start of the new dose with questions

[thornton8000]

hello friends,

Yesterday was a rough day,
neuro's nurse thought i had another tia, was nothing like the last one so I blew them off. (plus last time I went in the told it was memory issues)
My wife just found a lighter under a ice pack from me (dont remember putting it there) she drilled the kids as did the grandparents concluded they didnt put it there, so somehow I did, dont know when or how but it was in the last 2 days.
last night however I could give a 3 turn direction without confusion took 6-8 mins to think of how to get there, took over 10 min to think of one word, and had an absence seizure and my fingers wrote a word during the time frame when i was out of it and when i came to during a chat i freaked out and start apoligizing even though it fit with the coversation, when i didnt mean to put it in the coversation.
1st time on over a year my left side of my face went numb, my arms (both of em and they burned at the same time) had blurry vision.
And they told me that in no way was it the upped dose of keppra since it was only my 1st set of 1000mg but (if they would take a few extra mins to listen) I have a quicker reaction to meds than most people when most people take up to 3-5 days to notice how a drug will affect them I can tell in 1-3 days or less any food I eat run right through me its sad, and (docs word again) it's all in my head.

And yes I did have a seizure last night with a migraine and urination this morning i forgot to add that part.
and a new aura smell as well not my normal fruity candy smell I had i was kinda sad not I had a herbal root kinda smell.
so now my keppra has been doubled and next week my topamax will be reduced from 75mg 3x daily to 50mg 3x daily i'm at with keppra 1000mg 2x daily now.
I love what keppra did for me and how it reduced my seizures from daily to every 3-4 days and hope with this increase it will be more spread out. I've been having SPS type seizures everyother day but not to often as well.

Thoughts, ideas?
Thanks everyone!

Mike
sorry this was so long had to get this off my chest

 

[seizing more]

it's good to share

I still feel new here, 1/2 the time i'm afraid to share due to the paranoia of someone i know or my employer reading my posts,or maybe it's just the meds playing tricks on my mind. I am like you,the meds or dose changes are brutal on my body. my keppra dose was increased from 2,000mgs a day to 3,000 2 days ago. I already feel the effects tired, nausea feeling,my vision,my loss of appetite & food issues are rough. I feel high, it's hard to think,function,walk,talk, i'm always reaching for the right words, loose my thoughts mid sentence. I lost my license back in January, thats hard to deal with in itself. my family & most friends are supportive, but it's all still hard to deal with.I have several seizures a day mostly at night & several types....gran mals are in the mix.I was in an accident in December,not my fault,I was stopped at a crosswalk and rear ended,it was a hard hit & my seizures have been out of control since. Sometimes i wake up and have this real strong smell of urine, at first i was thinking it was my cats, hahaha, but now i know it was just a rough night. The headaches, confusion, muscle cramps and soreness after a seizure are also tough to deal with .Thanks for posting your experiences as i read i feel i'm not so alone

 

[julie wishes]

Ugh, you guys mike hang in there. I notice medicine immediately too. Doctors don't believe me. Tell me all the time... not possible. Tell them all the time... well it is what I feel. Anyway, sorry it sounds like you had a horrible day. Same happened when I upped my keppra. ???? I didn't know what to do. MD said side effects would subside... I tried to wait it out. But things only got worse for me until I stopped the keppra.

Seizing more.... I'm sorry you are having trouble post car accident. Were you checked for concussion issues? Read about concussions. They can last a long time. Take care. Hopebthings improve. Must be so hard to work feelingbthis way.

 

[Nakamova]

I hope you guys feel better soon.

Mike -- I was also told by my neurologist that tiny doses of meds can't have any noticeable effect. In my case though, my seizures have been controlled by "tiny doses". It took awhile for me to train my neurologist to accept this.

 

[thornton8000]

Naka-would you say a 1000mg increase is a tiny increase? on keppra?
mike

 

[Silat]

1000mg at once is a pretty large jump.
My neurologist tries to increase it by 250mg at a time if it needs to go up.

 

[Eli]

I played with my keppra myself. Slowly lowering the dose and times of day taken until I was comfortable. I was a wreck on the higher dose. The neuro I had at the time, in SoCal, looked like an aged surfer "dude" and didn't listen to me. I purposely made my appts the first one of the day, as I usu seize in public. He was consistently an hour late even getting to the office.

I asked for a referral to the Epilepsy ctr in SD and left that neuro to surf!

My epileptologist was a blessing and agreed that I was now at a good dose for me. And I let her know I did it on my owm.

 

[Eli]

1000mg at once is a pretty large jump.
My neurologist tries to increase it by 250mg at a time if it needs to go up.

I too did mine at 250mg increments. Sorry i missed noting that in my rant.

 

[thornton8000]

my epi's have had 2 wouldn't listen and wnat to do veeg's which i'm fine with but i cant do them on thier time frame's due to no daycare and money and wouldnt give me any meds, only the neuro would, and only the neuro listens and believes me about my seizures, so thankfully i have a good neuro!
mike

 

[Eli]

my epi's have had 2 wouldn't listen and wnat to do veeg's which i'm fine with but i cant do them on thier time frame's due to no daycare and money and wouldnt give me any meds, only the neuro would, and only the neuro listens and believes me about my seizures, so thankfully i have a good neuro!
mike

Thank goodness you have a good one.

They scheduled a veeg for me, insurance approved it but the billing department wouldn't let us make a payment plan, so no veeg.

 

[Silat]

Thank goodness you have a good one.

They scheduled a veeg for me, insurance approved it but the billing department wouldn't let us make a payment plan, so no veeg.

Seriously? :?
That's messed up...

 

[thornton8000]

i agree with silat
mike

 

[Eli]

Seriously? :?
That's messed up...

Yes serious. We have good credit, had paid all my other copays at the time of service and even BSCA was surprised.

Actually the epileptologist even called down to talk to billing. She said I was a perfect candidate for surgery (whatever perfect means ) and needed the veegs so we could get to that point. But they said NO!

Anyways, I'm back on the east coast now, soooo....