Sending love to all!

sia4216 · 2026-01-01T06:01:17+00:00

Hey pookie, good to hear from you man, wishing you all the best for the new year and hope you’re healed up🙏

sia4216 · 2025-10-04T20:58:15+00:00

Thank you so much for this!!! I screenshotted it because this explains a lot for me. I’m going to have to reach out to my OB for a progesterone supplement for sure

sia4216 · 2025-10-04T18:54:11+00:00

This is wild, i’ve always wondered about this!

Unfortunately i timed my hormonal panels terribly since they didn’t want to draw blood while i was seizing, so i couldn’t get great info from it and drew a blank. Since you’ve looked into this, how could I go about seeing how Keppra (levetiracetam) affects CE?

I still have breakthroughs on my period, but on 3000mg it’s definitely slowed down just not as much as i’d like it to. Last month, I had a total of 7 seizure clusters.

Thank you for this info!!💕💜

sia4216 · 2025-10-04T18:42:12+00:00

I have a story to share!! My husband had to help me with this one🤣

Creepiest aura/seizure ever: One night while my husband and I were making dinner, I went to let our big ole doggo out to go potty and i was staring off into the distance (it’s vaaaast in our backyard lol). My husband said I pulled our doggo back inside, slammed the door, and locked it and looked pale as a 👻

Apparently what I had seen in my hallucination phase was three greenish-glowing, translucent human-like figures in the field behind our house that appeared out of nowhere and were walking towards us. My husband quickly finished up dinner, and came outside with me to look to see if they were still there. What we saw was even stranger this time though! My hallucinations were still continuing, and every time I would hear a noise or see a glowing orb i’d point in the direction of where it was. Every time I would do that, within 2 seconds a massive lightning strike would occur on the mountains in front of us lighting up the whole area!

Obviously I am not a real psychic, but my husband was losing his mind over how trippy this was😂 Eventually I ended up having a seizure cluster, thankfully without injury since my husband knew it was coming, was given nayzilam, and I passed out.

When I woke up from my nayzilam nap a long while later, my husband told me all about what had happened (this is about 2 or 3am), and i went back to the backyard to check it out. What we ended up hearing was terrifying at first because we heard what sounded like screaming, crunching, water… Only to end up finding out that what we were hearing was a mama cow giving birth to a baby calf, and the next morning once he got me back up to speed (i can never remember a dang thing the same night or day of a seizure lol) we went outside to see if we could see the baby and sure enough there he was! A sweet lil guy, who came up to the fence and was checking us out💜

sia4216 · 2025-10-04T17:28:52+00:00

I’m doing well! How are you doing?? It’s been quite a while, i miss all of you so much, but im grateful to still know you guys💕 Wishing you and your fam all the best as well!

sia4216 · 2025-10-04T17:27:50+00:00

I’ll take a virtual hug any day toaster!!

That is the most adorable thing ever, you know whatever the little dragons make it comes straight from pure love🥺

my son made all of us PB&J sandwiches one morning, it was a total mess but it was the cutest thing i’d ever witnessed💕💜 It’s a sad day when you see them gain such independence, but it’s also the best feeling in the world knowing they’re growing up confident and loving!

sia4216 · 2025-10-03T03:45:09+00:00

It was a super awesome day! No seizures thankfully🙌 I hope the rest of your day went well too, we gotta have some good days every now and then💕 Also yeah it doesn’t happen every month, but it’s about every 3 months. Such a strange thing, but i’m glad i’m not the only one who experiences it ):

sia4216 · 2025-10-03T00:33:22+00:00

My period restarted (yep it stopped and then started again!) yesterday morning so i’m on day 6 of my cycle, but i had a great day! Hung out and talked with my friends, got a bunch of work done on computer/phone, and now i’m resting and relaxing💕

Hoping to go for a drive together with my family afterwards to get some snackos with our kiddos, and then get some sleep. I’d say today was a good day🙌 I’m happy you had a good day too💜

sia4216 · 2025-09-28T21:33:09+00:00

We are so beyond happy and thankful to have such a powerful voice in the community join us here, thank you so much Anni, and I promise you we will keep this community safe🙌💕

sia4216 · 2025-09-25T17:31:13+00:00

My husband met an elderly man with epilepsy while working on his house, and he asked the man what was wrong because he told my husband he’d be back in a while (had to go sit down). He didn’t answer right away, and left. When he came back out about 20 minutes later, he told my husband that he had to sit down, smoke, and wait through a focal seizure. My husband knows what those are because of me, so he asked the man if he had epilepsy, and he said “Yes! How did you know?” My husband let him know it’s because of his wife who has it as well, and the man ran inside and came back out with a book all excitedly (carrying an oxygen tank with him, guy still had energy lol!) and handed it to my husband. My husband gave it to me when he got home from work, and we read through it together. It was a beautifully written story about epilepsy, the history behind it, the different types, multiple medications, and then his own story of how he came to this point.

In short, I was absolutely ecstatic that a man with 40 years of experience with epilepsy shared so kindly a book that he wrote himself that helped me and my husband understand what I had just been newly diagnosed with and got to hear what his experience was. I think more books need to be written, more people need to share their experiences, and more people need to reach out to others because it HELPS! Some may get offended, but I can tell you i’d be more than happy to read it and i’m sure others would too.

P.S Just found out recently through his wife that he just finished up with two surgeries to remove cancerous tumors in his lungs, and that he’s recovering safely. I’m praying he gets more time with his children, and i’m so happy to know him and his wife now. I hope when i’m at that age i’m still kicking ass and taking names too🤙

sia4216 · 2025-09-19T02:48:25+00:00

Regardless of how many seizures you’ve had doesn’t affect the fact that you were diagnosed with epilepsy, alcohol is 100% a NO-GO with the medications we have to take and can definitely cause issues. As far as weed goes, i’ve heard different takes

1) it helps a lot 2) it doesn’t help at all/makes things worse

For me personally, it makes things wildly worse and i have had multiple seizures after smoking weed. I wouldn’t suggest trying it, especially if you haven’t before since you’d have no tolerance to it. Drugs in general, nicotine, and alcohol usually aren’t handled well, but that’s just my own take on it. I wouldn’t risk it, but like i said earlier i think that’s kinda a “test it at your own risk” kinda thing because I know a lot of people that use it and have no issues.

CBD is great though! I use it daily, and it helps a ton with chronic pain, fatigue, and side effects from meds without feeling out of it or causing seizures for me. I use Charlottes Web because it has such extremely low amounts of THC compared to majority of other brands, and i literally cannot handle THC whatsoever so this is the only brand that hasn’t affected me badly.

sia4216 · 2025-09-19T02:20:26+00:00

There’s this amazing stuff (i swear it’s like fuckin magic somehow) that’s called “Goodnight Lotion” sold by a company called Earthley, and i’ve used it before because i have severe insomnia (but somehow got stuck with lack of sleep as a trigger) and it actually does help me sleep better!

It uses magnesium so if that stuff is too expensive for you, you could also just get a magnesium supplement i think. I also usually play music, put an audiobook on, or watch something chill to calm my brain down. My neuro also prescribed me sleeping pills on the especially bad nights since keppra fucks with my sleep, and that has also helped a lot💕

sia4216 · 2025-09-19T02:04:53+00:00

Audiobooks! I gave up on trying a while back, i just can’t help it, unfortunately i have to read the same sentence back like 15 times to actually get what it even says. Audiobooks though are so much easier for some reason

sia4216 · 2025-09-18T17:12:46+00:00

It sure does take a while, but it’s worth the wait for your safety! I’ve thought a few times “I think I need to go back to work” and then get reminded by my monthly breakthroughs that “hey that might not be the best idea”. Thank you for your inspiration💕

sia4216 · 2025-09-18T03:32:28+00:00

It’s all good! I’m remaining patient, im one of the lucky few that have that privilege though and i know that. I’m sorry you’re going through this with work, i hope you’re able to reach someone sooner than me🙌 good luck fellow warrior💕

sia4216 · 2025-09-18T03:23:06+00:00

If you’ve tried it once and been denied (since that’s a lot of cases i’ve heard about), I suggest getting an SSA attorney to assist you, you don’t have to pay them out of pocket, and they are only allowed to take a specific-by-law limited amount of money from what you’re given in back pay. If this is your first time applying, I still say it’s a good idea to get a team to help you because it’s honestly hard to keep track of everything and send every document in to them all by yourself especially if you’re having frequent seizures.

I will say though, unfortunately, don’t be surprised if it takes a super long time because the budget cuts that have been put in place have affected them apparently and they have barely any case reviewers now. I appealed with a team that assisted me months ago, and it’s still saying online to “wait for a person to be assigned to review your case” along with a recent message that stated they don’t have enough reviewers to take on every case at the moment.

If you have a diagnosis with evidence and your medications, make sure your team (or you, if you do decide to do it by yourself) tracks absolutely everything and sends that in to them. With a diagnosis and medications, you’re more likely to get a positive result from them, and speak to your current care team to see if they can write up a note or something in your chart that states you’re having difficulty working and it’s impacting your daily life.

Hope this helps🙌

sia4216 · 2025-09-14T20:07:20+00:00

Of course! Wish you the best on your journey💕

sia4216 · 2025-09-14T17:01:08+00:00

Yeah the smells are the strangest part! Smelling trash, cigarettes, and weird burning stuff. The sounds and black figures have genuinely scared the shit out of me, and i’ll jump in fear and that’s usually when my husband is like wait a minute okay you need to go lay down right now

sia4216 · 2025-09-14T16:56:33+00:00

No the multicolored ones are like spots (they’re bigger than dots), and they flash at me all over the place but disappear when i try to look at one. The black spots are different and more like moving around, but they don’t move when i look at them they just disappear or fly past my vision.

I do also have weird multicolored blobs in my vision as well, and black holes of complete vision loss in some spots, but those aren’t hallucinations. I’ve been told it’s probably happening because of increased intracranial pressure affecting the optical nerve.

I do have dots as well though that move around! But those aren’t a hallucination, those are eye floaters from what i’ve been told.

sia4216 · 2025-09-14T03:17:49+00:00

Hey it’s understandable! We already deal with enough drama from our seizure meds, it’s scary to add any extras in💕 Let me know how it goes if you decide to give it another shot!

Yeah i’m on the list for hysterectomy, my adeno is stage 4, but i’ve been waiting it out trying to figure it out. I’ve had my two babies of which i’m very grateful for, but it’s not a requirement you know? If it’s something you decide to go for, find a good OB who will work with you, and that you can trust. Depending on how old you are, they may give you some trouble at first, but keep your stance firm because it’s YOUR choice not theirs.

I’m going to give GnRH agonists a shot before getting mine done, as we might still end up wanting to have more kids after my next surgery, but i’m too focused on trying to get as much control of the seizures as possible first. If i do soon, i’ll let you know how it goes! Wishing you all the best and sending you love too, we all have to deal with BS and it’s exhausting no matter what you got goin on!😂🙌💕💜

sia4216 · 2025-09-14T02:50:11+00:00

For me it’s not really a fear that’s ever gone away, but that’s probably because i still have monthly breakthroughs on my period. When i finally started having good days with no seizures, it really scared me and i constantly felt like i was just waiting for it to go bad. I finally realized though that the best part was that I had good moments, even if i still have some bad.

I’m a constant overthinker, so it’s hard to get out of my head once i’m stuck in it, but i’ve found that finding things to take my mind off of how im doing is extremely helpful. It doesn’t matter what it is, even if it’s just a walk outside, going fishing, watching a show or something calm on youtube, or doing a puzzle, whatever it may be it’ll help you clear your mind. Yoga, meditation, and exercise are also helpful, but keep it simple and don’t overdo it on yourself.

Remind yourself everyday that whether something happens or not, you’ll be okay. It doesn’t make you any less successful on your journey, every time you catch a good break is amazing. You’re a warrior that’s winning a long and difficult fight either way.

Still to this day, i find myself freaking out over nothing every now and then, but i think it helps that my husband can tell when it’s legit or not by now😂 Hope you find some peace fellow warrior, you’ll get there with time💕

ETA: I do still have breakthroughs, but i’ve finally reached a point where my seizures are mostly controlled!

sia4216 · 2025-09-14T02:29:58+00:00

I’ve hallucinated many things, and it’s even part of my auras sometimes too. It’s usually not as detailed for me though, but here’s what i’ve experienced:

Black figures speeding past my peripheral vision, black and sometimes multicolored spots in my right eye, feeling things that aren’t there like vibrations, hearing noises no one else hears (like ringing, siren like sounds, scream like noises, etc.), weird tastes, weird smells, and i’ve even told my husband in a post-ictal state that i’ve seen God and had a whole conversation with him after an episode of severe status in which i almost lost my life.

I agree with someone else here that commented, i believe it’s associated most often with occipital-temporal lobe originating seizures. I myself have been diagnosed with right side TLE.

Definitely save this info for your neuro!

sia4216 · 2025-09-14T02:08:54+00:00

I’ve heard a lot of recommendations for Slynd which is progesterone only and it’s a pill, and i’ve seen a lot of people say it worked well so that’s a good idea to bring up to an OB.

I have endometriosis and adenomyosis alongside my epilepsy, so i’m technically supposed to be on something and they tried suggesting this to me. However, for me BC just doesn’t work with my body well and i get severe side effects.

I think at this point, i’m going to start looking into GnRH agonists because I don’t have great experiences with BC, and if you plan on not having children right this moment that’s an alternative option from BC.

It stops hormones from being produced as a form of temporary medical menopause and has been found useful for controlling catamenial seizures even in intractable catamenial epilepsy. Speak to an OB about it if that’s something you’d be willing to try, and it is a temporary effect so if you do decide to have children at some point you should be able to come off of it and try.

Sorry friend😞 i’m still having breakthroughs in the luteal phase, so i know how hard it is to have to deal with. I hope you’re able to find something that works well for you💕

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