@isittll
Hello Laurie,
I was just wondering if you had discussed with your Epileptologist about the potential risks of
S.U.D.E.P. (Sudden Unexpected Death in Epilepsy) The likelihood of S.U.D.E.P. increases if nocturnal seizures, (which are Tonic-Clonic) are not fully controlled although we'll hope for the best, or are on multiple seizure medications including Lamotrigine and developed the condition at a young age and have had it for a long time. I'd ask your doctor if there is indeed a connection between SUDEP and nocturnal seizures and lamotrigine. Although SUDEP is rare it is obviously very serious and I hope you have a very serious conversation about it if you have’t already.
There is however good news also, frequent
tonic-clonic seizures is the most concerning risk factor and assume you have significantly reduced that particular risk factor.
Try to get plenty of good quality sleep, if you have been able to identify any of your triggers obviously you need to try to avoid those. And I would invest in an anti-suffocation pillow. You might also want to consider a bed alarm or some type of monitoring device in case a spouse or significant other doesn’t wake up during the seizure. It’s an additional safety precaution.
Sorry if I got a bit carried away, I think you may have had it longer than me.
Jake