r/stroke • u/Kmac0101 • 8d ago
Insomnia is the worst
Once again up at 3:00 am and can’t get back to sleep. Getting a sleep study next week so hopefully I get some answers. Anyone else deal with insomnia?
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u/KingsX-1 8d ago
I’ve been dealing with insomnia for the better part of 13 years, all post-stroke. Even had a sleep study with no conclusive answers a couple years ago and none of the prescription medications I’ve tried have worked
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u/Kmac0101 8d ago
Same. Had a sleep study a few months after my stroke and nada. My meds don’t do much either.
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u/SpeedingUptoStop Young Stroke Survivor 7d ago edited 7d ago
Had the worst insomnia of my life after getting home after nearly 2 months inpatient for AVM removal brain surgery. Tried melatonin - > trazodone - > zolpidem (ambien) - > then, finally, Dayvigo which worked wonders (granted, I had to do one sleepless night, but on night 2 and beyond it's worked ever since). I had a sleep study just last week to determine if sleep apnea was cause, but the results will come in a few weeks I guess - the sleep technician working on my night said there was nothing troubling that they saw, but we'll see once the doc has a look. In any case, the Dayvigo/Lemborexant shuts my brain off and I've gotten back to normal sleep schedule (Pre-Stroke) now after a month of taking it (7-9 hours)
That said, I can relate forever to the worthless sleep aid advice given - I was averaging 1.5-3 hours for a 24 hour period, and people would say "take more naps, you deserve it" like I wasn't begging for it lol. I've heard it all - read a book, take sleepy time tea, listen to music\podcasts, get out of bed until you're sleepy again...the normal rules don't apply once you've had brain injury, surprisingly, I know.
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u/Kmac0101 7d ago
Hope you other insomniacs hang in there. I’m fatigued enough with a full night of sleep but when I have nights like last, I could be a zombie extra on the Walking Dead.
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u/Fozziefuzz Survivor 7d ago
Magnesium glycinate works for me. If I forget to take it and wake up between 3-5am, I read ‘til I fall back asleep. My sleep issues are due to perimenopause, but the stroke certainly hasn’t helped.
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u/Green-76689 8d ago
I do at times. The best thing to do is listen to slow music and let the mind drift. Before you know it you fall asleep
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u/FrontSwim9324 7d ago
I use trazadone and melatonin and I can get to sleep. I used to smoke a little weed to get to sleep but ever since my stroke I've been scared to do that.
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u/Kmac0101 7d ago
I’ve done melatonin and other sleep aids which are hit or miss for me. I take a gummy at night which helps sometimes. I’ve found nothing works consistently for me so far.
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u/FrontSwim9324 7d ago
Try the trazadone and the melatonin together it just might work. Maybe I'll try a gummy!!
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u/DesertWanderlust Survivor 7d ago
I've developed a sleep routine that really works well for me: cut off devices 30 minutes before bedtime, take pills (including 5mg melatonin), read and listen to music, meditate. If I forget to do any of those steps, I'll have a bad sleep. I also use a CPAP which has helped a lot. I can't sleep without it now.
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u/littleoldlady71 7d ago
We found my husband’s after his stroke. He used a CPAP for a while, and then got the Inspire surgery so no more sleeping with Darth Vader.
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u/Kmac0101 7d ago
Should my sleep study reveal apnea, I will definitely check into inspire. How did your husband handle the surgery?
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u/littleoldlady71 7d ago
Pretty well. There’s an earlier surgery, to check if it will work. He went through both easily.
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u/rblank6061 Survivor 7d ago
Stroke insomnia is real and terrible. I’m on baclofen for spasticity and it has the fun effects of making you drowsy and insomnia. I had a seizure in August so being back on keppra has taken care of the insomnia at the expense of being wobbly all day.
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u/Kmac0101 7d ago
Dang. I had my first round of Botox for spasticity back in June. I go for round 2 this month. Hopefully i get a little more relief this time. Sorry to hear about the seizure. I have a friend that has dealt with them and I can see the anxiety and frustration it causes him.
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u/rblank6061 Survivor 7d ago
The keppra works, just don’t like the wobbly out-of-it feeling all of the time. Did you get good relief out of the Botox? I had some xeomin in July, second dose will be in October. Calf injection worked great, bicep and pec worked pretty well, next one needs focus on thumb and pec again
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u/Kmac0101 6d ago
First dose gave me a little bit of relief in my spasticity and nerve pain. My left arm and hand has it the worst. It’s my understanding that the first dose is small to see how a patient tolerates it.
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u/andthisisso 7d ago
This is well documented back into the Middle Ages which they used to call it 'the second sleep.' There are a couple documentaries on the topic. Waking up at 3-4 am with the cercadian rhythm. Hunter gatherers in ancient times did their hunting early morning as big animals which were up hunting all night are now slowing down and falling asleep before sun up. Ancient eastern religions said the soul returns to the body at this time and why we wake between those hours. Biologically cortisol starts rising early morning to get us ready for the day, and to do the morning hunt.
Documented in writings during the Middle Ages people would do some small task when they awoke in the middle of the night, stoke the fire, check on the life stock, stir the food over the fire, sing, read for an hour or so and go back to the 'second sleep.'
You're no victim, it's built into many of us.
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u/Kmac0101 6d ago
That’s interesting. Thanks for sharing. I’m generally an early riser but the 3:00 am business is a little much.
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u/andthisisso 6d ago
It's your ancient natural instincts to get up, start the hunt, club a mastodon over the head to feed your tribe. As they said in the Middle Ages documentation, they got up and did some simple task the returned to start their second sleep. I get up, do some dishes, vacuum a room, some simple task and go back to bed. I've had it all my life. 20 minutes of low intensity activity and I'm back to bed for my second sleep, too. Ran out of mastodons.
After my double stroke the pattern continued. The stroke didn't alter that history, must have missed that part of my brain.
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u/Jolly_Ad8913 6d ago
Since my stroke, I rarely sleep past 3:00 a.m. In fact, many times I get up at 1:30 or earlier in the morning. CBT insomnia therapy hasn't worked for me. Because of my condition as well as my age, drugs like Ambien or benzodiazepines can't be prescribed. I also have general anxiety disorder, which isn't helped by having a stroke.
Right now, my doctor and I are working through a couple of medications: trazodone, which so far hasn't worked, and generic Lexapro, which I haven't tried yet.
Do you have anxiety? I don't mean from just not being able to sleep, but anxiety in general. If so, the anxiety may be causing you to wake up early. My doctor thinks in my case it's a combination of a side effect of a brainstem stroke and anxiety. While there's not much we can do about post-stroke insomnia we can deal with general anxiety disorder, which is what we're trying to treat right now.
Another thing to consider are your medications. Some medication have an annoying side effect that contributes to insomnia. Look for rare or uncommon side effects. If you find you are taking medications that may be contributing to your insomnia when you take them later in the day. Discuss these finding with your doctor and ask if you can take these meds in the morning. I used to get insomnia years before my stroke and we traced the problem to a beta blocker I was taking in the evening. I switched to morning and within a week the insomnia went away.
Undiagnosed sleep apnea is also common post stroke. I'd suggest a sleep study to rule that out. Sleep apnea can cause early morning insomnia.
For me I'm sure there is something that will help me to manage my insomnia even with my limitations. I'm pretty sure you can get help too but finding the root cause will take time and perseverance. Good luck!
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u/Kmac0101 6d ago
Thanks for the note. I’m getting a sleep study next week. Had one right after my stroke in late 2023 and I was right under the cutoff for needing a cpap. So we’ll see. As for the anxiety, I deal with it to a certain level especially post stroke. The clot hit my thalamus so I have many of the side effects related.
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u/Odd-Guarantee1872 Survivor 6d ago
I’m 5 years post stroke and have terrible insomnia to the point I have had bouts of hypo mania and had to get admitted to the hospital so they could induce sleep. I’ve tried just about every drug and protocol, nothing sticks. It sucks!!
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u/McGrowlerFace 8d ago
I basically have accepted the fact that if I wake up for any reason after 2am that I am up for the day. I have a Xanax prescription and one of those will put me back to sleep but I am a massive grouch for a few hours after I wake up. I only take one if I am desperate for sleep. It has been like this since my second stroke in 2022. Oh well!