Newly Diagnosed

[Christmashorse]

I had my first seizure 1 week and 1 day after I left secondary school. After a series of tests ect I was diagnosed with epilepsy on the 11th October this year. Originally I had an EEG and an MRI which showed that I had epilepsy. The MRI also showed that I have got a bleed on my brain. Which I think I must have got at my original seizure as I think I banged my head.

Some of my symtoms include short term memory loss, twitches all of the time, migraines, tonic clinic seizures(2 of these, 1st seizure and 13th December - partly my fault. I stayed up all night to watch UK election results), vacent moments, tiredness, I also have seizures at night.

I'm trying to cope. Which I look like I am to everybody except my mum. I keep shouting at her saying that she doesn't know what it is like in my head. My epilepsy is hereditary however nobody has ever had epilepsy apart from some 3rd/ 4th cousin on my dad's side.

I am currently in year 12 trying to study for my A levels. I am studying politics, business and philosophy and ethics. And in politics I went from a D to a U in a matter of weeks. I'm struggling in my other subjects.

I had to have another MRI for the bleed and am still awaiting results. But I just feel like there is no end to all of this. And that if I have to have an operation I will have to have weeks off school meaning that I will be even further behind.

I was started on Lamotridgine straight away. (Don't quote on spelling). I have got to do a gradual dosage increase and am currently on 75mg morning and night. With no change in seizures.

I know that there are people worse off but I just wanted to write all of this for people that understand. Thanks

[teech]

Hey. Thank you for sharing. I am on the same meds as you but a much higher dose plus another med. The first thing I will say is go easy on yourself. This is a huge thing to cope with. Be aware and note down your triggers. I am assuming your school/college know, if not make them aware asap. I totally get how you feel and forums like this are great to connect with people. You are not alone. I know right now you feel there is no end to this...hopefully as your dose increases so too should the seizure control. One thing that has helped me is good quality CBD oil...not sure if it's managing my seizures but i take it before bed and i find it helps me calm down and reduce my anxiety. The last thing I want to say is keep communicating with your mum. No doubt she will feel helpless and worried all the time. Having seen a video of myself having a seizure i can safely say it is the most horrific thing anyone, especially a parent, will experience and she will be traumatised herself. A good idea might be to see if you can speak to councillor/therapists (see GP for referral if poss). Epilepsy sucks big time but please do not suffer in silence speak to people/support groups. Your biggest stress will no doubt be your A levels try and speak to your school to see if there are any options for you to reduce your stress. Sending you a tonne of good wishes.

[Christmashorse in reply to teech]

Hi. Thank you for all that you have said. Yes I told P16 as soon as I got back from being told that I had epilepsy. But they had been in the loop since I started. I have got extra at exams. I already had 25% extra time and a computer as that is what I had at GCSE's. But now I have got a prompt and rest breaks if needed.

I already know that I'm behind in all of my subjects(philosophy and ethics, business and politics) and with memory loss don't see a way that it can improve. I found out last night that my meds can actually cause memory loss as well. So even though I have got up this far. I start 100/100mg a day today I am considering asking to change.

Despite staying up all night on the 12/12/19 as I wanted to watch the UK General Election results. And managed all night and didn't take my tablets as I was going to treat it like one long day from Thursday morning until Friday night. I might come to one of these meetings if I get chance. I'll be at the Sheffield meeting. I've thought about going through GP but I'm already having practically a monthly meeting with him due to either suspected/ side effects or make sure I get correct dose of medication as pharmacist is useless. Thanks for listening though

[EpilepsyAction1 Partner Epilepsy Action]

Hi Christmashorse

It sounds like things have been difficult for you for a good while now. Starting treatment, memory loss, difficulty in explaining how you feel and feeling your mum doesn’t understand – they are all tough to deal with. And are certainly all things that other people with epilepsy talk about.

Communicating with people on here and through other social media, is a really good idea. So I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Online community forum.epilepsy.org.uk/

Local meetings ¬ epilepsy.org.uk/involved/br...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

As teech suggested it’s important you talk to your college. It may be they can do things to help you. They may be able to do some reasonable adjustment. Some people with epilepsy may also get help at exam times.

epilepsy.org.uk/info/educat...

If we can be of any more help, please feel free to contact us again, either on this platform or by email [e-mail] or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy Action Helpline Team

[hafsa97]

Hi, I was in the same position as you. During secondary school time was the worst for me but with the right medication and support, you can get through it. It’s still a bit of a struggle today but miles better than before. As for trying to get people(especially loved ones close to you), it’s a fight we can’t win. Even after having for 10 years.Really, before having epilepsy I had no clue about it. I really think if we just do what we can to support each other and communicate with those who have it/trained in it can help. My mums the exact same- if anything over the years I’ve realised it’s more so worry. I hope your health gets better

[hafsa97]

Also lamotridgine (don’t quote on spelling) did me so wrong for years. Moving to Keppra has helped much more. Not perfect, but definitely much much more. I understand everyone is different and has different medication needs but I’ve discussed this with a few people and they’ve agreed lamotrodgine was a mistake. Maybe a convo with ur gp/epilepsy nurse/neurologist worth discussing about?