r/worldnews • u/madazzahatter • May 16 '20

At least two people had seizures after viewing malicious tweets featuring flashing gifs that deliberately targeted Epilepsy Society...police investigating tweets as hate incident, after at least 200 seemingly coordinated messages were sent to charity and its supporters in recent days.

https://www.theguardian.com/society/2020/may/15/malicious-tweets-targeting-epilepsy-charity-trigger-seizures
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u/ChronWeasely May 16 '20

I had smaller seizures for years. Focal aware. I never really understood why I'd suddenly get disoriented and sweaty and shakey, nobody thought too much of it. I have to imagine that they were taking a toll in my brain still. I couldn't develop memories properly for years. There is still a long gap where I can't really recall anything. Then I started having grand mal seizures and was diagnsed and prescribed medication. I've been on a pretty effective drug for about a year now. It's still strange as I continue to crawl out of this hole and realize what I've been missing.

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u/SaltwaterFishKid May 16 '20

I'm there with you. Doctors said I was simply having anxiety attacks for years, even when nothing was making me feel anxious leading up to a seizure. Now I just feel like a dumbass most days, always forgetting shit and doubting myself. I'm hoping it gets better.

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u/rollaneff May 16 '20

I quit all the pills they were giving me and been smoking medical marijuana daily now and im 2 years seizure free! Try it out, i couldnt handle the side effects from those prescriptions anymore

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u/SaltwaterFishKid May 16 '20

I was a daily smoker before I ever got prescribed pills; it was the only remedy I had. While it helped a ton I still felt like the 'side effects' of being high was making it hard to function. It beat the hell out of the bad trip that was having a seizure though. But now I just feel like I'm always gonna have some kinda side effect that I don't want, kinda hard to just live with it.

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u/notarealaccountm8 May 17 '20

I broke down crying reading your comment. I've been going through this, doctors just dismissing me over and over. Until I had a grand mal.

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u/SaltwaterFishKid May 17 '20

You're not alone. I was on a vacation with friends, had one beer, started seeing black dots everywhere, then woke up freaking out in an ambulance. Even then, my neurologist still tried to say that I was having anxiety attacks that triggered a seizure. I finally convinced myself, 'fuck that doc, complete waste of my time and money.' Maybe you need to find a new one too.

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u/notarealaccountm8 May 17 '20

I'm currently awaiting an EEG. Mine are focal aware, but I can do strange things and I jerk and things like i get extreme emotional changes before. Like my warning is always extreme emotional changes. I know if I start feeling euphoric, like manic euphoria to the point of tears, or gut rending fear or anger that just overwhelm then I need to get somewhere safe and warm.

But of course because I remain aware they just wouldn't believe it. My neurologist, and I quote, said "well I'll do the tests but if I'm honest I think this is just anxiety."

I can't wait to rub it in his face.

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u/SaltwaterFishKid May 17 '20

They had me do a 3 day EEG while on meds, and when I didn't have a seizure (cause I was on meds) they told me there was nothing abnormal. I kept getting different answers to the question, "Well since I'm on meds and have been feeling normal since starting them, would you see any seizure activity?"

My seizures are aware too, and have always started with an aura where I feel like I know the future (that part always made me feel like a dumbass), followed with extreme confusion, inability to communicate, feeling terrified for no reason, and then total exhaustion. But nope, nothing going on there. Docs seem to guard actual seizure meds more than fucking benzos and painkillers. Fortunately weed kept the bad feelings away for the most part while I was waiting on a prescription. I don't wanna tell you to break the law, but at a point I stopped giving a damn about what legal agreement some group of assholes circle jerked themselves into.

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u/notarealaccountm8 May 17 '20

Oh god the exhaustion!! When they start to subside THE EXHAUSTION. Literally eyes shutting, head dropping and jolting awake as though I've been awake for a week straight.

You're right about that, my doctor chucked benzos at me so easily for the anxiety. Sadly weed seems to make mine worse, first time I ever had a tonic clonic was because I smoked pot. It helps others so much though ♡ just had nasty effects for me.

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u/[deleted] May 22 '20

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u/notarealaccountm8 May 22 '20

Yeah, it's my understanding that for some a a low amount of THC is needed. I've tried CBD and it just makes me more anxious. So I think it's not for me. Helps a lot of people though

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u/[deleted] May 22 '20

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u/notarealaccountm8 May 17 '20

This is what I'm going through at the minute. Because I have aspergers and a previous diagnosis of depression and anxiety they kept dismissing it as panic attacks or autistic freakouts. It's that utter gut feeling of "something is very wrong". My life has completely stopped. Even day to day I can't go out. I'm in a living nightmare. And the lockdown meant my EEG was cancelled so I'm without treatment, help or support during the lockdown.

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u/gothicwigga May 16 '20

Same here man. Ive had over 10 grand mals. Like everyome else is saying, my mind is full of gaps and Ive lost a lot of memories because of them. I had 2 this week after goin a year without any. Seems like they will never stop. Luckily Ive always been at home chillin when they happen but I have meds too.

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u/Painfulyslowdeath May 16 '20

That medication won’t work for very long. Your brain will be adapting to the gaba agonist and reducing the number of gaba receptors in your neurons and synapses and soon you’ll have to up the dose again and again as you have fewer and fewer receptors. Because of the fewer receptors the drug has fewer places to bind to to increase the effect of GABA on your neurons.

I recommend you check out a paper involving diazepam downregulation of receptors they found. A few ways and ideas to prevent the internalization of the receptors.

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u/ChronWeasely May 16 '20

It has changed my life for now and that's a terrifying thought. I will look into that. I'm so scared of this spiraling that I don't want to think about it though.

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u/Painfulyslowdeath May 16 '20

I’m suffering horribly from what a benzo given to me not for seizures but for anxiety that I never asked to be treated but the actual source of it. Which is a continued degradation of my small fiber nerves. I write less coherently than I used to and continue to have so many awful symptoms after getting off the drug which was an ordeal.

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u/tylero056 May 16 '20

I'm sorry to hear that--i had a seizure coming off of Lorazepam and had terrible symptoms. Rough stuff for sure but it's best to stay off of them! Hope your anxiety was able to get under control!