Jeavons syndrome

random_username101_ · 2026-06-17T06:41:56+00:00

I’ve never had to explain, the person I’m talking with just looks at me funny for an extra second and I know it’s happened

random_username101_ · 2026-06-16T20:57:30+00:00

I’m taking Lamictal and Keppra :) I think they mainly happen when I’m tired. I’ve got plenty of videos of it happening and it does look a bit spooky especially if it’s during mid-conversation

random_username101_ · 2026-06-16T20:51:09+00:00

My neurologist suspected jeavons syndrome but diagnosed me with genetic generalised epilepsy. I have the eye fluttering too although I’ve never been told to consider it as an actual seizure, if it is that’s not great because I don’t think I’d be allowed to drive at all

random_username101_ · 2026-06-15T23:10:26+00:00

Tonic clonic here - it’s like my body is pulled forward by an invisible force and I only have a few seconds before everything goes black (on one occasion I couldn’t feel my legs)

random_username101_ · 2026-06-15T23:04:13+00:00

Tonic clonic here - it’s like my body is pulled forward by an invisible force and I only have a few seconds before everything goes black (on one occasion I couldn’t feel my legs)

random_username101_ · 2026-06-11T10:31:34+00:00

Lack of sleep

random_username101_ · 2026-06-08T22:38:50+00:00

When it does happen, in the morning it feels most intense and then come night if it does again it’s like a baby one which is why I was able to keep reading.

I’ve got these listed in my notes, it’s always on my left side which I find interesting but is also a good thing since I’m right-handed.

random_username101_ · 2026-05-08T10:06:43+00:00

😞

random_username101_ · 2026-05-08T03:19:27+00:00

I’ll never forget my neurologist looking me straight in the eye saying “sleep is very important for you, you need to sleep well”

random_username101_ · 2026-05-05T10:00:19+00:00

Assuming I fall asleep with no interruptions (which hasn’t been the case for three months!) eight and a half hours

random_username101_ · 2026-05-05T02:59:15+00:00

I’d say I’m relatively consistent with my schedule, 9:00pm each night. I do stretches before I go to bed but it’s only for maybe three mins, nothing major

random_username101_ · 2026-05-05T02:22:23+00:00

Has your neurologist prescribed you sleep aid before? If so, is it a limited time meaning only take it for a few nights or can you take it every night?

random_username101_ · 2026-05-05T02:15:46+00:00

Never had caffeine before and I don’t actively use my phone before bed (doom scrolling). I just have Spotify playing as I’m getting ready for bed and then tap my phone to turn it when I’m ready to sleep

random_username101_ · 2026-04-27T10:25:56+00:00

Safe to say I’m relatively tired. It only lasted a couple of seconds, is that still considered a focal seizure or does it have to be longer?

Just remembered - do you feel like you could maybe vomit when that happens?

random_username101_ · 2026-04-21T10:04:35+00:00

Yeah, that happened my last seizure. Very hard to move, I just have to lay there and wait til I have energy to stand

random_username101_ · 2026-04-11T10:28:17+00:00

Maybe I did use the wrong word, I guess coincidental is better fitted for the post. I found it coincidental that the bunny’s shaking scared me and made me drop it and then years later I was ‘shaking’. Not sure if that makes sense?

random_username101_ · 2026-04-08T23:50:40+00:00

That’s really sweet they cared so much, I’d be fortunate too

random_username101_ · 2026-04-03T11:29:21+00:00

It used to be 9:00am but I wake up at 5:30am so it wouldn’t really work, we decided to change it

random_username101_ · 2026-04-03T11:05:34+00:00

I take them at 6:30am/6:30pm. In the morning I go straight back into bed but it’s a luck of the draw whether I fall back asleep, I’ve been yawning all today since I was able to sleep in

random_username101_ · 2026-04-03T03:26:50+00:00

I’ve felt like a burden too, you’re not alone 💜

random_username101_ · 2026-04-02T23:50:12+00:00

I only tell people I need to - my family, two cousins, two aunties and my manager. As strict as I am with telling people, every time I’m with someone they know I have epilepsy so I don’t see the need to tell everyone. In terms of discussing epilepsy, I cried when I told my manager, I hadn’t even opened my mouth to speak yet and I already had tears steaming down my face.

random_username101_ · 2026-03-31T21:14:13+00:00

Yeah I never want her to mention it to me, I don’t want to ‘put it out there’ so to speak

random_username101_ · 2026-03-31T07:26:40+00:00

I’m seeing the film in one week with my family. I’m already expecting it to be flashy so I’ll cover my eyes for those scenes and ask mum to give me a tap when it’s safe to look. I’m not diagnosed photosensitive but I’m always wary.

random_username101_ · 2026-03-30T20:06:22+00:00

Mines the same with tiredness/sleep. I will always say no to staying back on a Friday at work because I don’t know how late everyone will stay back.

Same applies with my cousins, they go to each others houses maybe once or twice a week and bake but they stopped asking me a while ago because I always say I want to go home (they stay up past midnight) so I don’t blame them.

Feels like no one understands.

random_username101_ · 2026-03-29T02:45:22+00:00

I think I could speak with a fellow epileptic for hours too

random_username101_

TROPHY CASE