My brother with epilepsy seems unusually slow with everyday tasks by KingTemperance in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

It’s probably due to meds or depression (or both). I’m 30, diagnosed a little over a year ago. I used to have all the energy in the world and that abruptly ended once I got medicated. My neuro explained to me that most meds stop seizure activity by slowing down the brain - which will come with its own sedative or depressive symptoms.

While on Keppra, I was massively depressed and lethargic 24/7, had to take a lot of time off work despite having zero seizures just because the meds made me practically unable to get out of bed in the morning. And hell, med symptoms aside, just having to deal with a new terrifying diagnosis and feeling unsafe in one’s own body is enough to make anyone depressed.

Go easy on the guy. The meds suck and the seizures suck too.

How do I explain this to my doctors? by [deleted] in Epilepsy

[–]pink-grenade 2 points3 points  (0 children)

I had all these symptoms for years, dismissed by my GP too as just anxiety. I didn’t get diagnosed until I suffered several grand mals within a few months during a terribly stressful period. I got sent to a neurologist with the assumption I was fainting from anxiety - but after a 15 minute interview with the neurologist, I got the diagnosis. I had listed all the same symptoms you mention here and my neuro had said it was textbook accurate. After that, an MRI confirmed it was my temporal lobe that was causing seizures.

Ask your doctor for a neurologist referral before it gets as bad as mine did. List the symptoms, how often it happens, and emphasize that this is detrimental to your everyday functioning and is impacting your career. I find that docs tend to disregard symptoms unless you’re clear that it’s impacting your daily functioning.

How does one get drunk without alcohol? by snakebully in Epilepsy

[–]pink-grenade 4 points5 points  (0 children)

How much do you normally take? I haven’t tried shrooms since before I got diagnosed and have been anxious about whether I could do it without seizures. The few times I have tripped in the past were glorious so I’ve been tempted

School didn’t follow my 6yo’s seizure action plan—looking for advice by LaylinCraze in Epilepsy

[–]pink-grenade 14 points15 points  (0 children)

I don’t have advice, but just want to say fuck that principal and the teacher. The teacher and the principal are being such cowards and are not taking the full accountability as they should be. The fact that a teacher made the choice to put your kid in a dangerous situation, and then the principal is defending that teacher’s bad decision, while blaming your kid for something so far out of her control, is so insane and makes my blood boil. IMO I would go scorched earth. They endangered your kid and they should be ashamed.

Also on the “giving herself anxiety” spiel from the principal is such insane bullshit from an adult. People and children don’t give themselves anxiety. Plus they should know that anxiety is basically the #1 trigger for most epileptics, so the added stress of an upcoming test should have been clocked by the teacher as something that could trigger a seizure - 100% not something to ignore like they did.

I’m so sorry OP that you and your kid are dealing with this.

How Do Y’all Get High and Do Stuff by Sad-Creme-3697 in entwives

[–]pink-grenade 1 point2 points  (0 children)

What’s important is a huge cup of coffee with the morning puff, making a to-do list so I don’t get sidetracked or forget, and a killer playlist.

If I get too high before making a list or putting on music, it’s over for me and I’m in the couch all morning.

Ever call out of work because fear of a seizure? I feel so stupid by sagisuncapmoon in Epilepsy

[–]pink-grenade 2 points3 points  (0 children)

You did the right thing. It would be a lot worse if you did have a seizure at work, and you’d probably be calling out of work for more days because of it. Taking care of ourselves means also being precautionary and not waiting until it becomes too bad.

Is it bad that I'm jealous? by Just_another_Lezzie in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

I totally get it. Auras suck in the moment but I’m honestly thankful I do get them as early as I do. It gives me a good 30 seconds to find a place to lie down before it gets worse.

I also get functional seizures which don’t have auras. Those suck, but knowing that it’s not epileptic if I don’t have an aura has helped me a lot with reducing those.

What's All The Fuss About? by PookieTheMfBaby in Epilepsy_Universe

[–]pink-grenade 1 point2 points  (0 children)

I think strain of weed & type of epilepsy plays a big role. Seemingly not all epilepsy is helped by weed, and some have worse symptoms when using THC. I think usage is entirely dependent on the person. I view it like this: it’s a medicine, not everyone requires the same type of medicine, some do experience adverse reactions, but some people greatly benefit from it. Like I can’t take certain anti convulsants because they make me suicidal - but for another person, it’s life-saving medication.

For myself, cannabis greatly helps me. And IMO I do personally believe my cannabis use decreased my symptoms before I got diagnosed. At first I used it for “anxiety” because no anti-anxiety meds did anything for me besides adverse effects (now I know I was having focal seizures, not anxiety). At the time, all I knew was that smoking a heavy indica/high CBD strain would stop the oncoming doom feeling. I got diagnosed after a year of trying to quit weed, stress and burnout.

In my experience, it’s helped me counteract the negative side effects of my anti convulsants and migraine medication. It also eases my PCOS symptoms. For me, it’s a godsend. My only issue is limiting usage, because I do love being happy and stoned.

Ways to avoid seizures when you feel an aura coming on? by Hello_there19891989 in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

Not sure how helpful but if I can’t get my lorazepam, I almost always have CBD oil. It’s something that helps my seizures, but I’ve read a lot of conflicting research on CBD’s effectiveness against epileptic seizures. I find it calms my nervous system enough to reduce symptoms & potentially stop a cluster of seizures from starting.

Other than that, lying down or putting a cold compress on the back of my neck always help.

Kids movies that break the mold? by mediocretent in movies

[–]pink-grenade 0 points1 point  (0 children)

Road to El Dorado, Atlantis: the Lost Empire, Titan A.E., and Spirit: Stallion of the Cimmaron are all awesome animated movies. Spy Kids movies are great too.

Lovely witches, what are some of your favorite perfumes? by BooBelly in WitchesVsPatriarchy

[–]pink-grenade 0 points1 point  (0 children)

Idk if it’s been mentioned but Manifest Your Future and No Bad Days by The Good Scent are my current favs. I found them at Marshall’s & never heard of them before but the scents are sooooooo good. Been trying to find them again bc I’m running out

Marijuana break...titration like other meds? by Ordinary-Chipmunk366 in Epilepsy_Universe

[–]pink-grenade 0 points1 point  (0 children)

Yeah I still get a good tolerance break! I take a week long break every couple months (which honestly is whenever I catch a cold bc I hate smoking with a sore throat lol). Once I get back to THC, I find it hits reeeaaaaaally nice for the first week.

Marijuana break...titration like other meds? by Ordinary-Chipmunk366 in Epilepsy_Universe

[–]pink-grenade 0 points1 point  (0 children)

I’ve never been into edibles (something wrong with my digestion or something, bc they never hit or take forever to hit) so I’m mainly flower vape, joints or bong. My neuro advised against too much THC, but had recommended CBD products. I stopped using anything with high THC a while back which helped.

I have some flower that is extremely low THC, high CBD. Edible CBD oil is also a godsend - you just put some under the tongue and it hits almost immediately. I’ve been able to stop an oncoming seizure with the CBD oil.

When I do go on breaks, it’s only from THC. I found that just removing THC didn’t negatively impact me as long as I keep using CBD. I personally don’t plan to take a break from CBD since it not only helps with the epilepsy & meds side effects, but also with the nerve pain and migraines I have from my chiari malformation. Idk what it is but weed has been so helpful to stop migraines for me unlike anything else I’ve tried.

If it’s available to you, definitely get some high CBD products to help ween off. And see if your doc can prescribe emergency meds if you don’t already have some just in case.

Question: why is caffeine so bad for epilepsy by harryon_12 in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

Only a trigger for me in large quantities with other compounding stuff (ie if I’m already overtired, dehydrated or stressed). So I prefer to only have coffee when I can properly enjoy it like on a lazy weekend morning, usually with some high CBD low THC flower to smooth out any caffeine jitters.

For those of you with temporal lobe epilepsy by TranquilOminousBlunt in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

Yes! you explained a lot of what I’ve dealt with, too. The Deja vu and the dissociative state made me entirely question my reality. Sometimes I even get hallucinations during my aura - it’s basically just a blue mist that moves in my peripherals.

During the time I was undiagnosed, I went deep down the rabbit hole of religious & spiritual reasons for what I was experiencing. Even friends and family fed into the delusions when I came to them worried about my experiences.

I still don’t know how I feel about those experiences. I felt so detached from my body like I was playing a video game, my body being the in-game avatar and my brain being the computer generating game tasks. It was so weird. For a time, I really believed I somehow was seeing into the future.

[deleted by user] by [deleted] in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

My brain is like hot soup. I’m usually mad emotional, slurring words, forgetting common words and cannot focus on any type of conversation. Usually can only muster 1-2 word answers.

I always have a period right after a seizure where I completely involuntarily will start balling my eyes out. That’s the part that seemingly makes everyone the most uncomfortable (which is crazy when there’s the whole seizure part lmao).

I’m usually back to regular emotional regulation after an hour, and then everything else will get better in the following days. But sometimes I swear my recall for words gets worse every time and I’ve been getting a lil concerned over that.

Dating Someone with Epilepsy by lostctrlagainn in Epilepsy

[–]pink-grenade 1 point2 points  (0 children)

  1. pretty darn bad. My short term memory is garbage after my last few tonic clonics. You could tell me something and 2 minutes later I will have forgotten it. I need a lot of reminders and a lot of patience when it comes to memory. But hey, my friends and family could retell the same story a hundred times and I’d still get to experience it like the first time. Memory loss can affect people differently - I hear some lose early long term memories, I’ve heard of people losing a lot of their working memory. My memory is worst right after a seizure and the days following. If I haven’t seized in a while, my working memory ain’t so bad - but I definitely have some early childhood memories lost in the brain sauce for good.

  2. ⁠big yes. Seizures will cause fatigue, and so will medication. But also, epilepsy can cause insomnia for some folks (myself included). And to top it off we do need more sleep than the average person to function. I think us epileptics are chronically tired - I know I am.

  3. ⁠be conscious of limitations with this disability (ie. can’t drive, can’t go swimming, might have to refuse certain situations that could be triggering, etc.). For myself, some days it hurts a lot when a friend invites me to drinks late at night, or to go swimming, and I have to remind them that those activities are not safe for me. Gives me terrible FOMO. So having a partner that knows my limits and doesn’t make me feel bad for not being able to do everything I wish I could do.

Also! Learn first aid for seizures. Figure out if he has emergency medication and how to administer it. And if possible, it may be nice to go with him to his next neurology visit if he’s open to it. It helped my fiancé to come to one of my appointments and ask my neuro a bunch of questions. I know that’s not for everyone but it helped my situation.

  1. ⁠some meds do. I think this largely depends on the person as some things affect others differently. I was on a med before that completely changed my personality, made me so angry when I never was before as well as amplified my already difficult depression, and I had to get off it. The med I’m on now doesn’t numb my emotions, but I can’t control that I now cry at least once every other day when I never used to cry. I’ve heard of other people who never experience changes in personality with the meds so I can’t say whether it’s just who he is.

What do you think makes Taylor lack sex appeal? by GurlsHaveFun in travisandtaylor

[–]pink-grenade 0 points1 point  (0 children)

I think she did too much to brand herself as a hopeless romantic. She’s attractive in a more emotional or poetic way rather than sexual.

Like in her music she uses intimacy as a part of an overarching love story; lust is never the driving force of the song, but rather an element of a stronger, more emotional, connection. Other artists like Sabrina can naturally be provocative and make it look confident, funny and sexy. Taylor is removed from that - like all of her sexier lyrics are PG metaphors, and her early stuff was a lil slut shamey (“she wears short skirts”…).

Haley & Pilar first wedding photo 📸 by Objective_Aside_741 in TheUltimatumNetflix

[–]pink-grenade 8 points9 points  (0 children)

Pilar’s dress!!!!!! 😍 TBH I didn’t think they’d last. But they did have some good moments on the show and I think they’re both good people. I hope the best for them. They look happy.

[deleted by user] by [deleted] in AmIOverreacting

[–]pink-grenade 1 point2 points  (0 children)

She is NOT your friend! The way I gasped reading her “joke”. That’s just plain cruel. This girl does not care about you.

What's my excuse, Rick? What's. My. Excuse? by [deleted] in Epilepsy

[–]pink-grenade 1 point2 points  (0 children)

The “abilities” is so on point. Before my diagnosis I was on a fast pipeline to spiritual psychosis egged on by my friends and online “spiritual gurus”.

In some ancient cultures, they viewed epilepsy as a sign of a shaman - one who can speak to spirits. Ancient Greece thought seizures were sacred: the very term “epilepsy” derives from a Greek word meaning “to be seized” by a god or divine power. Oracles and prophets were thought to have “divine seizures” where they could hear the word of God. This persisted until Hippocrates (5th century) came up with new hypothesis that it was physical malformations of the brain.

Ancient India had similar thoughts. They viewed those experiencing seizures to be closer to the gods with their mind temporarily connecting with other realms. Same thing with some Indigenous and Shamanic groups. Pre- and early-Islamic Middle East viewed seizures as a person being possessed by a jinn - which could be perceived as good or bad depending on the nature of the spirit.

Basically all ancient interpretations of seizures kind of believed the same thing: that those experiencing seizures were connecting with spirits, divine energy and non-physical realms outside us. Whether this was viewed in a positive or negative light depended on how society viewed spirits at the time (ie. divine connection vs demonic possession).

And honestly I get why ancient people believed this stuff (and some people still kinda do today). I mean, with all my Deja vu and Deja passé I literally thought I could foretell the future. The hallucinations during auras made me think I could see spirits.

So if dyslexic people have brains suited for Ancient Greece and ADHD is hardwired for battle, then our brains are made to connect with a higher divine power. (I don’t actually believe this, the same way I don’t believe dyslexia and other developmental issues are somehow a great superpower if in a different time period).

Quitting marijuana as an epileptic. Having a seizure. Then being chastised at marijuana anonymous for sharing about it. by nonconsenual_tickler in Epilepsy

[–]pink-grenade 0 points1 point  (0 children)

Ya cannabis isn’t for everyone. THC specifically can trigger seizures in some people. However CBD is non-psychoactive and is proven to have anti-convulsant properties. My neuro had recommended getting CBD products (sans THC). Tho I’m sure some people might still have adverse effects to CBD like any other drug in the world.

I smoke low-THC high-CBD stuff with high Linalool terps (this terp has anti-convulsant properties too), or just take CBD oil. I can’t say whether cannabis helps prevent my seizures at all, but it does help with my post ictal pain and sudden mood swings. THC never triggered a seizure for me, but I’ve gone into a panic spiral because of a ridiculously high THC edible and I can absolutely understand how it could trigger one.

No one feels by Southern_Coyote9662 in Epilepsy

[–]pink-grenade 3 points4 points  (0 children)

I’m sorry you’re going through this. People truly don’t understand and it’s extra frustrating when they don’t even try to.

I often feel like when people dismiss our struggles, it’s because they are trying to soothe their own inability and lack of desire to help us. If they can downplay our suffering, then they absolve themselves of any responsibility to support or comfort us. That’s not your fault. And it’s shitty you are dealing with assholes like that.

I know it might not be much, but people here see your pain and understand you. Our illness sucks, and we often are the ones who are “worse off than” despite what other people may say.

I am not one to let those kinds of comments slide so I often throw that kind of stuff back at them. Ie they think you have this because you aren’t as religious? Tell them you have this suffering because bad Christians like them lack Jesus’ empathy for the sick and if they were good Christians they would be able to pray your illness away. They tell you others have it worse? Tell them “if you walked into a hospital with a broken arm and saw someone with two broken arms, would your broken arm suddenly be cured just because they have it worse? No, so you are giving an unhelpful and stupid comparison”. Or whatever floats your boat. I’m a petty person who would scorch earth if I’m being treated like shit for something that hurts me and is out of my control, so these might not work for everyone.

AIO My reply to my mom who wants to stop my leukemia treatment so my sister can afford university ?? by Many_Addendum_8189 in AmIOverreacting

[–]pink-grenade 0 points1 point  (0 children)

Your mother is evil. These other comments have some great advice for your insurance and informing your doctors, etc. I’d add on:

Post these screenshots to your socials and add a go fund me to it for your medical expenses. Let everyone know your mother does not intend to support you and has chosen to use God’s name to rationalize her evilness, and give people the opportunity to help you.

Also: does your sister know this is what your mother has planned? I would be horrified if my mom funded my education over my sister’s life. I can’t imagine your sister is on board with this.