Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Self weaning off Keppra

Sun, 07/24/2016 - 14:16
Hi! I'm new to the forum, so hello everyone. Below is a bit about my epileptic story and the dilemma I'm currently facing - any advice/similar stories/reassurance would be great! I'm currently 24, but at the age of 15 I suffered a grand mal seizure after about 6 months of experiencing 'auras' which the GPdiagnosed as migranes and told me to get over it pretty much. Once I had the grand mal seizure, I went for a bunch of tests, the most important ones being and EEG and a sleep deprived EEG. Both said there was mild epileptic activity, so I was placed on meds. After a couple of months, i experienced side effects and then went onto 250mg Keppra twice daily. Every few months I would experience what I can only describe as 'funny turns' then had a suspect seizure in my sleep (no actual proof of this though, just from what I told my neurologist he said it was) then my dose was upped to 50mg twice daily... I continued to have funny turns every 6 months or so.. so the doctors upped my meds to 1000mg twie daily... a little extreme if you ask considering my turns didn't make me unconscious, only lasted a few moments then I would go back to normal.. the whole time I was having them I could withstand a full conversation, all beit a very panicky one with my mum, friend or partner, as I was so scared I was going to seizure... SO currently, I'm going through some personal stuff and I really really don't want to be on my Keppra anymore. I haven't had a seizure for 9 years! I had a very mild turn roughly around a year ago but since then been fine. I have literally gone cold turkey with my meds for the past 3 weeks and have been absolutely fine. All apart from the past couple of days HAVING to go to sleep around 5/6pm in the evenings for an hour or so... and the evenings I'm working I'm KO'd by 10pm. Is this normal? I know it's frowned upon going cold turkey on my meds, but I have started to get a bit of anxiety now... as taking them was more of a comfort blanket, I knew I wasn't going to seizure on them, and now I just don't know. And anxiety has been one of the worst things for me since I got diagnosed with epilepsy, it really knocked my confidence. I'm going to book a docs appointment very soon to discuss everything above... but do you think I'll be ok? Or would you advise going back on them and doing it 'properly'? I think I've answered my own question haha... but just wanted some advice/any similar stories.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.