Epilepsy help

[Epilepsyquestion]

Hello, my son is 18 and after a seizure has been diagnosed with generalised epilepsy.

A few times he's woken in the night shivering or shaking quite violently, but fully aware and only for about 3 seconds. This usually happens once or twice and then he goes back to sleep without any further issue.

Last night it happened 5 times in a row and he was v scared in case it led to a seizure.

Anyone else have any experience of this?

I think these people might be able to help you, I'm sorry to hear he has epilepsy. I have it also, it's difficult to say for sure, he could be having a different kind of episode if awake. Is he seeing a neurologist or does he have specialist support? If not, then he needs to ask his GP asap for a referral. There is a helpline here to talk things through.
www.epilepsy.org.uk/

agree with crustycob; tell your neuro or epilepsy nurse - or gp if you have neither. is his diagnosis recent? what have you been advised to do if any unusual activity?
i also agree epilepsy helpline via the website crusty recommends is a good place for info and support.
good luck. i know how worrying it is.

Thank you both, he was diagnosed in December after a seizure totally out of the blue.

He has an appointment with the consultant in April so I phoned and we are trying to bring that forward a bit. He's on 75mgs of Lamictal a day.

It's worrying as I hate seeing him so scared. He's also missing quite a lot of school which is going to impact on his uni place. I know that's not important in the greater scheme of things but he's fretting over it.

is there a nurse you could ring for advice? or email the neuro? if not, make an appointment with GP and try to get some access to some expertise or bring the specialist appointment forward. when is the april appointment?
talk to the helpline tomorrow and try to see your gp. i'd say unusual activity needs pretty prompt attention.

are you comfortable dealing with his seizures and knowing when to administer emergency meds/call emergency services? i don't ask this to scare you but if you are prepared for 'the worst' ie a seizure, you'll feel happier that you have knowledge and a plan.
how is he feeling? does he have A levels this summer? You might want to talk to the school about extra support, what to do in the event of a seizure and generally let them know what's going on (eg if he's had a bad night and he's worried, they need to know and possibly give him extra time for homework - guessing here as our DCs are younger).

It's a lot for you both to get your heads around - in the longer term it might be worth talking to someone to help him/you adjust to having this condition in your lives.

That must be really upsetting for you both, and I can imagine how frightening it is.
It can take a while for meds to be sorted out. Good on you for trying to bring the appointment forward. In the meantime, the Epilepsy Helpline will give you good advice. They will advise about uni and stuff also. The Uni can be sorted in the longer term tell him. Plenty of people at Uni with epilepsy and doing ok.

Scary stuff I know, but the consultant will do their very best. It is quite possible to have it well controlled for the future. If he seems to be having a fair few of these shaking episodes one after another tonight then, as a Mum, I would ring 111 for advice. Always trust your Mum radar!.

All the very best to you both.
(and a wave to BTatemyhamster)

Sorry, cross post with BT
Yes from me to that great advice !

I'll call 111 if it happens again tonight, he's just tried to go to sleep but said his head has a weird throbbing pain. He did say he's scared to sleep in case something happens though.

The only seizure he's had was very early one morning, he woke up and had a seizure in bed. I wasn't with him.

The consultant said if anything happens again to just wait for it to pass and try to remove anything he could hurt himself on.

I've told him he's safe at home etc but it's horrid to see my big 6 foot lad being scared.

I'll call the helpline in the morning.

Thanks again x

Has he had an MRI scan yet? If the weird throbbing pain is still there ring 111 and talk things through with them.
It is a tough thing this being a Mum lark, if you are worried, ring.
Take care of yourself too!

Who diagnosed him with epilepsy after 1 seizure? Usually more than 1 seizure is required for a diagnosis. Please, please do push for an urgent MRI scan and don’t be dismissed as an anxious parent. Do it, if only for peace of mind.
My 18 year old son had his first seizure in August, gp referred but was told to go to A and E if he had another. He did have more but were initially thought to be stress related.
My sons story is probably an extremely rare one but there was a definite cause to the seizures he was experiencing and it was not stress. He is on the mend now fortunately. I will give more details but only if you ask.

He had an MRI and a CT scan and then an EEG (I think that's what's it called, with the brainwaves and lots of lights flashing)

The consultant said you usually need 2 seizures to diagnose epilepsy but as the EEG showed a reaction at 8HZ to photolight he felt it showed a positive diagnosis.

He said it was up to my DS if he wanted medication or to wait and see but felt it likely he would have another seizure. DS chose the meds.

Anyway, after another night of shakes we were told by 111 to go to A&E. He was checked out and the consultant came to see us. Luckily he was working next door.

He's realised his meds were wrong - was supposed to be 75mg lamical twice a day and not just at night, so that will be gradually changed. He also said the shakes are juvenile myclonic epliepsy and feels it would be good to take a mild dose of Clonazepam at night.

I'm not sure about this at all, I've read up on it and it sounds quite a serous drug. Also, DS is 18 and likes to go out with his mates once or twice a month. It says alcohol is dangerous with this. He doesn't drink much but likes to have a few sometimes.

He's slept most of today but blimey this is hard isn't it?

Thanks for all your replies x

Can, do you mind me asking what was causing the seizures?

Also forgot to say DS has had tonsillitis last week, which made him more susceptible to seizures apparently.

Well that is very, very reassuring that your sons MRI and CT scans were clear. So what I will tell you will not be a factor you need to worry about for your son.

Unfortunately my sons MRI scan was not clear and it showed he had a brain tumour. He has had surgery since and most of it has been successfully removed.

It took over 4 months until he was given a MRI scan. He had had ecg, eeg and sleep deprived eeg and they were all clear.

Because his account and my account of the seizures were different, which of course they will be (he doesn’t remember, just has a weird confused feeling afterwards) I don’t feel it was taken seriously.

The first time he actually saw a neurologist was 5 months after his first seizure and 2 weeks after his MRI scan. (He had at least 10 more seizures during this time.) And it was to give us a diagnosis of epilepsy and a frontal lobe brain tumour.

My son did however also have seizure triggers - lack of sleep, physical exertion and stress (he’s studying too) were factors so it may be your son will figure out what triggers his so he can hopefully minimise the risk of a seizure.

And I can totally empathise on the hardness of coping with it all. Trying to reassure when you are worried yourself is extremely hard emotionally. At least you seem to have had good professional guidance, do of course make use of it with any concerns you both may experience.

Also, please do be aware that he will not be able to drive either now until he has been seizure free for 12 months so should be eligible for a free bus pass.

Canonly, thank you for sharing, I will ask my so to keep a diary to look for trigggers and also apply for a bus pass.

I hope your DS is well now, what a very difficult time you've all had

This is me, Epilepsyquestion.

He’s on the road to recovery thank you. Fingers crossed your son will learn to cope with such a life changing diagnosis, which epilepsy is unfortunately.

Hello there Clara, thanks for the update. I'm glad that you called 111, wise Mum! It is a diagnosis for him that will mean some life style changes, but he has a great Mum behind him

@ Can, I'm sorry to hear about your sons illness, I hope that he goes from strength to strength.
All good wishes to you both

Do any of you have any experience with Clonazepam?

The consultant said he would like him to take 0.5mg per night but I'm not sure, simply because he's just turned 18 and sometimes likes to go for a drink or two with his friends. Also it's highly addictive which really worries me.

Not often but I think the two don't mix?

Sorry if it's a stupid reason not to want him to take it. It was a phone call with the consultant which is why my husband forgot to ask him.

I have JME. I'm surprised the consultant wants to try Clonazepam so quickly. Even 150mg of Lamictal isn't a big dose so there's room to try increasing that/adding in other drugs with less issues than Clonazepam. Perhaps the Clonazepam is meant to be short term? You (and your son of course) really need to get a meeting with the consultant and specialist nurse to ask these questions.

It's a scary time, but things will get better. I developed JME in my early 20s. Now nearly 20 years in it is very well controlled. I work, drive, travel, have kids & a relationship. In the past I partied, dated, completed uni study to a high level. Basically, a pretty normal life.

My main seizure triggers were periods (one your son can rule out!), alcohol, and sleep deprivation. I'd really suggest no alcohol til your son has had a chance to get used to things and talk it over with those treating him. I'm now teetotal but appreciate this isn't an appealing option for an 18yo.

Can you look into canabis oil?

I've not heard of cannabis oil, I'll have a look at it. I did read somewhere that smoking weed might help but didn't want to suggest that!

I think the Clonazepam is a bit of a leap without looking at other options. We are seeing the consultant in two weeks so I'll ask him then. We have the prescription but haven't picked the meds up yet.

Thanks again for the help, I can't tell you how reassuring it is to hear someone's been to uni and enjoyed the parties etc!

I agree with Gruffalo and great to read that you are doing well Gruffalo
Not sure why the Clonazepam either, unless it is to relax him of a night?
I am not a medic, but yes it is highly addictive, and really should only be for short term use. Perhaps this is a short term solution until he gets his appointment. Also, he should not stop it suddenly.

It really is a bad idea to drink on epilepsy meds, full stop. Stay away from recommending weed to your son also.

Did you manage to speak to the Epilepsy charity at all?

OP, I haven't read the full thread, but have you researched into the many types of seizures? The drop and shake type (tonic clonic) are only one. Lots of other types including jerks, shaking, daydreaming, etc. It sounds to me like a different type of seizure... my son shows several types; some look worse than others, some are more dangerous than others....

I haven't called the charity yet but I will do.

I think the consultant told DH that the clonazepam would relax him and stop the myclonic seizures when he wakes up, although this has only happened maybe 4 nights in total.

I did look at the different types of seizures, he had one tonic colonic and the others have been a funny shaking type thing, but he's fully conscious during them.

Thanks again for your help, he has been drinking a few times since starting the Lamictal and has been ok but said he can't drink too much. I think it makes him feel ill but I'm not sure exactly.

I've got a long list to ask the consultant, that's for sure x