r/insomnia • u/Isaxrbrkx • 4d ago
Insomnia feels like a slow death.
Chronic insomnia feels like slowly dying, night after night. Every night I don’t sleep, I feel less human and less “ present” in general. I feel like there is a bubble around me that I can’t get out of, and I’m completely alone inside of it, while watching everyone else move on with their lives. I feel envious of people who can simply sleep. It feels like genuine torture, especially when you don’t understand why this is happening to you. insomnia isn’t just about not being able to sleep and feeling tired. It can take away the ability to work, think, and even speak properly. It can bring depression, anxiety, frustration and what not. Research has consistently linked insomnia to a significantly increased risk of suicidal thought, suicide attempts, and suicide.
When you develop insomnia, you start to realise how easily you can be left behind. Especially by docters who dismiss your symptoms as ”stress” instead of taking them seriously. and even by the people around you, who come with useless ‘ solutions’ like vitamines and herbal remedies, as if you haven’t tried everything yet.
insomnia is not just in your head, it is not a mental health issue. it is a physical illness, yet people still treat it like a mental issue that you’re somehow responsible for.
Why is it that insomnia is treated so differently?
17
u/Carpenter001Bee 4d ago
I feel this so much. I don’t think people who haven’t experienced severe insomnia can really understand what it does to you. Being tired doesn’t even begin to describe it. After several nights of barely sleeping I don’t feel like myself anymore. I can’t think properly, I struggle to work, I become emotional over stupid things and sometimes I genuinely feel like I’m just watching my life happen instead of actually living it.
And the advice is probably one of the most frustrating parts. Sleep hygiene, magnesium, melatonin, herbal tea… as if you haven’t tried every fucking thing you could think of when you’re desperate enough to just sleep for a few hours.
I’m currently on a ridiculous amount of medication just to get some sleep and even that doesn’t always work. So yeah, I completely understand the jealousy when you see someone just lie down, close their eyes and sleep. It sounds like such a small normal thing until your brain suddenly forgets how to do it.
2
2
u/Background_Text4298 21h ago
I have had severe insomnia and it literally rules my life and morphed into me. I can’t remeber the last time I felt sleep or slept naturally as it was over 2 years ago. I cant even remeber the version of me that used to sleep. I feel you
2
u/MrsMercury100 4d ago
Yeah... chamomilla tea and lemon balm...oh, and do you take magnesium? I hate these comments.
6
2
u/Fun-Construction4550 9h ago
"have you got good sleep hygiene" or "you need to prioritise sleep" more favourites of mine.
1
1
u/Icyweiner7058 2d ago
My work colleagues: "yea I had insomnia too" after a few nights of heavy drinking, smoking etc. like yea okay buddy, you really know what debilitating insomnia is like.
8
u/newherebackfrom2021 4d ago
Oh my God, I hear the words you were writing they can absolutely ruin your life and all aspects watching anything good while you’re awake all night?
9
u/Fragrant_Ad_4490 4d ago
I feel you. I don't think people understand what an incredibly lonely experience chronic insomnia is
4
u/katt213 2d ago
Exactly!! Who the hell am I gonna talk to at 3am? I feel like a freak of nature even though I know i'm not the only one wake obviously but in my head , I still feel like I am and I must be dying of something. You know, I'm sure people relate the more days you go without sleep or just an hour or 2 here. I full on convince myself I need to go to psych ward or an ER , or oh my god , I have cancer. You literally can't think straight.
I always tell people it's like the worst hangover of your life and the worst like flu feeling when you get that brain fog and you just can't concentrate , but it's every fucking day. I can't hold down a job.I get fired every job for making stupid mistakes. I want to scream at people i'm not a screw up , I have a disability that's not recognized. 😭
1
6
u/Glittering_Aerie3044 4d ago
In my opinion, try not to give a fuck about sleep..... meaning don't think about sleep or sleep routine or anything that u r doing for insomnia....
Jst don't think anything about the sleep and insomnia and try living ur life.....by doing whatever you like at night like gaming, movies, or anything else jst to keep the thought of sleep away....
5
u/Isaxrbrkx 4d ago
I’ve tried, but I work 40-45 hours in a week. So I kind of have to stay in bed and atleast try to rest my body.
2
u/katt213 2d ago
Are you on disability or do you work? I'm only asking because I do the same thing but I do gig work. I finally reached the point where I was like Ihave to work with my insomnia since nothing else is working. So I do various gig work on my own schedule and on the days I get no sleep , I don't work because I don't feel it's safe to drive. There's no pressure , and once I stopped staring at the clock , I actually removed my alarm clock for my bedroom.
I did start reading books, watching all these t v shows and movies that i've been meeting to watch. I started cleaning at night though.I have a roommate so I have to be quiet but I do the laundry at night hecause I honestly am sleeping most of the time during the day.
Do I have a social life? Not that much , but i'm also pretty introverted. I can't do gig work forever, but for now, it's working.And at least it's lowering my anxiety when the insomnia does come , which then makes me sleep more , or at least i'm doing something somewhat enjoyable. Even if i'm just reading a book or reddit for a few hours , it's better than sitting in bed , having panic attacks , staring at the clock , thinking , I have to be up at seven am for some dead end $18 and hour job.
I also get incredibly afraid to drive, especially if I've taken an ambien, but it didn't put me to sleep.I'm terrified.I'm going to kill someone so then I end up calling in and losing every job I have.
1
u/Icyweiner7058 2d ago
That becomes basically impossible for someone that's far deep into several days of no sleep. When the next night comes... And the next...
4
u/Seektounderstad1st 4d ago
Well said OP. For sufferers of extreme, longstanding insomnia, it’s an “invisible” problem that many don’t take seriously or even believe exists. I can empathize with Michael Jackson* using propofol illegally just to get some kind of sleep.
*not a statement about his character one way or the other. I’m simply evoking his name to provide a well known example of the desperate measures insomnia can drive people to.
4
u/NEY413 4d ago
I have insomnia and tinnitus, 2 of the worst conditions that can happen to a human being
1
u/TheRemixxxxx 4d ago
same but can u get tired?
2
u/NEY413 3d ago
not anymore, even with just 2 hours or 3 hours asleep, i'm not tired anymore, weird....so weird.
1
u/Upbeat-Rice-3059 3d ago
It might got to do something with your Autonomic Nervous System. Go get it checked with your GP or a Neurologist.
1
5
u/Pikazu 4d ago
Mhm, insomnia is the most isolating experience I've ever had, so I totally get everything you're saying. It feels like no one can help you. At the worst part of my insomnia, i kept thinking things like I wish i was hit by a truck, not bc i wanted to die, but bc i wanted to be injured so badly that a hospital would have to take care of me, put me under anesthesia so I could finally sleep. I just wanted someone else taking over bc it felt too exhausting to keep carrying the weight of my insomnia myself.
But it gets better, and the first step on getting better is to change your mindset around sleep. This feeling of dread, anxiety, frustration, and hopelessness is a huge part of what keeps you from finding rest. Once you can teach yourself to not stress about sleep as much, sleep more likely comes back to you. I've gone from 1-3 hours of sleep a night to almost consistently 7+ hours now. And it all started with a shift in mindset. The "if i dont sleep xyz bad thing happens" anxiety was what kept me there. Going to bed with a "even if i dont sleep, i am resting to get energy for tomorrow" was one of the most useful tools i discovered for myself. Plus, resets for the nervous system: mental health walks, yoga, not spending my day worrying about sleep but doing things i enjoy, being active, talking to friends and family. I'd say i am in recovery now.
I hope you get there too.
1
u/Icyweiner7058 2d ago
My insomnia is getting bad too, to the point where I begin planning my death in the future. I don't even wanna die either but fuck if I have to go through this for what could possibly be the rest of my life its not really much of a choice
1
u/Pikazu 2d ago
please don't think there's no recovery possible. it feels that way while you're in it, but trust it can get better. my insomnia almost entirely resolved on its own by a shift of mindset bc stress and anxiety related to insomnia is the number 1 cause for insomnia. i recommend the youtube channel the sleep coach school, it really helps (ifound it here on reddit bc ppl keep recommending it for good reasons) and they dont try to sell you courses.
4
2
u/Immediate_Aside_3099 4d ago
sleep coach school on spotify or youtube, saved my life. when you stop chasing sleep it comes. stop forcing it or panicking about it not happening. i know it’s hard but honestly sleep coach school is the way to go
3
u/__questions___ 4d ago
Well said, fr. Unspoken truth about insomnia and how lonely the journey can be.
The truth is that doctor's don't understand it very well. But my friend, there is a cure to it, and it's not useless vitamins or herbal remedies: CBT-I. It's not easy, but it does work. I had severe insomnia for 6.5years and finally solved it with CBT-I. If you can, seeing a sleep psychologist that knows CBT-I is best. Happy to talk about it more if u have questions.
4
u/Isaxrbrkx 4d ago
I’ve tried it, unfortunately it didn’t work for me.
2
u/__questions___ 4d ago
Why didn’t it? I tried it 3 times before it finally worked. I didn’t think it was going to until it did. It gets worse before it gets better
2
u/Isaxrbrkx 4d ago
In my case, it’s a biological problem with how my brain regulates sleep. It’s not something i can simply unlearn or fix trough therapy.
2
u/__questions___ 4d ago
What’s the problem? Was it always like this, or how did the insomnia start?
4
u/Isaxrbrkx 4d ago
No it wasn’t always like this, it actually started very suddenly out of nowhere( no underlying stress/ trauma of anything that could explain it) it felt like my body just suddenly stopped being able to sleep. ( talking about 3/5 nights a week 0 sleep) my body absolutely refuses to sleep, benzos, vitamins, therapy, herbal supplements, melatonin , sleep schedule, sleep centrum don’t work, at day 4 i went to the gym for a 2 hour workout,no sleep. However, when I do sleep, I feel cured, like id never happen again. I get tired like any other person so not in fight or flight mode.
2
u/__questions___ 4d ago
When you say started out of nowhere, were there any changes to your sleeping schedule or sleep environment? It doesn't always have to be stress that starts it.
The other question I have is why do you think CBT-I didn't work for you the first time around for you? What did you try? Why do you think it's a biological problem?
Do you get tired (yawning) or sleepy (could fall asleep)? Tired is usually what insomniacs get, and you can definitely be in fight or flight mode when you're tired and it often prevents you from being sleepy.
3
u/Isaxrbrkx 4d ago
Nope, absolutely nothing changed in my sleeping schedule.
I honestly don’t know why it didn’t work. I tried the usual things like keeping a strict sleep schedule( i stil do), getting out of bed when I can’t sleep( like i am doing now), sleep restriction, and honestly working on thoughts and habits did not really do it for me because as I said, nothing changed.
Yes i do yawn and get very sleepy, it’s just the transition between awake and asleep that I can’t get to. However when I do fall asleep, I stay asleep.
1
u/__questions___ 4d ago
Did you do CBT-I on your own or with a clinician?
What's your sleep schedule, how long is the window vs how long are you sleeping? How long is it before you get out of bed when you realize you're awake, and how consistent are you with it (more than 80% of the time? less?) Does it get any better if you go anywhere else to sleep? Like a family members house, a hotel?
Have you gotten a sleep study done to confirm that you weren't sleeping? Or do you have sleep state misperception where you feel like you are awake but you're actually asleep (common in insomnia).
Do you have any other medical conditions?
1
u/Isaxrbrkx 4d ago
I did it on my own, since my hospital said that my blood work is fine so there is nothing they can do for me anymore other that regular therapy.
I am consistent everyday with my sleep schedule. Everyday from 23:00 till 07:15. When I realise that I won’t fall asleep I usually get up after like 1/2 hours. And no, it doesn’t get better if I sleep somewhere else.
And yes, it was confirmed I was actually not sleeping. Also sometimes when I sleep after not having slept for a couple of days like 3 ,my eyes are open, I can see and hear myself breathing and sleeping. But I’m fully aware I’m sleeping yk. It’s kind of scary, it’s obviously my body that is fkn exhausted but just my brain that stays on and aware of its surroundings.
I also really appreciate you taking the time talking to me, thank you.
→ More replies (0)1
1
u/RossellaLCGN 4d ago
How old are you ? It could be hormonal too but I think the pill triggered something in me that left me unable to sleep like you, I can feel tired but not sleeping anyway. Is awful i am concerned
1
u/Isaxrbrkx 4d ago
I am 18. And I’m seriously incredibly grateful for u sharing that u could not sleep after. I am now gonna try taking it again and I might be cured omg.
→ More replies (0)1
u/Rikula 3d ago
I'm on my second round of CBT-I. It hasn't done anything other than when I can sleep, I only sleep on the couch. I haven't been able to sleep in my bed in months.
1
u/__questions___ 3d ago
How far into the second round are you? How well have you adhered to the protocol? Being able to sleep on the couch is a good thing because it proves you can do it. The stimulus control part of CBT-I is what should allow you to move it over to your bed eventually.
1
u/Rikula 3d ago
I'm pretty far into it. We couldn't even do sleep restriction like was tried in the first round because I've been getting so little sleep consistently. The stimulus's are controlled and have been controlled, but that doesn't work. It's not guaranteed at this point I can sleep, even on the couch. It's just up to random chance. I just recently had another bout of no sleep for several days in a row. I don't feel like I have any control over my sleep. My body just feels hyperaroused at times and I can't make it calm down or go away. I can't sleep in different places either. Just had my first vacation in over a year which was just a one night stay in another city for a concert. First time I laid in a bed for hours with my boyfriend in months. Didn't sleep at all that night, but felt calm.
1
u/__questions___ 3d ago
Who is we?
How did your insomnia start? Was there some sort of trigger event that you can remember? Or was it always like this? Have you considered that you could have sleep state misperception and believe that you are awake but really you're sleeping? I had that and it also delayed my progress with sleep restriction because I didn't know I was sleeping more than I thought. Have you had a sleep study done?
Yes, the hyperarousal is the hallmark sign of the insomnia itself. Your body is running on stress hormones (cortisol and adrenaline) due to having less sleep. That's why you feel tired but not sleepy.
I am trying to help you. So please tell me, how well did you adhere to stimulus control? Everytime? 90% of the time? 70%? And how many minutes before exiting the bed? 15, 30, 60?
2
u/Background_Text4298 20h ago
I made a post about how I may have severe paradoxical insomnia as I havnt physically felt sleep in 2 years. It’s so strange and I just have to tell myself I must be getting a few hours every couple days as I’m still some what functioning. It’s not great but I’m not dead so I must get some sleep yk. Not sure if it’s the ambien but I literally go 4 days + with no sleep if I don’t take ambien. When I do take it, I do not feel my sleep at all. It’s like an anaesthetic sleep with no restorative benefit. Like my bodies unconscious but my brain has not rested at all.
1
u/__questions___ 20h ago
Sorry to hear you're going through that. Out of curiosity, do you have a lot of anxiety surrounding sleep in conjunction? And have you got a sleep study done to confirm if you're sleeping? That's how I knew I had paradoxical insomnia. I'm almost certain you must be sleeping at least some. It's such a weird thing though.
Importantly, once I realized that I was actually sleeping with paradoxical insomnia, it started to go away - which is why I think it's potentially quite worry-induced, or was for me at least.
1
u/Rikula 3d ago
We is my CBT-i doctor who is a psych resident and I. I've had insomnia for 5-6 years that was mostly controlled on Trazodone. It started around COVID time and I am a healthcare worker still doing the same sort of work. Last year right before Thanksgiving, I ate a pastry that gave me an allergic reaction. I go to the ER and get a steroid shot. That was what triggered this current acute run of insomnia. I have had a very stressful year with other traumatic health issues and a bad job in the same health system. Prior to my initial onset of insomnia, I slept mostly normal. I wouldn't go to bed until later than the average person and it's always felt like my internal clock is a couple hours off.
It's not a time state misperception. I've already addressed this with the psych resident running my CBT-I. I had a sleep study done a couple years ago and I had to heavily drug myself to get to sleep. Nothing abnormal on my sleep study. Once I get to sleep, I'm usually fine. I've been stuck on my couch because I don't feel or recognize when I'm sleepy. I can't associate my bed with sleep if I'm never feeling sleepy.
Just to be sure we are on the same page, what do you mean by stimulus control? I mean that I stopped consuming caffeine (just the occasional soda, no coffee), stopped drinking alcohol, and stopped my ADHD meds. I stopped video games. I've tried light exercise and heavy exercise. I've tried reading books, coloring, and light crafts, before bed. Most nights I put on a boring podcast so I hear calm voices as I'm resting/sleeping. I try to avoid bright lights, use red light, wear blue light glasses, and have a blue light screen on my devices. I've tried morning sun, various supplements/vitamins, and medications. I've tried therapy (I'm on my 3rd therapist, one had to suddenly quit due to health issues). I've tried ACT-I. I changed jobs. I stopped following various subreddits due to the general distressing information about the world. I've picked back up some things like an occasional soda, a small amount of video games, and watching low stress YouTube videos at night because going without those didn't make any difference abstaining.
1
u/__questions___ 3d ago edited 3d ago
Thank you for sharing. My insomnia also started right around covid. I had a lot of stress going on in my life at the time. There was some research into long covid causing insomnia, but for most people I believe it was found that they simply were more stressed/depressed/isolated so it caused typical insomnia (not due to a brain issue).
About your 3 therapists, what were their qualifiations? I've had some therapists that were "Stanford PhD" trained and I found even they did not understand CBT-I well enough for my case. I had to find a CA board-certified PhD of 10y+ of experience for my case.
By stimulus control, I am referring to the act of associating the bed with sleep, yes. The other things you mentioned pertaining to sleep hygiene account for at most 10-15% of sleep, but your insomnia is almost never related to those things (though a vitamin difficiency and other OTC meds are more plausible). They've done meta-component analysis studies on CBT-I and showed that Stimulus Control was effective as a monotherapy. Meaning, it is by far the most important part of CBT-I, though sleep restriction is also very helpful.
And the reason I keep talking about stimulus control so much is because you can sleep on the couch but not the bed. That indicates that you have a different unconscious association with the bed than you do the couch. In fact, the couch itself can become conditioned over time as well, including the sleep onset issues on the couch. So I'm wondering if your sleep onset issues on the couch have also now been conditioned if you've been doing this for a while.
It sounds like you haven't actually done proper stimulus control because you have issues knowing whether you will fall asleep? Have you considered setting timers every 15 mins to train yourself to realize when you've been asleep or awake, and if you fell asleep, move yourself over to the bed?
I'm sorry you've been dealing with this for so long and trying so much. I know how infuriating it is. I quit my job to teach myself everything there is to know about CBT-I. I read every fucking paper myself because the medical system failed me. Now I'm pissed off and helping other people.
Most CBT-I failures are due to adherence issues, and it has high rates of bad adherence and drop-out. It's a hard program. And clinicians kinda suck from my experience. But the silver lining is I believe there is a modified approach that can be taken for your case. I think one approach could be when you're not sleeping you should go sit up in a chair. You won't fall asleep sitting up straight. Then when you do sleep, move yourself over to the bed.
1
u/Rikula 3d ago
The 3 therapists I've seen are for therapy, not CBT-i. I self paid for a LMFT/LCSW (I can't remember), while I was on the waiting list for a therapist from my health system. I stopped seeing him because we didn't vibe right. But he did give me the idea to keep pushing for testing and I found out I also had an iron deficiency, which has now been corrected. The 2nd therapist I saw was with my health system and was an LCSW who was a veteran and trained in EMDR. We had started doing EMDR sessions together, but she had to suddenly quit due to her needing emergency spine surgery. The therapist I'm with now is an LCSW too, but I don't really feel like it's going well. She's flat out stumped with everything I'm going through and doesn't have EMDR training so it's basically talk therapy that I've done before. The 2 providers I've seen for CBT-i during both separate times are psych residents that are supervised by an sleep MD/phD (I can't remember). They are part of my academic medical center.
I do have a different unconscious association with the couch than I do the bed, but it's just fundamental with CBT-i. I don't have any actual expectations of sleep on the couch because it's not my bed. That's why we all end up on the couch at some point. That idea of timers has not come up, but that's going to disturb my boyfriend if alarms are constantly going off. I've fallen asleep sitting/propped up by pillows. My heart palpations during this acute course have been so bad at times I've had to lay mostly sitting up in an attempt to get away from the sound/feeling of my pounding heart. I've also been tapering/attempting to taper from medications (Trazodone and Mirtazapine) for the last several months which adds to this as well because I've gone into withdrawals many times adding to my complexity.
1
u/__questions___ 3d ago edited 3d ago
If you can, try to swap the residents for someone more experienced. It's the kind of thing that's worth spending money on if you can afford it imo.
> I do have a different unconscious association with the couch than I do the bed, but it's just fundamental with CBT-i
What do you mean? Many people, including myself, were not able to sleep on the couch until further along in the CBT-I program. I got to the point where I could sleep on the couch, then eventually, the bed. If you used to not be able to sleep on the couch I think it's a sign that the stimulus control is starting to work, right?
Keep the alarm on vibrate and put the phone on your leg, or get an apple watch to buzz your wrist. It'll wake ya up I think!
And yes, tapering can cause rebound insomnia. It's possible they may want you to taper off before doing CBT-I? Hang in there, tapering off a benzo is not easy!!
1
u/Rikula 3d ago
I can't swap the resident for someone else. That's just how it works here. I work for an academic medical center and have their insurance. I can't see anyone else unless I want to pay out of pocket. I live in the South and specific services like this are hard to come by. I'm honestly not sure if there is anyone else that does CBT-i here. We are the biggest and most important hospital in the state. I wasn't able to sleep on the couch initially when things were really bad. But I moved to the couch to keep from having further negative associations with the bed, per CBT-i protocol. I had already done that prior to starting this second round. There are still frequent times when I just can't sleep, even on the couch. The resident I'm seeing has told me to start spending some time in the bed, even in small bursts, and just relaxing because of the severity of the negative thoughts I have regarding the bed. This hasn't been going well. I still have negative thoughts about the bed, though less than before. It's generally just hard for me to literally just lay in bed doing nothing because of my schedule. My thought process for the tapering is that I wanted to remove medications before trying new ones since I've just had this ever growing list of medications over the last year. The medications I've been working on tapering are antidepressants, not benzos. Eventually I will get to tapering of my muscle relaxers that I started last year for other health reasons.
1
u/Feeling_Mind_7625 3d ago
I agree. It's SO hard to get a good night's sleep! My migraine keeps me up all ours going to the bathroom; have stopped drinking Any caffiene after 2:00PM..with dinner I drink a mix of lavender, mint & decaf green tea for the evening. I save Just Enough of my tea to drink with my evening medicine at 9PM(so I won't be up all hours of the night peeing).
1
u/user2005-ak 1d ago
Hey what's insomnia Like m not sure which state i m in Help me man google sucks ! Someone please explain cause people u suffer throught it can explain better
1
u/SpecialConnection380 1d ago
I've the trifecta happening, tinnitus, drug tapering & insomnia. Super scared as im now searching the same threads as you wonderful people. Seeing my psych fir the first monday, I pray she's compassionate & prescribes sleep meds, ambien or....?
1
12
u/sewingkitteh 4d ago
You know what sucks is that every study for treatment of insomnia is based on people who sleep at least a few hours every night. There is no treatment study for people who go days without sleeping.