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Main Character with Epilepsy
#11  skb 09-11-2019, 04:32 PM
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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#12  MarjaE 09-20-2019, 08:21 PM
Also, epilepsy has incredible variety in both triggers and symptoms. For example, partial and absence seizures.
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#13  Quoth 09-25-2019, 02:56 PM
Quote Nabeel
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.
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#14  BookCat 11-03-2019, 08:50 AM
@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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#15  Quoth 11-03-2019, 11:55 AM
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.
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#16  crich70 11-03-2019, 04:16 PM
I had seizures as a young child. I was put on Phenobarbital as a means of controlling them. Later (around age 6) the weaned me off of the drug slowly. So far I haven't had problems again. Of course as others have mentioned every case is likely to be different. In my case I was a blue baby because when I was born my mom had some problems and it's likely my airway wasn't cleared promptly. Of course as I've heard it in the past it was a nurse and not my mom's Dr.who attended either. He (the Dr.) was at the local country club having fun at the time.
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#17  BookCat 11-04-2019, 12:08 PM
I had meningitis when I was 3, survived, but remember often feeling 'odd'. At 7 I "passed out" while getting ready for school. It took years to diagnose, but I have complex partial epilepsy. When in my 20s many neurologists doubted I had the condition because most of the EEGs showed a normal Alpha rhythm; apart from one. During one of the many EEGs I had, I responded badly to an "overbreathing" test, in which you basically have to hyperventilate for several minutes. The test was stopped, I was quizzed about what I'd eaten that morning, given a glucose-like drink, then the test was repeated. The neurologist later beamed over the print-out, telling me that I had "beautiful brainwaves" (pointing at the tight, even waves) "but look what happened here," (pointing at the part where they became deep, loose and erratic).

Only when MRI scans became prevalent was I finally believed! The scan apparently showed scarring on my right temporal lobe.

I've had seizures almost weekly all my life. Luckily, it hasn't affected my intellect or memory. They last only a few moments if generalised (loss of consciousness) or just seconds if partial (very strange sensations of de ja vu and jamais vu and general terror).

The drugs have given me osteoporosis and neutropenia. The first is severe, the latter mild. The former is caused by the way most anticonvulsants induce the liver to produce an enzyme which wipes out vitamin d. It annoys me that people are still put on these drugs without vitamin d supplementation.

On the whole, I'm secretive about my condition until someone gets to know me well or is likely to witness a seizure. Otherwise people call ambulances etc when I'm perfectly fine within five minutes. Because I don't have convulsions, strangers assume I'm diabetic. Once, while waiting for someone in town, I 'conked out' and found myself surrounded by young student-types who gave me a (sugar free!) lolly. I appreciated the comfort Soon, my friend turned up, as did an ambulance whose personnel insisted on taking all my details.

Some boyfriends in the past have vastly misunderstood the condition, thinking it progressive, and fearing becoming my carer. I live happily alone with my cats. An old friend from over the road comes to sit with me when I have a bath - I have a natural fear of drowning.

Not being able to drive has been a bugbear, but one I totally understand.
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#18  Nabeel 11-05-2019, 05:50 PM
Thank you, Book Cat. I'm learning more all the time.

Nabeel
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