For those on Aptiom

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masterjen

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I know a few people here have tried Aptiom in the past year or two, and I'm wondering how you are doing on it now that some more time has passed. It is relatively new for use in Canada, and has been presented to me as an option to try as an add-on.
 
Hi Masterjen
I have been on Aptiom as my secondary med. for simple partials, only for about 4 months though. So far I am pretty impressed with it. Even though I was still having simple partials, all of those real nasty after effects I used to get after the seizures have gone away. I used to get really bad confusion, depression, headaches or all 3 after my seizures that would last for an hour to a day.
I just got bumped up from 800 mgs to 1200 daily about 3wks ago and so far no more seizures & no noticeable side effects other than making my hand tremors a tiny bit worse. I have a bad tremor in my left hand/arm.
Not saying it is a wonder drug but definitely one worth looking further into.

How are things in British Columbia? I drove thru there on my way to Alaska back in another lifetime. Well in 1977. That feels like another lifetime ago. Sure liked that area back then.
Hope all works out for you.
Ed
 
Hi, Ed
Thanks for your input. I'm to start (if I choose to start it) at 200 mg, and go up in 200 mg increments weekly until I get to 800 mg. Do you take it at night, morning or in the middle of the day?
So you have been to BC?! Cool :) It must have been quite the place in 1977, with all the parks and open land yet to be occupied by us human invaders. I grew up in small town BC, but as you can see now live in the largest city of BC. The province is still very beautiful; just have to travel a little further to get to the forests these days.
 
Hey Masterjen
Ive been taking all 1200 mgs at night. I cant really say that it actually makes me drowsy. I think about everything makes me drowsy these days. My neuro suggested taking it at bedtime so thats what I stuck with.
We loved it up there. The country was beautiful and the people were great. I grew up in small town Texas so have ended up with quite the Texas draaawwl. About everytime I opened my mouth I would get a huge grin and a big chuckle.
Good luck with the med changes
Ed
 
I thought I put in my location that I live in Vancouver, B.C. but I didn't. Anyway, yeah, the big city came calling when I needed to go to university and then get a job. But I am still small town at heart.

Virtually all my seizures are nocturnal so I suspect I will be told to take the Aptiom at night as well. I'm glad it has gone well for you!
 
My wife is currently taking 800mg daily. It is helping with her seizure control.

She might just be sensitive to it, but she experiences strong and noticeable side effects with emotional control (inappropriate rage/yelling) and communication (can't find the right words to express thoughts in her head).
 
My wife is currently taking 800mg daily. It is helping with her seizure control.

She might just be sensitive to it, but she experiences strong and noticeable side effects with emotional control (inappropriate rage/yelling) and communication (can't find the right words to express thoughts in her head).

I know everyone is affected differently by the various seizure medications, but a side effect of rage/yelling does not impress me. Fycompa causes me to over-react enough as it is to annoyances and frustrations.

My seizure specialist emailed me today (out of the blue, on a Sunday!) to say that I could also consider trying Clonazepam as an add-on - at night only since my seizures now are largely only nocturnal. My biggest concerns with this one is that the dose often needs to be increased over time to have the same effectiveness and that it is addictive.
 
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Hello Masterjen
I didnt have any rage issues with the Aptiom at all. I did have a rage problem when I first started Kepra but that all died down when I added a B complex daily. My seizures did make a comeback the other day however, but still no after effects in spite of having a fairly strong one this morning. I am about ready to give up on trying to control them since they are just simple partials. I dont think I can do another increase in dosage. Hell maybe this is just my little time of the month.
Take care
Ed
 
To be fair, I'm not sure if the rage/yelling is really attributable to the Aptium or not. She is taking ONFI as well and she was having that issue with the ONFI before adding the Aptiom to the mix. I overlooked that point when I last posted. Sorry.
 
My wife is currently taking 800mg daily. It is helping with her seizure control.

She might just be sensitive to it, but she experiences strong and noticeable side effects with emotional control (inappropriate rage/yelling) and communication (can't find the right words to express thoughts in her head).

Hey Bernard we need to talk....:) For the past month I was increased on Aptiom; I was taking 200 once a day and doing just fine now the epilepsy specialist chose to boost and it has caused a problem I think. This morning out of nowhere I just flipped out on my husband for no reason in this rage.

I'm gonna write an email to the nurse tonight and let them know.
 
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