Hello! Just joined. A little about me...

[EC77]

I'm on 600 epilim but have been given the option to transfer onto 500 x2 Keppra to counteract extreme weight gain. How have you got on with Keppra. I was lucky enough not to be on meds during my pregnancies but did worry about labour/sleep deprivation triggering seizures. I do think hormones protect you to some degree as I never had a problem despite having 3 babies in less than 2 years!!!! I don't have babies but do spend a lot of time with the children on my own & having them witness a grand mal seizure & for the youngest to call an ambulance when she was only 3 years old has made me apprehensive about the change.

 

[epilim0505]

Hi there, I am doing well on keppra thankfully but it is early days but hopefully seizures won't return. I am only off epilim for about 6 days now and on keppra for about 3 months. Some ppl have a terrible experience with it and truthfully I had a horrible few months coming on it esp when dose increases but after a week on a new dose I was fine but there were lots of bad moods, intolerance, crying, excessive thirst, insomnia and loss of appetite. But I stuck with it and my body has adjusted and I dont have these side effects anymore although I still sometimes have intolerance and I speak my mind more now, maybe not a bad thing.... sometimes hehehe. It won't suit everyone, I can imagine someone who is already prone to depression or very moody usually might struggle on keppra. I thankfully didn't have weight probs with epilim. But now I am off it I can see that I have lost some puffiness/weight but I was always small/medium size anyway. Maybe give it a go, hope it works for u.

 

[Spike]

Increasing Keppra and side effects

epilim0505 like you, my daughter was on Epilim (for 10 years and it controlled her seizures perfectly) she has switched to Keppra (1000mg) because she is planning a family, she's been on it for 3 months. She's had 3 episodes of being angry and unreasonable, where she won't give up on an issue and just keeps going, going, going, and she is now very outspoken (just like you said)...we now know that is the medication. Thank you for yours (and others) posts, it has confirmed that it is the medication. The other problem is Keppra was working well, but she is starting to have some pre-seizure activity (eye flickering, vagueness), she is also finding it harder to sleep and is consequently more tired, so we are going to ask the Specialist about increasing the dose (but he's on holidays so I just want to do some research before we go). I note your specialist said increase 250-500mg, have you had to do that yet? I'm thinking we may have to. So, some questions for everyone

1. My daughter is upsetting people outside the family with her angry bouts and is very embarrassed about it. So should we stick with Keppra or switch, will it just get worse with increase in dosage? I have also written down the advice on supplements she can take and will follow up on that.
2. Have other people found Kepprage decreases over time;
3. Has anyone had success switching from Epilim to another medication which is safe for pregnancy?
Any advice anyone has will be greatly appreciated, so glad I found this forum.

EC77, my daughter put on weight with Epilim and in the 3 months she was on Keppra has dropped at least 3kgs-she says she doesn't feel very hungry on Keppra.

 

[Janus]

HI, welcome. I am now adding Lamectal to keppra to seee if that will stop some of keppra side effects (rage! etc. ) and the hope is that if the new works well with keppra we could try slowly eliminating keppra and see how that goes. So I am just trying to follow instructions exactly and SLOWLY tapper in the lamotrogin. (sp?) Best of luck! stay in touch.

 

[epilim0505]

epilim0505 like you, my daughter was on Epilim (for 10 years and it controlled her seizures perfectly) she has switched to Keppra (1000mg) because she is planning a family, she's been on it for 3 months. She's had 3 episodes of being angry and unreasonable, where she won't give up on an issue and just keeps going, going, going, and she is now very outspoken (just like you said)...we now know that is the medication. Thank you for yours (and others) posts, it has confirmed that it is the medication. The other problem is Keppra was working well, but she is starting to have some pre-seizure activity (eye flickering, vagueness), she is also finding it harder to sleep and is consequently more tired, so we are going to ask the Specialist about increasing the dose (but he's on holidays so I just want to do some research before we go). I note your specialist said increase 250-500mg, have you had to do that yet? I'm thinking we may have to. So, some questions for everyone

1. My daughter is upsetting people outside the family with her angry bouts and is very embarrassed about it. So should we stick with Keppra or switch, will it just get worse with increase in dosage? I have also written down the advice on supplements she can take and will follow up on that.
2. Have other people found Kepprage decreases over time;
3. Has anyone had success switching from Epilim to another medication which is safe for pregnancy?
Any advice anyone has will be greatly appreciated, so glad I found this forum.

EC77, my daughter put on weight with Epilim and in the 3 months she was on Keppra has dropped at least 3kgs-she says she doesn't feel very hungry on Keppra.

Hi folks, i will answer this post shortly. Ec77 have you changed to keppra already? Hope you are ok. I am now 5 weeks pregnant, thankfully my severe keppra side effects calmed down so i was happy to stay on it and we started ttc, thankfully worked first time:roflmao: i am just hoping and praying that things go smoothly.

 

[Spike]

epilim0505 congratulations on the pregnancy, that's great the Keppra is working out for you!!

 

[epilim0505]

Hi spike, thank you. Sorry for the delay in responding. Ok, just some brief points, i am very unwell at the,moment and will answer better asap.
If your daughter can give the keppra a chance, my kepprage calmed down but unfort every time i went up in dose i had rotten side effects for about four or five days each time but after a week i was ok. How long is she on keppra now. I had a bad appetite initially when i went on keppra but this improved. I think i always went up in 250. If she is having pre seizure symptoms, more likely she will need to increase so talk to neuro about this. Please keep asking me any questions. hope all goes well for her, i know all about then tears, the outspokeness, the going on about things and not letting it go, it is not easy. Keep in touch. Keppra is not for everyone, but if she can stick with it til effects ease. Plenty of hugs and deep breaths are good.

 

[epilim0505]

Oh and if she is ttc now, is she on 5mg folic acid and conception prenatals. I found them good. Obv, best to not ttc until she is more settled.

 

[Janus]

I have started having wild bouts of kepp-RAGE outbursts that suck. And i have been on the stuff for years. But recently added Lamectal in small increasing amounts. I do not know if that is related. Thanks for posting.

 

[Spike]

epilim0505, hope you feel better soon. So good to have others to bounce this off, we're still waiting on the specialist to confirm increasing the dose. I've got my daughter taking a womens multivitamin but will ask about the B6 and B12 and some other things I've written down from this very helpful forum. She's not TTC yet, probably a year away, so she's got time to adjust medications which is good. We've talked to family and her boyfriend's family about the rage side effects now, so everyone is on the same page which is good, her poor boyfriend was copping a hammering-he was thinking it was something he was doing wrong. She was a reserved person outside of the family before Keppra. We're all working on being less sensitive when she goes off and remembering that it's just a side effect-will add in more hugs!! She says she can feel it building for about a week before, seems to be a monthly thing.

Janus and epilim0505, what helps you come out of the rage, what things can someone say or do to help? Hopefully Janus your kepprage is temporary.

 

[Janus]

Spike, thank you for the vote of confidence. I will say it just comes on and passes after a few minutes. Unfortunately those minutes include my raising my voice at some poor person that just happens to be there. I am remorsefully impenitent after. Hope all the best in your case. It sounds like your doing the best for your daughter by being informed and understanding.

 

[SlimBlue]

I am remorsefully impenitent after.

I'm not judging your reaction to it- sometimes it can take me a while to accept I was wrong, and I know that feeling of being 100% certain :S

I do try and appologise afterwards tho- most times it's straight after if it was just a quick outburst, longer if it's part of an esculating arguem.. debate

Humility can be hard to practice in real life, but I find it's often better than feeling like crap and guilty about it, afterwards...

Only polite too, I guess lol

 

[London2015]

Hi epilim0505

I know this thread is a little old but will be changing from Epilim Chrono to Keppra over teh next few months. How did you get on with Keppra over the longterm? Did you stay seizure free?

I'm quite worried by the possibility of having seizures as I haven't had one in years. It will mean being super-vigilant about late nights and alcohol intake too.

It would be great to hear of anybody's experience with this situation :0) Thanks!

 

[Nakamova]

Hey London, welcome to CWE!

Below are links to some CWE threads that reference Valproate/Depakote (Epilim) and Keppra. Hope they help. And feel free to introduce yourself in the foyer -- you may get fresh answers to your questions.

http://www.coping-with-epilepsy.com/forums/f23/depakote-keppra-going-good-but-question-7624/
http://www.coping-with-epilepsy.com/forums/f20/keppra-vs-sodium-valproate-21470/
http://www.coping-with-epilepsy.com/forums/f20/sodium-valproate-keppra-any-other-advice-22058/
http://www.coping-with-epilepsy.com/forums/f20/hello-just-joined-little-about-me-15943/

 

[EC77]

On an even keel!

Hello! I've not been on here for a while but just thought an update may help answer your questions.

It has now been 16 months since I started introducing Keppra. I stayed on Epilim 600mg, started on 250mg Keppra for 2 weeks, then 500mg for a month, then up to 1000mg after that. The first increase was not too bad, maybe felt a little drunk / spaced out. This was much worse with the final jump from 500-1000mg. After another month I came off the Epilim 150mg a month.

Weight wise I started to lose the Epilim weight within about 2 weeks of starting Keppra (still on full Epilim dose). The main issues for me were dizziness, a bit of nausea, headaches and insomnia, not much 'rage' but feeling a little hyper, mainly, I think, due to the fact the Epilim had made me feel so subdued. (My husband said I just started nagging at him again "like I used to", which was a good sign for me!) I read that it can take 6 months for your body to adjust so I grit my teeth & tried not to panic about/ focus on any of these problems.

Now I have been seizure / aura / partial seizure free since. Have much more energy, no more feeling 'foggy', sleep really well and feel like I have my life back, my car back & feel like I am a proper mummy again.

I hope that you find Keppra works for you too.

 

[Ruth]

Anyway, I changed to Epiliand never looked back. I celebrated 10 years' seizure-ree this past February, having taken 600mg of Epilim daily since 2002.
/QUOTE]

Welcome Pianogal to CWE. Congratulations on being seizure free for 10 years.

CWE was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.