starting lamotrogine and side evfects

[Lochsandary]

Hello folk, my husband ( age 69) was recently diagnosed with epilepsy and prescribed lamotrogine. Waiting for MRI and first outpatient appointment. We’re now 4 weeks in to an 8 week programme of increasing dosage. Our question is - how bad should the side effects be and when can we expect to see them respond to treatment? Side effects are varied but include severe headaches/ frontal lobe pressure, alternating hot/ cold temperatures, panic attacks, heart racing, internal “ judderings” and so on! Just looking for some reassurance that this is normal and will ease or should we see GP

Thanks in advance

[what24]

Hi, I changed over to Lamotrigine 10 weeks ago. An individuals experience of side effects will differ, my primary side effect being notable memory loss - many of the side effects you mention are "brain" related, so I would presume are merely differing variants of the effects of the brain changing drug. I wouldn't be too concerned, have experienced systematic reduction in the intensity of side effects over 10 weeks, the rate of decline itself declining over time, as the side effects are becoming less perceptible. Am not clear whether I've actually suffered higher body temperatures, as haven't taken temperatures, but much higher levels of sweating have been perceptible, declining over a 10 week period. Still led me to feeling it necessary to sit next to the bus driver, next to the doors last week, removing the coat, shirt & boots, on a 20 mile journey

[Lochsandary in reply to what24]

Thank you for your reply. It’s good to know we’re not alone and your kind words have helped reassure us

[Anonite]

Hi, my son experienced flu like symptoms and was generally unwell with every dose increase. Once he was at his stable dose these side effects subsided and he has been good for over a year now. Hope your husband feels better soon.

[Lochsandary in reply to Anonite]

sorry to hear about your son but glad to hear he’s stabilised now. Thanks for your kind words.

[rankin1st]

Hi sorry to hear of your hubbies diagnosis, hopefully you will get support from here and other places to navigate this change in both your lives. My hubby took it for years his difficulties with sleeping was the worst side effect. Eventually took him off it due to ataxia balance speech difficulties that were bad. Good Idea to wait a while for the drugs to settle as the body takes a while to get used to them, but you know your hubby and if it doesn't settle in a few weeks then maybe ask for alternative. There are lots of meds out there and some of the newer ones can be better with less side effects. Hubby now takes a combination briviact epilim and cenobamate being the one that seems to work best for him but taken long time to find a regime that suits him, everyone is different. Ask to see nurse specialist as they are usually supportive and more accessible than neurologists and they can help you find the right treatment.

[Lochsandary in reply to rankin1st]

thank you for taking the time to reply and for your helpful suggestions eg nurse specialist. As you say, this diagnosis affects us both but hopefully we’ll make progress