To fucking hate epilepsy. I’m at rock bottom

[Ostryga]

This condition has taken over my life. I don’t get a second of down time because I’m constantly on edge waiting to have a seizure.

it’s affecting my Dd because whilst I try to cushion her from the worst of it, she’s seen a couple of seizures and it scared the hell out of her. The guilt I feel is awful. I know it’s not my fault but she’s only 6.

I’m medicated but it’s not working atm. I’ve only been diagnosed since feb but I feel like my whole life is slipping away. I have no enjoyment anymore because I’m constantly thinking I might have a seizure in a second. It’s such a shit way to live.

How hard for you and your DD. Maybe look at Charlie's Foundation on helping controlling epilepsy.

Sending you 💐 as DD has Epilepsy. I hope you find a balance of medication that works for you soon.

I don't have any answers or wise words I'm sure some others will soon . Just didn't want to scroll past. My sister in law and niece have well controlled epilepsy so I just hope that your doctors can get yours sorted . I know my niece's started with her periods as a teen so I just hope that the medication you are on can allow for your hormones . I know it can be very tough . Hope the doctors can sort it for you .

Oh dear, you have my every sympathy.

it really hasn’t been very long since diagnosis, and it does take a while to sort out exactly the right doses and medications for an individual, so please hang on in there. This is not necessarily what the rest of your life looks like. Keep talking to your HCP team, I wish you all the best.

Feel your pain, mine is controlled and has been for 8 years. It took me two years of trial and error with meds to get the right one. I always found they my increased around my period. Thankfully mine are only absences / severe deja vu. You will get there eventually when you’re on the right medication for you x

Yes it’s absolutely shit. I was given propanolol to help reduce the panic attacks and that full on anxiety you describe after a seizure I had last year. I was conscious through it and my poor DC had to call an ambulance. Would a med like that help you?

What I find particularly shit is how little money is put into epilepsy research compared to other conditions. There's records of epilepsy going back to Ancient Greece and yet we're hardly any further forward! It will get better though and you'll learn to live with it. I've now had epilepsy for longer than I didn't have it: if you'd told me in the first few years that I'd be at peace with it I'd have laughed in your face though.

In total I have tried 12 different drugs, some old some relatively new. Keep going. Look up the ketogenic diet, that can help some forms of epilepsy.