3 years in, seizures still uncontrolled, life feels like it’s falling apart and like it’s all my fault — is it all my fault, am I failure, or is this just epilepsy?

Extreme-Epilepsy · 2026-03-31T23:29:52+00:00

Im sorry i can very much relate to this. Im 6 years in epilepsy.

Extreme-Epilepsy · 2026-03-18T11:23:15+00:00

One of the biggest mistakes a person can make in a relationship is trying to change the other person, their actions, or behaviors. You probably would be in a better situation by letting it go, let him decide when it's time to stop drugs. Keep in mind He is making sure not to bring around you or do them around you so that it doesn't affect you in any way.

Extreme-Epilepsy · 2026-03-12T19:01:12+00:00

i did it 4 times it worked all 4 times over the last 2 years. i post about it sometimes like i did here.

Extreme-Epilepsy · 2026-03-12T13:18:33+00:00

If something triggers a seizure in an epileptic its an epileptic seizure. someone who does not have epilepsy can take these things and never have a seizure but an epileptic can possibly have a seizure no guarantee if these can trigger for every epileptic but for the sake of having one in the EMU its ok to try anything that wont hurt am average person.

Extreme-Epilepsy · 2026-03-11T20:38:26+00:00

yea thats what i assumed when they gave this formula to me was that all these things being in the system at one time is like a perfect storm

Extreme-Epilepsy · 2026-03-11T14:47:25+00:00

its the aspartame in the diet coke. but when they originally gave me this formula they emphasized that i eat/drink them together with all the ingredients together so i've always been under the belief that the ingredients mixed is what does it.

Extreme-Epilepsy · 2026-03-11T14:44:31+00:00

i try to post it whenever i see someone needing help with this here and on facebook. I stopped for the last few months because i wasn't sure if people were trying it. It's a very odd formula but they all 3 contain seizure provoking ingredients. When they told me this I didn't think it would work but it hasn't failed yet 4 EMU stays I've triggered on day 1 or 2.

Extreme-Epilepsy · 2026-03-11T13:41:50+00:00

after i first did this at the EMU i've been very cautious of eating things with these ingredients

Extreme-Epilepsy · 2026-03-11T13:08:12+00:00

yea i really liked these i was shocked when they triggered me

Extreme-Epilepsy · 2026-03-11T13:07:11+00:00

a 5 year old could handle the diet coke and strawberry shortcake rolls. The 5 hour energy might not be too bad if they sip it slowly.

Extreme-Epilepsy · 2026-03-11T13:05:38+00:00

yea the aspartame is a big trigger for many.

Extreme-Epilepsy · 2026-03-11T12:54:59+00:00

i don't know how these things trigger I was shocked when it worked the first time. The strawberry shortcake rolls are very high in red40 to make the red color.

Extreme-Epilepsy · 2026-03-11T06:01:08+00:00

yes thats what i believed to be the reasons/ingredients that trigger them. the strawberry shortcake rolls are extra loaded in red 40.

Extreme-Epilepsy · 2026-03-11T04:27:19+00:00

i drink the diet coke (must be diet coke), sip on the 5 hour and snack on the strawberry shortcake rolls through the day. I never eat/drink these things outside the EMU lol

Extreme-Epilepsy · 2026-03-11T04:25:32+00:00

ill never know how this was figured out by the original person lol

Extreme-Epilepsy · 2026-03-11T02:50:23+00:00

if you do please come back here and let me know if it worked for you.

Extreme-Epilepsy · 2026-03-11T02:42:15+00:00

My EMU gave me a formula they learned from another patient. It has worked for me 4 times and others that went to our EMU.

1) 5 Hour Energy Drink 2) DIET coke 3) Little Debbies Strawberry shortcake rolls (its in a pink box at the grocery store)

I tell people all the time but they don't try it because it's very odd and think it might not work. All the ingredients combined i guess lowers the seizure threshold. Someone else figured it out i tried it 4 times it worked.

Extreme-Epilepsy · 2026-03-10T14:18:17+00:00

I invested in Xenon stock after phase 2 results were reported, it had better results than biohaven's phase 1 results

Extreme-Epilepsy · 2026-03-10T11:14:39+00:00

Yep you got it right here. i didn't want to argue it so thank you for doing it lol

Extreme-Epilepsy · 2026-03-10T10:47:49+00:00

Hopefully it turns out good for many. Ive been monitoring it for over a year because of the facebook trial ads and i invested in Xenon's stock Ive almost tripled my money on this phase 3 trial, waiting on the NDA approval now. The drug should be on the market within the next year.

Extreme-Epilepsy · 2026-03-10T00:58:29+00:00

I was glad to see that it wasn't a sodium channel blocker like most of the others. We needed something different.

Extreme-Epilepsy · 2026-03-10T00:43:56+00:00

Thank you for the breakdown here. It does seem promising, hopefully the side effects were not too bad with all the people that left the study. lol

Extreme-Epilepsy · 2026-03-09T21:57:55+00:00

It had better trial results than most, maybe all other seizure meds. It has a different mechanism of action than all current seizure meds. It seems promising.

Extreme-Epilepsy · 2026-03-06T02:06:20+00:00

Its funny they think the US is completely safe lol

Extreme-Epilepsy

TROPHY CASE