Changing medication

[VeroniqueB]

My daughter, who is in her 20s, has been advised to change from Lamotrigine to Kepra as she requires such a high dose of the Lamotrigine to keep her seizure free. Can anyone who has done this tell us their story and whether the Kepra works as well and of any additional side effects?

[chipmunk28]

I to have to have an high disease for my epilepsy but unfortunately keepers didn't suit me so I had to come of it after 4 weeks

[chipmunk28 in reply to chipmunk28]

Sorry made a few mistakes in last post I also have to have a high dose for my epilepsy so I'd tried keeper but come of it after a month as it didn't suit me

[sporan]

Hi Veronique,

Strangely enough my medication was adjusted the opposite way around.

I was started on Keppra and came to one step away from maximum dosage and the Lamotrigene was added to the Keprra and not instead of. I currently take 2500mg of Keppra (1250 mg twice daily) and 300 mg of lamotrigene (150 mg twice daily).

I still have seizures but they have reduced slightly but the reason I have seizures (complex partial with absence and simple partial) is because of a diffuse tumour in the left medial temporal lobe which I've been tol is in operable, although currently under assesment o see if biopsy and radiotherapy will be practical and safe.

From what I've read elsewher and been advised that Keppra is not always suitable for every one but for the majority of people it is a good and very effective medication with fewr down sides than other epilepsy meds.

Epilepsy seems to be such an indivdual condition that it is sometimes difficult to find the right meds or combinations of meds for each individual other than trial and error.

For me the additon of lamotrigene to the keppra was the biggest turning point in my feeling better despit still having 2 - 3 seizures a week (better than the daily ones I was having).

So my answer, or ramble, doesn't really answer your question. I've found it is a very much suck it and see situation. If it doesn't work or there are side effects that are worrying or unpleasant for your daughter just contact the neuro or epilepsy nurse if you're lucky enough to have one. There are many other meds out there that can help but for me at least the combination of keppra AND the lamotrigene seems to be effective enough.

Hoping this is of some help and wish your daughter well and hope for a great improvement for her with change of meds.

Kind regards

Sporan

[AmyBadd]

Hi,

Personally, I was tried on Lamotrigine and then Keppra. Unfortunately neither of them worked for me but Keppra seemed to have worse side effects for me personally. Luckily I am now on another drug (epilim Chrono) that works well. As everyone has said epilepsy is very individual to the sufferer.

I would question why exactly they want to change her meds if this is working well at the moment. As I was only on Lamotrigine for maybe a year, I don't know much about it, but it could be that there are side effects related to taking a high dose for a long time (for example, I know some AEDs deplete vitamin levels in the body, not sure if Lamotrigine is one of these).

Personally, I'm not sure I would want to risk having seizures again if they are currently controlled, but you need to make sure you get the full picture and understand what it is they are advising and why.

Amy

[meandme]

I used to take 1/2 400mg tabs of Tegretol Prolonged Release daily which reduced my absence seizures by 90%.Since changing to 1 tab Tegretol +_ 1 Keppra 500mg my seizures have stopped completely.Take Teg in morning and Kep in evening and haven't noticed any side-effects.

[jules1973]

Hello i have been from one tablet to another and the results were all the same i was intolerant to all the tablets and severly allergic to lamotrogine my epilepsy was drug resistant i went down the surgical route and had a temporol lobe lobectomy and have now been seizure free for 14 months still takin zonisamide and tegretol with no side effects when i was changing tablets my body reacted severly with me not being able to walk at all dont no why the neurologist wouldnt even come and have a look at me at the time i was taking epilim keppra clobozam and lomotrogine i reckon it had something to do with the fact i was taking so many and trying to come off two of them why dont u ask about surgery its been fantastic wasnt sore at all even the 36 staples on the side of my head only thing being it leaves you so weak and tired you wouldnt believe but i was back at work 5 months later and i am having the time of my life good luck

[Hidden]

I haven't been on Keppra but have heard reports from others that it can help... Everyone is different and all medications affect us and the body in separate ways, depending on the type of seizures one has. I have stayed on Carbamazapine and Phenytoin for over 20 years now which have controlled my seizures (tonic clonic) well. Wishing your daughter all the best with Keppra and hope it works for her!

[Hidden]

I tried many different medications before Lamotrigine finally worked for me. I take 200 mg twice per day. I wouldn't change.

[bookkeeper]

A few years ago I was given Kepra. It was a very successful drug at the time. However not for me it made me very tired.

[nicolagreves Volunteer]

I took tegretol (800mg twice daily) with keppra (750mg twice daily), which controlled my seizures after 12 years of changing & trying diff drugs. The neurologist recently asked to change the dosages to 400mg of tegretol twice a day, and 1500mg twice a day of keppra.

I was worried as I obviously didn't want any seizures, or any side effects! Thankfully I've had neither - so in my case, changing keppra to the primary drug has been fine. But like everyone has said - everyone is different, and has different experiences & reactions to medication.

Good luck with the change, I hope it goes well xx

[thebodyshop1]

My daughter was on lamotrigine for 2.5yrs which only seemed to reduce her shudders (that's what we call them - she has JME) they then put her on keppra and weaned her off the lamotrigine - my daughter is on the highest dose possible of keppra which I don't think has made much difference at all so very frustrating she has now started a new drug so fingers crossed this will work for her - good luck in the keppra working for your daughter x

[VeroniqueB in reply to thebodyshop1]

My daughter has JME too and is on the max dose of Lamotrigine. She is well controlled as long as she has enough sleep and doesn't drink too much!! I think the doctor is thinking more long term in terms of her having a family! What is the new drug your daughter is on now?

[thebodyshop1 in reply to VeroniqueB]

Topamax

[AmyBadd in reply to VeroniqueB]

I have JME, too (see my post above about being tried on L and K, but now using Epilim Chrono). I have to get 8 hours sleep every night, and I have to be very careful with my drinking. This was hard as a teenager as I wanted to keep up with my friends!

I was recently prescribed clobabzam as an add-on medication and I am very impressed with it so far. You take it when you feel you are at risk, for example if you have had a bad night's sleep or if you start having petit mals (in my case absense seizures or myoclonic jerks) to reduce the risk of a bigger seizure (tonic-clonic). I had never heard of it until I got a new neurologist recently. Might be worth asking about?

[kittycat671]

I'm sorry but my daughter went on keppra from lamotrigine when she was 15 OMG it was a horrible drug, the same as tegratol it made her violent, upset, she lost the few words she could speak all within 2 weeks, so we got her straight off it and back on lamotrigine and epilim chrono, she's now 18 xx

[6410621]

I used kapra for a year and i still had seizures so i changed to tegratal now im on tegretal for 3 years and im seizure free for 3 years

[VeroniqueB]

Thank you for all the replies, they were all really helpful!