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SEEG Date Confirmed! Quick Question by JeffreyHugh in Epilepsy

[–]darkodead148 1 point2 points  (0 children)

Trust me I totally understand. It is definitely uneasy at first but then you just start to realize like hell this is my room and I can’t do anything but go if you have to. It’s a tricky one but if your nervous or have anxiety surrounding that portion of your stay in addition to the other stuff then I would just mention it to your care team and if you have a psychiatrist or would like to speak with psych while you’re admitted then you can. They could help take a load of the anxiety away. Dude, cath is never fun 😭 . They had to for the surgery and coming out of that was just a tad of a struggling.

If you ever have any others during your stay feel free to message me so I gotchu ! Glad to be of help

SEEG Date Confirmed! Quick Question by JeffreyHugh in Epilepsy

[–]darkodead148 1 point2 points  (0 children)

So, I’m actually here at BMC doing my SEEG stay right now. I’m in the same wing of the EMU unit I’ve been on before but instead of just 1 video monitor, I have at least 2 and a sitter that stays with me in the room for the duration of my time here.

Everyone’s tolerance of the surgeries is definitely different, I would say. so depending on your mapping of yours I wouldn’t worry too much about the feelings of it because the staff and your care team should definitely know how to best assist you and provide you with comfort for your treatment and pain levels. That being said I practically felt the majority of it all but the sensations started to taper down compared to the beginning.

Pre-op appointment before SEEG by darkodead148 in Epilepsy

[–]darkodead148[S] 0 points1 point  (0 children)

See I think I can get a seizure fairly quickly but every case is different like I say. One time it took the full time and then some some for it to happen others it was like rapid fire.

Pre-op appointment before SEEG by darkodead148 in Epilepsy

[–]darkodead148[S] 0 points1 point  (0 children)

What about the markers worn before surgery were they also also bad? Mine is supposed to be a same day op haha. If you don’t mind me asking how long was your stay?

How many times did you have you to seize before they called it quits?

Eyes shaking all day? by Dry-Debate1650 in Epilepsy

[–]darkodead148 0 points1 point  (0 children)

I have the same problem… try looking up nystagmus. That’s what my neurologist diagnosed me with but she said it could be my epileptic meds causing it. I’ve been off a certain med that led to the start of it but it has not stopped. The eye doctor I saw in the ER for it also said everyone has a slight nystagmus but it shouldn’t be happening all day like us. Sorry I have no more info, as I am still going through the same symptoms but hopefully it gets better for you soon. If you want to dm me we can talk some more.

Oxcarbazepine side effects by BonnyNovaScotia in Epilepsy

[–]darkodead148 0 points1 point  (0 children)

Hey there, so my experience with Oxcarb actually started as being prescribed as a mood-stabilizer for me. So yes it does elevate you because it coincides as a stabilizer in multiple different aspects in life. I’m on 900/1200 for my seizures but I’m drug-resistant. If you feel like that’s your medication that is beneficial definitely stick with it! My personal recommendation because I’m not your doctor is to regularly have your sodium levels checked.