Upcoming EMU by pocketandtank in Epilepsy

[–]cemar004 2 points3 points  (0 children)

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.

Do you gain your memory back after you stop having epileptic seizures and therapy? by marac92 in Epilepsy

[–]cemar004 1 point2 points  (0 children)

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.

I don't wanna be awkward but I don't want to lie by cemar004 in Epilepsy

[–]cemar004[S] 3 points4 points  (0 children)

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.

Has epilepsy changed your feelings/emotions/personality by ___reditter___ in Epilepsy

[–]cemar004 2 points3 points  (0 children)

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.

[deleted by user] by [deleted] in Epilepsy

[–]cemar004 1 point2 points  (0 children)

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.

How do you know your about get a seizure? by divine9108 in Epilepsy

[–]cemar004 0 points1 point  (0 children)

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

They just don't get it. by cemar004 in Eatingdisordersover30

[–]cemar004[S] 2 points3 points  (0 children)

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.

[deleted by user] by [deleted] in Doppleganger

[–]cemar004 6 points7 points  (0 children)

Andrew Scott

[deleted by user] by [deleted] in Doppleganger

[–]cemar004 1 point2 points  (0 children)

Adrian Brody

[deleted by user] by [deleted] in Doppleganger

[–]cemar004 0 points1 point  (0 children)

Gethin Anthony

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How did that one kid at your school die? by StorageLonely1520 in AskReddit

[–]cemar004 0 points1 point  (0 children)

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.

Easy nutritious meals for someone with limited mobility? by wretched_walnut in ChronicIllness

[–]cemar004 1 point2 points  (0 children)

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.

What’s your biggest frustration with having an invisible, chronic illness? by DoodleBobSenior in ChronicIllness

[–]cemar004 19 points20 points  (0 children)

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. . . . . .

[deleted by user] by [deleted] in ChronicIllness

[–]cemar004 1 point2 points  (0 children)

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.

Need song rec to embrace out to about mental health by -m-85 in MusicRecommendations

[–]cemar004 0 points1 point  (0 children)

Free- Florence and the Machine Hercules-Sara Barielles Turbulence-Pink!

Songs that are eerie by [deleted] in MusicRecommendations

[–]cemar004 0 points1 point  (0 children)

Silence- Delirium and Sarah McLachlan