new to all this and scares

[Newtoitall2]

hi my 19 year old daughter had her first and second seizure 4 days ago. Waiting for a neurology appointment at the moment. Am trying not to panic but tonight she started feeling dizzy and sick. It felt like we were waiting. She did zone a little but, found it oppressive just sitting so went to lay on her bed (boyfriend was with her). After about an hour she said she felt fine and asked to go out. Both her boyfriend and myself were really worried and it did cause friction. That is the last thing I want to do for her. She says we need to trust her when she says she feels fine.. but we were both so scared. I know we should “carry on as normal” but it is really hard. Especially as we are in the “not formally diagnosed “ phase and haven’t had specialist advice. Any advice by other people would be most welcome

[GillyA]

Hi there, I had my first seizure when I was older than your daughter, but I know my parents were desperately worried especially as I lived on my own. But it’s impossible to live your life wrapped in cotton wool ‘just in case’. I’m sure your daughter will be wanting some normality, not least because she doesn’t want to sit there just focused on the possibility of a seizure.

TBH, I’m not sure a diagnosis actually helps that much. You still have the risk of seizures, especially while they find the right med, so you need to carry on with life.

Fortunately for me, my seizures are well managed now although I still have them from time to time. They haven’t stopped me from going on holiday, living overseas for work (including in developing countries) or having a high pressure job. I know that at times my family were desperately worried, but they also supported me in living my life.

I’m sure your daughter understands your worry (and she is really worried too) but, especially at 19, she needs to be able to make her own decisions and learn what she can and can’t do.

I’d also say that my experience is that when I’ve had a seizure when I’m out people have been very kind and supportive, which in my case is better than having one when I’m completely alone.

I’ve rambled a bit, I’m afraid epilepsy/seizures aren’t without risk, but your daughter is an adult and needs to find her way of managing this. You’ll love and support her whatever.

[milktrayman2 in reply to GillyA]

Dear me, GillyA has given some sensible advice. Just remember, you're a human being and a Mum. To say the journey with epilepsy is easy would be wrong. However, with the correct treatment, and support, your daughter should be able to get on with her life.I was diagnosed 48 years ago, I take my medication at the same time every day. I've travelled throughout the world, for work, with few issues.

[EpilepsyAction1 Partner Epilepsy Action]

I’m glad you’ve heard from others on this platform, as sharing information and experiences can be a good idea.

Can I just check you also know about our other services?

We have our Talk and Support groups (epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups) and befriending service (epilepsy.org.uk/support-for-you/epilepsy-befriending).

We also have a membership offer which is designed to help people stay up to date with all the latest epilepsy news, views and research: epilepsy.org.uk/involved/join

Finally, if you think it may be helpful to speak to one of our advisers in more detail you can contact us by live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm: epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline

Regards

Jess

Epilepsy Action Helpline Team

[Hidden]

Difficult as a mother ? Of a 19yr old ? As a graduate, professional grade, utterly self reliant - incredible thing I've found in 6 yr's with seizures, is the fact that 110% of people step in with someone having a seizure and/or post seizure. Roadside, supermarket aisle wherever, buses, taxis, bin wagons, 4/4's, van, drivers, dog walkers, AN Other give 110% seizure / post seizure help

Worthwhile using the system, gain medical advice, gain any financial benefits obtainable (Nb. Bus pass, discounted train travel, any financial aid whilst looking at work / study or whatever). Money isn't everything, but helps to pay for life's essentials

Even more worthwhile; collate and assess any information relating to seizures - Dr's have minutes available, you & daughter have 24 Hr's a day to assess any seizure related info I.e. I noted that my seizures episodes are on a precise periodic basis, with precise nocturnal events preceding any possibility of day events. Had known this for 4-5 yr's, Dr's have only just started to grasp this basic fact (Nb. Had formally served Notice of this basic fact on relevant Dr's 4-5 yr's back). Famous people have had seizures, manage it - use the system and avoid personal harm (Nb. Am a fanatical cyclist; took me 10 months to learn that cycling 150 miles a week is fine, was doing 180 weekly last summer. But staying off the bicycle in probable seizure periods was worth it)

So ? Encourage daughter to adjusting life to adjust to any issues relevant to seizures (Nb. Injuries are worth avoiding). Use the system - it's incredibly generous. Medications do work - take weeks to absolutely adjust to. And ? 110% of AN Others step in, when anything happens

[Newtoitall2]

thank you all. Very reassuring and uplifting to hear. Much appreciated

[KaiKai_B]

One thing I have learnt since my diagnosis is how well we know our bodies. It's scary, but if your daughter said she felt fine, then you should trust that she did. She can't stop living and enjoying herself. Just make sure that she is with at least one person who is aware of her situation and knows what to do should she have another seizure. I bought a smart watch and downloaded an app called 'my medic watch' on there and my phone. If a seizure is detected, it notifies whoever is set up as an emergency contact (can have multiple) and tell you where they are should they need help. Might be worth looking into to give you extra piece of mind?

[Hidden in reply to KaiKai_B]

How have you found “my medic watch” ?