Things about Epilepsy that you may not have known

[Kaytiee]

Only 3% of epileptics are photosensitive

This means that it's actually a big misconception that All epilepsy + flashing light = seizure, most epileptics are not photosensitive.

Partial-Myth: Photosensitive epileptics cannot view flashing lights

I have photosensitive epilepsy, and each person's triggers, seizures, and epilepsy greatly differ. For me as long as I have had a good sleep, eaten, and had my dose of medication with an extra at hand for emergencies, I can view flashing lights without seizuring. However, some photosensitive epileptics are extremely sensitive even if they have done the above, and will seizure on a great day just because of a police car driving past.

Should I put you in the recovery position?

Now, even some first-aid books tell you to do this, but you shouldn't. Because our joints are locking up, we are very stiff, and forcing our limbs into certain positions could break them. If you can put us on the side, that's OK but we most likely will fall back onto our stomach/back.

Should I inject you with adrenaline/ an epi-pen?

No, there is no need to use adrenaline or an epi-pen, diagnosed epileptics need to safely let their seizures play out. Using adrenaline or an epi-pen can be useful when seizures go on too long (start causing brain damage at 5+ mins) however if you inject someone that doesn't need it, it can cause adverse effects, so only use it in medical emergencies when the seizure is lasting 5+ minutes, adrenaline or epi-pens are not designed to treat epileptic seizures.

My epileptic friend is having a seizure what do I do!?!?

1. Stay calm, 2. Make sure they're not banging their head on anything(It's not necessary to use a pillow.), 3. If they're laying down on their stomach, make sure they can get air, if possible try to put them on their side or back. 4. Call an ambulance if the seizure is approaching the 5-minute mark with no signs of stopping, or if they've harmed themselves during the seizure. Please never put anything in our mouth, you could break our jaw trying to open it, make the seizure worse by putting something we may swallow in there, and you may harm yourself.

If flashing lights don't trigger epileptics, what does!??

A whole list of things, overpowering smells, stress, being sleep deprived, feeling overwhelmed, and more, it's different for every epileptic. My main cause of seizures are anxiety, stress, lack of sleep, and energy drinks.

My friend stopped seizuring after 2 minutes, what do I do now?

Well, they're probably speaking incoherently and not walking properly/in a zombified state. This is because all neurons just fired at once, our brain is basically fried, and we most likely won't even remember when we first woke up from the seizure. Help them to bed, and let them sleep.

Are seizures preventable?

Luckily in most cases yes, modern medicine has come quite far and I personally have not had a seizure for almost 2 years, as I mentioned before some epileptics though are very severe and have multiple seizures a day and medicine can only slightly reduce that.

Can you outgrow epilepsy?

Yes, when I was diagnosed there was a big chance Id outgrow it because my brain was still developing, but as I became older the chances became less and less.

Thank you for taking the time to read my Mytake and understand my condition a bit more, I'll answer any questions you may have! I hope you learned something new today.

[ChrisMaster69]

Really good my take.

a friend of mine had epilepsy.

one time when he fitted we were driving down a motorway from Scotland in the dark and it was raining like mad.

of course being a Twat, he did it while I was in outside Lane doing over the limit lol.

zero places to park and had to cut across traffic to park up, he was trying to use his head to open the window.

We shoved a couple berets between his head and the window.

unfortunately he died a couple of years later, I think he had a status event.

[Moose304]

One of my friends has Epilepsy and depending on the frequency may or may not be sensitive to flashing lights. She has had several full-on tonic-clonic seizures when in my apartment. That 5-minute thing is a fact. Also, DO NOT place anything in their mouth and remove things like glasses and do your best to not let them be harmed. Then make sure to roll them on their side so they don't choke on things like vomit.

[XXblack88]

I have focal seizures. mine go hand in hand with The Sturge-Weber syndrome I have.

[RebeccaBI2000]

Great points. I have epilepsy. Just never grew out of them

[TransAm85]

I started having seizures in '01 and they would always come around my menstrual. In '04 I had a left temporal lobectomy, which helped to an extent, but I still black out sometimes. I been on so many drugs in the past 20 years.. the only thing that is finally helping me is the CBD oil. And I'll take an Ativan sometimes for the onset or after a black out. But I haven't had a crazy big seizure since '15 when I turned 30 and my hormones changed. I have catamenial epilepsy. Ur young though. They're probably gna try to overload u w/the new drugs or put a VNS in u. Be careful!

[Kaytiee]

I juse use keppra and it deals with mine fine, I live in the UK so we dont drug people up for money, if something works stick with it, no need to change. So I'll probably just stay on keppra for the rest of my life.

[TransAm85]

U said it so right! That's what the Dr's do here in the USA! They use the patients like rats. One of my Dr's was paying me for a little bit to take test meds before it was FDA approved and I was blacking out a lot more but he kept saying "your brain has to adapt to the drug" .. Now the new thing is mind altering drugs and putting a little sensor in the brain w/wiring that a person can detect and then stop the seizure? We aren't cars! lol Yes u r right 100% The USA is all about $

[DARKCLOUD1945X]

Not ALL DRS DO THAT! My Granddaughters Dr changed med when she had breakthrough seizures either to increase dosage or to lower dosage or change med if the meds she is taking are ineffective and Dr would start at the lowest possible dose to stop seizures and increase till dose stop seizures. Some med will stop working for unknown reason thus a change is called for that reason not to just change for the hell of it. EEGs MRI also used to track any change in the brain. Med change are used as needed to control seizures as brain will change for reason unknown

[razelove]

Yeah, if I'm on my meds and have no trigger (I'm photosensitive, so really just Christmas), everything is gravy. Touching or moving during a seizure is such a bad idea. One time that happened and I grabbed onto the person, you know, unconscious and seizing, wound up breaking their wrist.

Also just the pain, everywhere lol. I didn't know it was only 3% that were photosensitive. That makes diagnoses more difficult. I've had it since I was like an infant, only got diagnosed with a special EEG around 14-16 with lots of meds and tests for literally everything else thrown at me until then.

Maybe imaging has just gotten better since then, I don't know. Only that if they hadn't induced a seizure with lack of sleep and light, I'd have continued going through test after test with no diagnose for anything as everything came back clean.

Did you have to go through that ring of testing for years, or was it more straightforward?

[Kaytiee]

For me, I took an EEG, Sleep deprivation and MRI scan to get diagnosed, it happened in the space of 1 month after my seizure, I was quite high on the waiting list because for seizures to develop from age 13 is quite strange, not bizarre but still.

[Anonymous]

Thats very interesting, thanks for the education.

What if you find someone in the middle of a seizure? You won't know when it started so do you still time 5 minutes knowing that they could have been like that for 5 minutes already or do you time, say 2 or 3 minutes and then call that 5 or whats the plan there?

[Kaytiee]

I'd say call an ambulance, especially since the person seizuring may not even be epileptic, since overdoses, and anaphylactic shock can look similar to an epileptic seizure. Even if you're sure they're epileptic, call an ambulance as you don't know how long they've been seizuring for :)

[Opinion Owner]

Yeah ok, that makes sense.

What about moving the person into bath full of soapy water and throwing your washing in?

Is still good advice or is that frowned upon these days?

[DARKCLOUD1945X]

This is for the people who put a person at risk when they see a service dog and they pet them against the handlers wish or allow children pet the dog even if the service dog vest says not to pet DO NOT PET A SERVICE DOG. A dog used for PTSD is not a service dog it is an emotional support dog. A service dog can go into store restaurants hospitals churches ESD do not have the same rights as a service dog. People go on line and buy service vest and id cards saying fido is a trained service dog. they are not it takes many hours of training and those dogs are a hazard to a real service dog. Please go on line and lookup service dog and read everything about service dogs training you may save you self a law suit DO NOT PET A SERVICE DOG IN A HARNESS

[Zweihander9005]

Is it safe to keep going when a seizure happens during sex?

[Kaytiee]

No, definitely not.

[Charliefretz329]

Thanks for sharing this! It was very informative and helpful! Seizures suck

[dolemite89]

my friend’s cousin died from drowning in her own bathroom during one of her seizures it was such a tragedy.

[Kaytiee]

That's heartbreaking.

[Anonymous]

Knowledgeable mytake

[Kaytiee]

Thank you for reading it! :)

[mVCyberduVm]

Informative mytake