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Tysiiaczeq

Zet
Jun 12, 2022
38
What do we know about SN and seizure disorders? (Epilepsy, in my case)
How can I prevent a seizure during CTB? What precautions should I take?
I've done some research online but understandably there isn't too much info about this specific scenario and how SN could affect this.
Having a hard time navigating this forum but I think there isn't THAT much abt this in general, this probably concerns only a small % of users.
I'm exhausted rn and would very, VERY much appreciate all feedback, links, personal experiences or pretty much ANY knowledge on the subject. I might seem paranoid, it seems like brain damage isn't a VERY high risk with sn/controlled epilepsy - but both of those combined… idk, it could end the wrong way. better safe than sorry.
I don't wanna fuck this up, so I'm reaching out on here. I promise it's not just laziness! I pretty much can't concentrate or remember anything these days anyway. I want to do this as cleanly as possible and try to minimise 'surprises' during ctb. I don't mind the typical side effects such as dizziness, headaches, vomiting (second cup ready, always), etc. Thats part of my every day life and doesn't bother me anymore. I just want CTB to be peaceful enough.
I'm assuming meds would be the best option? Is there any guide on what pills to take? When do I take them? Are anticonvulsants better or maybe something extra relaxing like benzos? What relevant ^meds could potentially interact with SN, the 'anti puke' pills, etc? Any other ideas? I wanna make sure Im thinking of everything. I'm pretty much just gonna be making a list of all the pills that could work in that short amount of time (Im probably gonna get a hotel for the night). Meds are probably my best bet, but they would have to be easily accessible. Pressed pills off the street (not ideal obvs) or calling up my doctor about medication is.. an option. I am mainly concerned about seizure activity, not my health (except the brain damage part). I just want to prevent a seizure at all cost.

Some personal but relevant info:
I get tonic clonic seizures and myoclonic jerks. I have JME. Currently not on meds. high risk of SUDEP, but what really worries me - is the chance of brain damage IF the attempt fails and I'm just lying there, alone and seizing for ages. That freaks me out. (I'm unconscious during seizures and completely useless afterwards. I'm basically unaware that I've even had a seizure).
I'm mainly worried about status epilepticus, my seizures are naturally very intense, long and on the extreme side already so idk what SN could do.
I got off ALL my meds so I'm not taking anything that can potentially cause an interaction. my triggers are sleep deprivation (insomniac) and/or flashing lights. I get a cluster of seizures every few weeks/months, usually nocturnal and usually triggered. I should mention I have a SLIGHT arrhythmia and tachycardia but not bad enough to be on meds. For a while it was concerning and there was bad days (more like weeks, months) but a healthier lifestyle did help a lil and for now its a bit better. However some meds DO affect it badly (e.g. high doses of SSRI). Makes my heart go crazy.
This heart situation is genetic, half my family has it and the majority is fine, most of them have never needed to medicate it.
I understand we aren't doctors or experts and it's on me to research, just thought I could use some help. Its a life or death situation after all :) thanks everyone
 
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Seekingawayout

Student
Dec 10, 2022
139
I don't know if this will help you or not, but someone I know has JME and is currently on Keppra. However, before his diagnosis and proper meds he used cannabis to control the seizures to some degree. Recently, he had forgotten to refill his meds and used a Delta 8 vape pen to get him through the weekend and it worked ok.
Hopefully someone else has better advice/knowledge for you.
 
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