My son is 13 and was diagnosed with epilepsy in 2019. Between 2019 and 2020 he had 20 seizures. All of which occurred as he fell asleep at bedtime. His diagnosis is focal epilepsy.
He was seizure free owing to Lamotrigine from June 2020 until last week. We were advised to wean him off Lamotrigine back in May and its backfired.
I would really like to connect with people who have experienced this type of epilepsy. The nature of these seizures happening upon falling sleep is terrifying. My son’s last tonic clonic was very violent and painful. Though most recently he had one which seemed to be more partial though prolonged. He is always conscious during them, even in tonic clonic.
Has anyone got similar experience?
I’ve experienced similar! I’m 17 and was diagnosed at 13 with epilepsy…Almost all of my seizures (tonic-clonic) begin just as I begin to/have fallen asleep. I’ve been on so many medications and none seem to work with me .
I am so sorry nothing has worked yet for you. Are you under the care of a good Hospital or Epilepsy team?
It’s good you asked this question, i’ve been having seizures for 21 years now. I would ask your son how he feels before he has a seizure, this will give you a good indication of what will happen next.
With the seizures themselves there’s not much we can do to stop them but the key thing is to make sure he’s safe from banging his head. A good thing to do is buy a bed with rails on the side or a bed closer to the ground.
We just have to learn about the seizures more, for example when your child has them and where you are when they occur. What he eats before the seizures and what he has done that day for example sports. Keep note of these things when he had a seizure.
I’m 25 and have tonic clonic seizures monthly. I just lay on my bed before the seizure and let it happen. I have a focal fit prior to the tonic clonic one.
With medication eventually the neurologist will find the right one for your child. I useto have upto 15 per month, now it’s just the one. So keep trying with the medications. Also naturally the seizures decrease and even stop in adult hood for some and that’s a positive.
I’m so sorry to hear about what you’re going through! It sounds so scary for both you and your son!
Have you looked into epilepsy alarms and monitors for your son? A lot of parents have said these have been really useful, especially for nighttime seizures, because it can reduce some anxiety knowing that they will be alerted if their child has a seizure. There is a list of suggested equipment here:
Alarms and monitors - Epilepsy Action
You may be eligible for some funding for this equipment too:
Get Financial Support for Your Epilepsy Device | EAUK (epilepsyalarms.co.uk)
There are also virtual and face-to-face support groups you might be interested in attending, if you wanted to connect with other parents in the same or similar situations:
Talk and support - virtual groups - Epilepsy Action
Support - Epilepsy Action
I hope this helps
sorry to hear about this just joined this site after a long time i took 1 tonic seizures shortly before my 18th birthday what a time passed my test in the august took the tonic seizure in the september anyway now that is the distant past
after that i was seizure free till i hit my early/mid 20s and i started having Complex partial seizures battled through all my 20s trying to get them under control hoping they would stop so i could drive again i got new medication i was fine for 3 months then all of a sudden it happend again. now im 32 i take 2250mg levetiracetam morning then 2250mg at night and 200mg of lamotrigine they had me on that still wasn’t working so they dont like to but they added in a 3rd medication 50mg of zonisamide day nd night never done the job so they up it to 100mg day and night them since then i have been over a year seizure free…
so i thought i was always tired in work i recently got kittens so i had pets cams to watch them i decided to set one up in my room to see if i get a good nights sleep not expecting anything and all of a sudden a see frequent arm jerk movement every night nothing serious not a full blowing seizure but its clearly not dreaming
My name is Billy. I’m 14.I was diagnosed with Focal Epilepsy when I was 13 I also have seizures when I try to fall asleep. It worries me a lot because I hate how it makes me feel. It’s good to know other people who have the same thing are our there. Makes me feel less alone.