Recently diagnosed epilepsy

[ClaireW1994]

Hello I have recently been diagnosed with epilepsy secondary to having a stroke I am trying to be so strong about it all but it can be very upsetting and overwhelming.

[Anonite]

Hi Claire,

Epilepsy is so hard to come to terms with but hopefully with the right medication it will be controlled. If you don’t mind sharing what type of epilepsy do you have and what medication have they put you on.? If you share more details maybe someone with a similar story to you might be able to share some positive feedback. Alot of the stories on the internet seem to be more negative than positive. I would love if more people who have their epilepsy well managed and controlled would share their stories just to give people who are struggling in the initial stages some hope and optimism. Hope things settle for you soon xx

[ClaireW1994 in reply to Anonite]

Hello thank you so much for messaging me going off my hospital discharge letter I had tonic clonic seizures it all seems a blur to me I’m awaiting a hospital appointment to be sent out to me for me to see a neurologist. I got put on Keppra I have to have 250mg twice daily for 13 days then 500mg twice daily after the 13 days are up. I had a stroke back in 2018 and a bleed on the brain and they have put on my letter that this is secondary to my stroke. There is some really scary stuff online which is why I wanted to reach out to people I have a 4 year old daughter so need to ease my mind the best I can. Thank you so much I really hope they do too xx

[Anonite in reply to ClaireW1994]

Hi Claire,

Thanks for sharing it is good they have started you on Keppra which works really well for lots of people. You might feel very tired at the start but this should only last a week or 2 after each dose increase. Keppra has the least side effects and the reason it is the first medication they try. There is every chance that it will work for you but if not remember that there are plenty of other options and from speaking to my doctor epilepsy is usually controlled within the first year to 18 months. What I find helpful is every time I read or hear about someone’s epilepsy being controlled I write it on a list and whenever I have a wobble and anxiety is taking over I’ll look at the list just to try and ease some of the fear.

Don’t hesitate to contact if you need to talk. ☺️

[ClaireW1994 in reply to Anonite]

Hello Ruth You are more than welcome thank you so much for taking the time out of your day to help talk to me about my diagnosis I will have to keep a book and write things down I’ve not had a seizure since starting the medication on 25th January thankfully. It means so much to know there’s people to talk too. ☺️ xx

[Charlie90]

hi Claire

I am so sorry to hear about your epilepsy diagnosis

I too have experienced this after my haemorrhagic stroke in 2019

It’s a very scary and confusing time

It is honestly been the most difficult part of the entire journey for me

Can you give us a little bit of information eg

What seizures do you have how often

Are you on medication etc

I can try to offer as much advice as possible

It may not seem like it but there is a way through

I’m thinking of you and I’m so sorry

It’s shit

But you are going to be okay x

[ClaireW1994 in reply to Charlie90]

Hello lovely I had tonic clonic seizures which started on 23rd January this year I had 1 over night whilst sleeping which resulted into bed wetting and then I had multiple seizures in front of the paramedics and hospital staff they discharged me on 25th January on Keppra medication 250mg twice daily for the first 13 days then 500mg twice daily from then onwards.

Thank you so much for reaching out it means so much hearing someone else who had the same stroke as me also got epilepsy I really hope you are doing well and yours is controlled well.

Kind regards

Claire xx

[Charlie90]

hello lovely

Being a young woman 32 I understand how debilitating this diagnosis and these seizures

Can be and the anxiety they can cause.

how often are you having them?

having you got any family or friends to support you or do you live alone

first of all find yourself a good neurologist who has a special interest in epilepsy

ask for a referral to anepileptologist asap

They can perform lots of tests and can investigate your epilepsy further.

Do you have access to a neuropsychologist?

Utilise this service to help you work through the diagnosis

First of all stay off the internet

Do not go down the rabbit hole as I say

Yes you will want to find out more

Information

But as you said there are lots of scary stories out there

I find epilepsy.org to have the most up to date and accurate information

Or a local epilepsy support group can be very helpful

You say you are on keppra it can take quite some time for your mind and body to adjust to this medication

ask me anything about it

I am still in the middle of my epilepsy journey

However there is light

I have achieved great things whilst experiencing seizures

Eg returning to work

Learning to work

Holding down a social life

Learning to be more independent at home

All is not lost

I honestly have to take things hour by hour if I’m honest

and do you know what that’s okay

learning your triggers early on is really important!!

You are NOT alone and you can get through this

ask me anything and I will answer honestly

x

[ClaireW1994 in reply to Charlie90]

It honestly is so scary being young I had my stroke when I was 23 I am now 28 and been dealt this blow.

I’ve not had any seizures since being discharged from hospital on 25th January I’m awaiting an appointment to see a neurologist which I hope I can get more answers from them.

I’m in the early days so there’s still lots of research to do I live with my partner who has been my carer since I had my stroke we also have our little girl my stroke started from undiagnosed pre eclampsia in my pregnancy.

I wish you well on your epilepsy and stroke journey just hearing your journey helps ease my mind a little.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Claire!1994

It's good to see you are hearing from others, as sharing knowledge and experiences can be of great help.

I just wanted to make you aware of some resources on our website that can be helpful for someone newly diagnosed.

Newly diagnosed information epilepsy.org.uk/info/newly-...

Epilepsy and you online course -online self-management course that gives people the skills to manage their epilepsy. learn.epilepsy.org.uk/cours...

Talk and Support groups face to face and virtual

epilepsy.org.uk/support-for...

epilepsy.org.uk/support-for...

Also we have a story book to help explain epilepsy to your daughter. The book is My Mum Has Epilepsy. You can view it online with her or contact me on [e-mail] with your name and address so I can post a hard copy to you. Please DO NOT put your personal details on here.

epilepsy.org.uk/app/uploads...

epilepsy.org.uk/living/pare...

If our helpline team can be of any more help, please feel free to contact us directly, either by email [e-mail], live chat, 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

Regards

Diane

Helpline Team