Aptiom update

[masterjen]

For those interested:

Decided on Feb. 25 to give this one a try. It is a once per day medication. It can be taken any time the doctor/patient chooses as long as one is consistent with when they take it. My choice was night because 99% of seizures are at night.

Typical titration is starting at 400 mg and increasing in 400 mg increments every week, but on my epileptologist's recommendation started at 200 mg and increased by 200 mg every week to minimize side effects. I have been at 800 mg (likely where I will stay) for just under 4 weeks. First 2 weeks at 800 mg. I had a lot of sleepiness even during the day despite taking it at night. That subsided substantially but over the past week or so have had a lot of headaches, sometimes fairly severe. These typically subside after 6-8 weeks. The good news is that seizures have been reduced in frequency by 30-50% and intensity by the same amount, with much less tendency to cluster. This is the first time in 6 years of having seizures and trying 6 prior medications alone or in various combinations that I have had anywhere near this degree of improvement Here's hoping it lasts.

 

[seagull]

that great hope it just keeps getting better

 

[txtiger]

Great news! Hope it keeps up or decreases frequency even more!

 

[Bernard]

In the previous Aptiom thread, I misspoke about my wife's experience - confusing the side effect she was having with ONFI as pertaining to the Aptiom. Since then, we had another visit with her neurologist and he made another adjustment to her medication schedule to try and help balance the side effects (even though she had been having very good seizure control). So, he upped her Aptiom from 800mg to 1200mg and lowered her ONFI dosage.

My wife tried that for roughly 3 days before she had a violent and terrible reaction to the Aptiom. She got super nauseous (dry heaving/vomiting) and dizzy (couldn't walk - was crawling around the house on all fours). She thought she was going to die. She looked like she had had a stroke. After talking to the nurse at the neuro's office we went back to her previous dosage levels and all is well again.

I'm glad you are tolerating the Aptiom well and it is helping with your seizure control. Cheers.

 

[masterjen]

Sorry your wife had such a negative reaction to a higher dose, Bernard! I am hoping to stay at 800 mg, but would consider increasing to 900 (since the 200 mg pill has a cut line) and maybe attempt 1000 mg if I don't have worse side effects at 900 mg.

Just out of curiosity, when does your wife take the Aptiom? I take it at night because the majority of my seizures are nocturnal. Perhaps because I am in bed and asleep I don't notice imbalance and nausea (?)

 

[Nakamova]

Glad to hear the Aptiom is making a positive difference MJ. Keep us posted.

 

[Bernard]

My wife takes the Aptiom (and ONFI) at night (~9pm). The night that she had the bad reaction, it started around 5am and lasted all day long.

 

[guest]

hello i am not new to seizures i have had them from 15 years old to now but my depakote 250mg 2 times a day worked great but got a now nerot doc and they changed it to aptiom 400mg and what a mess it has made me so sick i have to been anywhere at all it has messed up the left side of my gut and if i am not better sat i am going to the hosp
and to let all of you know the department of health says the printed advertisement for aptiom that the print advertisement misbrands it it does not do what they say it does

 

[masterjen]

Welcome to CWE, guest

Sorry about your experience with Aptiom. It is important to realize, however, that everyone is affected differently by the different anti-seizure medications, so to say that the print advertisement misbrands it is not true. The print advertisement refers to how patients did during the various trial phases of the medication, but because not everyone reacts the same to this medication it may simply not be the right one for you.

For me Aptiom has been a wonder-drug: over the past 6 years I have tried 6 or 7 different seizure medications alone or in various combinations either with little improvement in seizures or negative reactions to the medication. I am on 900 mg of Aptiom and finally after 6 years I can say I have about a 50% reduction in seizures. The only side-effect I personally have had is a dull headache for a few days after a dose increase, and then that settles down.

I wish you luck, guest, in finding a medication that works better for you. Tell your doc that Aptiom is causing intolerable side effects.