Epilepsy medication

[ParkrunWithDog]

DS (14) has had 3 seizures, 2 assumed COVID provoked and the most recent unprovoked. The team is now recommending that he starts medication, probably leveteracetam.
Has anyone got a teen on this medication? I’m wondering about “real life” side effects rather than the theoretical ones that I’ve been reading about. We have a meeting with the consultant in the week to discuss. Thanks

Hi - just wondering how you got on at your meeting? Almost identical situation to my son, same age, 3 seizures but each decreasing in severity, is it covid? Tiredness could be trigger but not with last one or two. The consultant prescribed him sodium valproate yesterday……just wondering if you were also prescribed meds? Worry about effect on schoolwork etc, he is quite intelligent…..

Hi. He’s now had 5 seizures.

We know the underlying cause of his following an eeg and mri. My son was prescribed keppra (leveteracetam).
He has had it for about 10 days now, low but increasing dose with no side effects. And no more seizures.

When will your son start? Hope it goes ok. It’s very scary.

So pleased your meds are working and no side effects, very promising 🤞. Perhaps it’s easier to find stories of those with side effects rather than the possible majority that don’t have any at all.
We have had a normal eeg and still waiting for MRI so I’m a bit reticent for him to start on meds until we have more info and I feel I can personally justify it. Maybe this is a bit silly of me but I feel a bit lost on the info side and yes, it is scary!
I think a lot of cases have no known reason behind the seizures…. but at mo I just can’t bring myself to start him. It’s hard to know what to do although obviously the consultant seems to think meds are best and so this is what I should be doing.
Will call GP on Monday and talk it through……

DS has been on Keppra for about four years. The first two weeks were hard; he was very tired and very weepy (got sent home by the school after his maths teacher said he sobbed quietly all lesson) and felt quite unwell. But fine since then, apart from when the dosage has increased which has happened three or four times after breakthrough seizures. Each time he has a rerun of the side effects though milder than the first time. We are getting close to the maximum dose, so I'm not sure what will happen after that.
Good luck. It's worrying but the medicine made a big difference and it's a relief that for the most part I don't have to worry too much about random seizures.

My son was on keppra from aged 4-12. It made him look and feel very tired. Also he got very angry (it’s a known side effect). The unofficial cure to that is to take a full spectrum vitamin B supplement every day. Apparently Keppra flushes the B vitamins out of the body, hence the moodiness. It’s a good (clean) drug, minimal harm done to the body, and works well. My son had no seizures for years, came off it age 12 and has now been seizure free for 4 years.
Just going to add, get your son a seizure pillow, check he isn’t having nocturnal seizures and don’t let him have baths. I don’t want to frighten you but those are the main causes of death for people with epilepsy.
Good luck with it all. It’s very stressful for the whole family.

My son was on it for about 7 years, experienced tiredness at the beginning and in retrospect an ongoing ‘slowness’. He came off it this year and was immediately sparkier and more interested in the world.

My son has been on Keppra since age 5 and he is now 13. It has no side effects for him. It has stopped his convulsive seizures but he still has mild seizure events occasionally, which is usually an indication that he needs to up the dosage of the medication due to growth. It has been a god send for us as his seizures were quite severe. As an OP said be mindful that he is not having seizures at night. DS's we're all at night and we still use a monitor in his room when he's asleep. You can also get watches which will send an alarm to your phone if he has a seizure. It's a very scary time but most people have great success with Keppra so hopefully it will work out for you.

Hi my daughter 16 started Keppra about 3 years ago. (Already on another epilepsy med also) I feel it has slowed her down a bit. She's non verbal so it's difficult for her to express how she feels. It has controlled her seizure activity though !

Experience of Keppra - yes, the rage! We couldn’t cope with the rage. Nobody told us about vitamin B.

Ime of DD, many of the drugs cause some sedation. The consultant neurologist told us, that epilepsy is really an over-excitable brain. The drug’s function must be then, to calm it down. Unfortunately, we don’t seem to be able to select which part of the brain’s functioning is calmed down - it often seems to include some tiredness/sleepiness/lack of alertness, whatever you want to call it.

Sodium valproate can increase appetite and aggression, among other side effects (and iirc cognitive slowing).

Clobazam can cause sedation and aggression. Works very well on seizures though, but it is prescribed as an adjunct, not a first line drug.

Lamotrigine made DD veer between hyper or depressed.

Zonisamide slows down thinking, and can have a dreadful effect on language.

You pay your money and make your choice of the side effects! (Well, they will try the first line drugs for a couple of seizures; you won’t get a choice of the expensive branded versions of drugs like zonisamide, rufinamide, lacosamide, etc at this stage)

Has anybody told you the importance of a routine of three good meals a day; good sleep, exercise, activity (rather than boredom or too much screens) and reducing stress if possible? None of these are a non drug alternative way to control epilepsy - if a drug has been prescribed, it’s needed. However, hunger, tiredness, inactivity, stress, pain, etc can be triggers for seizures and you might as well try to reduce the number of provoked seizures - you need to keep a seizure diary, to try to identify triggers.

Thanks. Yes, our consultant was very clear lifestyle factors are very important. Good diet, good hydration, exercise, sleep, not too much screen time. Luckily for us, DS is at very good in that respect, but we’re now having a short evening dog walk after his medication and before bed.
Keppra is working well here but we’re watching it very closely. His school is very good and all teachers are watching for any side effects and will feed back to me. We have agreed that any “keppra rage” will be treated as a medical issue. I think I would be much more nervous if I was less confident in how his school supports him.

Wow, the level of misinformation in this thread is quite shocking. Pyridoxine ameliorates the behavioural side effects of levetiracetam, it isn’t a cure, it just improves things so that the person MAY not have to change medication. It depends on the dosage of levetiracetam required and the severity of the behavioural side effects. pubmed.ncbi.nlm.nih.gov/33823377/
@TheSummerPalace None of these are the branded names for the drugs zonisamide the brand here is Zonegran, rufinamide is Inovelon in the EU and Banzel in the US, lacosamide is Vimpat, the initial names are all generic names of drugs. Whether branded drugs are better than generic depends on the individual. The main thing is that the drugs aren’t switched about from generic to brand or different generic makes. You need your prescription to state what drug you are on explicitly. Regards first line drugs, why do you think they are called first line drugs? Because a drug cost a lot to develop and an old drug is now cheap as chips, you think it’s better? pn.bmj.com/content/1/2/70
Everyone who said someone has no side effects, no such thing. The perfect drug hasn’t been invented. It is simply side effects that are minimal and barely noticeable.
Lastly, why ask someone else about drug side effects when you have no clue what their diagnosis is, what other meds they are on, other commorbidities, age, dosage, etc. Better speak to your epilepsy specialist.

None of these are the branded names for the drugs zonisamide the brand here is Zonegran, rufinamide is Inovelon in the EU and Banzel in the US, lacosamide is Vimpat, the initial names are all generic names of drugs. Whether branded drugs are better than generic depends on the individual. The main thing is that the drugs aren’t switched about from generic to brand or different generic makes. You need your prescription to state what drug you are on explicitly.

Namechanged. I am well aware of the brand names of the drugs, and how to get them. We’ve seen numerous consultants and for some reason, they usually use the generic name, whenever they want to write down what she’s on. Afaik, they recommend with epilepsy as severe as her’s, that they use the brand drugs - she’s been at two specialist epilepsy schools and a FE college, and they used the brand drugs for the students, unless a student was already established on a generic.

As for first line drugs, DD is drug resistant, but sodium valproate and clobazam are by far the best AEDs for her. She has also been on various combinations of them and carbamazepine, lamotrigine, clobazam, levetiracetam, ethosuximide, zonisamide, lacosamide, rufinamide and a VNS. Rufinamide does reduce drop attacks, but I don’t think the rest or the VNS made any difference. Most of the drugs have caused her an increase of one type of seizure - GOSH told us, she is sensitive to the drugs. One professor told us, it was due to toxicity.

She tends to suffer the psychiatric adverse effects of the drugs. I now suspect it’s because she suffers a rare genetic disease, which has numerous neuro-psychiatric symptoms and epilepsy occasionally; but apparently it’s so rare, nobody knows the full range of its presentations and she is the first symptomatic person, they have met. (We didn’t know this, when I made my first post). They were going to try cannabidiol next, but can’t now because of this genetic disease.

DD has been under three professors of neurology, and none of them have ever talked to us about the side effects of drugs. When I have asked, they have said clinical trials are done on people, on one drug. No trial is done on a combination of two drugs, never mind three or four - so they tell us, they don’t know what the side effects will be; but they have try to make DD’s life better.

I have learnt far more about the realities of living with a DC with epilepsy from other parents, than in the limited time with consultants, who focus on discussions about seizures and prescriptions of drugs - admittedly, they have spent more time talking about cannabidiol than all the rest put together, but most parents are not in a position to ask for that.

Bumping this thread just incase someone is prescribed Wellbutrin alongside seizure medication they should have this information.

"The Food and Drug Administration (FDA) says people who have - or previously had - epilepsy should not take it."

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