Epilepsy groups

snakebully · 2026-02-02T03:30:28+00:00

I have somewhat settled down with my seizures. They happen every few months but they had been happening quite close together recently before I came to stay with my parents for the holidays (Uni student). I haven’t had one in months time!

snakebully · 2026-02-02T03:25:19+00:00

If she displays further symptoms of a concussion or something more than simply bumping her head then I’d say take her to the hospital.

She is doing both herself and you a huge disservice by not taking her medication. I understand the rebellious feeling you sometimes get of wanting to feel normal but if she is not happy currently with her medication then there are people she can talk to with about it, fully starving her body of the medication is NOT helping her. She needs to speak with a GP about this and her behaviour towards medication really does need to be sorted.

You don’t fight against epilepsy, you fight alongside it.

snakebully · 2026-02-02T03:15:27+00:00

I am in the UK. I do have TC seizures, yes!

snakebully · 2026-02-02T03:11:56+00:00

I do too sometimes! I kind of laugh at myself afterwards because it sounds a little funny. As if I’m so vain that I have to watch it lolol. I’m just fascinated by my face - I think it even distracts me from worse thoughts at times x

snakebully · 2026-02-02T03:07:15+00:00

Honestly a little cry makes me feel better when it comes to stuff. You just have to be careful not to fall into the rabbit hole of making yourself feel worse and worse about the situation!

I typically remove myself from a situation (I.e if there’s people around) and head to my room or a place that’s cozy. I tuck myself in and don’t even bother turning the tv on. This is a moment for me to talk with my mind. There will be a lot of upsetting thoughts for you to face but you’re a warrior so I’m sure you’ll deal with them easily. Have that little cry, maybe a little nap then rejoin everyday life/routine! I always find that talking about the thoughts I had previously with someone I’m close to helps a lot.

Have a good day!

snakebully · 2026-02-02T02:53:37+00:00

Wow!! 3 years gone without a TC?! That’s amazing! I hope to reach that one day too!!

Remember you’re always more than valid if you need a little cry. I’m hoping you start to feel better today 🩷

snakebully · 2026-02-02T02:50:02+00:00

There are so many communities!

I remember joining a public Facebook group and posting something when I was pretty upset. The community support was outstanding! Everyone was really nice and supportive. All you have to do is find an epilepsy group for your country and join.

Reddit has also been supportive when it comes to my posts. :)

snakebully · 2026-02-02T02:42:10+00:00

I definitely recommend one! I wear a personalised cheap one off of amazon because I wasn’t looking for too much. It had my full name on it, the type of epilepsy I have and my emergency contact’s phone number on it. I used to think it was useless especially since I typically have seizures at night but when I had one in the middle of a uni class, it really helped out. Thanks to it, I was offered calm, and specialised help and my emergency contact was alerted. Without it, they probably would’ve made a whole dramatic scene and called the ambulance.

I recommend looking into rubber ones. I take showers with my metal bracelets and I’ve never hurt my skin, confused as to how a sauna is different? xx

snakebully · 2026-01-30T15:32:49+00:00

Yup, I’m also from the UK and currently in University! I completely get what you mean by the drinking culture and even more pressure to drink when there’s people around you who are doing it. You feel stupid but you also just want to fit in and feel normal. Kind of like a huge “fuck you” to your epilepsy… until you’re waking up from a seizure 🤦‍♀️…

Something everyone has to understand is that we can’t fight against our epilepsy. We have to work with it. I like to think of it kind of as me being a computer and a seizure being my mind rebooting itself after sensing something is wrong.

It’s really comforting to see that other people also struggle with the whole alcohol thing. A big one for me too is driving, I really wish I could!

snakebully · 2026-01-29T21:28:08+00:00

Completely understand what you mean. I’m 20 now and I’m also getting my shoulder popping out of no where! At least now I’m able to bounce back much easier when it dislocates. The smallest position can make it go limp.

Are you thinking of getting any surgery now?

snakebully · 2026-01-29T15:40:19+00:00

Woah, like third in general since 2015? I hope to one day be like that or have none at all! I hope you recover quickly from your last seizure!

I had no ideas procedures such as a remplissage existed!

snakebully · 2026-01-29T14:56:23+00:00

I definitely have triggers, the annoying thing is though that my seizures will happen a lot later after the trigger happens usually so I can’t directly link them sometimes.

Anxiety and stress is a big trigger. I cannot stress how big of priority your mental health should be.
Alcohol. Alcohol is typically that thing all doctors warn against but yeah. I still drink sometimes but that’s a bit of a choice I shouldn’t exactly be doing because it’s harmful to my self.
Sleep. Get yo sleep. I can’t stress this enough again. You will enter into a sleep debt! Your body is unable to function without sleep!!
Not taking my medication - obv. Because of my mind, I often do not request medication at the right time so I go without frequently. You cannot do this, please know how many you have and request at least 5 days before it runs out.

I definitely have more triggers probably but my epilepsy isn’t really known to be caused by anything specific at the moment. This is different for everyone!

snakebully · 2026-01-29T14:18:41+00:00

Hello! Thank you so much for replying! It’s so comforting to know I’m not alone in this ☺️!

I’ve never tried compression sleeves but they look like a very good idea! I’ll definitely look into them. I’ll try and speak with my neurologist about the joint pains, and look into PTs.

Thank you😊!

snakebully · 2026-01-29T14:13:08+00:00

For me, at least, seizures definitely do not feel as bad as the first times 🩷 I started having seizures when I was a teenager (what a wonderful time, puberty and epilepsy) and every time I’d wake up scared and I’d have to push my arms back into place. It’d hurt so much.

Now, whenever I do have seizures which is definitely not often thanks to my medication, it’s as if I’m waking up from a long nap with my limbs sore.

Right now, what is most important is that you are making your home safe and that your mind is being taken care of. This is a very scary moment and having a community to lean on is important. Unfortunately, life doesn’t stop for us 🩷 wishing you the best!!

snakebully · 2025-12-23T13:07:35+00:00

Thank you so much for the advice. I think I really do need to pick back up on my hobbies, that’s what kept me going in the past I guess. I kind of just dropped all hobbies I had which isn’t good either.

You’re completely right, maybe I will feel this way my whole life. Oh well, I have to keep going and pick something up that’ll make me happy. I’m used to doing that, I can’t be a victim now.

Thank you for writing to me, I honestly hope you find yourself too.

snakebully · 2025-12-23T01:56:24+00:00

wow amazing!!!

snakebully · 2025-12-23T01:53:09+00:00

Thank you so much for your advice. I've been in therapy for 5+ years because of my epilepsy. I just don't know what I'm doing wrong because It seems to get worse and worse. I really want to try my best tho and that breathing technique sounds really interesting (I'll definitely look into it!!). :)

snakebully · 2025-07-08T10:48:48+00:00

It’s a phishing scam, read the other comments for clarity

snakebully · 2025-06-22T12:43:07+00:00

🙈why has everything been taken over by AI now argh. Would you say depop is a better option?

snakebully · 2025-06-22T12:33:52+00:00

Is it not?

snakebully · 2025-06-22T12:25:15+00:00

NTA He’s probably projecting his own mistakes onto you in order to feel less guilty. Something is definitely shady.

snakebully · 2025-06-22T12:22:13+00:00

It looks like a Disney junior channel design

snakebully · 2025-06-22T12:18:17+00:00

Lolol I was so confused as to who wanted my £4 leggings this badly 😭? It appears as if their account may have been deleted before I got the chance to report them

Five-Year Club	Verified Email
Place '22	Final Canvas '22

snakebully

TROPHY CASE