Lived Experience Forum

[D1ng0]

Hey everyone, I hope you're all doing okay.

If you have struggled with insomnia, how have you dealt with it? Do you have any tips/tricks to offer? If you've experienced nightmares or night terrors, how have you dealt with those? I'm dealing with all of the above, and I'm keen to hear about how folks have coped. Even if you don't have any advice, solidarity would be awesome.

If you've struggled to go back to sleep after waking in the middle of the night, or early in the morning, how do you handle that? Sometimes anxious thoughts keep me awake, sometimes it's nerve pain. Either way, relaxing back into sleep feels very difficult.

Thanks in advance, folks.

[tyme]

I tried so many things with my insomnia @D1ng0 

Ultimately, it was medication that kick started a sleep pattern for me. I haven't been able to overcome it any other way... so I still take meds... 

Maybe one day.

[Jynx]

Oh big solidarity @D1ng0 - sleep can be oh so challenging! I don't get night terrors thankfully, though my sister does occasionally and I know how much of an impact they can have, so I am sorry that you are beset by them too. The following is my experiences, so they may or may not resonate with yours, but I hope you find some nuggets in here that help 😉

Whilst I do still get smacked by insomnia from time to time, I have found improvements by examining and altering the way I view sleeplessness. I think one of my biggest challenges has been those evenings when I know I need to sleep (cos I have to wake up early or I have a big day ahead), and just by having that thought alone can mean I end up getting no sleep at all.

I learned something about a year or so ago that ended up being a game changer for me - even if you don't sleep, just resting (laying down and cutting out all sensory stimulation, like sound and light) does more to improve brain function than if you continue to do activities and stuff. I call it a 'power down'. I also find it near-impossible to nap most times because it usually takes me at least 30-40 minutes to get to sleep, so a 20 minute power nap is pointless; instead I have a 20 minute power down and legit it does help! And same for trying to sleep and being unable to, if I reassure myself that I'm still having a power down and it is still helpful in giving my mind and body rest, it alleviates a lot of the anxiety for me. 

Another thing I try to notice is frustration. When I know I need to sleep, but can't cos my brain is too loud, I have learned that if I start to get frustrated with myself, it's only going to increase all the brain chemicals that keep me awake. So rather than continue to lie there getting more and more frustrated, I will get up - just for half an hour or so. I try to read rather than go on my phone, blue light and all that, or I'll potter around and do a household task or something. Then I'll feel the wave of sleepy and go 'ok time to go be horizontal again!' and like, 7/10 times I will end up falling asleep. 

For me, trying to practice acceptance has gone a long way. Anxiety can tend to build on itself, like with frustration - the more agitated I am, the more my brain releases chemicals like adrenaline or dopamine that are associated with action, movement, tasks, etc., the more awake I am, thus the more frustrated I get, and  on and on. It becomes a cycle. The more I think about how much sleep I'm not getting, or how annoyed I am, or how impacted my day will be, the worse it gets. Sometimes, I just have to remind myself that even if I get no sleep tonight, it doesn't mean everything will be a pile o crap - I may not be at my best, but I can still function and get through the day. 

So that's my ramblings about how I have approached my insomnia! Hope you find some tactics that work for you my friend 🤞💜

[Snowie]

I wish I had answers for you @D1ng0 

I'm like @tyme I take meds for sleeping and then if they don't work I have another set of meds I can use.

It works for me at the moment.

[tyme]

I lived with insomnia for about 15 years. I had many days where I'd just stay awake for days @D1ng0 . This had terrible effects on my mental health. 

I tried so many strategies. I even went to sleep training... I can't say it worked.

[Zoe7]

Similar struggles for a long time here too @D1ng0 For me it was a lot of therapy and medication that helped. I also have severe sleep apnea so that was not helping - probably had it for most of my life but finally did all the tests a couple of years ago to confirm. I was surprised how bad it actually was but sleep has been much better since.

The nightmares took a while to settle - needed a lot of therapy and strong medication to help with all that. A sleep routine also helped ie. no screen time before bed

I hope you find what works for you as it is not a great place to be when we cannot sleep.

[tyme]

Yes @Zoe7 !

Good point about routine. 

@D1ng0 , even though I'm such a bad sleeper, I try to keep the same routine. Therefore, I don't sleep in the afternoon as this can really affect my sleep even more. So even weekends, I tend to wake at the same time. My body may be asking for a sleep in, but I stay to a routine as much as I can. 

(Hrmm... this Easter weekend is a bit tempting though... I might sleep in an hour?)

[D1ng0]

Hey @Jynx, thank you for the insights! They're really helpful. And cheers for the kind words, night terrors are indeed awful... I hadn't suffered from them for years but, with everything else that's going on physically/mentally, they're back. What really worries me is the prospect of sleep paralysis coming back as well. Those episodes were horrifying.

Anyway-- thank you again for describing how you view and experience sleep. I can really relate to the pressure that comes with knowing I need to sleep and, for some reason, that preventing me from sleeping. I hate that it shouldn't make sense, yet our brains do that?!

I definitely feel that same frustration, too. Thanks for telling me how you deal with it. Since the event which caused my chronic pain, I've gotten into a bad habit of deciding that, when my pain is so severe it's keeping me awake, I might as well go do some work for a few hours, so at least I'm accomplishing something. Will keep a book at my bedside and give reading a go instead.

Practicing acceptance in the face of insomnia sounds like a very powerful approach. I'm amazed by that, I'm really glad you can access that mindset. It feels impossible for me, but I am going to bring it up with my therapist, and hopefully they will help to make it possible. You've hit the nail on the head when it comes to feelings of frustration, agitation, hopelessness about tomorrow being bad, etc. It's reassuring to see it written down by someone else.

Thank you again 😊

[D1ng0]

Hey @tyme, thanks so much for the solidarity, and for sharing that you've found a way to develop a healthier sleep pattern. And after 15 years, too!! That definitely gives me hope that I can reign in what I'm going through, no matter how long I've been struggling with sleep.

[D1ng0]

Hey @Zoe7, thank you so much. I really hope I can find an approach that works for me, too. Reading your reply, and what other people have said, it seems like multiple approaches are best to tackle poor sleep, like routine combined with sleep hygiene combined with medication, etc. When one thing doesn't work for sleep, I tend to get frustrated and just stay awake, but what I'm sensing is that I need to stick with a few things and hopefully they'll work together to get a good outcome.

I'm really glad your sleep has been better since you identified your sleep apnea, I've heard that can really affect people's lives!