Medication for Epilepsy

[willowthecat]

ds is 17 (Autism and Learning Difficulties) has been taking 400 mg of Lamactil for Epilepsy but he is still having seizures. It has been suggested that a second medication is added - either Valporate or Levetiracetam (Keppra). Does anyone have experience of either of these medications ? What are the side effects ?

Keppra is a relatively newish medication (about 20 years I think) for epilepsy but is very good at treating at it. The problem your DS will have is that he will feel doped up and completely out of it for a long time until his body gets used to it. Depending on his build he may be able to adjust to it faster than I did as it took me a very long time before I stopped feeling doped up and was able to have a normal-ish life. In my case it eased the epilepsy seizures a lot but did not stop them from occurring completely. A lot of epilepsy medications make the person tired and Keppra is the strongest I have experienced.
Valproate is a very old medication that I was on many years ago and didn’t work for me but everybody is different and a neurologist will know best. You can also get advice from the British Epilepsy Association as asking people online is not a good idea at all with these types of meds. Good luck.

Thanks - I asked the LD CAHMS nurse for advice and she seemed to be suggesting that Sodium Valporate might be better for him as she has other patients with his profile who are doing well on it. I will also try to contact Epilepsy Scotland for advice

Epilepsy Scotland should be able to help you better and give you unbiased advice without considering cost implications etc as Keppra costs the NHS more than Valproate.

Please be very dubious about accepting advice from people online. Your son should be getting seen by a Consultant neurologist doctor as they know a lot more than nurses. If your son is not being seen by a Consultant neurologist then ask for him to be seen by one as only a Consultant neurologist would be able to properly diagnose and treat him. Based on personal experience a learning disability nurse should not be guiding you towards one medication or another as they have no specialist training in neurology only general learning disability which is wide and varied. Your son needs treated by a neurologist, preferably Consultant if his epilepsy is difficult to get under control, and the right medication all depends on the diagnosis.

Yes he is being seen by a Consultant Neurologist but there is isn't a clear view on which medication is best bearing in mind his autism and learning difficulties. If he was cognitively able he would be more involved in thinking about the possible side effects of each medication but as he is not verbal and not able to understand, we just have to do the best we can . I think the LD nurse was thinking more that the Keppra could affect his mood more but she was not making the decision for me. There does not seem to be clear winner as to which would control the seizures better . I deal mainly with the Neurology nurses at the hospital but they refer back to the Consultant for medication advice,

DS also has autism and learning difficulties and takes sodium valporate. Main side effects for him have been fatigue and an increase in appetite. Both have been manageable. We have recently had to increase the dose he was taking and it seems to be doing its job.

@willowthecat the reality is that for many people with epilepsy a choice has to be made between changing and increasing their medication to control the epilepsy and suffer the side effects
or trying a more well known older medication where professionals know more about.

Whatever decision you make it can be undone if the new medication is not successful so don’t stress out too much about it. An EEG or MRI may be able to help identify what part of the brain is affected but to be honest it’s all a game of trial and error as nobody really knows what is right for every person or if it’s going to work.

Yes - thanks so much for your advice, Epilepsy is new to me after so many years with Autism and Learning Difficulties - the seizures really only started this year and it has been a steep learning curve. Our neurologist is very good and supportive and she has always emphasised to us the unknowns of Epilepsy and its treatments. Yes an MRI would be good and I am keen to have that done. We took him for an EEG a few months ago but he refused to have the leads attached and so really a general anesthetic will be needed for any investigations.

Keppra stopped my son’s seizures and was a great drug BUT it made him very moody and depressed. Make sure you give him a full strength vitamin B (with all the different Bs in it) before he starts as it washes I think it’s B6 out of the body so causes mood swings.

The impression I get is that while a particular drug might work well for a certain type of epilepsy (say ethosuximide for absences or rufinamide for drop attacks), at least as far as drug resistant epilepsy with many seizure types, goes, evenwith consultant neurologists, its just a case of "What shall we try next? Shall we try zonisamide or rufinamide?" (And that is usually in a combination of three drugs) Then after they have been tried and we are talking about trying an 8th drug, its "What about perampanel?"

I agree that sodium valproate is one of the older drugs, which tends to be broad spectrum - ie treats different kinds of seizures, not just one type. In our experience, it caused cognitive slowing, but then many of them do, because as one consultant told us "Epilepsy is just an over-excitable brain!". I assume the function of drugs is to slow that brain down; but unfortunately, we can't be selective about what they slow down! It also caused an increase in appetite, although it does not have a magical effect of increasing calories in food - so long as you keep them on the same diet as before, they won't magically gain weight. It is also supposed possibly to increase behaviour problems - we didn't notice that particularly, but then we have found any of them can do that; and there can be aggression before or after seizures anyway.

Lamotrigine for instance either made DD hyper or depressed!

Keppra is probably more expensive, as its a newer drug. I have heard it can transform some people's lives by controlling seizures. It didn't do that for DD; and she did suffer Keppra rage! We were living on eggshells - for instance, if we asked her a simple question like what would she like for dinner, she would jump down our throats in an immediate rage. I asked for her to be taken off it, as it was no better for seizure control than sodium valproate; but much harder to live with the rage!

Thanks everyone ! I really appreciate all your thoughts and experiences. ds1 has been on Epilim and half his usual dose of Lamotrogine for a week now so it's obviously early days to know if it will stop the seizures as he generally has one every 2 -3 weeks or so . I was worried about Keppra affecting behaviour so I opted for the Valporate. As everyone has said, there is no guarantee with any Epilepsy medication . His appetite has not been that great recently so if Epilim increases it , it will not be a problem and he leads a very active lifestyle so he burns off a lot of calories - no Gym involved just being Autistic !

Keppra works really well for many people so I'd never say not to try it, but for me it caused significant mental health problems and I've heard some others say the same. As I say though, for many people it's an amazing drug that controls their seizures very well. Just thought I'd let you know to watch for that if you decide to try it. As someone else has said, it's a case of trial and error though. I hope the valproate is helping. Bloody epilepsy.

Thanks ! He has been on Epilim (Valporate) for about 2 months now and has only had one seizure so far which is less than before. As you say, the results are so specific to the individual that it's hard to recommend anything but Keppra does seem to get linked to behavourial problems more often and when he is severely autistic to start with that's not good !