Hi. My 17yr old son was only recently recently diagnosed after having 2 tonic clonic seizures and has been put on Lamotrigine. We were just starting to get our confidence back a little and he has started a weekend part-time job, however he had another seizure at work over the weekend and badly hit his head. Each time he has ended up in A&E with head injuries and is also so sick with it. Don't quite know where to turn at the moment. As his mum, I'm expected to have all the answers but I'm struggling with the overwhelming nature of it all. How long does the medication take to kick in? He's got to get on with his life but it's so hard when this keeps happening- the shock each time is really taking its toll on our whole family. I feel helpless at the moment especially as he's taking it all in his stride. Am I selfish for feeling like this? please help-x
So many questions. : Hi. My 17yr old... - Epilepsy Research...
So many questions.
Unfortunately you may need to be patient. Epilepsy is very complex and not every medication works for everyone. Lamotrigine did nothing for me. It wasn't until the third medication I was put on until my seizures became controlled. Also you may have to adjust the dosage, if he is having less frequent seizures but still having them.
Hop this helps, I'm sorry it may be disappointing but these things can take years, if they work at all.
Amy
Thanks for getting back to me Amy. Yes patience seems to be the real virtue - I know you're right. I truly was so ignorant to how complex Epilepsy really is- It's so hard watching him get knocked back down every time. I'm sure we'll get there eventually.
You might find it helpful if he kept an epilepsy journal describing the situations in which he has a seizure. It took us several years to figure out what my son's triggers are so that he can avoid them if possible. In his case lack of sleep and stress (trying to do too much in a day, etc.) seem to be the main culprits. Also we have tried three different neurologists here in our medium-sized city, only one of whom was willing to keep working on adjusting the medications with the aim of eliminating seizures. The other two seemed to think that a seizure now and then was no big deal and only maintained the status quo on the medication. He is now on a combination of four different drugs so we see that the combinations are almost infinite when the dosages of each are adjusted slightly up or down! Best wishes for a very successful outcome.
Yes, if you don't know what triggers his seizures, this is key. Mine are also tiredness and stress (physical or mental) which are common. Much more common than things like strobe lights, which more people are aware of.
Of course there are many options with combinations of drugs but epilepsy medications are really powerful things and have many possible side effects. Therefore the more you take the more chances you have of encountering these. You have to decide whether a risk of occasional seizures is better or worse than those side effects. So when I was pregnant I was taking half the amount of sodium valproate I take now, because it can cause fetal abnormalities. This is a rare but serious side effect. Like I said though, I have tried other medications that did nothing to help. For me that balance was going on the low dose and having two seizures during (and one just after) pregnancy.
Thank you- I think you're right, although his 3 seizures have happened at totally different times of the day and in different situations, there has been elements of anxiety and tiredness during each of those times. Gosh it's a minefield isn't it!! I'm now keeping a journal of his seizures, and things he can/can't remember about moments before and after to take to our consultant.
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I'm on lamotrigne and all I would say is keep at it. I've been on it for 15 years and had a blip august 2015 and it took 9 months to get the right dosage which was hard but I'm there now. In my life I have only had two tonic clinic the rest of mine are absences and jerking but until august 15 I had been seizure free for 7 years
As a mum you need to stay strong for your son. My parents were and still are a nightmare so I don't tell them anything now. My mother was more upset than me which was hopeless!
Good luck and remember your not alone
I am on lamotragine, I changed from epilim but think it took a couple of months to settle down but kept at it I have had a baby, passed my driving test, got a job. Had a blip on my last chemo where I had jerks. I found my triggers in the past strobe lights, not eating, stress, tiredness and if I was unwell. I also found hormonal changes set it off too. All the best for all of you
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