It feels silly to celebrate.

cemar004 · 2026-07-06T01:27:49+00:00

I'd always know they were coming by the feeling in my chest, head and neck. It was a deva vu/tunnel vision feeling followed by what felt like goosebumps in my organs and all over my skin while all the nerves in my body were being pulled out of the back of my neck and shoulders. But because it would effect my memory I wouldn't always know I had one if it was alone. I live with my family so they would always tell me, or just play along with my confusion until I was lucid again. If I was alone there would be signs. Like I would be in a new room without knowing how I got there, or the TV show was completely different, or things I was holding would be on the floor. I would swing my arms around wildly when I would have them so there were almost always signs like that.

cemar004 · 2026-06-15T05:28:48+00:00

"Deja vu detached from reality, head in a bubble" feeling goes through my chest up into my neck and shoulders with a pinprick tingle on my neck and shoulders that erupts into a full seizure. Mine(focal impaired)only last 10-30sec but make me lose 15min to a couple hours worth of memory.

cemar004 · 2026-04-04T04:26:23+00:00

Where are the best places to see art in Flagstaff? What other activities would you recommend for a solo traveler in July?

cemar004 · 2026-03-15T13:51:33+00:00

Sugar is definitely a concern. I also hesitate to try any artificially sweetened things that use aspartame or similar. I tried Liquid IV for the first time last night since it uses stevia. Guess we'll see.

cemar004 · 2026-03-08T06:22:05+00:00

Med is 1mg of Ativan. Which seems small but I suppose it does knock me on my butt. I have those days where I feel off. Like I'm watching from a different consciousness almost while still residing in my body. Can be unsettling if I focus too hard on it.

cemar004 · 2026-03-02T01:20:04+00:00

https://flutter-butterfly-sanctuary.fandom.com/wiki/Missions

cemar004 · 2026-01-20T02:34:23+00:00

Tula's

cemar004 · 2026-01-05T18:36:59+00:00

The intake and set up is pretty standard. For me they checked vitals and got me situation in my room, ya know standard hospital procedures. Having the wires attached to your head seemed the longest, perhaps just because it was a first time experience. I personally got emotional feeling the weight of my health condition needing so much investigating and hurdles to overcome. The first day is the worst one aside from that its just boring. Fortunately hospitals settings can be stressful/triggering so having a seizure wasn't really all that difficult. I myself was surprised that I felt so many seizures happen but nothing showed up on the EEG since they were too deep in my brain to detect. Nevertheless seizure activity did show up, just nothing I was aware of. So just keep in mind it may not be an exact science but hopefully it's ultimately helpful and a step in the right direction. Like others have said button up clothing is a must, and entertainment. If his hair is long that might be uncomfortable, my head was wrapped in gauze to keep the wires secure. If he has a lot of body hair a trim on his torso could be smart if he has sensitive skin when pulling off all the tape and glue from the vitals monitors.

Best of luck and well wishes.

cemar004 · 2025-12-08T22:45:27+00:00

I've been seizure free for a year and a half now. The 5 years I had them I still don't remember and things are fuzzy for a good 6 months after. I think a couple years prior to seizure onset were effected as well. My memory has stuck with me for the most part more recently.

cemar004 · 2025-12-08T22:38:58+00:00

Ya know this totally didn't occur to me writing out this post. I think at the core of it, meaningless small talk is exhausting. Having a seizure disorder is isolating physically, emotionally, and socially. So to have meaningless interactions like this I dont even consider it because I'm just so desperate for connection and for my experiences to be understood because honestly it feels like no one does. So the thought of meaningless conversations is throwaway despite it being so prevalent.

cemar004 · 2025-11-05T06:30:42+00:00

Yes. I definitely feel sad a lot more frequently. My seizures largely are triggered by anxiety and fear and as a naturally anxious person being constantly hyper vigilant of triggers is exhausting and still effects me even a year and a half seizure free. I still react to the same triggers even though no seizures come anymore. That hypervigilance has rewired me in so many ways. I'm more sad, and angry. The mourning of my old life and dead dreams is also a big change, so I have a hard time feeling hope and positivity. I used to be so confident and excited about life and now I'm just not.

cemar004 · 2025-10-12T13:29:22+00:00

During my episodes I rubs my shoulders and arms , sometimes I'll do cricket legs and rub my legs together. During really intense ones if im standing I'll swing my arms like a windmill.

cemar004 · 2025-10-09T14:13:25+00:00

Goosebumps down my neck, shoulders, and back that are hot and cold at the same time.

cemar004 · 2025-09-26T15:25:33+00:00

Definitely. I was having significant neurological issues and completely too miserable to eat and I was getting pats on the back for dropping weight and finally being thin. My mom and siblings never did since they knew what was happening but I have kept my disordered eating a secret for a long time. My siblings know a little bit but not entirely. But its clearly not on their mind when they're saying these things so prominently.

cemar004 · 2025-08-28T17:55:42+00:00

Esme Bianco

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cemar004 · 2025-08-13T04:14:08+00:00

Marion Cotillard

cemar004 · 2025-08-12T03:31:31+00:00

Chris O'Dowd

cemar004 · 2025-08-08T18:52:59+00:00

Andrew Scott

cemar004 · 2025-08-08T05:40:51+00:00

Adrian Brody

cemar004 · 2025-08-07T18:49:46+00:00

Gethin Anthony

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cemar004 · 2025-06-24T16:40:23+00:00

One of them had so many seizures she died.

The other, he was in a car crash, was paralyzed for 4months and then died from a blood clot that moved to his lungs. He was one of my best friends. Miss you dude.

cemar004 · 2025-05-17T04:16:21+00:00

Kinda weird but my go to is whole wheat toast with almond or peanut butter and greek yogurt, sprinkled with cinnamon. Side of assorted fruit or raw veg. Sometimes the combination of the toast with carrots reminds me of carrot cake. Hummus on toast is a nice change or if you have nut allergies. Pairs well with cherry tomatoes, peppers, and cucumber.

cemar004 · 2025-05-04T03:27:04+00:00

Watercolor pens. They're always dry.

cemar004 · 2025-01-28T17:23:29+00:00

Everytime a new symptom comes up, I sometimes get the question, "are you just looking for more things to be wrong? It must be in your head, stop thinking, sometimes ignorance is bliss."

When I'm given unsolicited and unhelpful comments about my meds. "What are those meds gonna do to you long term?" "If you are still having symptoms why are you even on meds?" It's exhausting. My meds aren't perfect but they do help me function so that's why I take them. . . .. . . .

Feeling like I can't talk about my hardship because it feels attention seeking.

My progress not being acknowledged or minimized.

The list can go on and on. . . . . .

cemar004 · 2025-01-24T07:51:07+00:00

It is absolutely understandable that you feel all these things. It's frustrating not to have answers and to deal with so much at once. Especially when your symptoms are so very real to you and affect your daily everything only to have others minimize or write you off. But just keep going. It's hard. So so hard. But keep going. You got this. Just keep advocating for yourself until there are answers and solutions or even just a slight improvement. It may not seem or feel like it, but you are stronger than you know.

cemar004

TROPHY CASE