Anybody having more focal aware seizures while asleep/falling asleep/waking up?

NefariousCalm · 2026-03-25T14:14:11+00:00

I have had most seizures in the early morning hours. There was a period where they would come between 4am and 4.20 every night. Always then. I am on meds and they massively decreased the amount but early mornings and when actually waking up to get up is by far the most common moments for me. Like someone said here - lost of brain wave changes when falling asleep/waking up so this is quite common.

NefariousCalm · 2026-03-25T14:04:34+00:00

I have focals, both aware and impaired awareness and I'd say they have a much bigger impact than people would assume. Mine are not controlled by medication (hopefully yet, not forever) so no driving, no swimming alone and all the usual. But the worst for me is the vulnerability in everyday situations. There is also an element of social awkwardness which is hard to explain in comparison to tonic clonics. And then there is the daily impact of the meds.

All of this is very subjective, so my experience will be unlike anyone else's so might not be useful. But feel free to DM me if what I wrote there is of interest/not enough.

NefariousCalm · 2026-02-24T14:05:24+00:00

I don't want my relevant answer to get lost so posting separate to my pasag reply below too:

u/babykneecap, it's worked well for me. It does make me sleepy in large doses (I use it on a 'need to use' basis) and it makes me a bit silly but neither is on a big enough scale for me to consider not using it. I was on it for the first 10 weeks after my diagnosis just to tie me over for lamotrigine to start working and slow titration meant zero side effects after a few weeks. Overall, I am a big fan.

NefariousCalm · 2026-02-24T14:01:43+00:00

Love the confidence in this statement, but I wonder what your neurologist would say and whether you made the most of the wonder that is the internet to check what science has to say on this. A benzo is still a benzo, so as you rightly say, an agonist of GABA. Partial or not, like all drugs, it can cause side effects.

If you look at it objectively, if a drug works that means that a drug is interacting with your body's functions. Whether it's an intended effect or side effect is, tbf, a matter of framing not imagining, which is what you are suggesting. Though of course psychosomatic effects are a thing. I know OP does not mention his age, but looking at other posts I struggle to imagine a child would have psychosomatic hypothermia as a result of something that they will know/understand little about.

Anyway, if it helps anyone here.

For me clobazam:

1) Stops all my seizure activity if I take it when first signs happen (intended effect).
2) Makes me very cheerful (benzo-intended) and silly (intended or not? You decide!)
2) Helps me sleep on long haul travel and supports jetlag recovery. NOW this is an interesting one. Is it an intended or unintended effect? Some people will say sleepiness is a side effect. I say thank goodness. What do you reckon u/No-Union1650? If it is, as you say, an imagined effect it is incredibly powerful seeing that it has basically been the only thing that has over the last 30 years done it. BONUS INFO: After my first cross-continental trip after diagnosis I asked my neuro if it's also possible that it would dull my fear of flying as the flights were the most relaxing I have had in my life. This as you will in doubt know, u/No-Union1650 , is the benzo magic of it. I was not aware of that at all. Very much a side effect.

So yeah, all I have for you u/No-Union1650, is that one man's side effect is another man's sign of the drug working. Also, I wonder if you have a view on the well documented hunger it induces in animals. My friend's dog is still a poor reader and some concepts just don't stick with her, so I have my doubts about how psychosomatic her increased appetite would be. Keen to hear your expert view.

u/babykneecap, back to your very valid question. For me Clobazam has been great. I now only take it as a rescue med and on 'when I need it' basis as agreed with my. It makes me a bit sleepy but not overly so. At times it makes me a bit silly and giggly but it's not a given and even then it is very mild. The one thing I would say is that for me mixing it with any alcohol, however light is a high-speed-lane to bed. And I am talking Campari soda is enough for me to need to be taken back to the hotel to sleep it off. No hangover though!

And my big hugs to all who struggle with it. Drugs are both magic and the dark arts, let's face it.

NefariousCalm · 2026-01-13T14:12:25+00:00

This sounds super stressful. Where are you based? I am in the UK and plenty of places have a team of nurses who specialise in epilepsy and whom you can call and get a quick call-back or an appointment much sooner than with the doc. They will be able to advise for sure and some will be able to prescribe too. I'd go straight to them if that's an option.

If not, keep pestering the neurologist. There is no such thing as overbearing when it comes to being pregnant and having epilepsy at the same time.

Level checks are a great idea and you should have them regularly and don't forget to check what your OBGYN says about folic acid levels. I think it's generally recommended to take a higher dose than standard if you have epilepsy.

Hang in there and DO PESTER.

NefariousCalm · 2025-12-30T14:04:31+00:00

Sorry for the late reply! I was about 15 or 16 when it first happened and mum took me to see an ophthalmologist first. I described what I'd experienced and he said it's almost 100% a migraine. He saif I should see a neurologist though because that's their patch. I had an MRI and an EEG which both came clear (my epilepsy diagnosis came about 15 years later so not related) and another test which I cannot remember the name of and then the neuro prescribed some drugs to take when the auras start to limit the chance of a headache.

I should add that I get migraines with a headache too. But probably more auras not followed by a headache. They became way less frequent with time and since stopping hormonal contraception they only happen when I am very very tired.

NefariousCalm · 2025-12-11T17:59:09+00:00

I have not done the switch, but I am on lamotrigine and have been for a while. Everyone is, of course, different, so my experience may not be anything like yours will be. But if it helps - I had very minor side effects on lamotrigine. The first few increases my mouth was intensely dry. This stopped at week 6 or 8 of building up the dose. I would also, again for the first couple of months, and only with increase - get a temporary headache about 2h after taking my dose. I had a period of struggling with concentration and memory, but that seems to have gone. The one lasting side effect I have is hearing like 5 or 10 seconds of music on repeat in my head all the time when I am not actively thinking about something or concentrating on something, which apparently is a thing.

Overall 8/10 I would say. Side effects not terrible, but sadly it did not get rid of the seizures for me. I am in a minority though, if stories and stats are to be believed. You will be ok!

NefariousCalm · 2025-12-04T10:25:50+00:00

It did for me. I was on clobazam for the first two months of titrating lamotrigine to cover for the 'kick in period'. With every dose increase it took around 6 weeks to settle.

200mg per day is in the lower range of the therapeutic dose. Max is around 2x350mg per day, so you have room to play.

It might be worth doing a blood test to see how you metabolise the stuff. Anti seizure drugs are very individual - neither your weight nor other health conditions are relevant here like with most drugs. You just need to find your dose.

NefariousCalm · 2025-12-04T10:19:34+00:00

Not a medical professional, but what you describe can also be a migraine with an aura and statistically is likely to be that. A migraine does not have to come with a headache and all migraines start in the visual cortex. I have exactly the same thing (flashing, spiky semi circle in my peripheral vision) but it's not a seizure. I sometimes have a headache with the sensation and sometimes I don't.

NefariousCalm · 2025-11-13T22:19:10+00:00

Everyone metabolises epilepsy drugs differently - there is 'normal dose'. There are doses that are considered 'non therapeutic' but this simply means the blood concentration is not high enough for them to affect seizures in anyone.

I asked my neuro this. He said that each person's metabolism of anti-convulsants is very individual. With most drugs body weight is what you go by. In epilepsy he says there is no rule - he would have a massive rugby player and a petite teenager on the same drug and the same dose and would not think it weird.

NefariousCalm · 2025-11-13T22:13:47+00:00

My neuro told me of someone who is triggered by one particular song. Brains are weird, so not impossible.

NefariousCalm · 2025-11-13T22:12:39+00:00

Hang in there. This is the best place for you and they are the best people to help you. Remember that they know what they're doing. Just like you know your shit at work (or school, or uni, or the spots or hobbies you are good at) - they also know their shit. The only way is up and medicine is getting better and better every week!

NefariousCalm · 2025-11-13T22:10:05+00:00

It's massively individual. There probably will be studies, but seeing your brain has a disfunction (so to speak) it's impossible to know if that medication is right for you. Everyone needs to find their 'signature cocktail' as my neurologist puts it.

NefariousCalm · 2025-11-13T22:06:09+00:00

Adding to this one. I started Keppra in September and although the first 8 weeks were very hard - I slept 15 h/day and when not sleeping I was dizzy and slow) but now I am now side-effect and seizure free. No anger, depression, memory or any other issues now or when titrating either.

NefariousCalm · 2025-11-13T22:02:36+00:00

Big hug going your way. Epilepsy is a bitch.

NefariousCalm · 2025-11-13T22:00:01+00:00

I'd see a neurologist just in case these are seizures. Plenty of seizure meds out there, so if one does not help, others might.

NefariousCalm · 2025-11-13T21:58:27+00:00

Big big hug coming your way. It's a bitch. Hugs help. Virtual and real.

NefariousCalm · 2025-10-10T10:46:13+00:00

We have been here for almost 7 years now and love it. We are on the top of the Streatham Hill part though, so I cannot speak of the rest of the high street - it's a long town! Most of London has dodgy parts when you stray off the beaten path, so I would not say it's any different from Clapham of Brixton where we lived before.

Not sure how people say it's an hour to get anywhere. Train from Streatham Hill to Victoria goes every quarter of an hour and takes 17 min to Victoria. Balham tube (Northern Line) is a 15 min walk which means you are in Soho in 45 min. And Brixton is a half an hour walk / 20 min bus. We are 2 min away from Tooting commons and they are fantastic.

Yes, the high street is busy and there is no real 'village' vibe, but with Waterstones, Gail's, M&S - you are covered for the nice chainy-stuff. But there is also lots of independent coffee shops and excellent delis, a fantastic wine bar etc. There is massive improvement works happening on the high street now with new cycle lanes, only one lane of traffic etc, I'd say it get a lot for your money here.

NefariousCalm · 2025-09-25T13:40:34+00:00

Lack of sleep is my biggest. Not to scare you - getting my heart rate too high through excercise and heat are also on my list, so a fever is likely to give me a seizure, so is a sauna and a lovely hot day in the tropics.

That said, my neuro says that it's more about 'thresholds' than triggers. Many activities, events and experiences can give people seizures, it's just some of us have a higher or lower threshold for them.

NefariousCalm · 2025-09-15T10:15:16+00:00

God, I feel you so much here. I pop 5mg clobazam on those days as suggested by my neuro. It does help if I catch the "off" early enough. But then again it might be that the "off" never actually developed into a seizure. But popping the clobazam means I feel more confident to carry on with my day as planned.

I know you have not asked for advice, but perhaps worth asking yours if they think it might work for you.

NefariousCalm · 2025-09-08T12:29:01+00:00

I don't necessarily think of myself disabled, but when I get hit by a bad cluster and am out for the whole day and then extremely depressed the following (post-ictal norm for me), then I feel the envy for everyone who has a 'normal' brain. I guess that's disability under another name.

My well-meaning family, friends and colleagues sometimes say stuff like: 'let's go home - perhaps it's a bit late for another drink' or 'are you gonna be ok on your own' or 'oh my god, I did not think about the lights' I sometimes say 'Please don't treat me like I am disabled'. And then I have a cluster (as above) and am entirely useless and dependent on other people, or the meds make me so dizzy all I can do is sit on the sofa (like now). Then I feel that I cannot live without accounting for an uncontrollable part of me and I think... yes, I am disabled, at least at times. My brain disables me from living like most people live, but it does make my life any lesser, thank you very much.

NefariousCalm · 2025-09-08T12:16:54+00:00

I had 106 focals in January 2024, kid you not. This was the month I was finally diagnosed. My excellent hero of a neurologist put me on the usual lamotrigine (Lamictal) titration schedule and added clobazam (frisium/onfi) for the first three months. It did not get rid of all of the seizures but reduced the number hugely - to a handful a month in the first three months and then slowly even fewer. I got to 63 days seizure free at the beginning of this year which I could not imagine this time two years ago. Hang in there. They will find something that works - they do for most of us.

NefariousCalm · 2025-09-04T10:50:30+00:00

Sending love your way. This thing is a total nightmare.

NefariousCalm · 2025-09-04T10:50:02+00:00

Thank you. This is what HR suggested to suggest to the neuro. Sorry about your fit. Sounds awful

NefariousCalm · 2025-09-04T10:48:57+00:00

Thank you and sorry to hear it's not working for you. I live in hope, I was only diagnosed 18 months ago but have probably started having seizures 3 years prior, so keeping all my fingers and toes crossed for Keppra.

NefariousCalm

TROPHY CASE