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Old 09-07-2019, 04:40 AM   #1
Nabeel
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Main Character with Epilepsy

I'm starting a novel in which the main character suffers from epilepsy, apparently makes a complete recovery, but then comes down with it again.

Can anyone recommend sources to find out about this condition? I'm particularly interested in the day-to-day experience of living with it.

The novel's set in the 1940s.

Thank you

Nabeel
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Old 09-07-2019, 04:50 AM   #2
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Quote:
Originally Posted by Nabeel View Post
I'm starting a novel in which the main character suffers from epilepsy, apparently makes a complete recovery, but then comes down with it again.



Can anyone recommend sources to find out about this condition? I'm particularly interested in the day-to-day experience of living with it.



The novel's set in the 1940s.



Thank you



Nabeel


Epilepsy isn’t like the flu. You don’t come down with it. And you don’t make a complete recovery. You go into remission. Some children do grow out of epilepsy. My daughter is turning 18 this year and for the first time in her life she hasn’t had a seizure in months. We almost don’t know what to do with ourselves. However, we are cautious. My brother went into remission when he was a teenager, but began having seizures again in college. You never know.

Here’s a list of books you might find useful: https://www.epilepsysociety.org.uk/g...t#.XXNvIyVMHDs


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Old 09-08-2019, 04:01 AM   #3
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Thank you Cootey: that's a very useful website.
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Old 09-09-2019, 11:52 AM   #4
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Thank you Cootey: that's a very useful website.
If I may--as I have a cousin whose entire life has been affected by epilepsy, in some not-great ways--I really feel that you need to learn a LOT MORE about epilepsy before you create a protagonist therewith.

I mean...yes, there are different types of epilepsy, but it's not, as Cootey says, like the flu. You don't "catch it" and you don't "come down with it." It's not contagious. I think you run the risk of seriously offending a lot of epileptics and their families if you don't do quite a bit more research before you continue writing about him/her.

Or, perhaps, there's another condition that might suit your plotline better? I mean...what made you think of epilepsy, in the first place, since, with all due respect, you're obviously not that familiar with it? What is it you need, illness- or condition-wise, to make your plot work? Maybe the good folks here at MR could help you find something that works better for you?

FWIW.

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Old 09-09-2019, 06:35 PM   #5
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I agree with Hitch.

There used to be a wonderful community on Live Journal (maybe called...Little Details) where you could get "maladies to order". That is, you give the group the problems you want your character to suffer from (ranging from gunshot wounds to other physical problems like being unable to survive for X time period without meds etc) and the group would supply an illness or location of injury that would likely fit.
Having said that, they would encourage further research in detail. Because little details.

It was also handy for random suggestions for google-ness about living conditions for various locations & time periods. Some of the advice was ordinary, but some of the topics and replies were genuinely interesting (think TV Tropes for writers).
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Old 09-09-2019, 09:23 PM   #6
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I agree with Hitch.

There used to be a wonderful community on Live Journal (maybe called...Little Details) where you could get "maladies to order". That is, you give the group the problems you want your character to suffer from (ranging from gunshot wounds to other physical problems like being unable to survive for X time period without meds etc) and the group would supply an illness or location of injury that would likely fit.
Having said that, they would encourage further research in detail. Because little details.

It was also handy for random suggestions for google-ness about living conditions for various locations & time periods. Some of the advice was ordinary, but some of the topics and replies were genuinely interesting (think TV Tropes for writers).

Ooooh, what a wonderful-sounding group!!! I take it that they have gone the way of (most) long-form user communities, by and large, having been replaced with 140-character epic sagas full of info? (/sarcasm about Twitter and other short-form "communication" systems...)

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Old 09-10-2019, 12:20 PM   #7
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Ooooh, what a wonderful-sounding group!!! I take it that they have gone the way of (most) long-form user communities, by and large, having been replaced with 140-character epic sagas full of info? (/sarcasm about Twitter and other short-form "communication" systems...)

Hitch
Maybe we could develop such a subforum! It might make the Writer's Corner a bit more active. I know something about type 2 diabetes, and deafness! (Well, that, and being too good looking. A bigger burden than you might think)
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Old 09-10-2019, 04:52 PM   #8
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Maybe we could develop such a subforum! It might make the Writer's Corner a bit more active. I know something about type 2 diabetes, and deafness! (Well, that, and being too good looking. A bigger burden than you might think)
Yup, that's a tough one to bear through life, indeed.

You know, it's NOT a bad idea at all...Hmmm...mods? Whatcha think?

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Old 09-10-2019, 05:30 PM   #9
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I just checked and...it's still kicking.

If you're a bit sensitive, just be aware that there are quite a few "fanfiction" based questions, but even those have the potential to be interesting e.g. the latest post is asking about "good natured insults from Brooklyn", but the following post is, indeed, an "injury to order" question.

https://little-details.livejournal.com/

Edited to add: I should add that not all the answers are...er, answers. Sometimes it's just chat.

Last edited by skb; 09-10-2019 at 05:35 PM.
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Old 09-10-2019, 05:45 PM   #10
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I just checked and...it's still kicking.

If you're a bit sensitive, just be aware that there are quite a few "fanfiction" based questions, but even those have the potential to be interesting e.g. the latest post is asking about "good natured insults from Brooklyn", but the following post is, indeed, an "injury to order" question.

https://little-details.livejournal.com/

Edited to add: I should add that not all the answers are...er, answers. Sometimes it's just chat.
I don't mean to be dense, but sensitive ...to what? Fanfiction?

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Old 09-11-2019, 04:32 PM   #11
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Yes, fanfiction is the red headed step child of the writing world and some people get sniffy about it.

I'll read bus tickets. I have to have something to read whenever I'm still. So I'm not "afraid" to read it. There is a lot of dross but honestly, I have read stuff that puts a lot of "real" published authors to shame. In fact, I've often wondered if those fanfic authors ever published professionally etc (I enjoyed their work so much that were "ripping yarns").
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Old 09-20-2019, 08:21 PM   #12
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Also, epilepsy has incredible variety in both triggers and symptoms. For example, partial and absence seizures.
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Old 09-25-2019, 02:56 PM   #13
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Quote:
Originally Posted by Nabeel View Post
I'm starting a novel in which the main character suffers from epilepsy, apparently makes a complete recovery, but then comes down with it again.

Can anyone recommend sources to find out about this condition? I'm particularly interested in the day-to-day experience of living with it.

The novel's set in the 1940s.
Epilepsy is a "catch all" tag for very many conditions. It is NOT a single disease!
You do not "catch it". It's rare that it's not diagnosed before adulthood. But Adult onset cases do exist.
People might have a few epileptic attacks in their life and never know if they were sitting or asleep.

Consult with your local Epilepsy association and online Epilepsy association resources before even considering having such a character.

Some are due to brain damage
Some are due to different unrelated genetic reasons
Some are also suffer with poor cognition, others are unrelated, i.e. An athletic genius could suffer from it.
Some are fatal in childhood
Maybe a 1/3rd have no known cause.
There is from birth, child hood onset and adult onset (rare) conditions.

There are about 6 types of fit/episode/seizures. Some sorts of epilepsy have only one kind of episode. One kind has all of them
There can be a 20 second loss of consciousness without convulsions (used to be called Petit Mal). Risk is injury from falling.
There can be slurring of speech and partial loss of motor control / incontinence.
There can be convulsions and different phases with a long recovery afterwards (used to be called Grand Mal)

Frequency can be from many times a day to monthly.

Many (Maybe near 70% even in 1940s) can be managed with drugs, ECT, brain surgery or diet. Or even avoiding triggers. Before drugs and ECT and surgery only management was a special diet (1920s) called the Ketogenic diet. It's still a good idea to try for the 30% or so that are not helped by drugs. The "Atkins Diet" is dangerous Celebrity diet based on it.
Generally brain surgery is tried on people with already a severe cognitive disability where the episodes are dangerous and frequent and nothing else works.

ECT is controversial for ANYONE (how many are helped and side effects of temporary memory loss, cognitive impairment etc).

Only a tiny percent are managed by avoiding triggers (like getting too tired).
Maybe only 3% to 5% have video / lights / flashing as a trigger.

There isn't really a cure, because we don't know what it is. If drugs, change of lifestyle or whatever results in no "attacks" for five years some countries will allow a driving licence. Often if the drugs are stopped, or diet dropped, or triggers not avoided the symptoms return.

Ireland is fairly typical of the West for this:
Population 4.75 million in the Republic of Ireland. About 440,000 suffer from Epilepsy (but many of those people, perhaps 80% are living totally normal lives. Perhaps it's completely managed for 75%), that though might include NI, I'm not sure.

Commonest cause of injury is falling.
Commonest cause of death is drowning in the bath. Totally avoidable.

There isn't really any typical type.

Last edited by Quoth; 09-25-2019 at 02:59 PM.
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Old 11-03-2019, 08:50 AM   #14
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@Frustrated Reader That was a great analysis of the condition; the only thing wrong is that ECT has never been used for epilepsy, it's generally used for depression which doesn't respond to meds or psycho-therapy. You may be thinking of EEG, which is a reading of brain waves done by attaching electrodes to the scalp. The results were once 'drawn' on paper but are now on computer. MRI's are also extremely useful.

The OP also needs to know more about the meds used at that time. Sometimes these cause secondary illnesses. The prevailing social attitude to the condition in the 1940s would also need to be researched. I would imagine that it was still strongly linked with insanity in the mind of the general public, and that people with the condition would be in asylums.

Maybe a less complex condition would suffice?
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Old 11-03-2019, 11:55 AM   #15
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No, ECT has been used, unfortunately. I'm no expert, but it seems to have been tried for nearly everything and ought like polygraphs (lie detectors) to be banned as pseudo-science. Lots of treatments for depression are really really stupid, including ECT.

Yes, EEG was and is used too. It takes longer and now can even be portable at home. You can now make your own DIY EEG and ECG, though care with electrical isolation is needed. Battery power and and isolated serial or USB link adaptor (off the shelf item) is a really good idea. A MRI is useful only in cases where there are physical issues in the brain, such as lesions. Only a proportion of epilepsy sufferers have that, but it's a useful diagnostic test to establish if that is the case as different treatment may be appropriate. I'm very familiar with chart recorders (of the galvanometer pen type and later simulated ones using a printer in graphics mode via analogue to digital conversion and storage) and have designed electronics to capture data instead which allows computer analysis and sending files to a different expert to view on screen.

Yes, some people have worse side effects from some medications than the actual episodes.

Basically what I was trying to say is that there isn't any stereotypical disease called Epilepsy, like say Measles. It's basically the label when you have more than one seizure. There are many known reasons, many treatments. A significant number of cases have no known reason. A significant number don't respond to medication. Some respond to a change in diet or lifestyle. The most stereotypical thought people have is that video games or flashing lights can trigger an episode. That's maybe 5%.

Unfortunately putting sane people (esp unwanted wives) into Asylums was prevalent in the west up till late 1960s simply if the person was eccentric, awkward, had a baby out of wedlock or you wanted her money. Some establishments in Ireland were called Laundries. In USSR political views could mean the Asylum till fall of USSR (I don't know about Russia and China today).

Medical people even in 1920s would not have regarded epilepsy as either demonic or madness, though some of the public might have. Some still might.
Certainly some in Victorian times were put in asylums because they had epilepsy, though at the end of that era the experts seem to have regarded it as unfortunate rather than madness.

We don't know what the OP has in mind.

Last edited by Quoth; 11-03-2019 at 11:57 AM.
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