Tips for keeping safe

[GSYGirl24]

Hi all,

I recently had a seizure and it wasn’t until this latest one where I fell and hit my head that I realized how easily it could have turned horribly wrong. Has anyone got any tips for keeping yourself safe or how to deal with this if alone? I was fortunate enough to have someone there this time but I’m now very worried for the next time.

Also has anyone else been on medication which has been upped since each seizure and are still getting breakthrough ones and more regularly?

[Anonite]

Hi,

For my son his first medication was upped after each seizure until he had reached the maximum dose on that medication. When he had a seizure after the highest dose was reached it was decided that the medication he was on was not working so the added another so far this seems to be working for him. He was initially on Keppra and Lamictal was added.

[EpilepsyAction1 Partner Epilepsy Action]

I glad to see you’ve heard from someone else 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 safety advice and information about getting the right care and treatment on our website that you may find helpful.

epilepsy.org.uk/living/safety

epilepsy.org.uk/info/treatment/getting-right-treatment-care-for-epilepsy

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

[Nines]

Hi, I’ve had uncontrollable seizures for 14yrs that unfortunately got worse over time which I feel is due to medication so I won’t change it again because up until 2016 I had tried everything available including a vagus nerve stimulator which didn’t work and I didn’t have tonic clonic fits or collapse in the beginning it was just absent seizures that I would have and now I have all types of seizures and if I’m standing and seizure even if it’s not a fit I collapse so I wear a safety helmet to soften the blow to my head when I fall. I still get injured but not like I did/do without it. I really hope your ok x