Epilepsy medication and side effects

Epilepsy can be successfully controlled for the majority of people with the use of anti epileptic drugs (AEDs). However side effects play a role in the lives of many of those, though they usually outweigh the effects of not taking the medication. To start a reminder that you should not stop taking any prescribed medication without seeking medical advice first! 

my experience with AEDs has been ongoing and frustrating, very frustrating. For about the last two years I have been taking 100mg of Lamotrigine (Lamictal) twice daily and 1250mg of levetiracetem (Keppra) twice daily. These have controlled my seizures at around the 80% mark though they are no longer as effective as they once were and I am due to have this reassessed by my specialist in January. I have taken a lot of different meds in my time but have only chosen three to break down in this hub as these are the three that stand out for me.

Levetiracetem - Keppra

This is a medication that remains quite popular as most people seem less sensitive to the side effects and it interacts well with a few other AEDs. It can also be used for adults, children and infants as young as 1 month though dosage and types of seizure controlled can vary in age group. Doses are started low and then increased over a few weeks or months and a specialist will help you with this until the desired dose is reached. Normally for adults this drug can be started at 250mg daily but is sometimes started at 100mg daily. The recommended highest dose to be prescribed is 3000mg daily, this should be given at 1500mg twice a day as should all previous doses unless slow release is used. You are likely to have side effects to start with these normally settle within a few weeks after last dose change.

Side effects

The most common side effects are sleepiness and tiredness/fatigue and forgetfulness. Other common side effects include dizziness, weight loss or gain, double vision, coughing, headaches/migraine, nausea, eczema, loss of concentration, depression, suicidal thoughts, hair loss (and of course) seizures, to name but a few. If these are serious or do not go away then please seek advice from your doctor. My own experience with Keppra after the stated 2 years I've been taking it I still have migraines, tiredness, hair loss and forgetfulness but I mostly have had them to a level I was willing to live with (keeping painkillers handy and taking naps when I can).

Lamotrigine - Lamictal

Still quite a new drug but interacts well with others is also used to treat bipolar disorder. Most people don't seem to have much problem with side effects but like any medication if you manage to get them they are not pleasant to live with but do they outweigh having seizures? Generally yes which of course is why people put up with it! Normal adult doses start low and then build up as other AEDs do they tend to start as low as 25mg daily and can be increased to 700mg daily. These doses should be split into two so 700 should be 350mg in morning and same at night. Please remember that side effects are likely to be worse when starting the drugs and should settle after a few months but any concerns see you doctor.

Side effects

Most common side effects are headaches, sleepiness, dizziness, clumsiness, blurred vision, nausea and skin rash. Other common side effects include irritability, aggression, shaking, insomnia, tiredness, pain in back and joints, depression, suicidal thoughts/thoughts of self harm, dry mouth and seizures. My own experience is similar to effects mentioned before as I take both these drugs I can no longer be sure which effects come from which however I get the clumsiness and insomnia from this one. Mixing insomnia with tiredness is not an easy task! The big reaction I had with this drug when I first took it was suicidal thoughts, it was hard to believe that a medicine could do that to me! However at that time the dose was higher and we have found that providing I don't go above my current dose of 100mg twice daily I don't have this problem.

Sodium Valproate - Epilim

Used around the world under a lot of different names and in many different forms. I took this medication some years ago and will not be trying it again! However for many many people this is the one that works so if you're new to it give it a little time. Adult dose normally goes from around 600mg up to 200mg daily though sometimes as high as 2500mg daily again unless slow release this is normally given in two doses daily and increased over time.

Side effects

Some of the side effects include lathargy, diarrhoea, nausea, dementia, forgetfulness, breast enlargement in men, irregular periods in women, hair loss, hearing loss, hallucinations, weight gain, depression, suicidal thoughts, hyperactivity, aggression, bedwetting and of course seizures! My own experience was quite severe and as I said this doesn't mean it will be your experience, I forgot where I lived I forgot names, forgot places and basically couldn't do anything about it. 

Overall, keep trying. Give each medication a good go but don't be afraid to share your concerns as I said at the start most people have their epilepsy completed controlled through medication and there are a few to choose from. Also keep in mind that if you are pregnant or planning to become pregnant that you must see you doctor first as some epilepsy medications can cause birth defects and pose a high risk to mother and child.

Be happy, be safe and good luck!

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Comments 6 comments

Vigdís Ágústsdóttir 6 years ago

Many side effect of AED´s as insomnia, can be bad for us with epilepsy, anyway it is dangerous or me. And when the AED´s make trouble for us to use our brain, make people dizzy, it is very bad way of doctors to try to help us with AED´s. I hate AED´s, we have to get another way to cure epilepsy.


Diffugere_nives profile image

Diffugere_nives 6 years ago Author

Hi Vigdís Ágústsdóttir thanks for the comment. I agree that specialists need to find other ways and know that research is being done in the hopes that this can happen. Unfortunately even though epilepsy has been around thousands of years it's still not fully understood so can't be successfully controlled for everyone. However, it does help many. The side effects are unpleasant and difficult to cope with and I hope, just like you, that one day there will be a way we can be seizure free and still get rid of the mind fog that comes with AEDs. Thanks again and good luck with your health.


Riyaad 4 years ago

Hi everybody,im 19 and these are the meds i take.redilev 1500 twice a day,trileptal 600mlg twice,phenobarb 200mlg twice nd toplep 200mlg twice daily.i've had just about every AED there is nd still my epilepsy isn't gone but its helped to a certain extent.im sure each one of you go through the same thing as i nd i wish you all the best.we will find a way all of us.we just have to keep strong.i have sleepless nights,dizzyness,constant headaches,abdominal pain nd i can go on naming but i wont stop until i find the right coctail.


Rentia 4 years ago

My husband use redilev and epilim.can this cause high blood pressure?

Thanks


Emkatster profile image

Emkatster 24 months ago from Los Angeles, CA

These AED's are almost as bad as the seizures! Keppra made my daughter practically psychotic; Lamictal gave her a rash all over including inside her mouth and we had to take her to the ER. Depakote made her projectile vomit. She's been on neurontin for a couple of years and it dulls her otherwise sharp mind. But she has chronic daily migraine and the doctor added Vimpat. Almost a week so far and side effects, whatever they will be, haven't kicked in yet. Thanks for sharing your experiences!


Luna 21 months ago

Thank you for the great review of my peroenalizsd pillow case. I am so glad that Isaiah likes it. I know by your comments that your plate is very full. Thanks for taking the time to do these reviews and sharing a little of your life. I commend you for doing an awesome job of raising your three children. May God bless you and yours.

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