Living life with an illness

[Bethan85x]

I have suffered with epilepsy for 20 years mostly partial seizures and about 4 grand mals in total but last weekend i suffered from 4 grand mals in 2 days and i just dont think there is much awareness out there

[Lj08]

I am so glad someone else agrees with me, if you ask people do you know what epilepsy is some say no and some say oh it’s when you fall to the floor isn’t it, well yes but there is more another 48 kinds!!!

I had to listen to my dad last night telling me how he had given money to cancer research don’t get me wrong it is a good cause and my mum died of cancer , but when I said you never give money to epilepsy he turned round and said I don’t know anyone with epilepsy!!!’ I looked at him and laughed I have only been having them since I was 11 I’m now 47 😀.

Problem is epilepsy is invisible and you look great as you do most of the time until that seizure raises it’s ugly head and turns your face grey and makes you look like a drug addict ( which I have been called)

Sorry to go on

[Bethan85x in reply to Lj08]

Snap!i had a partial seizure on a bus and another passanger turned around and said bloody druggie lucky my friend was with me she flipped on him and said actually she has epilepsy and shes havin a seizure he had his face 2 the floor 4 the rest of the journey!i know exactly how u feel people r forever raising money 4 cancer and understand its a big illness but just think epilepsy isn't as well known as it should be,my husband has done a few marathons 4 epilepsy research and think its a good charity as its helping people with unexplained epilepsy especially when im having mri's coming back and everything is normal its so frustrating xxx

[Lj08]

How is your memory ?

Mine is shocking my little has to remind to do things, it’s just the two of us oh and google I wouldn’t be able to help without that 😂

[Bethan85x]

Yep mine is terrible!especially with people i recognise their faces but cant remember how i know um!xx

[Scotsguy41]

Totally agree. There is very little awareness. My first grand mal at thirteen. Got a couple of scans etc over a few months. Ok you have epilepsy take these pills and there’s the door. Bye. Luckily meds kept it controlled for years till I took a massive grand mal mid April. Feel like I’m back to the start same place as sixteen. Lost licence. Lost job as I need to travel for it. I’ve never had a mri or ct scan on my brain ever but after last grand mal I think I’ll demand one as it felt like left side of my brain was going to explode out my skull. Neurology next month so think it might be a good idea to get a scan Glad I read your post as I didn’t know they scanned the brain in relation to epilepsy.

[Bethan85x in reply to Scotsguy41]

I know really hard work to live with especially as i have children and they have to c what i go through with it.where do u live?where do u go 4 ur epilepsy treatment?x

[Scotsguy41 in reply to Bethan85x]

Yeah it is really hard work. I hate having it but It is what it is I suppose. I live just outside Glasgow in Scotland. Used to go to the southern general old hospital in Glasgow but changed to one nearer me as my neurologist retired so have a new one that I see beginning of June. I’m going to insist on mri or ct scan as I’ve never had one esp after last months seizure.

[Bethan85x]

I would aswell!ive had a few scans but only 1 showed activity in my temple but cant actually pin point where it is to operate mine is in cardiff x

[Scotsguy41 in reply to Bethan85x]

Thanks. I think it would be a good idea to get a scan and going to ask to have one done. Only ever had the ones where the electrode things are attached to the head to monitor brain activity etc. That’s unfortunate they can’t pinpoint where it is. Is operating not really risky though