Anyone else having focals all the time / waking them up ? Any advice ?

Question

I'm having what is probably focals in my sleep all the time. The "rising sensation roller coaster and about to faint" type, to make it short, if some of you see what I mean (many time described, still so difficult to describe). And they wake me up* (maybe I also have some that don't because they are "smaller", who knows), as well as other stuff that can come with it during those nights too (like involuntary whole body movements in my sleep or myoclonic jerks (can be big ones) when falling asleep but most of the time just muscles suddenly clenching in my sleep).

Anyone has the same problem and found something that helped with sleeping aside from AEDs ?

.

*It can go from 2-3 during the night but having a really hard time falling asleep again (sleep has always been a problem) to clusters of one after the other all night long for several nights (sometimes I can sleep for 5-20 minutes between them, sometimes I can't sleep at all because it happens at the second I fall asleep so it’s falling asleep-seizure-falling asleep-seizure-etc.).

---

Context :

  • Seeing an epileptologist for a bit less than a year now, no official diagnosis yet, pathological EEGs each time
  • Tried levetiracetam and had to stop because of side effects,
  • tried lamotrigine, stopped after a few months (which is now) because of the side effects on my mood the last time i had to increase the dosage. But now thinking it might have been because of the hormonal treatment (well known for that) that I started at the same time (lamotrigine turned me into a zombie though), or maybe both as I seem to be ridiculously sensible to all CNS-affecting meds.
  • Was able to sleep (strange dreams, moving in my dreams, clenching muscles, RLS, etc. but sleep) through the night for the time on lamotrigine at quite low dosage except for bad cluster nights. Didn’t take it long enough on a higher dosage to see if it could stop clusters for good. Also not sure if I slept better because exhausted from the meds and only half waking up and back to sleep or because helping with the root cause of what wakes me up.
  • Now have only some benzo to try as emergency meds for clusters (haven't tried this one yet ; tried lorazepam a year ago - previous GP insisting on a couple of wrong diagnoses- which did nothing). So, I'm going to try this when I have clusters
  • but don't know what to do for the rest of the time when it's not that bad but still wakes me up, because it’s so hard to fall asleep again.
  • Even when I don’t know what wakes me up, I still am awake every night and when finally falling asleep then it's seizures (not bad ones but again not sleeping) and it’s also the morning so...
  • Trying low dosage of trazodone again (prescribed for sleep before knowing what the problem was). Helps my mood a bit but does nothing for my sleep. 
  • Obviously have done all the sleep hygiene stuff, no success.
  • (My nightly life for the ~ last two years, and for weeks/months randomly before that, has been waking up for i don’t know what reason and not being able to fall asleep for hours. Don’t seem to be stress related (though stress may make it worse). My sleep has always been somewhere between fragile sleep (every tiny thing wakes me up) and severe chronic insomnia.)

Posted Mar 4, 2026, 7:08 AM UTC

110
Loading comments…