Updates About Aptiom

[thirdeyeblind_girl]

Hey again. A week or so ago, I put up a thread about being new, needing help and opinions and being on the lovely drug Aptiom. I was told it was insanely new and to give feed back on it. Well here is my feedback.

IT SUCKS. THIS DRUG DOES NOT GET ALONG WITH MY BODY WHATSOEVER.
(Obviously that doesn't mean that it won't agree with you)​

When I first started taking the drug maybe 3 days into it, I didn't notice anything. I was already having trouble sleeping because I had anxiety about seizures in my sleep. (The seizure I had rocked me pretty hard). However I'm going past the 2 week mark and I have to say that I think I may have gotten 5 hours of sleep total in the past few days. I can't sleep at all. My eyes are so heavy but I can't actually get to sleep. I used to have a pretty regular sleep schedule too. I woke up at 6 AM and went to sleep at 11/11:30 PM. Now, even with ZZquil and other sleep aids, nothing. Can't sleep unless my body fully crashes and even then I'm not getting actual hours of sleep. I emailed my doctor about it through "the patient portal" and the "usual turn around" for a response is 2 business days, and I have heard nothing about what to do. I take the pill at 6 AM. Another lovely side effect I had is, I'm not hungry at all. Like AT ALL. Which is insanely weird because I LOVE food - like LOVE it. I have to force myself to eat which makes me feel even worse. I called my family doctor since I couldn't get in touch with my neurologist and she suggested that I try and eat food WITH the pill in the morning, I told her about my stomach and the nausea and she said it may help. It didn't. Needless to say, my body feels like crap. I'm tired all of the time, but can't sleep or eat, and I ache. But I'm assuming the aching is because of the lack of sleep. Also, I'm assuming my snappy attitude has something to do with both of those as well. I haven't been the most pleasant person to talk to. I'm getting blood work done for low sodium levels in a few days because of the pill, and I actually just got a call from the secretary and they said they could get me in on Wednesday to talk about the side effects.


BUT, these were my interactions with the drug. If anyone else has taken it, or had any similar side effects, let me know or feel free to chime in.

 

[masterjen]

Every drug is different and every person's reaction to every drug is different. I have never been on aptiom, however I can say that it has taken as long as 6-8 weeks for me to adapt to some medications. I also found the newer I was to these AEDs the longer it took me to adapt. Maybe it had something to do with all these side effect issues being so new to me, that now to notice side effects when starting a new medication is almost like "old hat". Good luck with your upcoming appointment.

 

[Nakamova]

Zonisamide messed with my appetite/mood and the side effects persisted for the whole time I was on it (6 months). I switched to Lamictal, which messed with my sleep -- very restless with vivid dreams -- but those side effects went away after about 6 weeks at a stable dose, and I've basically had no real issues with it (seven years and counting).

If you can hang in there, it's possible that your body will adjust to the Aptiom and the side effects will lessen. But if your side effects persist and/or get worse, let your neuro know. There may well be another med out there that will suit you better.

 

[thirdeyeblind_girl]

I saw her today and she basically was shocked that I had the opposite reaction with sleep. Most people complain about being tired all of the time. (Granted I am tired, I just can't sleep) She suggested that I stick it out for 2 more weeks to see what the deal is. The only crappy thing, is I asked about taking Zquil or sleep aids and she basically said that any time I want to try something OTC I need to ask the pharmacist first because seizure meds are super dangerous. Which is a noosense that I didn't really want to deal with BUT I'm okay with sticking it out. She said that because I am an adult, I will most likely be on seizure drugs the rest of my life because people don't really "grow out" of them and I guess it's "safer". So 2 more weeks of it for now!

 

[Nakamova]

Good luck, I hope you feel better soon, one way or another.

 

[Wendy1966]

I hope the aptiom starts to cooperate with your system. I started it a few days ago
(6/19/15). My doc wrote the prescription to be taken 'nightly'. Well, it doesn't exactly wipe me out right away so I keep taking it earlier. Tonight I took it at dinner time. It's 9:35pm and I'm still not super tired. I've had a few headaches and daytime sleepiness but that's it so far. Oh, and no real improvement in my seizures yet, but I'm only a few days in to it.
If you don't mind me asking, how was your sodium level? I had an awful time keeping my sodium up on oxtellar. My doc hopes that aptiom won't cause the same issue.
Again, I hope things start getting better for you.

 

[thirdeyeblind_girl]

Wendy1966-

Thanks. I'm on the 3rd week, or beginning the 4th, not sure lol. And I just started sleeping again. Now, my sleep schedule is all messed up, and I'm not getting as much sleep as I used to, BUT I am sleeping. So that's insanely nice, because I thought I was going to go crazy! I do feel pretty lazy/tired - but not to the point where I want to sleep, just to the point where I don't really care or want to do anything. Has your doctor ordered any new EEGs for you on it like 3 weeks in or anything? And I just got my sodium levels checked the other day, and I still haven't heard how they came back. I don't really eat much so I'm not sure how that'll show. How's your appetite too if you don't mind me asking? Any like, upset stomach or anything? Let me know! I'm still gonna stick it out for another few weeks and see how it goes. I'm also on 400mg. Is that what they started you off on too?

 

[kateconnors1]

aptiom

Can you please give me an update. Are you still on Aptiom? Is it decreasing your seizures? I have partial seizures that are really painful and they are occuring once a month on lamictal so my dr just prescribed me Aptiom today.
Have your side effects diminished? Has it been effective in reducing your seizures?

thanks in advance for your response.

 

[thirdeyeblind_girl]

welllllllllllllllllllllll about that.

So I have been taking aptiom for a while now. My sleep never went back to normal, but I do get "enough" sleep to function properly. I am still however on the starter dose, my doctor never upped the dosage because of the sleep issue. So I'm just on 400 MG in the morning. And I honestly don't know if I am the best person to ask about it helping. I've only had 2 seizures ever, and there was no reason why and they were a year apart. But since I've been on aptiom I haven't had a seizure. My doctor hasn't done and EEG.... (still unclear as to why, looking at other doctors now though) so I am not sure if it has even done ANYTHING helpful for my brain. My memory hasn't gotten any better, so who knows. Sorry it's not the most helpful.

 

[kateconnors1]

Thanks for taking the time to reply. I'm going to give it a shot and begin tomorrow. Hope you're well.