Anybody suffer from epilepsy or know anyone who does? Just wondering like...
Aye I do, anything u wanna know?
I know a couple of people who have it but they are on good medication to keep it at bay
Brother in law and a friend of mine suffer from it. The friend more so. It can be tough to get the right medicine in the right doses to sort it out but once you do it can be almost 100% eliminated.
I have it, twas a bastid for about five years but the meds took care of it, it can be controlled but it is a tough affliction.
One of my best mates has it.
To be fair he manages it well and hasn't fitted in a few years. He fitted a lot more in the early twenties and used to lose the license for a year at a time for it which was painful for it.
I guess there are differing severities of it but he seems to mange i well enough. I don't think you're well advised doing things that get you out of your comfort zone too much - e.g. you need to make sure and get good sleeps, you can drink but don't drink too much etc etc. - but he keeps himself controlled and hasn't fitted in about 4 years. He used to do night shifts as a doctor too but I guess h made up for the sleep.
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As stew said he'll be on meds for life too.
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thats as funny as a kick in the bollocks
Quote from: Lady GAA GAA on April 01, 2010, 12:37:41 AM
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Your a twat
I have to admit, I did laugh a little there although it was a highly irresponsible post. :o
Tut tut Gaa Gaa (I laughed like f**k though to be honest...)
Quote from: haranguerer on April 01, 2010, 11:11:28 AM
Tut tut Gaa Gaa (I laughed like f**k though to be honest...)
Me too
I laughed....although, tbh, I might be a little bit twisted! :-\
Funniest post in the thread is definitely master yodas.....complaining about the pics then reposting them......smart
Thats some rave the kids are at! Mephedrones fault I'd reckon.... :P
Believe it or not animals can suufer fromit too.
My dog taks the odd fit from it, he doesn't know where he is when he takes the fit then sleeps for a day or two, vet has to give medication for it
Quote from: Banana Man on April 01, 2010, 01:44:04 PM
Believe it or not animals can suufer fromit too.
My dog taks the odd fit from it, he doesn't know where he is when he takes the fit then sleeps for a day or two, vet has to give medication for it
My grandparents' dog had it. Had fits on the road all the time and people kept calling into their house to tell them someone had run over the dog. Would rip its tongue to shite if you didn't get to it quickly enough. Dead now.
Quote from: Lady GAA GAA on April 01, 2010, 01:13:09 PM
Funniest post in the thread is definitely master yodas.....complaining about the pics then reposting them......smart
Yea, I was asking my arse whether or not it was bothered enough for me to post complaining about your post and then I saw that and laughed.
Hilarious Lady GAGA! :) I have it myself. Just wondered if anyone else on here had it or not. I'll be on meds for life though. And it only happens at night...thankfully.
Quote from: Farrandeelin on April 01, 2010, 05:40:07 PM
Hilarious Lady GAGA! :) I have it myself. Just wondered if anyone else on here had it or not. I'll be on meds for life though. And it only happens at night...thankfully.
Yep. I sure do know someone alright...me.
I got hit with five mighty belts of it in a 9 month period but I've been grand for almost 3 years now. I am talking about status epilepticus here; those seizures can last from 4 to 5 hours at a time and are invariably fatal without rapid medical intervention.
But as Fighting Fitzgerald of Turlough House fame once said, "The man born to hang need never fear water!"
There's very little to be gained by getting excited about it. It's just a fact of life and I am happy to be still around.
By the way you write, it seems it has only struck you recently and you appear to suffer from the 'petit mal' form- as it was used to be called.
They can be more of a pain in the arse than a danger to life but you do need to be aware of the danger at all times. For one thing, you probably know that you are not legally insured to drive until a period of 12 months passes since your last attack. If you haven't done so already, get in touch with the Irish Epilepsy Association and you'll get some help and resources there; doctors don't always know best or so my own fella tells me. Nocturnal sufferers can order a special pillow through the IEA that my doc never heard of. I'm told they cut down on the risk of suffocating in your sleep.
I know that taking meds can be a pain but you get used to it and get on with life. Once one is found that agrees with you, stay with it and don't get careless or complacent- I'm talking from experience here!
You are most welcome to PM me at any time if you feel I may be of help; by now, I could probably write as much sh1te about epilepsy as I do about Mayo football.
My eldest son has had epilepsy for nine years and, although, he's on a large dose of Epilum daily, he still has occasional grand mal seizures. They seem to occur at periods of high stress in conjuction with lack of sleep. He used to sleep in a loft conversion in our house and fell through the hatch into another room where his younger was stood. He's also had one in the bath!! Seizures are a horrible thing to witness for anyone - the patient isn't normally aware and sleeps heavily afterwards.
Quote from: carnaross on April 01, 2010, 08:49:54 PM
My eldest son has had epilepsy for nine years and, although, he's on a large dose of Epilum daily, he still has occasional grand mal seizures. They seem to occur at periods of high stress in conjuction with lack of sleep. He used to sleep in a loft conversion in our house and fell through the hatch into another room where his younger was stood. He's also had one in the bath!! Seizures are a horrible thing to witness for anyone - the patient isn't normally aware and sleeps heavily afterwards.
Fook me that's scary stuff. Never thought about it before but I actually don't know anyone who has epilepsy or even know of someone who has it. How common is it anyway?
Despite myself falling into a heavy sleep in bed at night, I always remember the bloody things the next day. I have those pillows Lar. One night I had two seizures, (and they knocked the stuffing out of me) this was before I was diagnosed in Oct 2008 and thank God I've only had 4/5 since. Only one since my medication was regulated properly and that was because I didn't take it before I went out. But by Jaysus I've taken it every morning and night at regular intervals since.
My wee brother had it for years as a child growing up, was scary watching him fit and just us sort of contain him. his medication helped but he struggled in school because of it. Fortunately he has been fit free for many years has been driving and has a trade behind him.
takes me to a story of playing with a lad with epilepsy, he played every game and fitted each time. we were kids trying to get on the reserve team and we just waited on him fitting and we got on. Once on the Falls Park while two games played side by side he fitted, before we knew it he was catching ball and running down the other pitch wit 30 confused players wondering what da fook was gong on
Quote from: carnaross on April 01, 2010, 08:49:54 PM
My eldest son has had epilepsy for nine years and, although, he's on a large dose of Epilum daily, he still has occasional grand mal seizures. They seem to occur at periods of high stress in conjuction with lack of sleep. He used to sleep in a loft conversion in our house and fell through the hatch into another room where his younger was stood. He's also had one in the bath!! Seizures are a horrible thing to witness for anyone - the patient isn't normally aware and sleeps heavily afterwards.
I have heard of a few drownings in a bathtub. Because of their size, children are more at risk here than adults; generally, they also don't have the presence of mind not to panic if they get any advance warning or aura that something is going wrong.
I'm told that epilepsy won't kill you but injuries sustained during a seizure certainly can. I am surprised that your son is having occasional seizures and is still on Epilum after nine years.
Unfortunately, there is no standard way of treating epilepsy; everyone's brain is different and it's a matter of hoping for the best until something is found to be effective. With seizures of any sort but the gran mal ones especially, it's a race against time to find both an effective medication and a correct dosage of it before something serious happens.
The conventional practice is to up the dosage after each attack until a sufficient level of defence is found. Because of undesirable side effects and as one is talking about a lifelong need for this medicine, the lowest possible level is recommended.
That's why I am surprised by your lad's medication. If a safe level of Epilum hasn't been found in nine years, I would have thought he would have been given another sort of defence long ago. The changeover can be deadly dangerous and maybe that's the reason your lad is being kept on Epilum. I was started off on 300mg of Epanutin and had a fairly minor seizure after some weeks. The consultant felt that it wasn't going to work for me and decided to put me on Lamictal instead. I was told that the brain doesn't like changes of any sort where drugs are concerned and the changeover would have to be a very gradual process- upping one and lowering the other every fortnight or so until the changeover was complete. That's where I had the serious attacks. I had one belt after that and the dosage of Lamictal was upped by 50 mg and everything seems to be stable since then.
I was told of the risks and given the choice so I've been lucky I guess. The stats say that 3 in every 100 will experience epilepsy at some stage of their lives. The condition may be there from birth or develop at an early age or it can be brought about by brain injury or a latent weakness in the brain arteries. I've been told that GAA players and boxers are in the high risk category.
The last thing any onlooker should do is to ram something into a victim's mouth- just keep away and try to keep hard or jagged objects out of reach. I'm told it is virtually impossible to swallow one's tongue but a stick or similar can cause the victim to smash his or her teeth and that brings the danger of choking.
Quote from: Celt_Man on April 01, 2010, 08:56:36 PM
Quote from: carnaross on April 01, 2010, 08:49:54 PM
My eldest son has had epilepsy for nine years and, although, he's on a large dose of Epilum daily, he still has occasional grand mal seizures. They seem to occur at periods of high stress in conjuction with lack of sleep. He used to sleep in a loft conversion in our house and fell through the hatch into another room where his younger was stood. He's also had one in the bath!! Seizures are a horrible thing to witness for anyone - the patient isn't normally aware and sleeps heavily afterwards.
Fook me that's scary stuff. Never thought about it before but I actually don't know anyone who has epilepsy or even know of someone who has it. How common is it anyway?
Think there's around 30000-40000 people with it in Ireland.
Quote from: Lady GAA GAA on April 01, 2010, 12:37:41 AM
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:D :D :D :D
Thats actually funny
Yea it is actually hilarious as I stated myself. :-*
Lar, just wondering what other problems that could be detrimental to one with epilepsy. I have another condition that VERY FEW people (on here) know about so I'm not prepared to go public about it... yet
Quote from: Farrandeelin on April 02, 2010, 05:58:12 PM
I have another condition that VERY FEW people (on here) know about so I'm not prepared to go public about it... yet
Will there be a press conference?
Quote from: Farrandeelin on April 02, 2010, 05:58:12 PM
I have another condition that VERY FEW people (on here) know about so I'm not prepared to go public about it... yet
We all know... You're a Mayo man!
Quote from: AFS on April 02, 2010, 06:12:47 PM
Quote from: Farrandeelin on April 02, 2010, 05:58:12 PM
I have another condition that VERY FEW people (on here) know about so I'm not prepared to go public about it... yet
Will there be a press conference?
:D No, I rather tell people in private, behind closed doors etc!
Very funny ziggy btw!
Lady GAA GAA twas a bit silly (funny) but not exactly the best place to do it!
Master Yoda why did you repost his flash photos, a person might have scrolled down quick to avoid and then hit by your post.
Quote from: Farrandeelin on April 02, 2010, 05:58:12 PM
Yea it is actually hilarious as I stated myself. :-*
Lar, just wondering what other problems that could be detrimental to one with epilepsy. I have another condition that VERY FEW people (on here) know about so I'm not prepared to go public about it... yet
Cross dressing!
Daniel O'Donnell fan!
Grand Master of the KKK!
A typing spacemonkey!
Really from Roscommon!
Quote from: Farrandeelin on April 02, 2010, 05:58:12 PM
Yea it is actually hilarious as I stated myself. :-*
Lar, just wondering what other problems that could be detrimental to one with epilepsy. I have another condition that VERY FEW people (on here) know about so I'm not prepared to go public about it... yet
That's okay; there can be a load of related problems that can arise as millions of brain cells can get fried in a prolonged attack. After a max of 5 minutes, cells start to die and they ain't renewable. Anything I am saying here is coming from those who have treated me so I am not doing any solo runs with what I am saying.
Don't let the slagging put you off; everyone who has posted on this thread seems a decent enough skin to me. I think it's just that most people tend to make light of anything they are not comfortable with. I know that I am very much a smart ass myself when I mention my own problems in any way. The reality is that I am scared but I try to make it all seem somehow less threatening by cracking jokes. It's a bit like whistling past the graveyard as the old saying puts it. I still enjoy a couple of scoops almost every night and don't lose any sleep over it either.
It seems to me that you are finding it hard to come to terms with this condition; a case of "why me" maybe.
Like I said, feel free to PM me at any time if you feel the need to. I can't work miracles; after all, I haven't succeeded in helping Tubberman get rid of what ails him yet but at least he seems to have quietened down a bit lately. (I'm beginning to miss him!) However, what I don't know might just be a phone call away. I am in regular contact with some of the neuros at Beaumont Hospital.
I don't see any reason for you to go public about anything connected with anything-unless you feel comfortable about doing so
I have no problem doing this if I feel my experiences can be of benefit to anyone else.
Thankfully my other condition has nothing to do with the epilepsy at all, but sometimes I do often get the 'Why me? syndrome' as you've stated. It's bad enough been a Mayo fan! :D
Quote from: muppet on April 01, 2010, 04:48:33 PM
Quote from: Lady GAA GAA on April 01, 2010, 01:13:09 PM
Funniest post in the thread is definitely master yodas.....complaining about the pics then reposting them......smart
Yea, I was asking my arse whether or not it was bothered enough for me to post complaining about your post and then I saw that and laughed.
In fairness Muppet..I'd say you're more prone to talking out of it than talking to it :P :D
Quote from: mayogodhelpus@gmail.com on April 02, 2010, 11:37:10 PM
Lady GAA GAA twas a bit silly (funny) but not exactly the best place to do it!
Master Yoda why did you repost his flash photos, a person might have scrolled down quick to avoid and then hit by your post.
It was the only place to do it. T'wouldnt really have worked on any other thread...
Quote from: haranguerer on April 04, 2010, 07:22:21 PM
Quote from: mayogodhelpus@gmail.com on April 02, 2010, 11:37:10 PM
Lady GAA GAA twas a bit silly (funny) but not exactly the best place to do it!
Master Yoda why did you repost his flash photos, a person might have scrolled down quick to avoid and then hit by your post.
It was the only place to do it. T'wouldnt really have worked on any other thread...
I found Master Yoda's post funny too, he complained about the post but he quoted the picture again. :)
Couldn't be arsed in posting a new topic, but do people really become seizure free? My longest time was 5 months free. I usually get a seizure every two months.
Was at the neurologist all evening (in a waiting room for the most part) and they're about to change my meds. I'm a bit anxious about this as I'd nearly prefer to be stuck with the devil I know rather than changing, although hopefully it will cut out all seizures.
Not sure why I posted this, but I feel that someone on here who has epilepsy may have a better understanding of the condition than anyone else, if ye know what I mean.
A good friend of mine has been seizure free for tennish years now. He wasn't epileptic until 18 and up untill 22 ish fitted a couple of times a year.
He is very controlled though and in terms of sleep and things like alcohol levels never goes outside his comfort zone. I don't pretend to be an expert on the subject but in the early 20s being seizure free seemed like an impossibility and is now a reality. (Mid 30s)
Getting the right cocktail of meds is trial and error. The wee lad has a breakthrough seizure very rarely these days so it is very manageable for us although we never leave the house without Midazolam. I would say you'll get there but it will take a bit of tinkering by the docs.
Quote from: Farrandeelin on February 17, 2015, 08:41:14 PM
Couldn't be arsed in posting a new topic, but do people really become seizure free? My longest time was 5 months free. I usually get a seizure every two months.
Was at the neurologist all evening (in a waiting room for the most part) and they're about to change my meds. I'm a bit anxious about this as I'd nearly prefer to be stuck with the devil I know rather than changing, although hopefully it will cut out all seizures.
Not sure why I posted this, but I feel that someone on here who has epilepsy may have a better understanding of the condition than anyone else, if ye know what I mean.
Sure Farr, I know a few who were told they no longer needed to take anti-seizure medication.
I've been incident free for more than 7 years now but I'm not taking any chances and my GP agrees.
Generally, if you happen to find a medication that suits you, neurologists are very slow to change it.
I'm on Lamactil and I'm told it should provide protection for life but I know some of the older ones , while they may be very effective to begin with, may lose their effectiveness as time passes and I'd imagine that this is what is happening in your case.
I wouldn't let it worry me too much.
I'm seizure free since they changed the meds.* However, I find lately (past month) that I'm becoming more forgetful. My wife-to-be reckons I've been this way all the time, in particular with regards day to day things. I'm also becoming forgetful about work related things. Lots of people reckon it could be a side effect of the meds. Anybody else notice this in people they know with epilepsy?
Seem to be talking to myself here. Anyway here goes. Nothing to lose. A couple of days after I wrote that post I had a seizure at school just after lunch ended. Luckily I was in the staffroom at the time. It prevented me from driving for a year, which at the time was hard to take. The months were trundling on. I had one over the summer on my last night on honeymoon. I suppose what triggered that one was the comedown from the previous few weeks. Then a fortnight or 3 weeks ago, I had a bad one. I was at school in the morning so no child was in the room with me. Haven't a clue how or what triggered it. I'm just worried sick that I won't be able to drive again. I am sick to the pit of my stomach that it might happen in school in front of a child. I don't know what to do about these latest ones. But I'm not happy. Rant over.
Understand what you are saying mate, I've been seizure free for going on 13 years and I'm so reliant on driving now I don't know what I would do if that was to change and I took a seizure.
All I can say is I got very lucky that my medication seemed to control the seizures (epilum 500) but I know plenty who have never found the right stuff.
Hope it all works out for you mate.
Quote from: Farrandeelin on October 10, 2016, 09:25:14 AM
Seem to be talking to myself here. Anyway here goes. Nothing to lose. A couple of days after I wrote that post I had a seizure at school just after lunch ended. Luckily I was in the staffroom at the time. It prevented me from driving for a year, which at the time was hard to take. The months were trundling on. I had one over the summer on my last night on honeymoon. I suppose what triggered that one was the comedown from the previous few weeks. Then a fortnight or 3 weeks ago, I had a bad one. I was at school in the morning so no child was in the room with me. Haven't a clue how or what triggered it. I'm just worried sick that I won't be able to drive again. I am sick to the pit of my stomach that it might happen in school in front of a child. I don't know what to do about these latest ones. But I'm not happy. Rant over.
Do the docs not modify your medication if you get breakthrough seizures? There are plenty of options and combinations out there. As Longshanks says you may need to keep going to find the right stuff. My wee lad is on a combination of Epilim (slow release granules) and Lamictal and seems to do the trick.
Quote from: Tony Baloney on October 10, 2016, 02:08:00 PM
Quote from: Farrandeelin on October 10, 2016, 09:25:14 AM
Seem to be talking to myself here. Anyway here goes. Nothing to lose. A couple of days after I wrote that post I had a seizure at school just after lunch ended. Luckily I was in the staffroom at the time. It prevented me from driving for a year, which at the time was hard to take. The months were trundling on. I had one over the summer on my last night on honeymoon. I suppose what triggered that one was the comedown from the previous few weeks. Then a fortnight or 3 weeks ago, I had a bad one. I was at school in the morning so no child was in the room with me. Haven't a clue how or what triggered it. I'm just worried sick that I won't be able to drive again. I am sick to the pit of my stomach that it might happen in school in front of a child. I don't know what to do about these latest ones. But I'm not happy. Rant over.
Do the docs not modify your medication if you get breakthrough seizures? There are plenty of options and combinations out there. As Longshanks says you may need to keep going to find the right stuff. My wee lad is on a combination of Epilim (slow release granules) and Lamictal and seems to do the trick.
I have an appointment with the neurologist on Thurs to see if I will be upped or changed. Just hoping I can get it more stable. Or back to night only even.