my 14 yr old has been diagnosed with epilepsy. Started on Lamotrigine 25 my in September, and suggested to go up gradually. She developed blurre vision on and off, blocked nose and runny nose , poor sleep since starting and I am reluctant to up the dose. She remains on same dose. Blurred vision has slightly improved but continues to have blocked nose and poor sleep. Any suggestions?
She had her 1 st tonic clonic seizure in 2020 and further 3 lost in 2 weeks after 2 yrs. that’s when an eeg done showed frontal lobe activity and started on Lamotrigine.
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Upsydaisy2005
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My son had his first seizure last November, age 14 and went onto have 3 more. Was diagnosed and put on Lamotrigine in Feb this year. He started on 25 mg and its been increased every few months. He is currently on 75mg morning and night. He hasnt had any seizures since taking the meds. The only side effect really was quite bad blinking of his eyes which lasted for about a week or so. But nothing else.
We are in the same boat. My daughter is 14 yrs old too, developed 3 lots ( 2 episodes 6hrs apart, another after a week, all nocturnal). I have similar struggles. Now thinking of getting a bed sensor. Feel like a walking atom bomb.. worried about SUDEP. She always had tonic clonic.
We are also struggling to uptitrate her Lamotrigine. She is on 25 mg once daily since September. She had blurred vision in the initial days( school absences), now itch at night, requiring piriton most of the days. Also 3-4 hrs post Lamotrigine, mood swings, struggles to sleep.. the list is long! She is a lovely girl.. finding it extremely difficult to watch her struggles. Yesterday she said she is swing a shadow in the dark, it has a face, she isn’t scared but reports it’s annoying. She has started to talk to the figures ( don’t look at me, let me sleep).
Like Cerida, my son had his first seizure in early April 2021 and the 2nd in May 2021 so started on Lamotrigine, initially on 25mgs, gradually increasing to 75 mgs morning and night.
He had a slight rash on both feet to begin with which cleared, otherwise appears to have been okay. No further siezures since the 2nd one in May 21. Perhaps a call to the epilepsy nurse for re-assurance may help.
Hi there.. just wondering how old your son was having his first? If hes around the same age, how is he coping with things? My son is nearly 15 now and does t really like to talk about epileosy. I still worry 24/7 about him x
Hi, my son was 16 when he had an evening seizure, 2nd one a month later upon waking.
His initial reaction to his diagnosis of epilepsy was the frustration of not being able to swim Independently. He also appeared to rebel slightly and do all the things he was advised to be cautious with, e.g. riding his bike, climbing etc this all calmed down and as time has gone on things have settled and I don’t feel sick when opening his bedroom door in the mornings.
Like your son, he rarely talks about it so I gave him the literature to read which was given to us from the hospital/consultant.
We bought him a smart watch as advised by our GP which helped me feel less anxious when he goes out. I also googled “positive epilepsy stories” in the early days to stay positive which helped immensely.
Almost 18 months on and I still have to remind him to take his tablets, but guess that’s teenagers for you, he is doing A levels, works part time and yesterday his provisional driving license arrived! ( We have never made a big deal re: driving as know things could all change. )
It is so hard letting him carry on as normal. Im trying....i still cant get my head round it all and why this had to happen. All i seem to read is negative experiences which doesnt help. The consultant memtioned slowly taking him off meds after 2 years if seizure free. This is frightening.Also the trauma of the first seizure is horrific and its coming up to the anniversary of that.
I hope i start feeling more positive about things. Its just so hard.
Thankyou for your reply. Wishing you all the best too xx
my 14 yr old daughter has been diagnosed with the same and on Lamotrigine. We have bad days. And good days. She gets blurred vision, sleeping problems and runny nose / blocked .. all Lamictal side effects. Now in year 9.. memory can be a problem too.
Can you share some positive story links pls?
Also what statergies you used for learning?
Also, is he using Apple Watch? Can you share your experience?
If it helps you any bit my son is in the process of titration with lamictal and today was the first day at 75mg X2 .I found the side effects similar to your daughters happened at the lower doses and at the beginning of the titration process. My son has done pretty well and I noticed at each dose increase he may have complained of being tired for 1 or 2 days usually the second week after dose increase but seems to be doing well on it now. My son is still on Keppra at the highest dose so the epilepsy nurse said that this is most likely causing the tiredness. To be honest for me seizure control is the main aim and side effects we will have to deal with if and when they happen. Listening to the positive stories here with regards Lamictal I wish it was the first medication that he was given.
Wishing you luck this epilepsy journey is tough and having to watch our kids go through it is by far the hardest thing I have had to deal with as a parent xx
Re learning strategies, my son just carried on as normal at school. We didn’t put any pressure on, he had enough with home learning ( Covid times) GCSE’s - stress can trigger a seizure .
The smart watch was in case he should have a seizure and not have his phone to hand, you can make a call from the watch. I can also message him to remind him of his meds and I know he will get the message so no excuses.
I do remember worrying all the time, not as much now although it’s always in the back of your mind. Hoping things settle for you too.
Hia there, I suffer from a type of temporal lobe seizure and take Lamotrigine. So far the only noticeable side effects are it making me harder to get a good, uninterrupted night’s sleep.
Lamotrigine is a powerful but often very effective drug. I know it sometimes takes a good while for some people to get used to any drug but usually side effects do subside partly at least.
It’s always a judgement call whether the negative of side effects is worth tolerating for the huge positive of seizure control or reduction. Everyone has to weigh that up but if the side effects are too much with one drug there are others to try in most cases which you could discuss with your neurologist.
Good luck and keep going, things will improve as medicines are tweaked and perhaps combined with another drug if necessary.
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