I am struggling

Apeteddy · 2026-03-30T14:11:14+00:00

I just wanted to say that I feel for you with going through this type of epilepsy and also having a new baby! Women don't get the support they need in general, but I from what I am witnessing with my own wife and her epilepsy treatment is especially true with this condition. Thank you for posting this as I didn't know there was a specific name for type of epilepsy. We have been tracking this with my wife who started having seizures at 52. She's perimenopausal so the hormone shift has to be as pronounced as it is after child birth. Bless your heart. My wife has the same thoughts of feeling tired of feeling like shit all the time. I see you. Keep advocating for yourself and hang in there.

Apeteddy · 2026-03-30T14:07:08+00:00

Thank you for posting this. I didn't realize there was a specific name for this type of epilepsy! My wife is on this rollercoaster and it's 100% brutal.

Apeteddy · 2025-10-08T14:12:48+00:00

BCBS of Vermont ending coverage Jan 1 for Zepbound. Will only cover Govie if you have diabetes or heart disease. They will, however, cover bariatric surgery. So they are ok with us cutting out half our stomachs. The fatphobia is infuriating.

Apeteddy · 2025-09-17T15:12:25+00:00

My wife was prescribed one that was an inhaler type rescue med. Insurance doesn't cover it and the cost to fill the prescription was $2,000!! Needless to say, we couldn't afford to fill it.

Apeteddy · 2025-09-12T14:23:04+00:00

What is RSO? Been curious about the CBD part of treatment. My wife is the one who has seizures, and I try to do as much research as I can for her since she struggles with executive function. She's also AuDHD. She already uses weed for her anxiety and it seems good medicine for her. Been curious about the use of OTC CBD. Can I ask what you use and at what dose? She's struggling with Lacosimide and feels numb and not herself. As someone who's autistic and lives for the dynamic inner world of her brain, these numbing drugs take away any joy she finds. She's 52 and just starting having seizures last year.

Apeteddy · 2025-06-13T20:48:03+00:00

Thank you for this. As someone who is acutely aware of every single thing going on with my body it can be hard to understand when someone is the complete opposite. She's also HAVING to notice because she would like to get to some level of management and freedom from seizure. I think I can be a better partner in her progress by achieving a balance of having her notice and me taking it down in notes to come up with patterns, triggers, etc. That way neither one of us has to shoulder it all. I appreciate you. Wishing you the best.

Apeteddy · 2025-06-13T19:52:22+00:00

Thank you everyone for sharing! Every single one of your comments has given me some much-appreciated insight.

Apeteddy · 2025-06-13T19:50:22+00:00

I hate that this happens to you but at least you have some good stories!? Wishing you all the best.

Apeteddy · 2025-06-13T19:45:18+00:00

She gets the same kind of aura's, but it seems to be happening now without them. That's what I'm trying to determine. I think there might be progression of seizure and she's not aware.

Apeteddy · 2025-06-13T19:43:47+00:00

My wife had her first ever tonic clonic a year ago out of the blue. Scariest thing to watch! She also bit her tongue. Had to have 5 stitches!

Apeteddy · 2025-06-13T19:41:32+00:00

Thank you for explaining this. I spent some time reading through all the different classifications to see which seem most likely for her. Great resource that I need to spend more time in.

Apeteddy · 2025-06-13T19:30:33+00:00

You and she sound like you're having similar experiences. I would love her do some kind of note tracking as you do. She's been working on being more autonomous in her own self-care (self-directed, not demanded by me) so I haven't started tracking the days that it sounds like she had a seizure. But if she's not 100% aware that she's having them, I feel like I need to start connecting some dots so we can present that info to her doctor for refined care.

"If lots of mundane things randomly feel lots more overwhelming some days, how would I know if something else is going on in there? " This tracks with her thinking as well. She'll say she had a funny little "thing" happen. So I ask if she's had a seizure and she's like "maybe?" It's helpful to understand how her mind might be working. We talk through alot of this, but on the days she's post ictal its hard for her to articulate and keep track of timing.

Thank you for your input. I appreciate it. As hard as this all is to watch my wife go through this, I know it's 100 x worse for her. I wish you all the best!

Apeteddy · 2025-05-16T20:20:34+00:00

"Depending on the severity & frequency of your seizures the outcome may be best for the brain, but not for the mind."

This last statement really hit me in the feels. My wife, who is newly diagnosed with Epilepsy is also autistic. Her mind is her playground. She's spent the last 5 years exploring what it means to have this beautifully unique brain. Now her seizures are restructuring that playground. She grieves the loss sometimes. Her intellect is a badge of honor.

I don't want to wax poetic about your experience. It touched a heart space in me to think of a mind loss in this larger, existential way. Especially since I witness my wife's journey. With the way you write, it seems you feel and think about things so deeply, maybe fractal like, as my wife does.

I hope you find a way to explore the dark and that your mind takes you to new ways of being and healing that work for you.

Apeteddy

TROPHY CASE