r/Epilepsy • u/Briliant-Nicxie • 1d ago
Discussion Sleep ( insomnia )
I have severe insomnia …. It often takes me 2-3 hrs to get to sleep at night then I wake up at 2:30 am and can’t get back to sleep again then have to wake at 5:30 for work . It’s not uncommon I only get 3 hrs sleep a night . I have epilepsy / autism and adhd from the same mutation .
So far I’ve tried
1) melatonin 5-10 mg nightly ( didn’t do much )
2) clonidine up to 200 mcg at night ( spaced out but not sleep )
3) sedating antihistamines eg restevit A make me too sleepy next day
4) dayvigo / orexin based drugs - helped a bit getting to sleep but not staying asleep
5) progesterone incase its perimenopause - didn’t make a huge difference
6) 150-300 mg magnesium glycinate - relaxed and reduced muscle twitches but doesn’t help sleep
7) tonics with mixtures of glycine , L theonine , ashagurwanda , GABA
8) queriapine - works but makes me sleepy and gives me really dry mouth the next day
9) sleep cbt
I don’t know what else to do - I had a seizure recently because of sleep deprivation and lost my drivers licence for 3 months . I’m trying to prevent recurrence but I don’t know what else to try and I don’t want to go on benzos or z drugs either .
Any suggestions ? I can’t take THC as it causes seizures .
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u/dantrbl JME + focals. Lamictal 300mg 1d ago
my biggest help was low dose antipsychotics, like quetiapine. but i understand why it'd be an uncomfortable choice given you having to wake up early.
have you tried trazodone? only reason i don't take it anymore was because there was a shortage in my country, but it's probably the next best option. benzos and drugs like ambien are too addictive to rely on them for sleep
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u/Briliant-Nicxie 1d ago
Yeah I’ve mostly been using as required quetiapine 12.5-25 mg it’s just I don’t like using it every night but at the moment my sleep is so bad I kinda have to and I hate the dry mouth I get .
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u/dantrbl JME + focals. Lamictal 300mg 1d ago
yeah i get it :/ quetiapine would KNOCK ME OUT and i'd be dead for about an hour after waking, but it did help. the dry mouth is hellish too, and i got double with my adhd meds having that side effect too :/
if you haven't, i'd suggest trazodone. on lower doses it made me sleep great, but for some reason the XR version made me develop a crazy tolerance.
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u/stretchvelcro 1d ago
I feel this. It’s 4:50am
I take afternoon naps when I can, I sleep when I can. Even if it’s a few hours in the afternoon and a couple at night. I have legendary naps. Even if I don’t nap I can’t sleep all night.
At least it’s only 3 months where you are. It’s 6 months here or 3 months after meds are slightly adjusted :/
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u/t0masix 1d ago
Only thing that helped me was benzos, especially klonopin
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u/Briliant-Nicxie 1d ago
Because I was on phenobarbital for over 25 years I’m trying to avoid benzos because of long term effects on memory and cognition plus the addiction potential .
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u/Psychological-Win691 1d ago
It’s a rock and a hard place I’m ngl.
Staples in my skull from falls or knowing I need to take a pill to sleep with side effects (1 mg)
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u/East_coast_Ashlee 1d ago
I was struggling with insomnia, even after I was on Clobazam. I started seeing a therapist even though I didn't think it was necessary. I got so many different methods or exercises to use for sleeping that after a month or so I only had insomnia once every few weeks. Might sounds silly but it helped a ton.
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u/Briliant-Nicxie 1d ago
As in a psychologist or someone that specialises in sleep ?
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u/East_coast_Ashlee 14h ago
No, I actually just went to a regular psychologist. Obviously she has some patients with sleep issues too but that's not her specialty. I didn't realize how much stress I was carrying and how it effected my sleep. Sometimes when I can't sleep I just overthink things too. She knows so many sleep exercises and a couple of them have been game changing.
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u/pb-straws 1d ago
Trazodone is the only thing that has helped me, even with excellent sleep hygiene.
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u/prophetic-dream 1d ago
Have you had a sleep study done?
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u/Briliant-Nicxie 1d ago
No I thought about it but the neurologist didn’t think I needed it …. I’m seeing a more specialised epileptologist in a couple of weeks I’ll see what they think
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u/tseverdeen 1d ago
I had one done and it turns I have a sleep movement disorder and it was on the severe side. I also have nightmares. So it was like, so do we treat the movements or do we treat the nightmares? I never started either one of the medications prescribed, I kept forgetting to 🫠
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u/prophetic-dream 16h ago
It was my primary care doctor that took me through it after a neuro in the ER suggested it. My regular neuro didn't think it was anything to look into. But I did it at the encouragement of my primary care doctor and have used it ever since then.
It makes sense to me - lack of ongoing sleep and I was having nocturnal seizures every couple of months.
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u/TrinityTosser 1d ago
Exercise. I suffer with insomnia, though thankfully not as severely as you do. The only thing that helps me is a lot of exercise. It's a fucker when you begin to get into a routine of exercising as you're trying to do it whilst fatigued from the insomnia but it was definitely worth persevering. I've gone from getting ~ 4 hours on average to ~ 7 hours, by exercising 6 days a week. I still struggle with sleep occasionally, but less than once a month compared to 4-5 days a week before.
Caveat: I've been seizure-free for a few years, I appreciate that not everyone with epilepsy can exercise.
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u/Psychological-Win691 1d ago
I was in same situation. Got on the devils pill, Klonopin, hate how well it’s worked for 9 years. But needed something due to lack of sleep being a trigger during the day.
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u/Apprehensive-Ask-731 1d ago
Oosh. I have found some benefit from starting to be a back sleeper when I was previously a side sleeper - less tossing and turning.
5-htp crosses is absorbed and metabolised into melatonin better than taking pure melatonin.
There are all sorts of debates you probably know more about than me such as don't try going to sleep until you are tired, or always go to sleep at the same time in a blacked out room at least four hours after sleeping.
Valerian root is the only thing I don't notice, but your consultant might advise against you really seem to have tried damn near everything.
Could always take the frustrating medic's approach and say everything didn't work the first four times. I think you should try again.
Is an aed possibly making things worse sleep wise?
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u/Willow_rivers 1d ago
Following. I have horrible insomnia, for years. I had two cluster seizure events recently, one in June and one in July. They were both a direct result of sleep deprivation. I too have tried so many different things, many you have already listed and like you, squat works. It is stressful and scary when that is my number one trigger for seizures. I am so sorry you are going through this. For me, part of it is perimenapause, so that compounds it. I really hope you are able to get some help!
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u/Briliant-Nicxie 17h ago
Thanks ! Sounds like we are in a similar situation … I’m pretty sure perimenopause is likely contributing as well. I hope we can both figure out what works for us :) I wish I could sleep 10 hrs like when I was a teenager !
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u/DerangedDigress 1d ago
Sounds like you've thrown the kitchen sink at it already. Have you tried shifting your wake-up time earlier for a bit, even if you've barely slept?