What joy. Now I have to add a third epilepsy medication to my collection 🙄
Anyone here got experience of Zonisamide, Cenobamate or Brivaracetam?

#Life #Epilepsy #Medication

Talks stop for life-changing epilepsy medications in Saskatchewan
A drug used to treat epilepsy that has been confirmed for use in both the U.S and in Europe was being eyed for Saskatchewan, but talks have suddenly stopped.
#globalnews #Canada #Health #Epilepsy #SaskatchewanHealthAuthority
https://globalnews.ca/news/10891799/talks-stop-life-changing-epilepsy-medications-sask/

how do people with #epilepsy survive this ridiculous world full of ads looking to trigger seizures??

I *can’t* be the only epileptic on here, but if you follow #Epilepsy , it looks like I am!
😳

I texted my Occupational Therapist everything that happened today. She is going to look into a home health aide to take me to the store and stay with me while I shop, so I won’t have to be so dependent on my sister.

Which reminds me: My primary told me yesterday that she is changing all my prescriptions to mail order, because the therapists have reported to her that my sister has been withholding medications from me. I hadn’t thought of it in those terms.. i just thought of it as her “being mean”. She doesn’t, like, hide my medicine or anything like that. But she *does* use whether or not she’ll pick up my prescriptions as a punishment/reward thing: “Maybe I will, maybe I won’t, OH I’m too tired…”

They don’t even know that she does that with groceries as well!

But the dr knew all about it, and I hadn’t even told her.

So that is one - and maybe two - less things that I have to depnd on my sister for and that she can control me with.

I feel better about that.

#Epilepsy

I’m so disappointed with myself; after a whole week of BEGGING to go to the grocery store… and I leave my groceries behind. 😞 I feel so dumb, and I know it’s gonna keep falling apart.

#Epilepsy

My heart and breathing are still going a mile-a-minute.

If I’d lost the use of my legs, would they be saying I just need to get up and walk?

And if I didn’t, too bad, I’ll be left behind?

Sadly, I think the answer is yes!
I think they would have *more patience* with a visible disability, but they’d be looking for a way to wash their hands of me sooner or later.

They resent the inconvenience.

And maybe that’s fair, with American healthcare!
But please don’t take out your anger and frustrations on ME!

#Epilepsy

My sister sent me into the grocery store by myself. Keep in mind, I am not supposed to be left alone at any time, even at home.

I navigated the store (I have the layout memorized), got my stuff, did self check-out… and then forgot where I was, what I was doing… people were looking at me funny, so I must have been doing something or making some noise… i grabbed my groceries and walked out as quickly as I could (I’d already paid before this episode) and I was in such a panic, I left a whole bag of groceries there. I am beating myself up about it now, especially because that bag had my Sleeptime Extra tea and I really need it right now!!!

When I got out to rhe car, i told my sister that I can’t do that anymore, that SHE can’t do that anymore, I am in cognitive decline and it’s expected to get worse, I can’t be sent out in public alone anymore, and she was just like, “You’ve got to believe in yourself!”

#Epilepsy

This afternoon will be my first time attending the #Epilepsy Support Group, my first time meeting epileptic people AS epileptics.

Of course , I am nervous, and shy, and what if they’re terrible, or what if I’m terrible?

I am using the #MountainMobility service to get there. They’re reliable most of the time, but they seem a little unpredictable since #Helene .

I will report everything back here later.

Here is a link to the #epilepsy #legal defense fund for anyone with epilepsy or a family member who needs their assistance.

https://www.epilepsy.com/legal-help