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raving + epilepsy?

moonraver6661 4/3/2016 02:04 am 6020

so my girlfriend has epilepsy that is triggered by 1) being overheated, and 2) certain psychological phenomenon (no, i will not go into detail)

but not flashing lights and sound (i asked her yesterday what exactly triggers them)

and i just realized, what would i do when i take her raving, if she does overheat and has a seizure? she doesn't have the jerking kind, that i'm aware of, because i saw her have one once when we were in treatment and they just laid her down and she ended up okay. but how would that work out at a rave?

any ideas about how to help her in the event this happens would be gratefully appreciated because i love this girl with all my heart and i want to share the rave experience with her.

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Jul 10, 2016 9:32 am

If you go to a rave with her, I would personally recommend you don't take her near the front because it gets the most crowded and hot up there. I've been to a few raves like Excision and Skrillex and at both of them, the front was way too hot for me. If there is a non-crowded area, I'd recommend you go there because it's usually much cooler there

Jul 7, 2016 10:05 pm

i have epilepsy, flashing lights dont cause my seizures. idk why causes my seizures but they are under control now. depends on what triggers her seizures.

May 27, 2016 11:36 pm

@Tzinipa: I was just worried for her safety, but as long as she knows what to do in the situation, I agree that she should go. I read the other commenter's stories so I have a better idea of what she can do to go to a rave

May 27, 2016 9:12 pm

@haseokite: epileptics can rave, depending on the type. epilepsy is an umbrella term. There are many many different types. Only certain people are triggered by lights and sounds. I'm epileptic, but I can stand at the front of the stage after certain activities next to the strobe light directly facing me and bass on full blast and be fine. Others can't. It depends on the person. I think people should go to raves as long as they are being safe and practicing good judgement. It's like telling a person in a wheelchair to get out of an amusement park because they'll have a bad time. If you rave, you've probably raved with epileptics, people with heart conditions, handicapped people, etc... and didn't even know it.

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May 27, 2016 8:15 pm

I have JME. I'm triggered by stress and lack of sleep. I have attended many raves and festies for 3 years and counting. No seizures yet, but I always take precautions. My suggestion would be to try to take her to a small event (SOBER! Baby steps) and see how she does. Make sure she goes outside around every half hour, or when she starts to get a little too warm. Keep a little fan on her and keep her hydrated with gatorade (electrolytes, my friends). If she can handle a small event with no issues, move up a step. Keep safely testing it. I wouldn't suggest huge EDC crowds, but local raves (the best ones!) should be fine.

I actually helped a girl during a seizure. It depends on the type. I'm guessing she has complex partial seizures? Where she just stares off and seems lost? Most seizures have a few phases:
1. Aura
This is almost like the brain warning you about a possible seizure. An epileptic will hear, see, smell, or feel something that is not there. They can also experience an extreme emotion, be suddenly dizzy or nauseous, etc... If she experiences any of the symptoms listed, she should go somewhere colder and more roomy as a precaution.
2. Middle
She will start to show physical symptoms and a more vivid aura. This usually happens right before the seizure. Get her somewhere safe.
3. The Seizure
Whatever type of seizures she has (complex partial, simple partial, tonic clonic, etc) starts. Wait this out. If it lasts over 5 minutes, call someone. I don't care where you are, what your friend is telling you to do, or even if you're on a substance. Having a seizure that lasts over 5 minutes can lead to brain damage. EMT does not care if you're on a substance. They're here to help.
4. Ending
She'll start to come out of it. Don't rush her or force her to do anything. Talk softly. Take her home.

Having epilepsy and being a raver are two difficult combinations. If she can't handle a rave, don't take her (take her to local festivals instead!) Health is always more important than raving. She's not alone. I know many epileptics. Stay informed and know what to do if the situation arises.

PS: GET HER A MEDICAL ID!!!
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May 23, 2016 12:46 pm

Hi,

My ex had epilepsy with stress, psych, and light triggers. He couldn't go to raves sad Most of the seizures I witnessed with him were convulsive, but he would also just "space out" for some. I would recommend constant hydration, a mist bottle or wet towel to keep temp down, and a communication code or system to catch a seizure before it happens. Have a "lost and found" meeting place if separated, have her wear a medical bracelet, and just overall keep an eye on her. Make sure she doesn't push herself. If you notice her having a seizure, make sure ravers around you know to give her space, and see if some will help you move her out to somewhere safer/cooler.


Have fun and be safe loves! heart bounce

Apr 21, 2016 11:16 pm

my friend uses cannabis to keep his epilepsy at bay...says it is the only thing that has ever helped his seizures stop completely thumbsup

  • Eleanor
Apr 14, 2016 12:04 am

im 22, I also get seizures at times, however I've always been afraid I would get them at a rave. I always make sure to drink as much water as I possibly can. Sometimes I have to pee more than usual but it's better than getting a seizure. I also make sure to stay in the back where it's not usually that crowded and you can see the lasers from a distance. That also prevents over heating. Also where it's not crowded crowded. The back is cool there's the chilliest people. My advice is give her more water than necessary. Make sure she's hydrated and bring a fan! They have very nice ones at the 99 cent store. Like fabricy nice one lol. If she does get a seizure please keep calm, don't get crazy because sometimes it can get stressful. Don't take her to the medical tent unless absolutely necessary. My friend called 9-11 and they took me to the er. After an MRI and cat scan they said I was fine, sometimes we just have to pass out for 30 seconds and will be okay afterwards, she will be able to feel it coming so you have a few seconds notice. It'll be really scary seeing it but it will be fine. If she needs medical attention tell her to be honest, at insomniac events you don't get in trouble for going to the medical tent. Even if there's drugs involved, if she says "I don't feel good" immediately find a place to sit down and relax you'll be fine happy don't let her take **too much** drugs if there's drugs involved. Other than that, happy raving!! Hydration is key

Apr 13, 2016 3:17 pm

Well first of all she needs to figure out all of her triggers and look into medical treatments

2nd of all i'd start her off at a small rave (larger events raves or not tend to be hotter because human beings when crammed in like sardines exude massive amounts of body heat)

3rd stick to outer perimeters the father out and away from people/objects you are the less there is to trap heat of any kind

4th water bottles and cooling mist fans or fans in general (around summer time you can usually find personal sized misting fans that run on batteries and work like a spray bottle) personal sized fans in general are a good way to go

5th i am in no way advocating she go naked or dressed like a harlot however a tank top and shorts or other light weight clothing is advised.

the final bit of advice is to should she feel like she's over heating or anything of that nature have a safe word/phrase/action and either exit the room/building so she can cool off or b keep a cooler in your car with ice packs or even ice

Apr 9, 2016 4:18 pm

I am probably older then you all, and I was a rave queen.... I also have epilepsy. I would trigger a seizure with flashing lights before I went out, usually by having one seizure at home in a controlled environment . Now this was only for me, not sure if it would help others. Also I enjoyed bubble or foam parties which usually didnt have the flashing lights as often. But above all that she needs to see a neurologist and have it diagnosed and treated.