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Brilliox

704d

I don't quite understand NES. Moreover I don't know how to prevent them, even though I talk to a therapist. Over stimulation (positive or negative) triggers them. I start feeling lightheaded, then disoriented, I start to zone out, my eyes flutter and then BAM black out. Best way I describe it is like a computer rebooting, like a really old computer rebooting. Then when someone snaps me out of it (mainly by pinching because it's the only thing that works 1/2 the time), I can't really describe it. It's almost like I can't comprehend time and space. My boyfriend tries to overload my brain til I fall into another episode, then snaps me out of that and usually my memories gradually come back. It affects me working because it can get stressful and that's when it can get dangerous. I can only take showers if my boyfriend or mom or sister is around, because after I shower I tend to have an episode. I wish I knew what to do. Hopefully I'm not the only one who feels these feelings. I don't know who I am anymore.

Top reply
    • PicklesTheCat

      703d

      Same here. I had to stop working when I started having drop seizures. I find that identifying my triggers can help prevent some. For example, some of mine are heat and tiredness. I make sure to always have water with me and making sure to dress in loose layers as well as getting a better sleep schedule. Mobility aids are also a huge help, i use a shower chair so I don't get hurt if I have a seizure in the shower. Unfortunately there's not a lot of info out their for those of use with NES, but I wish you the best of luck ❤

    • PicklesTheCat

      703d

      Same here. I had to stop working when I started having drop seizures. I find that identifying my triggers can help prevent some. For example, some of mine are heat and tiredness. I make sure to always have water with me and making sure to dress in loose layers as well as getting a better sleep schedule. Mobility aids are also a huge help, i use a shower chair so I don't get hurt if I have a seizure in the shower. Unfortunately there's not a lot of info out their for those of use with NES, but I wish you the best of luck ❤

      • Brilliox

        702d

        @PicklesTheCat I also use a shower chair. My work is limited and I'm allowed to use a chair when needed. I can work 5 to 6 hours but it pushes ne pretty close to an episode.

    • Rugby

      703d

      I totally get it, I just don’t like the pinching I tried to do that too but now it doesn’t work anymore

      • Brilliox

        703d

        @Rugby use to work every time and now less than 1/2. When I really cant snap out he slaps me on the face out of panic. No malice when he does, and apologizes profusely.

    • catstronautxx

      704d

      I absolutely understand!! My eyes do the fluttering too and I get super confused before/after. I feel like no one fully understands NES yet to give us any clear path to heal. It’s rough, but you’re not at all alone, if that helps.

      • Brilliox

        703d

        @catstronautxx 100% does thank you.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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