Lamotrigine

[lightfamily]

My daughter was diagnosed with absent seizures when she was 9, however her diagnoses has recently changed to idiopathic generalized epilepsy. She is now 14, we have seen a paediatric neurologist and she has suggested increasing her lamotrigine by 25mg every 2 weeks for the next 10 weeks, this will take her up to 175mg twice daily. When my daughter is settled on lamotrigine it suits her very well and she has no side effects but each increase does take 2/3 weeks for her to get used to. Whilst getting used to the increased does she is very tired and emotional, we know she will not be settled for at least 12 weeks now & its so hard to see her like this. At the age of 14 she really want's to do things other teenagers do so it also feels wrong to spread out the doses. I would be grateful if anyone could advise

[Anonite]

Hi Lorraine,

I have no real advice to give only to say that we are going through the same at the moment. My son is 17 and was officially diagnosed with idiopathic generalised tonic clonic seizures in March. He had his last seizure the end of September and was put on Lamictal after Keppra did not work for him. Like your daughter he is a typical teenager wants to be out socialising and doing all the things his friends do. I constantly worry as the weekends approach even though I know deep I will have to let him live his life. My son takes his tablets twice a day if he is out I will text to make sure he has taken his dose he gives a thumbs up but again I know there will come a point where I’ll have to trust him. He seems to be ok for the first week after upping the dose of Lamictal but the second week he just can’t seem to function, he has been in bed all this week missed school and come Saturday we are upping the dose to the maintenance dose of 100mg twice a day so I know in 2 weeks we will most likely have a week like this week again. It is so hard to come to terms with the fact that this is his life now and although I know things could be a lot worse it is very hard to see your child go through this. Most people I talk to keep telling me that medication for epilepsy is good and they will find the right dose but I don’t think they realise what it means in terms of side effects and the fact that we are always on edge waiting for the next seizure to happen it is not just as simple as finding the right dose if only it was that easy. I really hope your daughter gets through this ok and everything works well for her. I try my best to read positive epilepsy stories but sometimes the doubt and fear creeps in. I was watching a mother today on instagram who’s son has epilepsy and he had just had a seizure and she said her heart hurts for him I think we can all relate to this as parents we just want our kids happy, healthy and safe. xxx

[Polly711]

i was om this evil med for over 10 yrs maybe more this drug was my worse nightmare im 51 yrs i would not recommend that med to no teenager they have a whole life ahead of them this med stole many yrs of my life with the horrible side effects

[Anonite in reply to Polly711]

Thanks Polly,

I’ve heard a lot of positive stories about Lamictal. I suppose everyone can be different. Keppra seems to work for you and many other people but for others not so much. The next option for my son and hopefully it won’t come to that is eplim which I have also heard works wonders for some but for others has side effects. If only epilepsy was one size fits all and one treatment worked for everyone it would make this process a lot easier. I would actually love to hear from anyone who Lamictal has been effective what dose/ what type of seizures etc. Thanks, Ruth.

[Pault1]

Polly711 should realise that just because one medication does not suit them does not mean that it doesn’t suit someone else if Lamictal causes minimal or no side effects and stops or limits the amount of seizures then that is positive. Increasing the dosage increases the risk of side effects so be aware of the full list of possible side effects as they can be subtle and if there are new side effects make sure they are taken seriously by the GP and neurologist. When she turns 18 she will go from paediatric to adult care the level of care will change more than likely for the worst. She will have to Make sure that she has regular blood tests and reviews.

By being over protective you will only cause resentment and make them rebel and outing their epilepsy to people she doesn’t want to know will cause embarrassed or possibly end up with her being bullied. The stigma of epilepsy is a cruel one. Communicate with her and talk about your concerns and her wishes and any risks. If she is going to have a seizure it is going to happen what ever you do but all you can really do is reduce exposure to triggers such as stress or if she is photosensitive flashing or strobing lights or exposure to alcohol or elicit drugs but on the other hand she will want to socialise and experience life such as going to pubs and nightclubs and she will be exposed to stress from exams and work etc.

there are self help such as exercise

epilepsysociety.org.uk/livi...

and mindfulness

epilepsy.com/complications-...

and knowing what triggers are

epilepsy.org.uk/info/triggers

[Cahoots]

Hi. I just wanted to give you some positive feedback about Lamotrigine. I've been taking it for about 17 years and have been seizure free for most of that time (occasional seizures when I've forgotten to take my meds!)

I'm sorry she feels so low each time they increase the dose. I think they have to increase it slowly to work out what the correct dose is for the individual taking it, so she may just have to wait it out. In my opinion, that's a small price to pay to be seizure free.

I don't have any major side effects. Poor short term memory seems to be the main one - I have to set reminders to take my meds! If I forget to take it for a whole day its very likely I will have a seizure (I don't think I would necessarily have had a seizure if I wasn't taking it, I think this is more of a withdrawal thing). I wish her all the best for a seizure free future!

[EpilepsyAction1 Partner Epilepsy Action]

Hi Lightfamily

It's great you are hearing from others. I just want to make you aware of our virtual parents support groups epilepsy.org.uk/support-for...

Also we have an online course for parents and the Young Adult section of our website.

epilepsy.org.uk/living/pare...

Regards

Diane

Epilepsy Action

Helpline team

[johnearthman1]

Hello Lorraine,

Being in an "old age" group (77), I may not be the best person to comment.

I had been suspected of having absence seizures, but a whole load of tests and ezaminations (including MRI scans) didn't show anything positive. However I had my first full blown seizure 10 years ago about 3 months following open-heart surgery. I was lucky enough to have a really good neurologist. I was put on Lamotrogine at first, and this helped, but I still had the occasional seizure. Keppra (500mg twice a day) was added to the Lamotrogine (200mg twice a day) - and this worked and I had my last seizure in June 2014. The worst aspects were that that the epilepsy onset resulted in autobiographical memory loss, losing about 35 years of memory - including not remembering our marriage day or the birth of our daughter, and her growing up. The second was not being able to drive (which I love) forabout 3 years.

As for side effect, yes they were pretty grim - sleeping issues, extreme irritability, short temperedness, feeling aggressive, anxiety and enuresis, all resulting in depression. I certainly felt as though I was a different person - a very strange feeling.

However, most of the side effects eventually disappeared, and I am now leading a pretty normal life. I do have short term memory and sleep issues. I now also take anti-depressants which certainly help with the anxiety and depression. However you do need to be very careful with anti-depressants because many of them do not interact well with anti-epileptics. A good talk with your GP is advised!

I think your daughters attitude is quite understandable. The only answer I can give is to be patient. Yes the side effects are pretty grim at first but they, they probably lessen, and if she is lucky (as I have been), they may well work and allow her life-style to improve. Perhaps she could relate it to having a broken leg or something similar which could restrict your way of life for a long time but there is no choice Hopefully, eventually your life can return to some sort of normality. You DO get used to it. I hope you all manage to see out this difficult time successfully.

[lightfamily]

Thank you for your reply xxx

[Michael_M]

Hello Lorraine, just replying to say don’t allow negative stories about Lamotrigine worry you too much.

I have a form of epilepsy called Transient Epilpitic Amnesia and take Lamotrigine. It is a good drug and most of the people who take it for TEA have total seizure control. It hasn’t totally stopped mine but greatly reduced the number I have.

Me and other users have varied side effects (my main one is struggling to get a full nights sleep) but for most people these settle down and the biggie is everyone is different in how they tolerate it. Some have absolutely no problems especially on lower doses.

Many people who do have side effects find they reduce or disappear over time and in any case are worth it if seizure control is achieved.

Wishing her every success, it’s early days for her treatment for this and there’s a good chance she will eventually be totally well again.

She is far from alone in dealing with this and there is so much to learn from the experience of others to help you tweak her treatment and ask the right questions to neurologists that get results.

[lightfamily]

Thank you Michael for your reply 😊