Epilepsy: what's the problem?

Actually, it's pretty scary when someone has a grand mal seizure and they are *not* epileptic.

I've never seen an epileptic treated differently bcz of their condition, except in the case of obvious health issues related to the above sensitivity - eg replacing flourescent bulbs and adjusting the refresh rate on monitors.

From the Guardian's Corrections and Clarifications column last week. It made me laugh.

So yeah, it pretty much ruined his life, and I suspect that a bit part of that has been his negativity in dealing with it and also not having good enough medication in the 70's and 80's. I think he has been in a wheelchair for the past 6 years and is just waiting to die.

They offered me drugs for it, but after discussing their effects, I declined, and I'm glad I did, since it's been so little problem to me ever since.

So I suppose I do treat her differently, but only in that I'm always asking what the latest diagnostic theory is.

i do this, too, and i had all kinds of tests when i was younger that established that i wasn't epileptic; so i guess this isn't how epilepsy is defined.

The first is the suddeness and unpredictablility of seizures. Some epileptics say they can feel a seizure coming on. Most do not. If the person about to seizure doesn't know it in advance, then the people around them are totally taken aback when it happens (unless they are old hands who've spent a lot of time around seizures). Epileptics sometimes scream at the onset. It is unnerving, even if you're used to it.

The second is that people who have only a casual knowledge of the condition (meaning the great majority) feel utterly incapable of dealing with a seizure. They don't know what to do and whenever the subject of epilepsy comes up, they are acutely aware that they don't know what to do. This reinforces their fear of being around a seizuring person. They don't want to be responsible for an epileptic's safety and have nothing to fall back on but their ignorance.

The best solutions are knowledge and experience. I have some of both, since a family member has regular grand mal seizures. The important thing to understand is that, until the seizure ends, there is usually little you can do or should do. Stay near the person. Speak to them calmly, mostly because this will calm yourself. Wait. Watch.

Epileptics DO NOT "swallow their tongues" -- but during the aftermath of a seizure when the brain is still very chaotic and the muscles are beginning to unclench, an epileptic may vomit. The danger is that the vomitus may block their airway during a time when their gag reflex is out of commission. I was taught to turn my family member on her side as soon as her body relaxed enough to allow this manuever. It is a simple precaution.

After a seizure, expect a person to be disoriented. Their short term memory is shot to hell. They are probably confused and have a wretched headache. Just let them sit and gather themselves, figure out if they bruised themsleves and where they are. That sort of thing.

That's about it. I've seen hundreds of seizures and that covers most of it. If you are training for emergency medicine, there's plenty more you could know, but for a normal, everyday lay person it's enough. In this case, a little knowledge is not a dangerous thing, but the best remedy for fear and ignorance.

So -that's- the Deal. It certainly explains all the Black bile.

and

http://wizardishungry.com/

(wtf that is the best thing ever Jon!)

He was staying with friends who didn't know he had epilepsy. He had a seizure in his sleep and while it woke them up, they just thought he was having a nightmare and left him to it. When they woke up in the morning he was dead. They explained what happened to his parents and obviously the police and then his parents finally admitted he had epilepsy. Makes me wonder if they'd bothered to tell people, if he'd still be alive.

I knew a guy who had non-grand-mal seizures (what are those called?) every single day of his life, sometimes while driving. I couldn't believe people that cared about him let him just go around like some time bomb/death machine. His friends all said things like "Oh, you just touch him, he comes out of it."

(In general, see several posts upthread that basically amount to "it's really difficult to generalize about epilepsy because it has so many possible causes and effects." Think of it as a broad category like "headache." How it's dealt with and what it does depend on what's going on.)

based on people's experiences, does it sound like now it's 'out' my friend is going to suffer this as regularly as they have been the last couple of months (3 or 4 incidents in that time, compared with 3 or 4 incidents in the ten years prior)? i have no idea. i live with this person so naturally i'm worried but was re-assured by aimless's insistence that tongue-swallowing is unlikely (no vomiting in any of the recent instances too thankfully).

thanks again ilx

There's a good chance there's a connection (well, to the extent that it makes sense to talk about "chances" with something like epilepsy) -- lack of sleep/rest is a common trigger among many people with epilepsy.

It's hard to answer the "is it here to stay now" question without knowing more -- sometimes epilepsy comes solo, so to speak, sometimes it's a symptom of another problem or a reaction to an ongoing factor (stress, prolonged poor health, other things that are potentially transient and can take the epilepsy with them) ... we know so little about it that a lot of what we "know" is just the observation of correlations.

"Seizure-alert dogs, save lives". This is what the media would like the general public to believe, and while it makes for a great headline, it also makes for a grave misrepresentation of the truth.The truth is, seizure dogs can not be trained to “alert” a person of an oncoming seizure. Therefore, a seizure dog may be useful in assisting a person during or after a seizure, but is not guaranteed to be able to “alert” a person of an oncoming seizure.

Seizure-alert dogs, as implied by their name, are dogs that can sense and notify their human companions of an oncoming seizure. This alerting behavior has been reported to occur several seconds to 45 minutes or more before the onset of the seizure. The dog does this by exhibiting marked changes in behavior, including close eye contact, circling, pawing, barking etc.

According to Deborah Dalziel, research coordinator for a University of Florida Veterinary Medicine study on seizure alert dogs, “There is this misconception that any seizure dog can be trained to alert, which just isn’t true. A dog can cue in on minute behavioral differences, but can't be trained to alert”. She points out that there are no scientific studies to support the many theories on how dogs detect an oncoming seizure. "What we know on how dogs can alert to a seizure before it occurs is still a mystery. From a scientific standpoint, there is still so much that remains to be determined," said Dr. Basim Uthman, Associate Professor of Neurology and Neuroscience at the University of Florida College of Medicine and Brain Institute.

In the 1998 study conducted by Dalziel,Uthman and colleagues, a qualitative questionnaire was completed by 63 epilepsy subjects. Of the 63 subjects, 29 owned pet dogs. Of the 29 subjects, nine reported that their dogs responded to a seizure. These dogs remained close to their human companions, either standing or lying alongside them, sometimes licking the person’s face or hands during and immediately after the seizure. Of the nine dogs reported to respond, three were reported to also alert their human companion to an impending seizure.

While the numbers of the study done at the University of Florida were too small to be conclusive, they did suggest that the dogs’ alerting behavior is not breed, age or gender specific. Also, the study indicated that the dog is more likely to alert to a person with a certain type of seizure; a person who experiences migraine headaches and a person who experiences certain types of auras. Furthermore, the study indicated that the effectiveness of the seizure-alerting dog depends greatly on the ability of the human companion to recognize and appropriately respond to the dog’s alerting behavior. Megan Esherick, a trainer for Canine Partners For Life confirmed this by stating, “For some people a seizure-alert dog can really make a difference. Generally, the person needs to have the cognitive ability to notice that the dog is trying to alert them and respond accordingly. Sometimes the dog may be alerting in more subtle ways other than barking or pawing, and the person needs to be able to pick-up on that.”

Some trainers and researchers believe the dog is able to alert by detecting subtle changes in human behavior, while others assert that a dog’s heightened sense of smell enables it to detect an oncoming seizure. “I think a lot of it is that people give off cues and dogs are more alert to body language,” said Mike Sapp, Chief Operating Officer of Paws With A Cause. “But there haven’t been enough scientific studies done. So who really knows why?” Sapp believes that true alerting behavior is the result of the dog and human developing a strong bond, which can only evolve over time.

In these studies of the dogs, why hasn't anybody explored the possibility that the dogs are CAUSING the seizures? Forget to feed them one morning, they give the secret "spazz bark" and bingo!

I grew up with a mild form of nocturnal epilepsy(which I grew out of by my 20's) which my son has a slightly worse variation of so I am quite familiar with the condition and some of it's medicines and how scarily disorientating + shitty it can be for either parties. Today I was picking him up from his Ypat recreational group whilst one of his friends was looking typically post-fit exhausted, he was on the deck sleeping and looking very pale, heavily medicated, jaded and covered in sweat. The poor kid looked drained. The carers were all very calm because this kid consistently has multiple fits on a daily basis. What a fucking life.