Lamotrogine

[johndoe49]

I had been on Phenytoin for 30 years but was changed to Lamotrogine in August 22, due to sudden efficacy concerns with the Phenytoin. This co incided with an over active thyroid. Has anyone had issues when trying to get back to sleep in the night time? I wake up for a wee and when i try to nod off afterwards i have all kinds of sensations, jolting, hallucinations with eyes closed, buzzing noises. This is the only time it happens? Any ideas?

[Adlon57]

I would get "night terrors" from Lamotrogine [Lamictal] but just on them alone, like electric shocks in the process of when going from the conscious to the sub-conscious I would get these 'shocks' heart rate off the scale, take about half an hour for the body to recover. I was okay if I was on with another epileptic drug. I was on them with Epilim and later with Fycompa, but always in the long process of changing medication, and solely on Lamotrogine [Lamictal]! I found that Lamotrogine [Lamictal] was bad for my teeth, being on them with the other medications for eight years ;verified by my Dentist!

[johndoe49 in reply to Adlon57]

Hi Adlon

Thank you for the reply,

I have woken up a few times in a panic, sweating, heart going 10 to the dozen but just thought they were nightmares! Its weird as these "episodes" don't happen when i initially fall asleep, only after i have woken in the night, or i nod off on sofa, and they never happened when i was on the Phenytoin. I have asked to go back on to Phenytoin but specialist doesn't think its a good idea🤷‍♂️

[Adlon57 in reply to johndoe49]

I have Juvenile Myoclonic Epilepsy, since the age of 14, it always happened as I reached the 'process' of sleep, the brain become subconscious, then bang, like an electric shock, heart rate WOW! sometimes being thrown out of bed with the shock! Good Luck!👍

[Ferifree]

Hi,My son is 16. He diagnosed with epilepsy 3 years ago and had a rough life and many medications which didn't help. Now, he takes Lamotrogine for over 1 year. Doctor added CBD and THC. He feels much better.

Sometimes he complains about hallucination too but I didn't know it is related to medication or his epilepsy.

For sleeping he takes melatonin.

Wishing you more health,

Fariba

[Adlon57 in reply to Ferifree]

I was with Lamotrogine [Lamictal] from 2011- 2018 I was with Epilim 2011-2016 and Fycompa 2016-2018 it was in the process of setting these 'double' acts in 2011 and 2018 when just on the Lamotrogine [Lamictal] that I would have my "night terror" incidents!

I do not remember any hallucination incidents?

Always been a rotten sleeper all my life😏

all the best Adlon

[EpilepsyAction1 Partner Epilepsy Action]

Hi johndoe49

I'm glad to see that others have shared their experiences here.

Although we’re not medically trained and can’t say for definite what it is you’re experiencing, you might like to have a look at the side effects of Lamotrigine as listed by the BNF (British National Formulary). bnf.nice.org.uk/drugs/lamot...

These include sleep disorders as a common side effect and movement and vision disorders as uncommon side effects.

It may be helpful for you to raise these symptoms with your specialist again.

If you wish to talk to our helpline team please do phone our freephone helpline 0808 800 5050.

Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.

Regards

Julie

Helpline Team

[johndoe49 in reply to EpilepsyAction1]

Hi Julie

Thanks for the reply

I had been originally taking Phenytoin for 30 years but it started causing complications for some reason. I have been reducing the Phenytoin gradually whilst being on a full dose of Lamotrigine. I have now fully reduced the Phenytoin and the episodes have reduced significantly so im wondering if the Phenytoin was the cause all along.