help regarding understanding

[petero]

this morning I had another episode I call typical. the past day+ I've felt really cruddy. out there, hateful, evil, things seeming like an attack on me.
last night I took an extra phenytoin. and my sleep last night was terrible: freaky dreams/reality confusion. it's like a lucid type of dreaming- alert but unable to follow it.

this morning's thing too slipped into a type of lucid reality where my consciousness slips into a sort of tunnel consciousness and I can tell I start going "jahjahjah" sort of sound and do a sort of shadow boxing but light fist clenching and like a small orchestra conductor motion.

I can tell what I'm doing, but it's something I'm detached from.
I sat there sitting for maybe 2-3 minutes total. now I feel pretty crappy again.

but in a way having a seizure event like this makes me feel good, to have a summation, an excuse, a reason...

but I still get freaked out
I was at the ER last year, I have vague vague recollections of the whole time... I had a massive massive migraine
a couple days after I saw a hospital counsellor who said I had a psychotic episode. I still have no idea what that means. it became exhausting trying to find out. so convoluted a process at my county hospital Parkland.
it has felt like I've been undergoing some sort of testing.
I have no idea.
I'm so worn out.
I'm sick of feeling like this and it really originated with that ER.
I think I might actually have some psychic powers at times. either that or things are planned out for me to test my reaction to different situations.
I need to get on different meds probably.
but it really scares the shit out of me.
I've been on phenytoin since 2008, then put additionally on Keppra around 13-14 months ago, whic coincided with that ER visit.
I have the feeling it really screwed me up.
I'll smoke some pot too, which makes me wonder, but it's very relieving, mind settling... and the only consistent issues with the onset of this whole deal: Keppra, getting an iPhone, ..., dealing with a screwed up hospital system...

it makes me feel like I'm losing my mind trying to rationalize this situation.

at times like this I feel I have a tangible thing to place as cause: this morning's seizure period- lumping together the past day and today, and last night's sleep.

I'm scared to switch around meds much though now still because of that Keppra crap. that s*** blew my mind.
now I'm just sick of dealing with the stress of everything.
I want to just let it slide, but that ends up as me missing work, which is stress, which doesn't feel positive in terms of being a trigger issue.

I guess I still have almost zero idea what epilepsy entirely entails

and so I'm losing my mind.
wheeeee!

Merry Christmas!

 

[Nakamova]

Hi petero --

It's a bad idea to take an "extra phenytoin" every now and then. You can't take AEDs like aspirin. They work best if you are consistent with them; if you aren't, they can fail to work or cause more problems.

The same thing can happen with pot. It helps some people with seizure control or other issues, but because it can mess with the mind, going on and off of it can also potentially cause trouble.

I need to get on different meds probably.

Yes to this. The phenytoin may be helping a bit, but it's not doing the trick. I know it's scary to try new meds, given your experience with Keppra. But it's also scary not to be able to trust your senses due to uncontrolled seizures.

 

[petero]

Hi petero --

It's a bad idea to take an "extra phenytoin" every now and then. You can't take AEDs like aspirin. They work best if you are consistent with them; if you aren't, they can fail to work or cause more problems.

The same thing can happen with pot. It helps some people with seizure control or other issues, but because it can mess with the mind, going on and off of it can also potentially cause trouble.



Yes to this. The phenytoin may be helping a bit, but it's not doing the trick. I know it's scary to try new meds, given your experience with Keppra. But it's also scary not to be able to trust your senses due to uncontrolled seizures.

thank you for all of this
when the reality starts slipping it can be a real panic
I thought I had heard or read online that phenytoin was a type of med that is relatively safe to take when things act up particularly badly.
but then again I seem to recall contrasting information too.

there is no doubt at all that the past several days have been horrible for me.

heeding-ly yours,
Peter