Is my Keppra working or are things changing?

[LJ-Bain]

I have heard of Keppra keeping larger seizures at bay but smaller seizures are still able to stick around.
I am currently without a regular neurologist (the fourth one divorced me as a patient) and only an epileptologist who has a new nurse who has yet to call me back after 3 phonecalls. It's difficult here to get to even see an epileptologist so I can't fish around for a new one...plus I think I do trust him. He's just busy.

I still have daily partial seizures and they cluster around my cycle but the past two days my warnings have been quite non-existant. I have them standing up now, and even sitting without falling.
They are still consistent to the left side of my body and mainly the right side of my face (eyes rolling and flickering yada yada yada) but my lip smacking has increased and my left hand can get stuck in a movement.
I scratched the heck out of my chest when I started scratching myself during a seizure and couldn't stop. The drool is fun too. Or are the spit bubbles better? Hmm. Tough choice.
I also ended up playing with the latch on a cage at work (vet clinic) and it was hurting as the metal was repeatedly grazing the flesh on my finger.
So I am aware.
Afterwards I have to lie down and I'm shaky and my normal post ictal.

Simple partials. Party time. I have to laugh at myself. I think I'm obsessing.

Ack. Who knows. Just putting it out there. Sorry for the excessive details.

 

[seizingbeauty]

Actually I've been asking myself almost the same questions recently. My t/c's have been way better but I started having some other kind of seizures that I can barely explain. Its really frustrating cuz these happen more than the t/c. They don't leave me as physically hurt but they make it nearly impossibleto do my job.

 

[LJ-Bain]

My Keppra can't hold back my simple partial clusters.
I lean on ativan. I've had about 30 today so for. Ativan doesn't help but makes me so groggy and unbalanced and allows me to sleep inbetween twitches.
Gotta go rest. Sooooo groggy and unbalanced and I had to ask 3 people what day it was today. HA AHHAHAHAHAHAHAH! rest

 

[LJ-Bain]

Well. I have emerged from my two days of back to back cluserting. Hello all. I just stayed in bed and mother in law, husband and mother took care of the kids so they didn't have to witness any of it.
It seems like Keppra is like putting cork in the dam. It'll blow sometimes but most of the time it keeps things in check.

I am now on a waiting/cancellation list for my epileptologist.
He wants to go over my EEG results and doesn't want to change my meds over the phone anymore until he sees me.
Part of my thinks, oh crap, bring on the pseudoseizure conversation and anti-depressant handshake and the other part of me is thinking...hmmm. Maybe something different this way comes. I can't get worked up for it because I'll only get a call the day of and then I have hustle my butt off to Toronto.
Seizing beauty: What are your simple or complex partials like now?

 

[epileric]

I am now on a waiting/cancellation list for my epileptologist. He wants to go over my EEG results and doesn't want to change my meds over the phone anymore until he sees me.
Part of my thinks, oh crap, bring on the pseudoseizure conversation and anti-depressant handshake and the other part of me is thinking...hmmm

It is good practice to not make changes over the phone & to only do it in person. I think if your neurologist thought you were having pseudoseizures they'd most likely tell you to stop the meds ASAP.

 

[LJ-Bain]

Thank you epileric. I still don't know what he's going to say but my biggest fear is for him to turn around and say, well, it looks like they are pseudoseizures after all so I appreciate your opinion in saying that he would tell me to cancel over the phone if he though that.
I've had to become really strong over the past four years so I have to say to myself "this too shall pass" and that hopefully I get in on a cancellation over the next month.
The two other med increases were over the phone but it was for the same med too.
Just swimming through the days.

 

[epileric]

You're very welcome.

Is there really any reason to think your neurologist will think your seizures are pseudo-seizures? I know when I was on Keppra I was very prone to being insecure like that. That's lessened since I no longer take Keppra but my emotions are still sometimes more active than my cognitive reasoning.

Do keep us updated on how things go with your neuro.

 

[LJ-Bain]

The epileptologist has never thought they were pseudoseizures. Just 4 other neurologists have. So I guess I do feel insecure because of that.
Things are just really hard for me right now. Maybe it is the Keppra!
I was in bed for 2 1/2 days just clustering at home and taking my maximum amount of ativan (just 4mg) and I don't really remember those days of course. Catamenially connected time.
I'm finding it hard to stay strong.
I'm just so tired.
The hospital says their hands are tied and can't do anything without stepping on the epileptogists toes. So I just have to deal with things the way there are now.
And so does my family.
But maybe the cancellation will come up soon and I'll get some answers. Good or bad.
I'm ok. It's just really hard. Not everybody understands either. But that's ok too. I don't have to prove anything to anybody or have a tonic clonic just to make it easier for people to go, ooooooooooooo! That epilepsy. Most people are very sweet and supportive. I just can hear everything they say around me when I'm recovering and it's not always fun to hear what people are truly thinking.
Their problem. Not mine.
I'm off on a different tangent now. I should rest.

 

[epileric]

If the epileptologist never thought they were pseudo-seizures then it sounds like he's got a different perception of your seizures.

Meanwhile, rest well.

 

[LJ-Bain]

Thanks epileric.