Myths about Epilepsy

kath12

El Pistolero wrote: »

All the "funny" jokes have been removed.

I don't want to see anymore.

I have a son with this condition, he got it when he was 16 years, as a baby he was likely to get a convulsion if he had a high temperature, the doctor never associated this with his present condition. luckily the medication he is on completely controlls his condition. he has started to go to discos, and my worry is in case he drinks too much as this will deleat the effect of his medication .

Fluorescence

Kidchameleon wrote: »

Are people consious when having a seizure?

Some people report being able to see what's going on around them but not hear anything, other people report the opposite. Others say they see a lightshow or hear random sounds/music. Some people can't remember even having a seizure at all.

Everyone experiences it differently, so it's hard to say.

billymitchell

Myth - You can stop a seizure.

FALSE. This is an extremely dangerous myth. NEVER try to restrain someone having a seizure. Clear a space around them and let them come out of it in their own time.

Should you not put something underneath their head to stop them from banging it off the ground. Then put them in the recovery position when the seizure has finished

old hippy

Kidchameleon wrote: »

Are people consious when having a seizure?

I always used to know seconds before a seizure, I'd try (not always successfuly) to sit/lie down. I'd experience a feeling of deja vu & next thing you know, I'd be waking up being put onto the ambulance. Always embarrassing - eventually I'd just say to a friend/colleague who was there - "I've had another seizure, right?"

Fluorescence

billymitchell wrote: »

Should you not put something underneath their head to stop them from banging it off the ground. Then put them in the recovery position when the seizure has finished

If their head is thrashing around a lot, yes. What I meant is not to try to physically restrain the person by holding them still.

The recovery position isn't really necessary unless the seizure was particularly long or violent. You can if you want to though

2qk4u

My son has Sleep Deprivation Epilepsy, he is not a affected by flashing lights, he plays xbox games and goes to the pub and night clubs.
He has been told he can learn to drive once he is one year seizure free.
Most of the time when he has a seizure he falls forward and smashes his face of anything that gets in the way, he has scars, broken teeth, missing teeth, broken nose and plenty of bumps.
I have found it very hard to come to terms with the injuries he gets and the fact that he could die at any time if he has a seizure at the wrong time, top of the stairs, crossing the road ect.. I can handle the seizure itself and the recovery period but I live on my nerves with the dangers associated with this condition.

Dermighty

In before Seizure Robots!

InkSlinger67

Epilepsy is great, I'd highly recommend it to anyone who wants their life ruined.

Wrong forum btw.

Chuck Stone

Silas Marner was a fierce man for the seizures.

Conor Bourke

liliq wrote: »

There's an oral spray now as well. Had it for my ex but I can't remember the name of it. They only recommend anything like that once the seizure has been going on for 5 minutes.

Buccal Midazolam?

I lost my beloved brother Colm/JIZZLORD to Sudden Death in Epilepsy (SuDEP) in September 2010, he had only had a formal diagnosis of epilepsy for one month prior to his death but had been experiencing seizures for a few months previous.

Colm was a lot like me- pragmatic and practical, no time for excuses or feeling sorry for himself. He found Brainwave to be very helpful to him in the first few days following his diagnosis and from then his attitude was "Sure I'll be fine, just gotta work around this". Sadly this was not to be for him.

If you see volunteers selling roses/pins for Brainwave, please pick one up, or if you have time have a little look at the Brainwave website to learn a little more about what is Ireland's most common neurological condition.

Thank you

/ghey

old hippy

2qk4u wrote: »

My son has Sleep Deprivation Epilepsy, he is not a affected by flashing lights, he plays xbox games and goes to the pub and night clubs.
He has been told he can learn to drive once he is one year seizure free.
Most of the time when he has a seizure he falls forward and smashes his face of anything that gets in the way, he has scars, broken teeth, missing teeth, broken nose and plenty of bumps.
I have found it very hard to come to terms with the injuries he gets and the fact that he could die at any time if he has a seizure at the wrong time, top of the stairs, crossing the road ect.. I can handle the seizure itself and the recovery period but I live on my nerves with the dangers associated with this condition.

You just have to let him live his life; when I had it (and there's nothing to say it couldn't come back) I was told not to swim on my own - or even have a bath unsupervised! Needless to say, I decided to take the risk. But yes, you can get bumps and bruises. I'm sure your son is sensible enough to alert his mates to his condition.

Fluorescence

InkSlinger67 wrote: »

Epilepsy is great, I'd highly recommend it to anyone who wants their life ruined.

Wrong forum btw.

I debated putting it in Long Term Illnesses but tbh the idea of European Epilepsy Day is to get the general public talking about it, not just people affected by it. After Hours is an excellent platform for this kind of discussion, especially since it gets such an enormous amount of traffic.

There's been threads in here about depression and psychosis for example, which really opened a lot of people's eyes about those conditions.

_feedback_

fluorescence wrote: »

I debated putting it in Long Term Illnesses but tbh the idea of European Epilepsy Day is to get the general public talking about it, not just people affected by it. After Hours is an excellent platform for this kind of discussion, especially since it gets such an enormous amount of traffic.

There's been threads in here about depression and psychosis for example, which really opened a lot of people's eyes about those conditions.

I wholeheartedly agree with you, but shame that the AHness was deleted from it.

There are ads running on radio about epilepsy at the moment, which go something like "I work in the Army, I drive a tank, I enjoy travelling with my work, I enjoy working with firearms, oh, and I have epilepsy". Suggesting that a sufferer can lead a healthy, active life etc.

I'm sure the line "I have epilepsy, AND a sense of humour" wouldn't be out of place in one of those ads.




*I made up the army script, as couldn't remember what the actual ad says.

Fluorescence

elviscostello wrote: »

I wholeheartedly agree with you, but shame that the AHness was deleted from it.

There are ads running on radio about epilepsy at the moment, which go something like "I work in the Army, I drive a tank, I enjoy travelling with my work, I enjoy working with firearms, oh, and I have epilepsy". Suggesting that a sufferer can lead a healthy, active life etc.

I'm sure the line "I have epilepsy, AND a sense of humour" wouldn't be out of place in one of those ads.




*I made up the army script, as couldn't remember what the actual ad says.

I thought the jokes were quite funny . No harm when it's not meant to be offensive or insulting.

fatherted1969

I worked in a boning hall in a meat plant as a boner for many years. I remember a boner taking a seizure while working one morning. His boning table was across on the other side of the hall and there was a conveyer belt separating us anyway he went into seizure and d lads over on his side went to his aid. We were working on steer hindquarters at the time big massive sides of beef and one of the lads boned out a rib bone about 24 inch's in length and prob 2 inch's wide. It was sawed at one end and the edge's were jagged where it wasn't a clean cut with the saw, he tries to stick the bone in the poor chaps mouth cos he said he'd swallow his toungue, never forgot it

InkSlinger67

fluorescence wrote: »

I debated putting it in Long Term Illnesses but tbh the idea of European Epilepsy Day is to get the general public talking about it, not just people affected by it. After Hours is an excellent platform for this kind of discussion, especially since it gets such an enormous amount of traffic.

There's been threads in here about depression and psychosis for example, which really opened a lot of people's eyes about those conditions.

The majority came here to make jokes about it and nothing else. This isn't raising awareness, it's just sticking the knife in deeper.

Sindri

The World Wrestling Federation should start a new franchise of Epileptic Wrestlers.


Stick them in the middle of the ring and watch them thrash each other.

old hippy

InkSlinger67 wrote: »

The majority came here to make jokes about it and nothing else. This isn't raising awareness, it's just sticking the knife in deeper.

Yeah but we get a laugh out of their sheer ignorance, it's not a one way street, ya know?

It's like tourettes, the poor unfortunates just can't help themselves...

stovelid

El Pistolero wrote: »

I don't want to see anymore.

Cover your eyes with masking tape?

Fluorescence

InkSlinger67 wrote: »

The majority came here to make jokes about it and nothing else. This isn't raising awareness, it's just sticking the knife in deeper.

I was actually quite heartened to see how many people thought the myths were completely ridiculous (particularly the one about it being contagious). Signals a change in attitude

RussellTuring

I'm not a doctor but I've been having fairly regular seizures since last year and was soon diagnosed as epileptic.

Cianos wrote: »

If someone has a seizure, how can you tell it's epilepsy and not something else, that may require intervention?

It doesn't really matter. Epilepsy is the condition of being far more likely to have seizures than most people so if you see someone having a tonic clonic seizure the procedure shouldn't really differ. It's important to not restrain the person and please never attempt to stop a person from biting or swallowing their tongue during a seizure. It should be over within five minutes or so at which point you should let the person relax and go asleep if they want to. They might not know where or even who they are so just try to comfort them. If the seizure lasts more than a few minutes or they have more than one then it's time to call an ambulance.

Buceph wrote: »

I don't get this. It's of the brain and it's in the DSM, which is a pretty good definition of mental illness.

Neurological disorders are specifically problems with the nervous system whereas mental disorder is abnormal patterns of thinking and behaving. Mental disorders may have neurological causes but not all do, just as neurological problems won't necessarily alter a person's behvoiur (apart from things that are necessarily affected by neurological problems).

Kidchameleon wrote: »

Are people consious when having a seizure?

That depends on the type of seizure. You can have a partial seizure, for instance being unable to speak or understand words even though you can hear just fine, hallucinations or altered vision or even limb movements that you can't consciously control. You're aware of this happening so for people like me who can have these before having a generalised seizure with the characteristic convulsions, it can act as a warning or a spider sense, as I call it.

On the other hand, if you have a seizure that causes you to convulse, you'll probably have lost all sense of perception as soon as it starts or even moments beforehand. You may not come back to your old self again for several hours or have memories for some time after following the seizure, even if you were walking around and talking to people. It's like the person that usually occupies your body is away for a while.

There's probably a lot I've forgotten so if anyone has any specific question for someone who has experienced seizures, just ask.

By the way, I haven't noticed any kind of discrimination yet, but I'm usually the first to make a joke about it if it comes up in conversation and I'm very open about it.

_feedback_

RussellTuring wrote: »

I'm not a doctor but I've been having fairly regular seizures since last year and was soon diagnosed as epileptic.

Do you get an idea of when one is going to come on? The first time must have been mind bogglingly terrifying?

amacachi

cocoshovel wrote: »

Wait, why would anybody look negitively at anybody who suffers from it? People really are gigantic díckheads.

You might be surprised by a lot of stuff. Remember seeing a programme on BBC a few years ago about the difficulties disabled people have and a few went around with hidden cameras. Couldn't believe that people abused someone they didn't know because they were in a wheelchair or used a walking frame and the like.

token101

elviscostello wrote: »

I wholeheartedly agree with you, but shame that the AHness was deleted from it.

There are ads running on radio about epilepsy at the moment, which go something like "I work in the Army, I drive a tank, I enjoy travelling with my work, I enjoy working with firearms, oh, and I have epilepsy". Suggesting that a sufferer can lead a healthy, active life etc.

I'm sure the line "I have epilepsy, AND a sense of humour" wouldn't be out of place in one of those ads.




*I made up the army script, as couldn't remember what the actual ad says.

I was thinking that the Army bit might have been a stretch. I'm not too sure driving a tank would be the best idea if you're prone to fits. Not that I feel people with epilepsy don't have a place in the army, or any other service, just maybe not driving the tank

RussellTuring

elviscostello wrote: »

Do you get an idea of when one is going to come on? The first time must have been mind bogglingly terrifying?

I usually get a warning beforehand, which is actually one of the partial seizures I mentioned. Some people only get one or the other but I'm fortunate enough to get two for the price of one. I think I prefer this as the alternative is suddenly collapsing. At least if I have a warning (or "aura") I may have some time to get to relative safety or shout for help.

The first time I was asleep in bed so I didn't know anything about it until a few hours later when my personality started to return. I was surprised to say the least, but not as much as my friend who was sleeping beside me in bed when it happened. It didn't help that we'd been watching The Walking Dead earlier that night.

Bipolar Joe

fatherted1969 wrote: »

I worked in a boning hall in a meat plant as a boner for many years. I remember a boner taking a seizure while working one morning. His boning table was across on the other side of the hall and there was a conveyer belt separating us anyway he went into seizure and d lads over on his side went to his aid. We were working on steer hindquarters at the time big massive sides of beef and one of the lads boned out a rib bone about 24 inch's in length and prob 2 inch's wide. It was sawed at one end and the edge's were jagged where it wasn't a clean cut with the saw, he tries to stick the bone in the poor chaps mouth cos he said he'd swallow his toungue, never forgot it

This post had me in stitches for the innuendo.

seamus

token101 wrote: »

I was thinking that the Army bit might have been a stretch. I'm not too sure driving a tank would be the best idea if you're prone to fits. Not that I feel people with epilepsy don't have a place in the army, or any other service, just maybe not driving the tank

As mentioned earlier though, there are various ways of keeping it under control and someone who has been without a seizure for two years can apply for a driving licence. However, they would still be considered to be an "epilespy sufferer". So I see no real problem with the idea that he drives the tank and has epilepsy.

Most sufferers wouldn't even consider the idea of getting behind the wheel of something if they felt that there was the chance of them suffering a seizure. If not only for the safety of others, they would be putting themselves at serious risk.

I think in everyday terms "Mental illness" is used to describe disorders which impair a person's ability to think or which have a profound effect on their mood or mental state. A neurological disorder is one which typically affects someone's physical state, without affecting their brain function or mood. So parkinson's, epilespy and MND would be neurological, but depression or alzheimer's would be mental illnesses.

old hippy

Bipolar Joe wrote: »

This post had me in stitches for the innuendo.

I know but we shouldn't laugh at people with dyslexia.

Irish Guitarist

Neil Young is epileptic and has directed films under the alias Bernard Shakey. That's the most interesting fact I know about epilepsy.

Storminateacup

I seen a girl fall down the stairs in supermacs one sat night. She was wearing ridiculously high shoes and slipped but she banged her head on one of the steps and had a seizure. Her boyfriend knew what was happening and tried to move her onto flat ground and the security in supermacs wouldn't let him move her. So he's sitting behind her trying to keep her head supported so she wouldn't keep whacking it on the steps during the seizures, which were coming one after the other... The ambulance came and supermacs gave the people who were with the girl (but didn't go in the ambulance) a free pizza.

Was pretty scary to see tbh

Maple

My sister has refractory epilepsy, in that her epilepsy cannot be controlled by medication.

At her worst, she had ten to twenty absent seizures a day with two to three tonic clonic seizures a week. She was placed on the list for brain surgery and categorised as an urgent case. Her neurologist advised that if she went into a seizure we were to administer the epistatus and if she didn't come out of the seizure we were under orders to get her to hospital immediately.

In the beginning her epilepsy was completely mismanaged by the doctors in tallaght hospital. They just increased her dosage rather than investigating possible combinations of medication. The side affects of this included drooling, twitching, memory loss, hallucinations amongst others.

Thankfully we were able to switch care providers and her now doctor is fantastic. Her condition has become much more stable and she has recently been removed from the urgent list for brain surgery.

On a day to day level, her freedom is curtailed. She has to be careful to rest a lot, should not be left alone for prolonged periods of time, should not drink alcohol, can't drive, she wants to go travelling yet is restricted in this aspect until her condition stabilises some more. When my niece was a baby she was not allowed hold her for fear that she could take a seizure and drop her.

She had to drop out of college because she was physically incapable of completing the course. She missed too much time due to being ill which stressed her out which in turn aggravated her epilepsy. She had to give up her part time job and also move home due to her condition.

She did go on to do FAS courses and gain qualifications that way yet experienced serious discrimination when it came to placements, In that companies were reluctant to have her onsite due to liability issues.

From my own personal experience with brainwave, I do not rate them at all. They do valuable work in raising awareness of epilepsy but I found them hugely lacking when it came to providing day to day advice to those living with the condition.

It is a horrible scourge of a condition, I feel so helpless watching my sister in a seizure and the ignorance she can face from people enrages me.

Stark

fluorescence wrote: »

Myth - It's contagious.

FALSE. It's not contagious. You cannot "catch" epilepsy

Wow, you learn something new every day.

Nothingbetter2d

i once save a woman in galway who was having a seizure and was choking on her tongue... i used a spoon to pull her tongue forward and then rolled her over into the recovery position with my jacket under her head. then called an ambulance... all while 2 gormless dumbfounded guards stood there scratching their heads.

thankfully my boss at the time who was also an epileptic and had trained all of us in the office how to deal with it in the event he had a seizure.

old hippy

Nothingbetter2d wrote: »

i once save a woman in galway who was having a seizure and was choking on her tongue... i used a spoon to pull her tongue forward and then rolled her over into the recovery position with my jacket under her head. then called an ambulance... all while 2 gormless dumbfounded guards stood there scratching their heads.

thankfully my boss at the time who was also an epileptic and had trained all of us in the office how to deal with it in the event he had a seizure.

Your boss trained you to use a spoon on this woman? Really?

■One should NOT put anything in a person's mouth during seizure. The common impulse for many is to place a spoon inside the mouth to prevent swallowing of the tongue. There is no way one can swallow his tongue. Placing a spoon or any object inside the person's mouth may block his breathing and may worsen the seizure.

from

http://www.epilepsy.com/discussion/986160

Stark

Nothingbetter2d wrote: »

all while 2 gormless dumbfounded guards stood there scratching their heads.

Probably wondering what you were thinking using a spoon.

Nothingbetter2d

old hippy wrote: »

Your boss trained you to use a spoon on this woman? Really?

it worked... using the handle part of the table spoon i whipped her tongue forward. then rolled her into the recovery position to stop her swallowing it again.

Stark

The tongue would have fallen forward simply by rolling her into the recovery position. You risk injuring someone by trying to force the tongue forward.

vard

My cousin died in Tara Street dart station coming home from work due to an epileptic fit.

Sindri

Stark wrote: »

The tongue would have fallen forward simply by rolling her into the recovery position. You risk injuring someone by trying to force the tongue forward.

You seem like an expert on the dynamics of tongues of incapacitated women.

old hippy

Nothingbetter2d wrote: »

it worked... using the handle part of the table spoon i whipped her tongue forward. then rolled her into the recovery position to stop her swallowing it again.

Well, you were very lucky. You could have caused injury or worse. This is about tackling the myths about epilepsy - spoon in mouth being a common one.

Stark

Sindri wrote: »

You seem like an expert on the dynamics of tongues of incapacitated women.

It's something they teach everyone who does basic first aid training.

seamus

old hippy wrote: »

Well, you were very lucky. You could have caused injury or worse. This is about tackling the myths about epilepsy - spoon in mouth being a common one.

Never heard of the spoon in the mouth one, though I have heard the advice to jam a piece of cloth or solid stick between the teeth (not into the mouth) of someone having a violent fit in order to prevent them from biting their tongue or damaging their teeth.

Sounds a little more logical, but probably utterly unnecessary and only more likely to result in injury to the person or their "rescuer".

Conor Bourke

Sindri wrote: »

You seem like an expert on the dynamics of tongues of incapacitated women.

Dunno what Stark's qualifications are, but I'm a nurse and EMT, and I say he's right, so no need for the sarcasm.

seamus wrote: »

Never heard of the spoon in the mouth one, though I have heard the advice to jam a piece of cloth or solid stick between the teeth (not into the mouth) of someone having a violent fit in order to prevent them from biting their tongue or damaging their teeth.

Sounds a little more logical, but probably utterly unnecessary and only more likely to result in injury to the person or their "rescuer".

Correct. Don't ever put ANYTHING into the mouth of a person mid-seizure.

Conor Bourke

https://www.youtube.com/watch?v=dv3agW-DZ5I

There are numerous things that cause seizures- lack of sleep, flashing lights, high/low blood sugars, alcohol, etc etc.. and not all triggers are the same for all sufferers.

Regardless of what causes the seizure, the basic first aid remains the same. If you come across someone seizing and you are pretty sure it's their first ever time to do so, call an ambulance and then carry out the first aid steps I mentioned in my previous post. If the person has a history of seizures, then just create a safe area for them and time the seizure. If it goes on for longer than 5 minutes or they go straight into another seizure without coming round to themselves then call an ambulance.

If you don't know the person who's having the seizures, once they've stopped convulsing, check if they are wearing a medi-alert chain/bracelet.

Medi-alerts are pendants which provide brief details of any illness/allergy the person suffers from. Diabetes and epilepsy are probably the most common.

If you ever find yourself in the unfortunate position of coming across a person who's unresponsive, always check the neck/wrists to see if they're wearing one of these as it can give you an idea as to what might have happened (Oh and call for help 'n stuff too, obvs )

Fluorescence

Alaskimo-cake wrote: »

Dunno what Stark's qualifications are, but I'm a nurse and EMT, and I say he's right, so no need for the sarcasm.



Correct. Don't ever put ANYTHING into the mouth of a person mid-seizure.

I think I'll edit this into the first post as it's cropped up quite a few times in this thread and is a particularly dangerous myth as it could seriously injure someone :eek:

fatherted1969

It wasn't too long ago that people that developed epilepsy were thrown into institutions

Jelly2

This is a really interesting thread; thanks for starting it, and thanks to those who are sharing their knowledge and experience.
When I was in America, I met someone with epilepsy who had a 'care dog', who anticipated when his owner was about to have a fit and alerted him and those with him accordingly. I remember that one of the characters in a Jodi Picault novel had one too. Are these dogs used in Ireland at all?

gamgsam

A girl I used to work with suffered from grand mal epilepsy. We knew nothing about this as it hadn't affected her in years. One day she took a fit, only other person there had no idea how to help. My boss freaked out and tried to fire her the day after when he heard. Myself and two of the other girls told him we'd be leaving right then if he did.

Some people eh, didn't even check how she was. She got a better job shortly after anyway and ****ed him over in doing so:)

thesimpsons

elefant wrote: »

I've don't think I know anyone with epilepsy, but I certainly didn't believe any of those misconceptions.
People really think epilepsy is contagious?

you might be surprised. my OH has epilepsy, has it years but totally controlled now. most people OH works with don't know has it but HR and the staff nurse do, and wears a medi alert necklace. back driving 2 yrs after last seizure, no restrictions on licence, no insurance loading, etc. think the new ad on the radio are great idea - I'm often asked in very hussed tones, "and how is xx now ...". its as if they are afraid to even mention the word `epilespy' out loud

seanybiker

One of the lads I know was delighted with himself because he didn't have aa seizure in whatever amount of time it takes for him to be able to get a driving license. He had a seizure/fit one night and his mates rang an ambulance. When he came to he nearly killed them for calling the ambulance because he would have lost his license. Bold boy.
I never knew about them myths in the op. Some odd people about