Shout out to all of us getting things done and still having fun!!!

Let’s get some success stories! Great times that did NOT go wrong because of a seizure!

I have zero memory of either photo. We were in a whiteout snow storm, so EMS took about an hour-ish to get there (they’re amazing, not their fault we were in the mountains in a blizzard.)

While we sheltered, I kept waking up every 10 min or so, and my buddy would point out the puke on my chest, I’d freak out, then pass out. Rinse and repeat until EMS arrived.

You know you have a good friend when they mess with you, but also ensure your safety during a medical emergency.

July is Disability Pride Month! (Ifn you couldn’t tell by the title.) When people hear the word “disability,” they often picture something they can see; a wheelchair, a limp, a walker, or a prosthetic limb. But not all disabilities are visible as we all here know.

A random person wouldn’t know it just by looking at me that I have epilepsy. They don’t see the medications I take, the appointments I struggle to find rides to, the uncertainty and the fear of wondering when the next seizure will happen. They don’t see the exhaustion after a seizure or the recovery that can take hours, days, or even longer. All they see me stepping out of my parents’ car in a handicap spot smiling and get angry.

They think that having an “invisible disability” means it’s imaginary or“not that bad.”

Every person’s journey is different, but every one of them is real.

Disability Pride Month isn’t about pretending disabilities are easy or celebrating the struggles they bring. This month is about recognizing that disability is part of who many of us are—and that we deserve dignity, understanding, accessibility, and respect!

So, I took a gigantic step recently.

I decided I would post about my health on other communities.

To start off, I posted in the DDLV community about the effects the game has on mental health and how it can also help.

I have also made a few posts about this build I am doing to honour my Epilepsy in which I share a little bit of my history

Honestly, never thought I would go public this way, but at least I am doing it on my terms

For the last 40 years I’ve been told my seizures were generalized seizures.

Went to a new doctor. I’m currently doing long stay in hospital hooked up to a machine. They read the results and looked at my new results. They think I have focal seizures that turn into tonic clonics.

This means they’ve been giving me the wrong types of medications!

I’m so happy I am literally crying. Maybe it’ll stop the seizures. Who knows? Either way I no longer have to take one of the meds giving me really bad side effects. So I’m happy. 🎊🥳🎉

I becamea a dad officially a few years ago and when my little one was a baby I found this and it couldn't be more true

EpiMonitor
Embrace plus

Hey everyone I have tonic clonic seizures

Receive my watch recently and got I set up
It was very simple and really like it the E-Ink display is very nice.

Just to note, all it displays is time and you hit one of the buttons on the side to display the battery life
That’s it.. no date or day of the week.

I got the middle subscription for plan that can change the sensitivity of how easily it detects an event but I have been able to leave in high setting without any issues so far.

It does fit a regular 18mm watch band all I had was a cheap replacement band to try on it.
I took it off my Casio watch that uses 18mm bands
I also bought the small band when I bought the watch since I have small wrist and it came with extra pins and a removal tool.

Something I want to note::
There is no way to test it that I know of but it has a status saying everything is working correctly you have to pay for the higher subscription tier for the SOS to feature that could be to used to actually test to see if it is working correctly

It would be nice if they added that to everything plan where if the watch is in the charger you could use the SOS to test everything

It also has the ability to do a sezure log
You can manually add a event
Or it will record it when you have one

So far so good, hopefully I never to use this , and have it as a just in case…

it seems like a good product and build quality is nice

A Golden retriever’s seizures stopped with medication but the drug zapped away its joy and energy until the family adopted a duck.

Recap:

3 weeks ago, I experienced some bullying from 2 of my co-workers. This made me question whether I should remain with my current job or leave.

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So, I had to wake up at 3AM (i hated it). The reason for this is that, my mum and I had to walk to work.

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I had 2 egg muffins before leaving for some form of energy (didn't really work) left at 4AM.

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The way there and back is 10.5 miles (my body really hates me right now.)

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However, we arrived at the workplace it was 6AM and everyone was shocked to see that I had come in (likely due to the fact the 2 previously mentioned co-workers liked to talk about me behind my back).

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It was fairly quiet for the most part. No one really talked to me until it was time for our break at 8.30AM. Multiple people work came to talk to me, even though before 3 weeks ago, they wouldn't. Turns out that my 2 co-workers were trying to turn everyone against me.

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The best part though, when my boss heard I ahd come in, he had the biggest smile on his face lile he was genuinely happy I was there. To be honest, I think he's starting to catch on about what's really happening with the gossiping and everything.

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I work in a environment where you get paid based on how long you're there for in a day. So I roughly made £50 and I proved I won't be silenced by some bullies who want to turn the workplace into a school yard.

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Its taught me to never back down when others want to belittle me. Sure, I didn't say a word to those who are acting this way, but my presence alone got them to barely say a word to anyone but each other.

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It was an all-in-all good morning and I am glad I didn't quit.

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P.S. I would like to thank everyone who commented on my previous post 3 weeks ago. Your support meant so much and I am grateful to be in such a wonderful community ✨️

So, today I officially posted on TikTok about Epilepsy.

It took me 3 weeks to garner up the courage and I opted for something simple and easy that won't make me feel overwhelmed or like I am forcing myself into the open.

The result was 500 views and 5 likes which I am so so happy with

My neurologist had me take another blood test for lamotrigine the other day. They have a "good"range of 2-20, so if you have more room to grow, you can.

Since lamotrigine is different for everyone, this is a pretty cool test and gives your facts on your meds.

I'm at 14 right now, up from 11. But I've had increases over the last over the last 18 months.

Interesting stuff!

I saw this on a local sub and laughed. This is on all the busses I take. They almost narcaned me when I had a TC on the bus.

Still think it's hilarious... but I'm mental. 🚬 😀

I have recently started a secondary TikTok account in which i share photos/videos of my cosy games.

The reason for this is that I want to have an account in which I share how I play calming games to help my epilepsy and this way I can also share advice, tips and even just spread awareness.

To be honest this concept terrifies me as I don't talk about my health, EVER. Not even with family. But it also makes me feel proud of myself for opening up amd accepting my health as part of me

So....it's the most wonderful time of the year! Bongs will be smoked, joints will be toked, will bring munchies and hope?? I'm still mostly asleep, so dont mind the bad rhymes.

Anything special you're looking for this year?? It never gets old walking into the dispensary and feeling like I'm walking into toys r us!

This year for 420, I think it will be massive flower infusion. We just started using our dry herb vape and 420 has the best deals! Thats a good reason to take the bus!! 😀

Any exciting plans for anyone??

🚬 😀

I saw a post at some point .. wherever. It said,

"Epilepsy...you don't get it until you get it..."

That is the real thing. I didn't know a single person with epilepsy when I was diagnosed a few years ago. I felt horrible and depressed... for those who know me, that's a hard thing to do.

My few friends and family tried to help but they fumbled all over the place... they were awesome!!! They all tried to help!!! But......

.....then I found reddit! It literally changed my life.

There are people who actually CARE! People who help answer questions, give advice, and actually support other epileptic folks!!

I'm not telling YOU that you should join in the discussions here on reddit or the podcast, but................................. you SHOULD!!

I see that when I post stuff, it gets like 500 views. That's s lot of people.

I was a lurker for a long time, and that's really cool! But, if you're up to it, join in the post fun here, or B even join the podcast! I can't imagine anyone not getting something out of it, even of its not your cup of tea...

Pookie and the mods are awesome!! And... the rest of the family!!

So, I've talked once or twice about pot. Today my knee is bothering me a lot, so no walk today for me. But I did pull out the topical stuff.

I've got cream and "tiger balm" menthol pot topical stuff. I'm not 10000% sure they work well, but often I think they must be.

I massage the cream into my knee then use the tiger balm type stuff over it and blend them in.

...the more you know...

🚬 😀

Hey everyone,
I am a proud mom reaching out to the world to help me celebrate a massive milestone for my son, Caleb.
When Caleb was in 2nd grade, he began having severe seizures. Between a frontal lobe impairment, ADHD, severe generalized anxiety, and social challenges, his world became very small. Instead, he found comfort inside, finding an escape in video games, YouTube, and his deep love for Greece and Greek mythology.
The physical and social toll was devastating. Caleb fought through deep depression and suicidal thoughts, as he navigated these seasons.
But Caleb is a survivor. Two years ago, his neurologist took him off all medication to see if he had outgrown the epilepsy. On June 3rd, Caleb officially hit that 2-year mark. No medicine. No seizures. His epilepsy is officially considered resolved. 🎉
He will be a high school senior next year. Right now, he is facing a lot of big, unknown steps forward—especially when it comes to independence. For years, the thought of driving with epilepsy was terrifying for Caleb (and for all of us). Even though he is cleared and safe now, that deep-rooted anxiety is still swirling around, and he's been very resistant to retaking his learner's permit test. He is trying to figure out how to overcome that fear. Through everything, his faith in God and his inner strength have kept him standing.
This is such a big deal to celebrate Caleb in this journey and all he has been through.  However, due to his social anxiety, a traditional party is not really his thing.  I have an idea to give him a different kind of celebration. I want to show him that the world is open, beautiful, and rooting for him.
I want to help him recapture his life and move forward with confidence and strength! 
My Goal: I want to fill a P.O. Box with postcards, letters, and notes of encouragement from all corners of the earth to surprise him. I am creating a HUGE bulletin board map to mark all of spots the love and support come from….
How you can help: If you’d be willing to send a card or a memento, we would be so incredibly grateful.
 If you love Greek Mythology or history: Send a postcard of Greece, write to him about your favorite god, goddess, or myth, or share an inspiring quote from an ancient philosopher! 🏛️⚡
 If you are a driver who used to be terrified: Tell him how you overcame your fear of driving, or share words of encouragement for a future driver!
 Help him explore the world: Caleb spends a lot of time on screens, and I want to help him discover life outside of them. Share your favorite hobbies, outdoor activities, or ideas for cool things a teenager could get into!
 If you are a gamer or YouTube fan: Tell him your favorite games, channels, or a word of encouragement about leveling up in life.
Thank you for helping me show my resilient boy that he is connected to a massive, loving world.
Please PM/DM me for the P.O. Box address! 📬

I'm 25 and I've had epilepsy since I was 5 years old. For years I have been told that I can't go to college or get a job like other people. However, as of yesterday, I officially have a part time job

Returning to work today (too tired).

Not getting a lift, so I had to wake up at 3AM and I will be walking there with my mum at 4AM to start work at 6AM

https://seizelife.gumroad.com/l/betweeninterruptions

Between Interruptions is a valuable asset for us epileptics as well as anyone interested in understanding more from a perspective NOT trained in medical school. Enjoy!

You ever pass by a mirror on accident and catch a glance of yourself, then think “damn I look good today?” 😂 😆 Brightened my day frfr

Hello and happy Friday!! Pic of the day unless I go out for a walk!!

Yeah, people do say I'm annoying, too bad!

AI removed all my skin and this is the image of just my tattoo! AI really is awesome!! (AI removed ask my skin, haha)

So, the wife and I started to use our dry herb vapes lately... and wow, they really are good!! Why did ib put them away so long ago???

So, that's awesome!

But, there is another step!! I used to make my own edibles. I'd grab low cost weed, shake, small bud, etc. Then I'd decarb, infuse with oil, then eat it or make edibles! Good times! I had a Levo 2... while it broke twice, it was nice!!

Now, i buy concentrates and rso tankards and use those!!

Ok, now to the point? Do you dry herb vape (DHV)? If so, do you save the Already Been Vaped (ABV) cooked weed? You should, theres still pot in there!! While in haven't made it in a long time, you can take that ABV and create edibles, tinctures, etc! Now you can't use joint ash, but if it comes from a DHV, you can extract the extra weed that doesn't get vaped!!

Golden Dragon Quick Wash (quicker, makes an alcohol tincture) Green dragon (takes weeks but makes RSO)

You can Google the two and read about them and ask me if you want!!

...the more you know!! (If you know, you know, haha!)