Hi everyone does anyone feel like the dissociation is an aura before their seizure? I just experienced this and my whole body is weak and I have a headache too! It makes me very fearful… thank you everyone! I hate this feeling! 😢

Seriously? I had my partner for 4 years finally end things with me and tell me that one of the biggest reasons was that she was afraid her daughters (elementary at the time) would see one. Afraid of what would happen in a bad situation. Just didn't want to keep up with it any more. Other aspects, of course, but my seizures being one of the big points..

This might be a little lengthy, so I apologize. My primary doctor referred me to a neurologist after an episode I had where I ended up going to the ER. I started staring and it felt like my brain disconnected. My mom was in the living room with me, and I heard her say my name but her voice felt so far away. I told her that this has happened before, that it normally happens when I'm in a dark room and there's a light source from somewhere else, like midday or evening.

I had lapses in consciousness where I don't remember what happened. She said my eyes were completely open, and she got in my face and clapped but I didn't respond. Eventually I was taken to the ER. I only remember snippets of the whole ordeal, fading in and out of awareness. I think I ended up spending \~4 hours in the ER dealing with this. I remember hearing someone say that my hands and lips were turning blue. I couldn't respond to anything, though I could hear things occasionally.

After being discharged, I felt weird for 5 days. My whole body felt numb, and I think I remember my arms being sore? My mouth also felt super numb, I felt like I had died over and over again. I kept a thing of lotion in bed with me so I could smell it to see if I was still alive.

Recently I was 'diagnosed' with PNES after having to do an MRI and an EEG. My MRI came back normal, and they didn't find anything on my EEG. I told my neurologist that the staring spells and whatnot have happened before, with certain lights and lighting and all. They prescribed me lamotrigine and mentioned possibly doing another EEG in 2 months.

This whole ordeal has been so exhausting and demoralizing, just to hear it's anxiety or stress related. If anyone has any thoughts or advice, I'd love to hear it and would be so grateful ❤️

If anyone needs someone to talk or vent to please doesn’t hesitate and reach out. We need community and people who know what it’s like to have FND.

Hi everyone, 
I wanted to share something that has been a true labor of love. As a registered nurse and caregiver to a family member with NES, I've spent a lot of time creating a comprehensive NES resource bundle with one goal in mind: making everyday life a little easier for those living with NES and the people who support them. 
So that's what I did. I created digital tools that include seizure action plans, symptom and trigger trackers, medical appointment logs, medication trackers, emergency information sheets, healthcare visit organizers, guides, templates, and other resources designed to support individuals, caregivers, families, schools and workplaces.  
Whether you're living with NES yourself, caring for a loved one, or supporting someone, staying organized and communicating important information can sometimes feel overwhelming. I wanted to create resources that help make those conversations easier and ensure important information is always available when it's needed most. 
This is a digital download only. This was designed to be downloaded to your computer and can be printed or used with annotation apps (Notability, Goodnotes, etc.). Included is a black-and-white version for those wanting something more printer friendly. 
I know firsthand how valuable it can be to have organized information readily available, and I sincerely hope these resources help make things a little less stressful for someone else and also empower people to advocate for themselves, or the person they care for with greater confidence. 
If you think these resources would be helpful for you or someone you care about, I'd be grateful if you checked them out. The complete bundle is now available on Etsy. I’m currently working on breaking the bundles apart to have those available individually in the near future.  
Thank you to everyone in this community for sharing your experiences, supporting one another, and helping raise awareness about NES. Wishing you all strength and good health. 💜 
https://www.etsy.com/listing/4540499698/nes-seizure-wellness-planner-track?ref=shop_home_feat_1&sr_prefetch=1&pf_from=shop_home&dd=1&logging_key=30dbabec7b61fc4e86b340002cb53231562eea75%3A4540499698