. It was the cold way that they conducted themselves that pissed me off. Even if they were just there for the scientific side of things, hearing a "thanks for your time" or even "good-day" would have made me feel much better about the situation, and I don't think that's too much to expect.
>>I'm all for everyone from students, to doctors, to John Q. Public learning >>all they can about EP. It's beneficial to all of us. However, in my [quoted text clipped - 4 lines] > > Mary
 Signature chris k.
Julie - 01 Aug 2005 05:20 GMT Hi Kenny, I don't think you ask a rude question. Seeing what a seizure looks like is part of education. If you lived in Idaho you could borrow the video tape from the Epilepsy Foundation of Idaho. If you live in the US, I imagine the state you live in would have similar tapes that we have here in Idaho. One 10 minute tape I see on the list is entitled Seizure First Aid. Real seizures, as well as re-enactments, are used to deomonstrate Tonic-Clonic (Grand mal) seizures. http://www.epilepsyidaho.org/library.htm
I would think that other countries would have something similar from their epilepsy support.
How are your family and friends coping with your seizure disorder? The more education for all of you, the more you will feel empowered.
Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org
> Hi all > Please don't think I'm sad, but althought I have our problem I myself [quoted text clipped - 6 lines] > Thanks Kenny > I guess it might be a bad thing to post so please E-mail me direct. Sandy G - 02 Aug 2005 07:24 GMT Hi All,
Im a mother of a Twin boy - premmie of 27 wks-12 wks early - 1 lb 13 oz - Kyle with mild CP and intractable epilepsy who will b goin in for brain surgery in Sept for seizure surgery - any who - Kyle is almost 19 now and has had every type of seizure you can have I am sooooooooooooo tired of tryin to explain too people of how he looks during a seizure or how he may look as one may be coming on havin a video tape would help a LOT of people Im gona get a copy of the EEG they did during testing to find out if he would b a candidate for brain surgery - we had 2 in hospital stays and they video taped him havin about 14 seizures - he will not watch them and turns his head if anything on TV is about anyone having seizures - so I do understand both sides - but PEOPLE have no idea - and as a mother - am ALWAYS tryin to explain to someone how he may turn or act - I have tried to video tape him on my own but its too hard to do - as you can imagine - so I think what you are wanting is a good thing - how too get it could b hard - Kyles are all over the board - suttle too BAMM I dont know if I will b able to post or make a copy of it but I'll keep in touch Sandy G
>Hi Kenny, I don't think you ask a rude question. Seeing what a seizure >looks like is part of education. If you lived in Idaho you could borrow [quoted text clipped - 21 lines] >> Thanks Kenny >> I guess it might be a bad thing to post so please E-mail me direct.
 Signature Sandy G
jan.dujardin@gmail.com - 04 Aug 2005 20:31 GMT Hi Kenny,
On this Dutch website you can find video's of different types of seizures. They have been made in a very respectful way and I don't think there's any need to feel offended.
Even if you don't understand Dutch, you can find the video's by searching within the webpage for the word "video" (surprise!).
Generalised seizures http://www.epilepsie.nl/index.php?forcedoc=%2Fartikel.php%3Fid%3D89
Partial seizures http://www.epilepsie.nl/index.php?forcedoc=%2Fartikel.php%3Fid%3D88
Friendly regards,
Jan
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