Thoughts Please!!!!!!!!!!!!!!

[thornton8000]

ok started keppra 1000mg 9 days ago in addition to having topamax 150mg started back in march was seizure free and migraine free and life was great! last night was my other than the 5/27/2012 when I had a startle seizure.
Here's how everything started;
I had and issue i was talking to my wife and made the comment about not wanting to be a pain and after that if yo uasked me I would tell you I never said anything anything more. Now here's where the issue starts my wife asks me what did you say? I told her nothing she goes we've been together for 7 years I think I know the sound of your voice dear, I told her again I didnt say anything, she says well go sit down you know what that means!
And of course I did know what that meant I was more than likely going to have a bad night, so this morning, I woke up with a really bad migraine a more than normal sore back, sore jaw, urine soaked boxers, ie?! I had a seizure, but 1 seizure in 9 days is a better number than before.
Nothing had changed in intake wise, in terms of soda's food only thing that did change is I tagged along for taking the dog on a walk with the whole family last night but I need to do that more often anyway, so I start gettting out of the house moreand not sitting on my butt as muich, I'm still dazed and confused as I write this to you all and its taken roughly 30 min to type just this to you guys.
mike

 

[Silat]

Keppra, for me, took about 3 weeks to start having a noticeable effect. 9 days seems a bit too soon to make any decisions about whether or not you want to keep with it. It sounds to me like you've noticed a difference already, judging by you comment: "I had a seizure, but 1 seizure in 9 days is a better number than before." so I'd stick with it for a while and see how things work out in the longer term.

 

[thornton8000]

I went from having a lot of sps and nightly with urintaion to none after adding the keppra to my topamax 9 days ago my seizures stopped cold turkey 4 hours after adding the keppra it was a godsend, so like I told my neuro I've been waiting for the kicker and that came last night, I hope that it doesnt continue, since it's been going on since I've been in 6th grade and constant since I was 15 and daily for 7 years, but no doctor wanted to believe me till the "squeaky" wheel finally got some oil so to speak. I plan to stick with the keppra and see a new neuro very soon and going to try and get my keppra upped and my topamax upped as well, since my symptoms are coming back, But I understand what you are saying Silat!
Thanks
mike

 

[Cint]

Hi Thornton,

When one changes medication(s), it does take several weeks for the body/brain to re-adjust to it. I've taken numerous AED's and it took several weeks for me to slowly adjust to the medication as my dr. slowly increased the dosage. When your wife told you to go sit down, maybe you had a SP (or an aura) and just don't remember. That happens when starting meds, and saying they stopped cold turkey after 4 hours is a bit too soon to make that assumption. I now take 3000 mgs. of Keppra and 200 mgs. of Topomax, but I started Keppra on something like 500 mgs(?), but that was years ago for me. Plus, I see an epileptologist (doctor specializing in epilepsy) and not a regular neurologist. I know there is one in St. Paul. Maybe your neuro could refer you to one.

Good luck.

 

[thornton8000]

I've seen one and she said PNES even tho my seizures stoppedwith the additon of the keppra for 9 days until last night she didn't want to listen to me or my wife about anything that was going on with my seizures or how they were or how my wife was trying to describe them to her and when we told her how I had a TIA stroke back in june and how all my MRI and CT's are clear other than my TBI back in 95 from a bicycle accident when I had a MD say I had a seizure that lasted for 5 min and then they were able to stabilze me for transport to the ER since I was flailing from the TBI, I also personally know the 1st officer that was on sence of my accident and he stated that yes the MD that saw you have a seizure stabilzed you till the ambulance showed up we got you on the back board and took you in and after 5 mins you were ready for trans port your seizure was over and you were still flailing from your TBI but the MD said your seizure was over. But the neuro and EPI didn't and dont want to listen to any of this information stating that this has nothing to do do with what is going on with me today.

Mike.

PS and thank you CLint, I do understand that 4 hours is a short period of time that's why my wife talked to a nurse she knows that interned in a neuro clinic and asked her the same question, she stated that yes its a short time but it could have worked in that short of a time frame since your husbands seizures are inbrain seizures and keppra works best for inbrain seizures. I've known this lady for 5 years personally and she's like a 2nd mom to my wife and she's such a sweet old lady, (if my parents were still living I'd be getting the back of the hand right now lol) (born in 36 and 38) but loved them just the same! And thank you one and all!
CWE is my 2nd family on line!
Mike

 

[Silat]

I was going to ask you to consider seeing a new Neurologist, considering you feel like yours is disregarding what you're telling them... but then I noticed you said in a previous comment that you were seeing a new Neurologist very soon.

If you have your Keppra increased, be mindful of the personality changes that can accompany that. It's a side effect that you'll want to watch out for. I'd recommend trying to stick with your current dose a while and seeing if, after a while of being in your system, if it can manage things well at that dose. You're in the beginning stages of it being in your system, so it's probably too soon to tell if you need a dosage increase.

 

[valeriedl]

Alot of times when I have a seizure I'll talk and don't remember doing it at all. I even think I may have told my husband off once during one once. His son was here when I had it and got really mad at me because of the way I was talking to him. He told him that it was normal and I don't know what I'm doing.

Nine time out of ten I'll have a horrible headache in the world. It will last for hours. I'll try to sleep it off but when I wake up it's still there. Could you have had a seizure in your sleep and when you woke up that's why you had the headache?

Depending on how bad the seizure is I don't know what I do during it. My husband tells me that I'll smack my lips alot of the time. I don't know if I'm moving my whole jaw when I'm doing this or if it's just my lips. Could that why your jaw was hurting?

The last seizure I had I peed myself. I was asleep on the couch but I think I woke up before or during it though, however when I came completly too I didn't know I had it. This was the first time I'd peed myself. We just saw that the back of my pants were all wet. I thought I was sweating really bad until we saw that the croch of my pants were soaked too. I haven't had any changes to my meds for a while now.

Alot of times if I overexert myself I'll end up having a seizure. I always take a 2 hour nap every day in the afternoon and if I miss my nap for a few days in a row I tend to have a seizure.

About going 9 days without having a seizure is good for me too.

 

[thornton8000]

Thank you Valeriedl,
I had my wife read you reply, she's still trying to understand all of this and most of the time when I show her these posts she gets a migraine since most of it makes no sense to her and confuses her, I asked her to read yours and said does this not sound like me to you all the time?
and she stated back yes it does So again thanks to my 2nd family on CWE I dont feel so alone even tho my PCP and neuro dont want to listen to me and tell me its all in your head kid even tho in 24 min i turn 32 years old they still call me a kid (gotta love it!)
Thank you everyone for you love and support
it means alot

mike