What's your first dose when starting out o... - Epilepsy Action

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What's your first dose when starting out on Keppra?

ollies41 profile image
5 Replies

Hi, I've just been told to switch from Lamotrigine to Keppra, but not given a starting dose. The neurologist said to head for 750mg x 2 per day, but no other details, then he retired!! . How has anyone else started?

thanks

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ollies41 profile image
ollies41
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GillyA profile image
GillyA

Switching medications needs real care. If you don’t have access to your specialist, you might try talking to your GP. When I did it it took a period of 2 months or so with dosage changes every few days. I really wouldn’t try without a clear plan. Your specialist hasn’t served you well in my view.

busylife profile image
busylife

Keppra, or rather its generic form Levetiracetam, has been my only drug since being diagnosed with "mild epilepsy" in late February 2021. I had a nocturnal tonic clonic seizure (my first seizure at the age of 62) at the end of Sept 2020 and was told it might never happen again but the hospital referred me to have an EEG done. It was done in Feb 2021 and they said it showed "slight seizure activity" as a result of which I was put on the epilepsy register and asked to go on a low dose of medication.

That dose was 500mg in the morning and 500mg at night. I wasn't having to come off any previous medication. The GP advised me to take 250mg morning and evening for a week in order to get my body used to the drug. He said to cut the tablets in half which was easily done. I did this and felt some side effects for a few days. I felt sleepy within about 45 minutes of taking the tablet and for about 3 days I felt unbalanced while walking - almost as if there were weights hanging down my back from my shoulders that were going to make me topple over backwards. However, by day 4 the side effects had gone. Then on day 8 I started to take the 500mg each time and the side effects came back - not the lack of balance but the sleepiness. But again, after about 3 or 4 days those side effects went away.

That dose stopped my absence seizures but unfortunately I had a further nocturnal tonic clonic seizure at the end of June 2021, as a result of which the GP recommended upping the dose to 750mg at night and again in the morning. I've been fine since then - 8 months with no further seizures.

I would be very hesitant, going by my doctor's recommendations, to jump straight into taking 750 mg. I think it's something you need to build up to and that's not taking account of the fact that you need to wean yourself off the Lamotrigine that you're currently taking.

I think you definitely need some more input from at the very least your GP, if you can't see a specialist.

EpilepsyAction1 profile image
EpilepsyAction1PartnerEpilepsy Action

Hi there - we have some information about changing epilepsy medicines that you might find helpful: epilepsy.org.uk/info/treatm...

This explains that your doctor should give you clear instructions about how to change medicines. The usual way is to start taking the new medicine at a low dose, alongside your existing one. The dose is gradually increased until you reach the maintenance dose, then the old epilepsy medicine is gradually reduced. This can take several weeks or even a few months to do.

There may still be an epilepsy nurse you can talk to at your neurology department. Or your consultant may have sent a letter to your GP advising how to change your medicines and the doses they advise.

If not our advice would be to check things out with your GP. You are welcome to use our information to talk things through if it helps.

I hope you can get this clarified soon.

Regards

Mags

Epilepsy Action Helpline Team.

Considine profile image
Considine

I agree with the 3 previous replies. Following a nocturnal seizure which resulted in an ambulance trip to hospital for a suspected heart attack I was discharged as all tests proved normal. However, my absences, forgetfulness increased and I was referred to a neurologist who diagnosed 'Transitory Epileptic Amnesia' and I was prescribed 250mg of Keppra twice a day for a month. During that period I was light headed and dizzy and tended to wake in the middle of the night. My medication increased to 500mg twice a day and proved successful.During a period that I was proactive in a number of organisations and causes and stressed I had a second nocturnal seizure that dislocated and fractured my left shoulder which required surgery and pinning. My neurologist did not increase my medication following a scan of my temporal lobes. I have since resigned from various committees and strive to de-stress. I am still forgetful but my brain appears to prioritise what I have clear recall of, it's the relatively unimportant that I forget. I would be wary of commencing 750mg twice a day. It is important to take the medication evenly spaced 12 hours apart. I have a timer alert on my mobile phone. I also suggest that you attend your local group to share your experiences and learn from others.

Best wishes

busylife profile image
busylife in reply to Considine

I also have the timer set on my phone for 9.45 a.m. and 21.45 and I carry a couple of tablets in my purse so that even if I'm not at home I always have them with me. I have found that it helps to be consciously aware of actually taking the tablet. It's so easy to take it automatically and then wonder afterwards if I've taken it or not. So, as I take it I usually say to myself "It's Thursday morning and I'm taking my tablet!" I know it might make it sound as if I'm crazy but I can live with that as long as my medication does the job of preventing further seizures.

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