Newly diagnosed with generalized seizures - Epilepsy Action

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Newly diagnosed with generalized seizures

DarkPhoenix25
DarkPhoenix25

I was just recently diagnosed with epilepsy, I had my

First tonic clonic seizure at the end of May. I recently had an EEG done and my doctor diagnosed me with generalized seizures. Over the past year I’ve had a mixture of absence and myoclonic seizures. During the eeg I felt my left arm and leg twitching at the same time my doctor said I had seizure activity going on at the same time. This is all just shocking for me being diagnosed with this at only 19. Many of the seizures I’ve had have been triggered by either stress or lack of sleep. My doctor started me on 750mg of keppra and it’s already having me feeling tired wondering if that’s normal. Any advice would be gladly appreciated.

X Karah

7 Replies
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Hi getting tired alot is very normal especially after a grand mal fit and medication can make you feel very tired keppra isn't on I'm on normally but I know it's the one thay use if I have to have via IV drip as mine isn't available . I was 7 when I had my first epilepsy fit so yes having this hit at a young age is hard but you can still have a normal ish life and the medication is now your best friend and whoever you trust to help you out I actually tought my emergency contact person all about epilepsy when we where 17 I brought her to all of my epilepsy appointments and let her ask my consultants any questions she wanted now she has replaced my mum and has taught other people about epilepsy and being a caregiver for an epileptic if you have a friend like this you can be safe and well and still be you.

Good luck with your epilepsy and hope you find out more

Thank you for the advice I should definitely try that after this covid-19 dials down a bit. I still haven’t told most of my friends about my diagnosis yet.

I found that having epilepsy showed what real friends are I call my epilepsy both my blessing and my curse if that makes sense . Alot of people fear epilepsy so your friends might not be as true as you once believed how I used to make friends was I didn't tell the person for a week to give them a chance to get to know the real me and if I felt the friendship was working I would confess my little secret before it got too far into a friendship most used to claim it was fine but run after first fit or call me names and run away my good friend came from college and wanted to learn more so I felt very lucky meeting her.

I feel most of my friends won’t know how to act that’s why I haven’t told them yet. I’ve only told one of my best friends she’s had a good response to it always asks for a update on me or how I’m doing.

Some people are too false to admit that we frighten them but this will also show you who your real friends are real friends will admit it's sceary but what can be done to help my friend knows about epilepsy action because of the first aid for epilepsy I always send her stuff like that and about purple day as she knows how important it is to me .

EpilepsyAction1
EpilepsyAction1Administrator

Hi Karah - It must be a shock to get a diagnosis of epilepsy and there’s a lot to take in. Epilepsy can be very individual. Some people get only one kind of seizure but some people get more than one, particularly if they have a type of epilepsy called juvenile myoclonic epilepsy. The good news is that with the right dose of the right epilepsy medicine most people can get good seizure control. But this can take a little time. People tell us they can get side effects from their epilepsy medicines so feeling tired can be something you feel when you first start them. Side effects usually settle down as your body gets used to the medicine. But if they don’t settle talk to your epilepsy doctor about this.

Some people find there are certain triggers that can make it more likely for seizures to happen so as you mention knowing about triggers can really help. It may be useful to keep a diary for a while to keep a note of anything you notice. You can also use this to talk things over with your doctor.

There are some links here that you might find useful:

This is our information for people who are newly diagnosed:

epilepsy.org.uk/info/newly-...

This is our information about juvenile myoclonic epilepsy

epilepsy.org.uk/info/syndro...

This is our Young people’s information:

epilepsy.org.uk/info/childr...

This is a link to our new website for young people called The Epilepsy Space” which we are developing at the moment:

epilepsyspace.org.uk/

This is our information about seizure triggers:

epilepsy.org.uk/info/triggers

It can be really helpful to share support and information so I hope you hear from others on this platform.

You might be interested to know we have other online services as well. Here are the links:

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

instagram.com/epilepsyaction/

twitter.com/epilepsyaction

You’d be welcome to call us at the Helpline (epilepsy.org.uk/info/suppor...) if you have any questions or want to talk anything through. Its confidential and free to phone on 0808 800 5050. We are open 8.30 – 8pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.

Regards

Mags

Epilepsy Action Helpline Team.

Hi there, I am not on the same medication but, since I started taking tablets to control my epilepsy, I am definitely more tired (even though it has been 15 years). I have found that it becomes really important to listen to your own body, rest when you need to, eat well and learn to properly relax

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