What impact has insomnia had on your life—on your work, relationships, family?

5_26.gif“…if you want to know how you’re going to feel in a decade’s time, you should stay awake all night and go into work. It simulates 10 years of ageing…”
Laura Barton and Charlie Brooker, “Pillows, Pills, and Potions,” Guardian Unlimited, UK, Guardian.Co, Feb. 5, 2008

Are the people in your life, family, workplace, supportive about this problem?
Experiences in the workplace?

Do you think it’s bad thoughts that keep you awake, or biochemistry?

Dreams: good dreams, bad dreams, dreams that seem to wake you up?
Do you think you have more dreams than people you know who sleep well?

Do insomniacs have access to in-between states that good sleepers miss?

What therapies would you like to see discussed or developed?
What questions would you like to see research address?
What insights or experiences with insomnia would you like the world to know about?

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  1. what impact has it NOT had.
    Insomnia has limited my life in devastating ways.

    It destroyed my ability to hold a full-time job, which I tried to do for years before I gave up.

    I am now in my 6th decade but my insomnia started EARLY…in grade school I had great difficulty getting to sleep and would usually wake up EXHAUSTED far before I needed to get up. I would be JUST going back into a deeper sleep when I’d be woken up for school. School was a blur.

    I got through a few years of college (where I could choose my hours better) but I had to give up my chosen career of journalism because the process of writing spun me into even more damaging insomnia and I was wacked out for days after class papers were due.

    It ruined my post-high school trip to Europe because travel with its demanding schedules and foreign beds left me ragged in the day time, and too tired for fun at night. I barely remember this most desired experience.

    It ruined my (romantic) relationships because I could not be counted upon and I could not keep up with the kind of vital people I was attracted to. I never felt understood in the area of chronic sleep deprivation that I struggled to slog through.

    It forced me to file for disability, eventually actually winning it when I was 55.

    It is a great challenge to hold onto self-esteem and I avoid meeting new people because I dread the eventual questions about my life. I lost friends when I went on SSDI, and I know I raise eyebrows when I disclose my disability status to them. I get “that look”, and I know they’re about to recommend a hot bath and melatonin.

    I believe my insomnia is totally genetic. Except for ONE sibling (the only one to hold a long-term, full-time job) my entire family has sleep issues, but mine are the worst. Now, I am aware that my college student daughter has it as severely as myself and I honestly feel I should not have reproduced. I can only pray that (for HER sake) the world begins to take this condition seriously and that there may be meaningful solutioins in the near future.

  2. I relate very much to the above comments. I feel insomnia affects all parts of our lives, whether we realize it or not. I have to take prescription meds (usually Lunesta or Ambien) during the work week, because I cannot do my job, period, if I don’t sleep. Not to mention, I face a lengthy commute in the car each day. Trying to drive to and from work after zero sleep is truly hell on earth. What makes me mad is when everyone tells me to just relax, leave problems at work, exercise more, eat more leafy greens, read a book and take a bath before bedtime…I have done all I know to do, and have read to do. And I’m so TIRED of it all. My friends, family, co-workers and my boss do NOT understand what I deal with. I shouldn’t have to suffer. I am so thankful to Gayle and her book. I hope the medical community will pay more attention to insomnia. It ruins our lives.

  3. Ashleylg and Marginal1, I completely understand. There is almost a shame factor involved, as if we wanted to, we could do something about it. Why can’t we just put our heads on the pillow like everyone else and sleep? And it’s so boring to talk about. Ashleyjg, I don’t know if we should have to suffer or not, anymore than if anyone else with another disease should have to suffer. The fact is that we do and we finally have a forum where we can help each other or at least share our thoughts with each other. I guess unless you’ve walked in someone else’s shoes, it is impossible to understand, or in our case, unless you haven’t slept in our bed it’s impossible to understand. (-:
    I’m also curious. Are there any men that are on this blog?

  4. Yes, you are so right, there is a shame factor. I feel such a nuisance. I avoid appointments early in the day. Since coming to Australia from the UK in 1981, I no longer worked full-time and retired early aged 55. I avoided promotion, the responsibility involved just seemed too tiring. I am so fortunate that I have a supportive husband, but the poor man musn’t move in bed, let alone snore. We have two single matresses, two separate dunas on a kingsized base and the noise of the dunas rustling wakes me up. We have had doubled glazed bedroom windows fitted to cut down noise (not usual in Australia) and we live on a really quiet street. I can’t look forward to a holiday as sleeping in a strange bed is dreadful.
    As a child I didn’t sleep well, it has been a worsening life-long problem. My mother doesn’t sleep well and nor does one of my daughters. My mother taught me how to play boring word games as child (she does, still aged 89) which I suppose is a bit of intuitive CBT. However as a cure for insomnia, CBT? forget it! I visualise the alphabet in Braille when awake in the night. I am not blind, but learnt to sight read Braille as part of a Special Education degree. If I lose the alphabet, I start from “A” again, while waiting for part 2 of my medication to work. Oddly, I take diazepam which isn’t really a sleep medication, but it hasn’t become addictive. I take 2.5mg diazepam and 10 mg melatonin at bedtime and 2.5mg diazepam when awake in the night. I think this medication is psychologically addictive though. I find temazepam keeps me awake (I feel unwell), I get rebound insomnia from restavit (an antihistamine) and zolpidem (called Stilnox in Australia). Anti depressants do nothing but make me hungry. However, my sleep is still fragile on my medication, but it does a little something and isn’t dangerous it seems… I believe I have got wacky brain chemicals, neurotransmitters, reticular activating system, and I am slightly better on ordinary HRT than Bioidentical HRT (which isn’t bioidentical). I think I’ve said enough as you are right Linda, it’s boring to talk about, but thank you all for being here. I’m new to this site (still reading Gayle’s book, I could hug her).

  5. Re Research questions:
    1. Is there a correlation between intelligence and insomnia?
    2. Are poor hypnotic subjects more prone to insomnia (ie, find even stage one of the trance levels hard to access)?
    3. Are people whose primary mode of processing information being auditory-digital (as opposed to visual, kinaesthetic, or auditory) more prone to insomnia? (This would be relevant to the “whirring” thoughts).
    4. What genes are involved and can they be fixed if damaged, missing, duplicated etc to the benefit of future generations. (Now that’s a bit hopeful!)

    Of course having answers any of these questions doesn’t strike me as being helpful in getting enough sleep, except for #4….

  6. Thanks for starting this blog!! I have felt shamed most of my life because of the devastating impact that insomnia has had on me, ever since childhood. I am such a light sleeper that the sound of my “wave machine” shutting off after a couple hours can wake me. I, too, have had all those well-meaning comments from friends who don’t get it, and even from doctors! I worked with my primary doctor for 3 years, had to go through all the so-called sleep hygiene rituals (and endure at least two long-term insomnia bouts that caused mild hallucinations because of their duration) before she was convinced, and then tried several meds, none of which helped (or they helped but were tranquilizers with heavy morning-after effects) before zolipidem was invented and it saved my life (literally, I believe).I remember the first night I took it, and dropped off to sleep within five minutes — I was actually frightened when I woke the next morning: I didn’t know what had happened to me! I had never fallen to sleep when my head hit the pillow before, that I recalled. It was a revelation that other people did this every night!
    Thanks to a sleep clinic assessment, I was “allowed” to continue zolipidem longterm, as needed. Now, due to changing doctors, I am terrified that I will have to go through the whole thing all over again, in order to keep taking my medicine – and this time I can’t afford all those tests! What I don’t understand is that it’s all over the news now about how essential a good night’s sleep is, and yet when you try to talk to a doctor about sleep medicine, they act like you’re trying to get Oxycontin! The beauty of zolipidem is that it doesn’t have any effect on me other than helping me drop off and stay asleep. When I compare the risks of the hypnotics on the market to the impact of insomnia on my digestion, my memory, my focus, my mood, my coordination — there’s no comparison. I’m glad I found a group of people whom I can talk to about this… it’s just so hard for most people to understand.

  7. Im a 39 year old male and had insomnia since childhood. My insomnia has deeply affected every area of life i can think of. Just trying to hold down a job is hard for me. I usually work in the afternoon, because it”s too hard in the mornings. I can also monitor my sleep better that way to. I can remember back in grade school and high school knowing this problem i have deal with. It seems Im watching others live there lives and im stuck. On average I get between 0 and 5 hours a day, which is garbage. Dont let the doctors tell you your just a light sleeper because they dont understand. I use coffee and ocasional alcohol (beer and not much) to help me get by. As far as prescriptions I gave up because Its temporary help. Every time I look in the mirror I see years of sleep derivation on my face. For some reason I look young for my age Im guessing its because I dont sleep(theory). As far as social life and any romance its all affected. I think it might be harder for the males then the ladies. Anyways, Im very happy I found this sight. I hope more people who live are nightmare add to this sight.

  8. I am plagued by nightly hallucinations that are very stressful, emotionally painful, etc. They wake me after maybe an hour of sleep or very early morning and there is no “escape” except to get up. Racing heart and other symptoms drive me to alcohol to get some relief. What has been the experience of others? Help, please.

  9. My husband and I have not slept in the same bed–or even the same bedroom–for more than 10 years. I’m likely to want to read for several hours before getting to sleep, or not be able to get to sleep at all, or have to get up to have a snack or watch TV or surf the Net just to vary the routine. Sometimes I read, try to sleep, read again, turning the light on and off all night. No husband could sleep under those circumstances! Luckily, my husband is very understanding and has found our cat to be a great bedmate.

    As an insomniac getting up for work used to be a nightmare, and every job seemed to require absolute punctuality. (Even now that I don’t work anymore, if I have to set the alarm for something, I always wake up hours earlier than needed because I’m afraid I will oversleep.) Many times I would not sleep at all for two whole nights, then sleep fairly well the third night.

    I remember begging my doctor to give me a prescription for some sleeping medication which he or she rarely would. We moved around quite a bit so I never had the same doctor for very long. I think that is a big problem for an insomniac–or anyone who needs medical help. It’s important to establish a long-lasting relationship with a good doctor. I wish I could find one right now because I’m bound to have more health issues as I move into old age.

  10. I am so glad I found the website. This is the first time ever that I have heard other people talk about having insomnia & the effects it has on them.
    I have suffered from this for many years. I feel tired all day at work, have chronic anxiety, have difficulty concentrating, I worry worry worry about everything. When at work I think to myself I just can not wait to get home so I can go to sleep. I get home & the feeling of being tired is gone, I am wide awake. I don’t feel tired again until 1:00AM, I then drift off to sleep. Wake up 2:00AM, fall back asleep around 4:00AM, wake up again at 5:30AM fall back asleep, wake up again at 6:30AM, then my alarm goes off at 7:00AM to alert me to get out of bed & get ready to work. This occurs every night. The 5:30AM wake up is really scarey, because when I wake up at this time I am full of anxiety, dread & fear my emotions are really out of wack, I know I am awake but I am feeling all kinds of dread & fear things during the day I worry about are really at an insane panic level, I am scared to death, scared to face another day, my emotions are tortured. I have to remind myself this will pass your just probubly having some sort of a dream hangover. I just wonder if anyone else has this happen to them upon awakening. Anyway I have tried every sleeping pill on the market. They only help a little bit, but the next day at work my productivity is bad & I can not concentrate at all. The not sleeping at night causes low productivity & concentration problems at work, but the medications “forget it” I am unable to work at all. They leave me in a state of confusion. Lunesta helped me sleep, but the next day it caused extreme sadness & all I wanted to to was cry. I could not even figure out why I was so sad, it was not like depression the emotions were like if someone I loved had died. I really felt wierd when I took Lunesta.
    Anyway after reading what I have just typed here today & thought I sound like a crazy person so I almost deleted it. But then I thought no, this is the first time I have ever shared this information with anyone because it is embarrassing to me. So I am going to take a leap of faith & submit my comment, hoping that someone out there may have had similar experiences as mine & comment about them. This would indeed help me to feel as though I am not alone & not a crazy person.

  11. Oh and by the way the clock at the top of the page, the one with the black background & red digital time on it! That scared the you know what out of me. I was like I know what that feels like to look at that on & off all night!
    It is truly a nightime boogyman!

  12. Another male. Early 50s. I have posted elsewhere on sleepstarved.org, so I’ll skip the details. Best wishes to all of us who need better sleep.

  13. To put it lightly, my inability to sleep properly is wrecking just about everything. How does one live well if one does not sleep well? I had a thought a couple of days ago. There is a “natural energy” that most people have. They wake up, go about their days, deal with things, have some fun, etc. People who don’t sleep well do not have enough natural energy to function well every day. I think this natural energy comes from deep restorative sleep. Sleep well, re-energize, live well. Sleep poorly, not enough re-energizing, live poorly. Well, that is bad. Hang in there, everyone.

  14. In canada there is a major shortage of family doctors. I don’t have one. All my life I’m been bouncing from clinic to clinic, with no continuity of care, being given the same, tired “anxiety check-list” everywhere I go, being treated like a junkie for asking for sleep meds, even being told not to return for them. One time only “just to get you over this hump.” Now I’ve learned the right things to say to doctrs to get the pills that will help me keep my life from slipping away….”This project at work has been stressing me out, I feel it’s keeping me awake” then they will charitably prescribe the medication that will (usually) help me, but with no refills. It also helps to dress professionally….I’ve learned to lie and say I’m depressed, when I’m not…how pleased it makes the doctors to be given such an easy diagnosis. I dread finding yet another doctor who hasn’t seen me before. I’ve been to sooo many specialists, clinics, sleep-labs, therapists I’ve lost track. My last sleeping pills were given to me by a friend who was prescribed them after going through a medical procedure. The time before that, another friend. But I’m not addicted to pills. I’m addicted to the desire to live my life. And that is impossible without sleep.

  15. This is a great website, and it’s nice to see a supportive community. No one, even if they’re sympathetic, can really understand what this is like who hasn’t lived with it. I sometimes compare it to having an chronic illness, like an autoimmune disorder, but one that people blame *you* for having and see as your fault.
    I have been pretty badly insomniac for 10 years straight. Although I can trace an anxiety-producing set of life changes that seemed to really ‘set this off’, I have gone through many changes since and been unable to shake it. (Also, I had very problematic sleep issues intermittently through high school and college – insomnia is a huge part of why I dropped out of college at age 20; returning to college at age 26 – along with a move – re-set off the insomnia.)
    Mine is also probably partially related to mood issues. I have high hopes for CBT (years of other types of therapy have not helped). I’m in a vicious cycle in which I have suffered from depression and anxiety (currently am chugging along half-functionally as a ‘dysthymic’) for years, and the insomnia greatly exacerbates it. It feels to me lately like the insomnia is 75% responsible for my current mood issues.
    Anyway, I use a white noise machine at night, wear a pretty serious sleep mask, and wear earplugs and I still wake up each night after 4, 5, or 6 hours tops. This after lying awake, often for hours, unable to fall asleep even when exhausted. (I guess 4, 5, and 6 hours straight is a luxury compared to a lot of folks on this forum.) I don’t drink caffeine after noon, usually much earlier, and I hardly drink alcohol anymore. I am now exercising regularly. I need to take Zolpidem / Ambien to fall asleep, and to fall *back* asleep after waking up in the middle of the night / early morning. I hope to god it doesn’t get physically addictive; I chop the pills (12.5 Ambien CR – the “CR” doesn’t work for me, I still wake up after 6 hours tops) and take an eighth to a quarter pill depending on the time of night.
    I have just started using a light box in the hopes of re-setting any circadian rhythms that might be off, and improving mood if possible. I can’t tell if it’s working yet. I tried Prozac several months ago in a bid to improve my mood and by this improve sleep, but it made my heart race. I don’t want to try another SSRI but am facing near-inevitability of having to try something else. (I hate medication. I absolutely don’t want to have to try another of these dubious meds.)
    I 100% attest to the incredible problems insomnia causes (or makes 100,000 times worse) in one’s professional and social life. I go to work absolutely exhausted, miserable, and *completely* unmotivated. I drag myself through my day, having to force myself through every boring task. I have no extra energy to try improve processes or suggest other worthwhile innovations to workflow process (my resume is drab). I make tons of mistakes, small and big. I’ve taken to triple, quadruple, and even quintuple-checking everything I do – every email I write, every appointment I set up, etc, to make sure I haven’t messed it up. My supervisor thinks I’m an idiot and frequently double-checks my work since I am prone to f*** it up due to my horrible condition. I feel lucky I have even been able to hold a full-time job, and sometimes wonder just when I’m going to get fired. I can’t do much more than hold a full-time job. I can’t take classes, learn new skills effectively, and get ahead in life. I am stuck in a stagnant rut, going nowhere. This doesn’t contribute to my mood and self-esteem issues. It’s a vicious spiral.
    Also, I find it really difficult to maintain a social life; coordinating even simple events with friends is just beyond me in a sleep deprived state. I frequently feel lonely, having been unable to plan events for the weekend during the week. It’s just an awful way of living. It isn’t living.
    I guess my next step is to start taking my sleeping pill at 9 PM – and when I wake up at 2 or 3 AM, I’ll just take more to try to get something close to the 8 I need. I will start CBT, and I am going to start attending meditation sessions at a local Buddhist meditation center. Hopefully all this, plus maybe another SSRI, will help some. I just don’t know what I’ll do if this keeps on this way from another 6 months, year, two years, 10 years.

  16. It is great to come across this site (via Gayle Greene’s book) however, I have to admit I was hoping, as I always do upon finding a new resource, for the silver bullet. Insomnia has destroyed my career. My last full-time job I was staring at my computer screen for hours without remembering or doing anything, I have cooked dinner twice on occasion. I have few friends left. My medacine cabinet looks like a small Walgreens. (I admire those who try to get by without meds, however, at times I will do anything for a few hours sleep.) I used Klonapin for years but it stopped working and amplified my memory problems at high doses (>3mg). Right now, Seraquel is my best bet. I have been through two rounds of sleep clinics and more psychiatrists than I can count.

    My mother has Narcolepsy. I am certain I do not, however, I have often wondered if there is a related affliction as yet undiagnosed? If you have a similar family history I’d love to hear from you.

  17. I would write a nice long page as others have done, but I’m really tired. It’s 3.55am. I’m exhausted, but can’t sleep. I can sleep a bit during the day tomorrow though, because I don’t have a job. I haven’t had a job for 6 months now.
    I had a really good job. I quit because I knew I was making too many mistakes, and got to work late far too often. I was raised to value hard work, reliability, and above all, my brain. I quit out of shame, really. I feel i don’t encompass any of those things because of insomnia.

    What else? I’ve just turned 30. I’m a woman. My partner is wonderful, stroking my hair and my back to try to help me fall asleep. After ten minutes he falls asleep, and i’m left to lie there wide awake and exhausted, for 6 more lonely hours, until the day begins. Then i stumble vacantly through, taking naps that leave me feeling as though I’m all drugged up.

    I’ll meet with a friend tomorrow, and try not to complain. I’ll play Lumosity, my ‘brain gym’ and i’ll try to go for a swim. I’m going to try half a Restavit tablet tomorrow night, around 8pm. So far, taking even one pill has knocked me out for 24 hours. I’ll post any updates.

    It’s now 4.25am. Thank god this wasn’t a work task. 30 minutes to write 3 paragraphs? This is insomnia…

  18. Spot on with this write-up, I absolutely believe this amazing site
    needs a great deal more attention. I’ll probably be back again to see
    more, thanks for the information!

  19. I have been an insomniac since I was in my 40’s. I am now 86!!!!
    No one mentions the affect of chronic on children. I was always so tired from not sleeping that many times, I was probably depressed and moody. I would lock myself in my bedroom and not have the energy to move. At the time, I didn’t realize the effect this was having on my children.
    It did not make for good relationships with my husband, either. It is very hard to smile and be happy when you are operating on zero sleep or on one or two hours and have so much you need to do.
    I am so sorry when I think back and realize that I was often not there for my children or for my wonderful husand because of insomnia. I took care of all of their needs and kept a clean house and always had meals for them but I spent a lot of time locked in my room – angry at myself for not sleeping.
    It is difficult to acknowledge this and to realize this now.

  20. Hi, I am 29 years old and have been suffering from chronic insomnia for a good 6 years now. I am an attorney and I am barely able to read and analyze my work load now, much less in the future as I become more experienced and more responsibility is given to me. Insomnia has affected my social life as well, but I’m not nearly as disturbed by that as I am by my career. I’d really like some advice as I’m torturing myself for not being at my best and moving up in my career, when in reality, I have a condition that prevents me from doing so. How should I cope and deal with this handicap. I am thinking of working in retail or something less cognitively demanding than my current job. I feel like it will help me to not feel like a failure so much. (Not that there is anything wrong with retail, I worked in that field for a year in the past and really enjoyed it.) I’d appreciate any advice – and just for the record, I too, have tried everything possible to remedy insomnia. I’m not in tears much anymore because I’m so used to living like a drone, but today is the third day with no sleep and I am pretty emotional.

  21. Wow, I just found this forum and I am crying. Y’all are my people. YOU GET IT. To the lady who is 86 years old and feels guilty about how this affected her children. Please don’t. It’s not your fault. I often think that I should not have children because I don’t think I could be a good mother, though, and that makes me really sad. It makes you seem selfish, insomnia because everyone around you is contributing, working harder than you, and you just appear to be luxuriating. But really, you’re miserable. My free time is eaten up by trying to sleep. I feel so ashamed about it, too, that I don’t mention it if I can help it, and I pretend I’m ok (which is exhausting in itself), or I say I have a migraine, because that is a more accepted excuse. Why are migraines ok but not insomnia? I guess it’s because a lot of people “can’t sleep” every once in a while, and they suffer through it and get over it and return to their productive selves. But they don’t know what it’s like to have not had a good night’s sleep since Christmas Eve 2014. That’s the last time I remember sleeping well, and I don’t remember the time before that. I wish I could tell that to people but then it’s like they look at you like you’re some kind of freak, as if you’d just told them you have hands for feet or something. And then they inevitably tell you how well they sleep. And a shout out to Emma, who doesn’t have a doctor and is made to feel like a junkie, I feel you girl. The thing that seems to help me most is ativan, and many doctors won’t prescribe it (I also don’t have a doctor). So I have to explain to them that I don’t take it every night, it’s just to reset my sleep every few nights so I don’t spin out of control. But the way I have to explain it and the way they reluctantly give me one prescription – no refills – makes me feel like I’m making up some story to get a fix. I know I’ll suffer with this for the rest of my life, so I have to find a way to adapt to it. It didn’t bother me so much for years because I worked in a bar and so I could sleep as late as I needed to every day, and I had very few responsibilities. I showed up, worked a shift, punched out. No stress. Unfortunately, a few years in the service industry will make you hate it. Plus, I felt unfulfilled. Like my life had no purpose except to get people drunk. But now I own a business and have a lot of responsibilities and I feel like I’m failing, and that my business partners are starting to see through my facade. And now I’m faced with having to tell them that I have this condition, but they won’t understand, and their main takeaway will be that I can’t do a job like a normal person. They don’t know what it’s like to spend a third of your life lying down, watching the hours go by, and then the other two thirds struggling to keep your life together, trying to just APPEAR normal. God, I just rambled on, and I’m not sure all of this even makes sense (insomnia. Did I mention I’m a writer? Yeah, a great one. It sometimes will take me all afternoon to string a sentence together), but YOU GUYS GET IT. THANK YOU.

  22. Everything im about to say is something that im sure has been said before on this website. Insomnia has haunted me like a plague for 10 years. Im 24 now, but ive already become comfortable with the thought of being dead. Ever since i became old enough to have personal freedom i became extremely self destructive ie. Injecting heroin, drinking entire bottles of liquor as soon as i get out of bed, spending more money than i have to blow on drugs/prostitutes, getting behind the wheel while beligerantly drunk. Insomnia has ruined all of my relationships with women. I have no hope of being in love again, though strangely this doesnt seem to bother me. My guilt is too heavy to commit suicide, it burdens me that my family cares about me as much as they do, because they shouldnt. Im a screw up. Not looking for advice any more. You name it ive tried it. Sayonara.

  23. My insomnia is linked to a condition called nocturia, which is waking up at night to urinate. On the good nights it’s three times, on the bad ones it’s seven or eight. Sometimes I can get back to sleep, often I can’t. I can generally patch between 5 and 7 hours of sleep, but it’s poor quality and I often wake up mid-dream. My work week, I operate like a zombie. I’m a freelance web designer and work on client’ site, I get by but don’t get much repeat business. My work is subpar and I am not very friendly due to feeling so tired. Functional on the best of days, my social circle gets ever smaller. I snap at people, angry is my default mode and I have zero energy. I’m 43, single, no kids and I can’t imagine a nice future for myself…

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