breakthrough seizures

[Benay76]

Hi, new here. I have a brain lesion & since having surgery 8 yrs ago have only had 2 Tonic Clonic’s which have since been completely controlled with Lamotrigine. 2 wks ago I had a partial seizure whereby I had a rising feeling & felt similar head sensation prior to Tonic clonic. I stayed conscious & breathed through it. Since then it’s happened several more times. My consultant has added in Levetricetam & since then I’ve had no more (only 4 days tho). I’m so upset after being seizure free for 7yrs & so frightened to be left alone. I have 2 boys to look after & have made my husband glue himself to my side so I don’t have to be alone but we can’t do that forever! Completely gutted that I have to give my license up again too. Bye bye independence.

I have had a scan & get my result tomorrow.

I am wondering whether hormone’s would’ve caused the change as I am perimenopausel? Anyone else been affected by hormonal changes that might’ve reduced AED efficiency? Any tips for getting over being left alone? Thanks for listening.

[Charlie90]

hi there

I am so sorry to hear

That after 7 years seizure free you’ve had a seizure

Epilepsy and seizures are devastating

The absolute worst thing I’ve experienced after my brain injury in 2019

I am too terrified of being alone

But over time I am learning it Is unrealistic to never be alone and not the independent life I want to live

After a seizure I do a reset

Contact my doctor

Rest and sleep

Drink lots of water and keep hydrated and eat healthy

Focus on my mental health and focus on my hobbies that can be a form of distraction

Reading painting

Listening to podcasts and music

Gentle exercise

Getting into a good sleep routine

I have also invested in the embrace epilepsy alarm

Have a look into it

It is a watch you wear

It has alerted family members 5 times I have had a tonic clonic seizure as it picks up the convulsions and rings care givers

Worth every single penny IMO

take care

I hope things work themselves out for you xx

[Charlie90]

also just to add

My doctor has told me hormones play a huge part in seizure increase

I have to take clobozam 10mg

during menstruation and ovulation every month

And take 5mg as a rescue medication aswell

[Benay76 in reply to Charlie90]

Thanks so much for your reply! Those are really useful tips. I know it’s a matter of building my confidence again but will certainly try some of the distraction/self care suggestions. It’s still very raw at the moment but I know with time (& hopefully stability) things should get easier. You’re right it’s unrealistic to not be alone & I need to deal with that fear.

Really interesting also that it could be linked with hormones. I am going to mention this to my neuro when I see him. I’ve just increased my dosage of Levetricetam & along with my Lamotrigine I’m hoping things will get better. I really hope you’re able to live well too going forward. Thank you for your help ☺️

[happy48]

Hormones are definitely involved with seizures. I used to get them monthly until menopause. During this time stress, tiredness and physical exhaustion have bought them on.