post-ictal. Not feelin' so hot

[arnie]

I had a couple of good-size partials early this morning. One about 2:20 and the other at about 3:35. All day I have felt really "post-ictal": headachy, a tinge of unreality, a kind of background sadness, cut off from things, lonely, some sadness, a hint of fear, low energy. Can some of you relate to that? It sucks, doesn't it?
I was listening to music and a song by the Portuguese fado singer Mariza came on which expresses this very well. Translated into English it says this:


Who sleeps with me at night
Is my secret, but if you insist, I’ll tell you
Fear lives with me, but only fear, only fear.

And I give in for it keeps rocking me
back and forth in a rhythm of loneliness
It speaks with the silence

With a voice that breaks out
And disturbs my reason.
I shout: Who can save me
from what’s inside me?
It would like to kill me.

But I know that it will wait for me
By the bridge at the end of the road.

-------------------------------

That sums it up pretty well for me. Here is a link to a live performance of it. Even if you don't understand Portuguese you should listen to it. It's a beautiful song and Mariza has an amazing voice.
Carry on, and so will I!

 

[Autumn Breeze]

:rose: I'm sorry. I hope you can get some rest. Make sure you're hydrated and try to get a good healthy snack in you? Not that I ever feel like eating.

 

[Fedup]

I think we can all relate on some level and you are right about the lyrics and the song.

 

[petero]

beautiful song

take comfort there is nothing God presents us He knows we can not overcome.
take pride in that the sorrow and pain in the universe overflows
and He knows there are only a few with the strength able to take up the slack.
and be confident that strength is reliant on far more than just musculature.
breathe

 

[MuayThaiFighter]

Hope things are working out better for you, I don't think getting used to the post-ictal period is ever going to happen for me. Music can really help, or just something to relate to while your mind wires itself again.

That is a very awesome song!

 

[arnie]

Thanks for the support. It definitely helps, especially from people who have been there and done that. It's harder, I think, for friends and family to give that same support and understanding since they don't go through it, and they have their own sets of fears to deal with surrounding our seizures. That song does do a great job of expressing some of the post-ictal feelings, doesn't it. And I agree that iit's not something you ever really get used to.

Cheers!

 

[qtowngirl]

I had a couple of good-size partials early this morning. One about 2:20 and the other at about 3:35. All day I have felt really "post-ictal": headachy, a tinge of unreality, a kind of background sadness, cut off from things, lonely, some sadness, a hint of fear, low energy. Can some of you relate to that? It sucks, doesn't it?

HUGS arnie. not only can i relate, it sounds like i wrote it.
for years i've put my partials in two categories and write them down as such - major or minor. you seem to have just had two majors. unreality, sadness but you're not sure where from, distant, a bit scared, exhausted. i'm with you E brotha'.
the little ones i can shake off basically by telling myself to, the big ones not a chance, usually pass out if it happens in bed. if i'm working, cooking, etc. i have to walk around the house after to try and somewhat feel like me again.
scary too b/c those are the ones (i judge by over 40 seconds or so) that can go t.c.
yep you got it it sucks.

 

[Nakamova]

Arnie, I hope you are feeling a bit better now. Sometimes I think folks with epilepsy have a different scale to measure how things are going:

ictal: terrible
post-ictal: horrible and terrible
one day post-ictal: very slightly less horrible and terrible
a few days post-ictal: horrible only
a week post-ictal: almost human, not there yet
two weeks post-ictal: 1% optimistic that normalcy is around the corner, but 99% positive that another seizure is about to strike. Feeling terrible at the prospect.

 

[arnie]

Thanks, Nakamova! Fortunately, my time-line is a little more compressed than that, or I would be feeling horrible most of the time. I "only" have partial seizures, and most of the time they just make me kind of tired, but sometimes, for whatever reason, they really seem to gang up on me or something, and just kick the crap outta me. I always know, intellectually, that I will feel better in a few days, but when you're in the middle of feeling that lostness it's hard to remember what it's like to feel good. That's why this place is nice! Did you like the song?

 

[Nakamova]

The song and the singer are both beautiful!

 

[arnie]

I'm glad you liked the song. I think that even without understanding Portuguese a person could get the feeling of the emotion behind it. Here is one other one of hers, which is, I suppose, a love song, but since fado is kind of like the blues it's also got sadness in it. This song is called Primavera (Spring) and it can almost bring me to tears watching it. I think part of its emotional appeal is the contrast between the smooth, easy-going, rhythmic orchestral accompaniment and the extremely dramatic vocals and the very emotional Portuguese guitar playing. If you like this, there are a lot more pieces from her "concerto in Lisboa" on YouTube. Enjoy, and thanks again!

 

[petero]

Arnie, I hope you are feeling a bit better now. Sometimes I think folks with epilepsy have a different scale to measure how things are going:

ictal: terrible
post-ictal: horrible and terrible
one day post-ictal: very slightly less horrible and terrible
a few days post-ictal: horrible only
a week post-ictal: almost human, not there yet
two weeks post-ictal: 1% optimistic that normalcy is around the corner, but 99% positive that another seizure is about to strike. Feeling terrible at the prospect.

for me there's another major one:
from about several days post-ictal onward (pretty much until the next time I wake up to a doctor/stranger/paramedic in my face): pretty certain there's some entity/conspiracy doing "this"/something against me because "I've" never been there to see "it" happen, but I get the onslaught of suffering, there is no justification, pills have no tangible effect, pills are a placebo, it's all a mind game, someone it doing "it" to me...
I hate it and more so because I know it's a dangerous line of thinking. It almost makes me wish for the next seizures, to give me another boost of "evidence" even though it rips me apart... and may put me up to another $8000 in debt or so

 

[arnie]

Scary stuff, Peter. I must say I've never had quite that feeling. I have more the nameless fear that I described at the beginning. I do understand what you mean about sort of wanting the next seizure to happen to clear out whatever seems to build up inside, though, even though in my case it's not a "boost" but a release of sorts, even though it's exhausting, too. Read my poem "Unwelcome Lover" in the Creative Writing section if you haven't already. I try to describe it in that poem.
I hope you get the paranoia-type feelings under control!

 

[CBernieBlack]

Sending support Arnie. Hope you feel better. Also sending support for others in this forum. =) Take care of you.