My son (now 15) was diagnosed about a year ago, on Lamotrogine. We are constantly increasing his dosage, it makes him extremely tired and he is still having myoclonic absence seizures (about 20 per day) as well as a few clonic tonic ones.
Any advice, will this get better for him? Will he stop feeling tired and sleeping so much? Will the seizures ever stop?
Sorry, minimal experience of Lamotrigine, under quarter of a year since I started on it. But you say, continually increasing the dose ? Have found the side effects notably declining, having been on a consistent dose. Has he had time to adjust to each dose increase ?
Hi, sorry to hear what your going through with your son. Usually when the side effects outweigh the benefits, and if there is not a reduction in seizure activity as you increase the dose, it might be time to suggest a different medication with the doctor/consultant/epilepsy nurse whoever's treating his epilepsy. 20 seizures a day would be exhausting whichever type he is having. Sometimes they like to get to a maximum dose before considering trying something else but it needs to be a conversation you have with them. I have all 3 types of seizure too and eventually ended up on epilim and ethosuximide to stop mine, but it was trial and error getting there. They insist on trying one before adding in a second medication too. Epilepsy can take a while before finding the right medication that works but it is possible to either reduce or stop the seizures with the right treatment and care. I hope he gets there. Good luck, it's not an easy journey.
Thank you for your reply.
It is exhausting for him having that many seizures. Sorry I didn’t explain very well he has about 20 myoclonic absence seizures, so he remains standing but goes completely absent, arms jerk and almost ratchet so move up with each jerk if that makes sense. He is confused when the seizure finishes.
I think I made it sound like he has daily TC seizures, he does not - he has only had a few TC’s in the past 12 months. So we are lucky that his are far more manageable than what other people go through.
Thanks for your advice. We see the consultant in May and I guess by then he would have had 1.5 months since last dosage increase and dr will have a better idea of how it is working for him.
Thanks again
Hello,
Thanks for your reply, When he first started we were increasing it each month as you have to start slowly but as his seizures were getting worse the consultant said to increase each month until April. So he has not had time to adjust since December I guess because we have been increasing it each month since then.
Perhaps will see how things are in a month or so when the monthly increases have stopped
Things will get better. I was on lamotrogine for a bit, and it took a while but it worked. I did have to come off it, but that was due to a different reason your son won’t have to worry about! The tiredness is tough, especially at 15 when you’re tired already! There are other medications out there if they’re not working. Unfortunately with medication it’s a bit trial and error. I’ve had a diagnosis since I was 13/14, and I’m on my fourth medication now at age 22. It’s Levetiracetam, which is working ish, but a side effect is tiredness and fatigue, so if that gets suggested as a different medication, just bear that in mind. Everything will be okay though, it just takes a while to get things sorted.
Hello,
Thanks for your comment. So you were diagnosed and on medication as a teenager. Any tips? I got some from Reddit about waking up early to take medication and then going back to sleep and then getting up as usual for the day. Also, let him nap after the evening dose. Others have also said about extended release, which I didn’t know even existed but will discuss with consultant but if you have any tips on anything that helped you through being a teenager on medication and going through school, I would greatly appreciate it.
I was quite lucky and was on something different as a teenager, it was more the nausea that got me. But I would suggest telling his teachers to make sure they’re aware he’ll be more tired, and there’s not much you can do. Because it’s better that medication is taken at the same time every day, I think waking up and taking it and then going back to sleep is good. That’s what i do now. Obviously teenagers need more sleep than most, so if he can nap as and when he can that might help too. I always get told that if I get up earlier I’ll be less tired but I find the opposite! Just snatching sleep wherever he can will help a little. At least that’s what I’ve found. Of course it would be best if he didn’t sleep all day at weekends, for example, but sometimes I’ll just be so tired I can’t help it.
Mainly I think, as long as his teachers are aware, unfortunately there isn’t much else you can do about how tired he’ll be. It might be a case of switching medications, especially if he’s still having seizures. I also have absences so I do get it! It’s a whole process but I promise it’ll get a bit easier to handle as you all get used to it. If he’s struggling, I’d suggest contacting Epilepsy Action and their 1to1 befriending service, I’ve found it really helpful. I hope this helps!
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