Anybody on here with Epilepsy?

Pauliedragon

Just curious as to how many (if any) people on here have Epilepsy and how if affects your life. If there is are ye aware we can apply for a free travel pass now.

LimerickGray

https://www.boards.ie/discussion/2058353915/anybody-on-here-with-epilepsy

me. I get myoclonic seizures. Multiple daily. Can’t drive. Can’t type.
I have bus pass as part of the Invalidity Pension

fritzelly

Haven't had an attack in 15 odd years now but used to be full on attacks - loss of consciousness, frothing and spasms. Ended up in hospital a few times as even if I didn't fully lose consciousness I had no control and would fall flat on my face and usually knock myself out. Would usually get the aura and try to get myself to a safe place to let it pass but sometimes the onset was immediate. First attack was in school when I was about 15/16 - thought I was dying!

Gremlinertia

https://www.boards.ie/discussion/comment/122276175#Comment_122276175

Did you grow out of it as I understand some people do or is there a long term medication you've taken to?. Amazing either way to be seizure free for that long..

fritzelly

https://www.boards.ie/discussion/comment/122276260#Comment_122276260

Just grew out of it I guess - still have, don't know what the name for it is, occasions where my eyes feel like they're darting back and forth really quickly and feel kinda zoned out but it lasts mere seconds (assuming its still related) but the grand mal has stopped thank god. Never took medication as when I was initially prescribed some after the first full seizure (ending up in hospital unconscious) I started having near constant seizures so stopped the medication (this is a long time ago so the medication is vastly superior now I assume)

Pauliedragon

I'm lucky enough haven't had a seizure in a few months. The medication though has completely messed up my memory I can't even remember 5 minutes ago sometimes or hold sentences together. I've asked to change to something else.

LimerickGray

https://www.boards.ie/discussion/comment/122277188#Comment_122277188

memory is huge bother for me too. I think of doing something and then forget what I was thinking.

Pauliedragon

https://www.boards.ie/discussion/comment/122277720#Comment_122277720

Same here. I was looking through the cupboard the other day looking for my shoes when I realised they were on me. It's tough too I'm job hunting at the moment and interviews are tough.

positron

Wife used to be epileptic.

When I met her, she had 15+ years of history of epilepsy, and she used to get a couple of full grand-mal seizures every two to three months, but six to eighteen partial seizures every single day - where she would have some minor involutory muscle spasms but mainly lost awareness / ability to respond for a few seconds. More than the epilepsy itself, the cocktail of medicines she was on was really full of horrible side effects - memory loss, appetite loss, hair loss, bad skin etc etc - it was generally a miserable time for both of us.

Finally though, we started charting her partial seizures, got a sense of what is making them more frequent (tiredness, missing sleep, stress etc etc) and took it to her doctor (who has been doing nothing but trying cocktail of drugs for over a decade). Doctor immediately referred her to specialist who focus on surgery, we then actually got a clear picture of the source of the seizures (a small void in the brain), and after couple of fMRIs and tests, she was deemed a good candidate for surgery which was done by the brilliant surgeons of Beaumont hospital. We did have some complications (infection etc) but epilepsy was gone. 100%. It's been some 16 years since and all is well.

Epilepsy is truly an awful condition to deal with. My best wishes to anyone dealing with it themselves or with their friends / family members.

Pauliedragon

https://www.boards.ie/discussion/comment/122278154#Comment_122278154

When I was first diagnosed (about 15 years ago) the neurologist said to meseizures are worse for the people who witness them. He's right in that I can't remember them but it's very scary for someone watching you just fall down lifeless.

tohaltuwi

I have MS, so not epilepsy. However I’ve had one observed seizure-type episode, witnessed by a highly experienced nurse. However I do remember the start of dropping down the very end of someone placing me in recovery position. It seems to have been propagated my sudden blood pressure drip and not epileptic in nature, although I hurt myself in umpteen bruises.

Prior to that I was on my own and recall a momentary smash to the ground (the noise is in my memory) and when I woke up and could not move again for maybe an hour, there was a wide splattered pattern of blood indicating seizure this activity.

But in my case, the trigger, in all likelihood, was autonomic low blood pressure.

positron

https://www.boards.ie/discussion/comment/122280877#Comment_122280877

I am not sure if I fully agree with your neurologist in this regard. It sure is very scary for someone witnessing a full on seizure no doubt, and the feeling of helplessness is even worse. But the impact of seizures on the person taking the seizure is - well, not fully appreciated even by professionals in the area, in my humble opinion.

Wife has told me stories of experiencing a seizure in the middle of the night, falling off her bed into the gap between the bed and the wall and getting stuck there and struggling to breath (after coming around from the episode) and fully believing that this is how she's going to die. Being mocked at school as a freak was a regular thing. Falls, cuts and bruises were juts part of life. But then, she once had a full on seizure at work - and they did not renew her contract after that (despite the discussion just the week before where they asked if she could stay on for another six months). Yep, that happens.

Unable to drive, risk of having children under the influence of epilepsy drugs, unable to be left alone to cook something really hot for the fear of dropping it due to a partial seizure… the list is endless. Not every epilepsy patient experiences all of these - but there are many who do. Hence my contention to that neurologist's opinion about seizures being harder on onlookers than the patient.

volchitsa

https://www.boards.ie/discussion/comment/122280877#Comment_122280877

I don’t have epilepsy but my father developed it after having had brain surgery for a tumour.

I really want to say what a horrible and unsympathetic thing that was for a doctor to say to you. I can’t get my head round why a doctor would say that - it makes it seem as though you nearly have to apologise for an illness that can have such a devastating effect on your life.

I won’t go back over the effects that @positron named - but all of that them chime with me. In my dad’s case, he’d hoped to be able to go back to driving after the surgery, and the first epilepsy seizure put an end to that: he was devastated by that loss of his independence more than anything else.

Please don’t listen to a doctor who tries to guilt you into worrying about the effect your illness has on other people - for people who care about you the terror is whether you are ok during the attack and the sorrow that you’re having to deal with another one.

For people who don’t care about you, if they witness an attack, hopefully they can learn to be aware of how fragile we are and how easily something can go wrong unexpectedly. But NEVER feel you have somehow inflicted something on others. That’s a shocking thing for the doctor to say and I’m so sorry you were told that.

Pauliedragon

@volchitsa @positron

I never thought of the docs comments like that. I'm sure he didn't mean any harm. Was in my 30s when I started seizures so I didn't have to put up with any pisstaking at school or anything like that.

volchitsa

https://www.boards.ie/discussion/comment/122282401#Comment_122282401

It's good that you were already confident enough for that not to be a problem, but imagine a teenager being told that at an age when most teens already don't feel confident about themselves in society, even when they aren't having to come to terms with such a diagnosis. I think it's terrible for a doctor to say that. I'm sure he meant no harm but that's not really much of an excuse. He's a professional.

Pauliedragon

https://www.boards.ie/discussion/comment/122282458#Comment_122282458

Very true. Maybe I just accepted it and didn't think much of it. I'm on the lower end of it too I can go 2 or 3 years without a seizure. The stories I hear about people living in fear daily what might happen is really heartbreaking. I mentioned earlier about the medication and memory. I'm 150mg twice a day and the doc says some people have to take up to 2000mg a day I couldn't get my head around how serious that must be.

positron

Some people end up taking combination of medicines to try and control it. Herself was on three for so many years - and the last one the doctor tried with - topiramate (brand name Topamax) was just ridiculous - fatigue was unreal, tingling in hands and feet, weight loss, her hair was falling off in clumps, and it really impaired her memory and word recall as well, so much so that we called it Dopomax.

LimerickGray

https://www.boards.ie/discussion/comment/122278116#Comment_122278116

my wife keeps fining things I put in wrong place. I put greaseproof page in freezer

it has funny moments. I once hit a woman with an orange in Tesco because my arm jerked severely. She was fine when I explained

cher nobyl

https://www.boards.ie/discussion/comment/122281344#Comment_122281344

I never knew there were consequences on the child if the mother was taking epilepsy medication?

Recently I was talking to someone who takes Benzodiazepine which I was shocked to hear was used to treat epilepsy

positron

It really depends on the medicines and dosage and a lot of other factors (that I don't know anything about, I must add).

https://www.nhs.uk/pregnancy/related-conditions/existing-health-conditions/epilepsy/

Risks from epilepsy medicines

Research has shown that there is an increased risk of your child not developing normally if you take some types of AED during pregnancy, including:

• sodium valproate
• valproic acid
• carbamazepine
• phenobarbital
• phenytoin
• topiramate

These medicines may cause problems such as spina bifida, cleft lip or heart abnormalities. They may also give your baby a higher chance of brain development problems, such as a delay in developing speech and language, and problems with memory and attention.

cher nobyl

https://www.boards.ie/discussion/comment/122530546#Comment_122530546

God, that is grim

Hotblack Desiato

There's going to be an enquiry into the use of sodium valproate here.

https://www.gov.ie/en/press-release/24113-minister-for-health-secures-government-approval-for-inquiry-into-historical-use-of-sodium-valproate-in-certain-groups-of-women/

Yet again it seems we persisted with treatments which were potentially damaging to women and children after other countries were abandoning those treatments. I have one family member with epilepsy who was taking this during her childbearing years and another one who wasn't.

LimerickGray

https://www.boards.ie/discussion/comment/122564174#Comment_122564174

there are issues about men being on some of those medications too passing autism to unborn babies. I sound like a conspiracy theorist saying that but look it up.

Hotblack Desiato

Right. "Look it up" as if there aren't millions of hits about autism on the internet which are complete lies.

LimerickGray

https://www.boards.ie/discussion/comment/122659690#Comment_122659690

https://www.epilepsy.ie/content/study-suggests-possible-increased-risk-children-fathers-treated-sodium-valproate-epilim

LimerickGray

https://www.boards.ie/discussion/comment/122680659#Comment_122680659

https://www.ema.europa.eu/en/news/potential-risk-neurodevelopmental-disorders-children-born-men-treated-valproate-medicines-prac-recommends-precautionary-measures

LimerickGray

https://www.ema.europa.eu/en/news/potential-risk-neurodevelopmental-disorders-children-born-men-treated-valproate-medicines-prac-recommends-precautionary-measures

Hhttps://www.ema.europa.eu/en/news/potential-risk-neurodevelopmental-disorders-children-born-men-treated-valproate-medicines-prac-recommends-precautionary-measures

LimerickGray

they recommend the neurologists talk to all males interested of having kids they there are risks with those drugs.

Hotblack Desiato

Thanks for those, cause for concern alright.