Medication - how does it make you feel?

[Thunderbirds21]

Hello All

Hope you’re well.

My 22 year old son with ASD is on 200 mg of Lamotrigine taken in the morning. The seizures are not yet under control.

About 30-60 minutes after taking the meds he becomes slow and lethargic. This can sometimes mean a seizure is approaching but at other times it will pass after a further hour or so when he becomes more himself and improves further over the course of the day.

He is unable to tell us how the meds make him feel so we have to watch for visual clues.

Do other folk have similar experiences?

Any suggestions on how to remedy this?

Will splitting the dose help?

Thanks very much for any advice you can offer.

[Tgraham2]

My daughter is 20 years of age and on the same dose of lamictal as your son. She is very fatigued and sleeps late in the morning before taking her meds and for an hour afterwards. She seems to increase in energy throughout the day. At night after her second dose she finds it hard to get to sleep. Her seizures are not controlled.

We are trying CBD/THC oil now but too early to tell as an adjunct medication.

[Comedy in reply to Tgraham2]

I have a 26 year old son and Lamicral didn’t work and many other meds did not work either. He is on Depokote and after 13 years of violent seizures and 10 medications and testing for brain surgery, we have a Med that does work. He had 2 very mild seizures in Jan and feb. He does need more sleep and have accepted it as just part of a seizure free life. We have just worked it into his life which was easier with the pandemic but as he is moving back into the world we don’t start any programs or jobs until 10. I also lightened his programs. (Also autistic). He is happier and more vibrant but is similar with a slow start to the day and more energetic by noon on.

[Thunderbirds21 in reply to Comedy]

Thanks very much for getting back to us. Sounds like you have all been through the mill over the years, but so very happy for you and your son that he is now stable and found a med that works for him. Do you recall if he was slower in the morning PRIOR to starting the meds ... or did this become apparent after he started taking the meds? Thanks again.

[Comedy in reply to Thunderbirds21]

My son started having seizures at age 12 and prior to that he was an early riser and had a ton of energy. Seizure meds definable slowed him down but he was entering teen age years too so it was hard to say at that point. Over the years he has been on more and more meds and variations and had seizures every couple of days so he was always exhausted and worn out. He was dragging through day to day. So now, with a Med that helps seizures, my son is just tired in the morning. By lunch he is fine

[Thunderbirds21 in reply to Comedy]

Thanks again for replying. Continued success and I will keep in touch if that’s okay?

[Comedy in reply to Thunderbirds21]

Absolutely. 😀

[Thunderbirds21]

Thanks very much for getting back to us. I will keep in touch if that’s okay? Hope things improve.

[Tgraham2 in reply to Thunderbirds21]

Yes 👍 please stay in touch

[Thunderbirds21 in reply to Tgraham2]

Will do ... thank you.

[EpilepsyAction1 Partner Epilepsy Action]

Hi

Thank you for your message.

With many epilepsy medicines, including lamotrigine, people can experience drowsiness as a side-effect. For most people these side-effects are short term and lessen over time as the body gets used to the medicine. But for some people these side-effects can last for as long as they are taking the medicine. I’m not sure how long your son has been taking this dose of lamotrigine. But if your son’s drowsiness doesn’t improve it would be a good idea to discuss this with his epilepsy specialist, epilepsy nurse (if he has one) or his GP.

I'm pleased to see you've heard from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups epilepsy.org.uk/virtual-groups We have our forum4e online community forum.epilepsy.org.uk/, and we are on facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

Finally, please feel free to contact our helpline team. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Tuesday 8.30am until 700pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

[Thunderbirds21 in reply to EpilepsyAction1]

Hi Jess

Thank you for replying.

We started the meds in April this year and have gradually increased to 200 mg. The neurologist has suggested we increase by a further 50 mg to 250 mg, but we haven't done this as yet.

Our son's slowness in the mornings actually started PRIOR to us starting on the meds. His pulse rate could fall to 45, with cold hands and feet, coupled with slowness and lethargy that could then manifest into a seizure. After starting taking the meds, this has continued to some degree, with some mornings being better (or worse) than others.

We have made the neurologist, epilepsy nurse and the GP aware of the above.

Thank you for the links. We will certainly take a look and do subscribe to Epilepsy Action.

Thanks again.