Epilepsy ruining my life

[Cadela]

I’m so fucking frustrated I need to vent.

I developed temporal lobe epilepsy 2 years ago out of the blue, my seizures started as focal aware (so I felt panic and strange sensations rather than typical seziures)

They’ve now progressed to daily complex seizures, so not tonics but I’m not aware of what’s happening.

I’m taking 50mg Briviact twice a day, 250mg Keppra in the morning, 1000mg carbamazepine, 20mg clobazam, 120mg slow release propranolol and 10mg folic acid.

I am so so so sick to death of this fucking disability. 2 years ago life was so good and epilepsy has taken everything from me. I just feel so low and if it wasn’t for my daughter I feel like I’d do something drastic. I just want my old life back

I'm so sorry this is happening to you. I cant imagine how frustrating it must be for you to have your life changed like this. How often do you have seizures? Do you have to be really careful what you do in case you have a seizure and it's dangerous?

Rant away - everyone needs an outlet for frustration.

Oh Cadela, whilst I don't have epilepsy, my job is working with those who do, alongside other disabilities, so I understand how frustrating epilepsy can be.
Have you been on that combination of medication long? Sometimes medication changes can take a while to get the best results from, and some tweaking along the way. Is it the amount of seizures you are finding difficult to live with or the way you feel because of worrying about them happening? Medication for epilepsy can have quite an effect on moods, so please keep going back to your doctor if youre feeling like you can't cope with it. There absolutely is a right combination of medication to help control them, its just trying to find it. Sending a massive big hug

Bumping for you.

YANBU that sounds really hard.

I really sympathise, I have epilepsy too. It's so scary, not knowing if/what/when, yet I find it often isn't seen as a 'proper disability' unless you're unfortunate enough to be fitting all the time. Not much thought is given to the emotional side effects.

On a side note, Keppra was an absolute fucker for me, and made me suicidal. I'd mention how you're feeling to your neurologist next time you see them - the drugs may not be helping.

I'm sorry you're going through that OP. It's awful when seizures aren't under control and take over your whole life. And then some of the meds make you feel rough as well.