first time seizures

[colinthecaterpillars]

my son of 19 has just been diagnosed with epilepsy we are all very worried and the uncertainty of what will happen next, he has been given medication.
I don't know anyone irl who has this to talk to.
he has suffered no signs when it will come on it just happens
does anyone have any kind of advice or tips to help us out along the way

Hi, my 14 year old daughter has just been diagnosed with epilepsy. They just started one day around 11 months ago and it has been awful. Apparently it can take a while to find the right medication but when you do it can make a huge difference, I find it difficult to research epilepsy as I find it can be very negative.

Epilepsy is fucking shit. I didn't realise how awful it was til I was forced into its terrible world. to you both

What medication is he on, does it seem to be working ?
Has your son had an EEG ?
Paradyning- must be so scary for you, it’s an awful condition, stay strong.

Sorry to hear about your ds colinthecaterpillars.
Our ds had first seizure at 18, however he has Down Syndrome so in a way it has not impacted on his social life in the same way as it will your son, it is a right bastard.
I heard of a young girl who was going to university who had poorly controlled epilepsy and she asked her parents to film her having a seizure. She was then able to show her new friends so they would not freak out and would know what to do. What a brave girl!
Good luck to you all.

Has he been referred to an epilepsy nurse specialist? They usually meet people after their diagnosis to go through any questions and discuss lifestyle issues.

Could you read up on cannabis oil? It is incredible for seizures.

My ds is10 had his first tonic clonic seizure at end of December. I pushed for some testing (eeg) as after reading up he possibly had been having small seizures since 3 (eye rolls). He had his second seizure in April 3 & 4 a week later. He started on keppra after no 4. We have an epilepsy dr and an epilepsy nurse.

He's now had another 5 since then and medication has been increased a few times. He's had an mri which I was briefly told was ok but I haven't actually had full results.

I'm finding it really difficult to let him have a life but it's something we just have to get on with.

Hello again all thanks for the replies he had a mri last week and heard nothing back,he's been put on keppra and fingers crossed so far has been fine
He has had a few problems over days regarding his university which I thought would trigger a fit with the stress and upset but has been ok,we was dreading the sleep that night just in case.
University now know of this and are setting up a plan to minimise a lot of stress been reduced.

@shewolfmum that's the first thing that came in my head when I heard it had been legalised but I'm not to sure if he'd qualify for it,I think he'd need to be having a lot more.

I developed epilepsy 11 months ago at the ripe old age of 44. It turns your world upside down but once stable on medication it does get easier to manage emotionally.

CBD oil is worth a try. CBD brothers are very good. There are FB groups you can join for advice.

On my phone lock screen I have all my medical information plus a number to contact in the event someone finds me having a fit.