Idiopathic Insomnia

Idiopathic insomnia is a form of chronic insomnia that is not identified by visible signs of its cause. It is theorized as being the result of an under-active sleep system, or overactive awakening system, but no verifiable true origin or cause of the disorder is known.

Characteristics of Idiopathic Insomnia

It is known that idiopathic insomnia exists without the detectable presence of other sleep disorders, medical problems, medication or substance use or abuse, any underlying behavioral problems that could cause poor or unfulfilling sleep, and any psychiatric disorders. It is also not the result of poor sleep hygiene. Idiopathic insomnia often occurs nightly, and may include short sleeping times, numerous nighttime awakenings that cannot be explained, and difficulty falling asleep even when the body feels sufficiently tired to do so. This all happens without the presence of any stress that may cause a similar scenario in others, no psychological or neurological disorders, and no medication or substance use.

How Idiopathic Insomnia Presents

As the disorder starts, most people suffering idiopathic insomnia will have adjusted to it, and few show signs that the disorder is having a severe detrimental effect on their lives. They often do not develop any medical or social problems as a result of the disorder.

In some cases, people with this disorder will try to correct the problem on their own without success, and may oftentimes make it worse or develop other sleeping disorders as a result. This includes consumption of medications or alcohol to help with sleep, or developing other poor sleep hygiene habits.

Insomnia is a common sleep disorder, with a wide variety of causes, and affects as many as 40% of adults in any given year. Idiopathic insomnia is one of the rarest forms of insomnia though, affecting under 1% of the population. It does not seem to have hereditary link, and no genetic link to the disorder is known. Females and males are at an equal risk of having this disorder.

Diagnosing and Treating Idiopathic Insomnia

You should see a doctor or sleep specialist if suffering with insomnia. You will be asked for your medical and sleep history to rule out the possibility that it is in fact another sleep disorder or medical condition that is causing your problems. A diagnosis of idiopathic insomnia may take a long time to come to, as the causes of insomnia are vast, and conclusively ruling out each possible cause can take a large amount of time. You may have to take the polysomnogram test more than once before a doctor or sleep specialist is ready to diagnose you as having idiopathic insomnia.

Treatment of idiopathic insomnia is similar to other forms of insomnia, though the treatment will only help lessen the sleeping problems, where it may ultimately eliminate it in others suffering only acute insomnia.

Sleep hygiene is important for dealing with any sleeping related disorder, and that is no different for idiopathic insomnia. Conditioning the mind to prepare for bed at consistent times, and having a sleeping environment that is ideally suited to comfortable, uninterrupted sleep are the main components of this philosophy for those with idiopathic insomnia. Relaxation techniques that inhibit quick transition into sleep after getting into bed are also wise. Though short sleep times may still result, you are likely to fall asleep faster and have a higher quality of deep sleep with proper implementation of some of these options.

Sleeping pills, or sleep aids like melatonin, may be prescribed if the insomnia is causing excessive daytime sleepiness, and/or other symptoms related to insomnia that could be having a poor effect on a person’s social and professional life. It has been shown that taking these methods in people with idiopathic insomnia may cause numerous side effects though, so this should be discussed with a doctor and taken liberally to start.


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78 thoughts on “Idiopathic Insomnia

  1. Miles Stacey Reply

    I have literally just discovered this site today, now I know I have Idiopathic insomnia. I didn’t realise there are other people in the same boat as me, in that it would appear I have insomnia for the rest of my life and I will never be free from it. I have suffered my entire life and I am now 57. I have tried everything including alcohol, cannabis, Nytol and Zopiclone, but all of these only work for a short amount of time before I build up a tolerance and they stop working. So I will go a few days of taking nothing and not sleeping then take either half a Zopiclone or a Nytol, I will then get a reasonable night’s sleep, but so as not to build up a tolerance I will then not take anything again for a few nights, but I won’t sleep well and feel exhausted, but in order to have an effective sleeping aid, I try not to become addicted or tolerant. Life is miserable and I live in hope that one day there will be a medication that truly works.

  2. Lars from norway Reply

    had this terrible condition for over half my life now (im 39) , no trouble falling asleep, but awake constantly during the night, no deep sleep, feel like trash when i wake up, nothing helps, no one has an answer or cure.

  3. Michele Reply

    Hello! I’m adding my name to the list, having just discovered that this might describe me. I’m in the category of getting 8+ hours of sleep, but waking up about once an hour, and feeling like I’ve gotten no sleep at all. My mom reports that I’ve had trouble staying asleep since birth, but it’s always been manageable until a few years ago when it escalated (around age 35).

    I’ve tried Trazadone and Remeron, which have both been mildly effective, meaning I get enough sleep now to at least be functional during the day, but I’m still not completely sleeping through the night. I’m about to start on Seroquel to see what happens. Does anyone have experience with using low doses of antipsychotics, particularly for long term use?

    • Zah Reply

      Hi Im from the Philippines if your reading this I hope your ok. because of sleep deprivation I experienced back pain I try to survive everyday

  4. Rosanne Lin Reply

    Me too. Now that I’m older and single I don’t want a permanent relationship because my insomnia always causes trouble with my partner. I also suffered many dangerous pill addiction problems when I was younger due to over prescribed medication. Now I’m retired so I just deal with the problem day to day although it takes a toll.

  5. Stephanie Reply

    I am 39 and an remember back to when I was a little girl, maybe 4, and have just never slept. It’s so hard, every night I lie in bed in the dark for hours and when I do fall asleep it’s such a shallow sleep and I wake up throughout the night every night. I can never get comfortable either. I’ve had in clinic sleep studies and they have found nothing medically wrong. The weird thing is that since it’s been this way my whole life my body must be use to it, the doctor said I somehow am a high functioning individual on little to no sleep, my energy levels aren’t somehow affected. However every night at bedtime it is a sad time because I know it will take hours to fall asleep to only sleep for an hour or two between wake ups. It’s interesting to know other people deal with this because I have never met anyone who truly understands. My husband can fall asleep within minutes of going to bed ( so jealous 🙂

    • Anonymous Reply

      This is me as well. I’ve tried everything without any success.

  6. Danielle Reply

    I have this as well. I’m 22 years old and I’ve had insomnia for literally as long as I could remember. I sleep an average of 2 or 3 hours a night with many breaks in between, but have been known to get no sleep for several days on end(unwillingly). I’ve tried every medicine over the counter and dr prescribed. By the end of my prescription trial, my dr had quadrupled the dose to no avail. Honestly when I go through a bad bout where I haven’t slept in days, I just have to keep moving until I tire myself out so much that I just sort of pass out someone in my house. I’m mostly used to it by now though. Plus I love the quiet hours of the night!

  7. Cahaya Reply

    Greeting from Indonesia, I feel so blessed to find this. I’m turning 34 this year, desperately seeking any information about the situation I have. I’ve read all of your stories, and I can relate to all of them except the part of having a kids (just yet). Finding out that I’m not the only one is a such blessing, Because I think I started to going crazy and no one’s resonates with it, no one will understand. According to my mom’s told me about I have this situation since I was a newborn-baby. She can’t do anything Everytime I told her that I still have this. And apparently I got it from my Dad. You’re all know that we absolutely tried all of the methods to helps us sleep.
    Once again, I’m so grateful to find this information that I’m not the only one Many thanks ASA and all of the stories from the comments section.

  8. Trent Reply

    Hiii ! It’s nice to know others are like me! I had this disorder since the age of 3. I have Adhd.

    The only answer I ever got from a doctor that my brain stem did not fully developed but doctors really can’t diagnosed my disorder. So I decided to do my own research. This disorder fits the best for me.

    I take Quetiapine Fumarate 150 MG Tab. But that’s starting to become less effective the last 9 months. I’m only 23 years old.

    • Cate Reply

      Hi Pam, Alprazolam is a benzodiazepine. I’ve been on every benzo under the sun to get me to sleep. I completely lost the ability to get into N3 sleep. I have since learnt that a side effect of benzos can be the loss of that sleep stage. They also caused me increased anxiety over time. Benzos were never meant for long term use. Your Dr probably knows this and why he wants you off them? I take zolpidem instead if that’s any help. It works for me the same as the benzos. We are more or less the same age. I also have never been able to nap, nor sleep more than 4 hours a night. It’s excruciating. Being fit and healthy is important to me and so I look after my health but I don’t heal. It’s because I don’t go into that healing stage (N3) of sleep. Blame it on the benzos? I would love to hear from anyone else who has this documented. Unless we are many, research wont be done in this area.

      • Anonymous Reply

        Can u please all hang out w me when we cant sleep. 5 yrs old to 36 years old I have been in sleep Hell,no sleep,sleep filled with horrible nightmares due to meds/idk what and no help and it wouldnt be that big a deal bc I can still function but I’m so grumpy I hate myself. I love u guys.

  9. Pam Jacobsen Reply

    So glad to read that others experience the same sleep disorder..I have had it since I was a child and now I am 63 and the only thing that helped was alprazolam at bedtime,but I have a new doctor that says I can’t take the meds anymore..don’t know what I am going to do now..sleep is so important for your heath and well being..I have tried every other thing that is natural and none of that works because I do believe it is a disease you are born with and most doctors don’t understand..I am so jealous of those that can even take naps..I have never been able to take one in my entire life..

    • John Keeenan Reply

      Based on reading these replys I have come to the conclusion there are at least 2 forms of idiopathic insomnia. The one most referred to here is the kind that prevents people from sleeping. The other kind is people who sleep … sometimes 8 + hours per night … and wake up totally un-refreshed and exhausted. The latter group is less well represented in this forum but there are more than 1.2 million of us in the US alone and more that double that across the world.

      I’ve had both at different times in my life. When in my 20’s – 30’s, it was problems getting sleep that caused a couple of depressive incidents. Nothing worked. Didn’t try mj. Psychotherapy and valium made a difference and the problem was manageable for about 20 years. Then I lost what I call my ‘sleep trigger.” Whatever it is that lets your mind turn off and allows sleep to take over. Another major depressive event occured, worse this time. The psychiatrist prescribed Prozac and Trazadone for a sleep aid. The Trazadone has restored the sleep trigger and given me sleep for 25 years now. I get a good 8+ hours a night despite waking 2-3 times to use the bathroom. I go right back to sleep. Five years ago I had cancer and got it cleaned up with Chemo and Radiation. Ever since, the Trazadone continues to perform as the sleep trigger but I wake up every morning totally exhausted. I NEVER get a restful sleep. Not in 5 years! I’ve tried the sleep labs. No sleep apnia. No sympathy. No research being done. Tried CBD – No success.

      So there are a lot of us out there with sleep but no rest. Something is broken and it seems no one is looking into it.

  10. Lem Reply

    I’m 51 had insomnia since I was born I’ve struggled all my life dealing with it (EVERY DAY). I did DNA thing on 23andme health to see if it could say something on my sleep but didn’t get the info I needed just basic stuff. It did say I had different sleep pattern then the average person. I downloaded my RAW DATA from 23andme and uploaded it to Prometheus DNA and got more informative info I needed. Turns out I have the short sleeper gene rs121912617(C:C) There are 3 short sleeper genes with the same number but different letters. (GG)(GC)(CC). Two of these are good meaning they get by on less sleep but aren’t affected. I got the bad short sleep gene (CC)(meaning I require 8 hours of sleep) I get about 0-5 average struggled all my life. Ive never slept 8 nor 7 in my lifetime

    • Lem Reply

      sorry I meant to i have rs121912617 (G,G) 2 copies of the short sleeper gene . (CG)genotype means you have 1 . I have 2 copies the highest. So check your health DNA if you think you might have it

  11. Jeanne Reply

    At last I have found my tribe! My mother complained that I kept the babies in the hospital awake with my crying because I could not sleep. I stopped taking naps at 2 yrs old. I am tired of being looked at like I am crazy when I try to tell people, I don’t sleep. I am not worried about anything. I am simply awake. I use a variety of the solutions mentioned in other posts. Every night I take 1/2 of a Unisom, 1-2 Tylenol PM, smoke Indica and frequently add either 2.5 mg of Ativan or 15 or 30 mg of Temazepam to get some sleep. I meditate, exercise, eat healthily and no alcohol. I just turned 70 and it gets harder and harder to go through the day on a few hours sleep. I too have been to a sleep clinic, what a joke.
    The person who wrote about self soothing via bouncing their head and leg kicking may have a point. I do this little leg kick back and forth in bed, it is kind of comforting and helps calm me until my husband kicks me for shaking the bed.
    This is the first time I have come across idiopathic insomnia. I discovered this site when
    I Googled, “What helps life long insomnia”. Google shut itself down with that phrase. LOL!

    • Blaine Campbell Reply

      I suffer from Chronic Idopathic Insomnia it’s nice to find somewhere there’s others who understand what I am going through I do my exercises my meditation deep breathing and this is for me so fair warning because you can develop a very nasty addiction but I do use my medical marijuana indica vaporizer pen and flurazepam( Dalmane) as it used to be called and Butisol Sodium pen. I’m on the far end of the spectrum and definitely would be very careful mixing meditation especially when it’s a barbiturate and a benzodiazepine but with these supplements and medications I’m able to have a great life where as before I was constantly tired but never sleeping it takes more than one thing you need to change things on you’re life at least in my case and not relying only on medication or only on meditation or only this or that doesn’t work for me I need an integrated system of care and luckily for the past couple of years that’s what I’ve had my life has improved so much

    • Ananda Mañana Reply

      Wow. The leg rocking back and forth hearkens me back to when I was a child. It was the ONLY way I could get some sleep. I am in my forties now and the doctors are damned to find a cause or any effective solution. I have tried all the drugs. Some legal, some not. Neither work.
      Thank God I own my business, I would have been fired from everything else!
      Going in for sleep labs soon. This is a nightmare for sure. Days and days just laying wide awake.

  12. Kurst Reply

    I’m 34 but my mom still constantly talks about how I never slept even as a newborn. I haven found a single thing that works and I’m starting to have a lot more physical symptoms. I mostly just don’t feel well. I can’t gain weight and I’m always exhausted. I have a happy life though with kids and a great husband. I just wish I could feel more present and felt up for doing things.

    I have had so many medical tests to find the cause of all this, but it really all boils down to being alergic to sleep I guess!

    I recently got a Fitbit because I was curious if I could use the data to find any patterns over time. I’ve only had it about a week. The readings have actually been pretty accurate but I’m sure there’s some error. Still, maybe a trend will emerge? I got an average of 3.5 hour of sleep each night so far and I woke up over 20 times some of those nights.

    I could get away with not sleeping when I was younger but this is getting a little harder now! I see a new doctor in a couple weeks but I’ve already been to several. Still, I’m staying hopeful! Delirious, but hopeful all the same 🙂

    Anyway, I sort of rambled, but I’ve never met people who get this! I really do love the Internet for just this reason.

    • Larimal Reply


      So I also have the same condition and only found out when my doctor told me what it might me. Doctor prescribed me sleeping pills which help stay asleep but still makes it so hard to get out of bed. This week I tried a bed time tea and it works!! I have been able to fall asleep faster and when I wake up I have the energy to get out of bed. So just thought I’d share this 🙂

  13. Cate Reply

    Cate here again. ( I also appeared as annoymous for some reasoon on 26 Dec).
    Anyone taking Zolpidem? I take 10 – 20mg a night. I’ve tried every med under the sun. I do not, ever, fall asleep without them. I wake up 2-3 hours after I’ve taken them. Is there anyone who has stopped taking years of sleep meds and can sleep without them? I have of course tried many times but in real life it is impossible to function without sleep.

  14. Anonymous.2.0 Reply

    I never knew anyone had the same issues that I have! I have felt like so many others who have described their lives. I have had this since I was born, my parents told me I never slept as a baby. They thought I was at least sleeping a few hours/night.

    I agree, this is a disease. I struggled all through childhood. Struggle doesn’t even describe it. It is the inability to live an engaged life because of exhaustion. Think about it, if you are not sleeping you are susceptible to paranoia, anxiety, lack of focus etc. I struggled all through school, I got good grades, but was sick often because I was not sleeping. I think as a child/teenager people don’t take you seriously. I was on my own. At the age of 23 I finally found a great doctor. He could draw compounds from scratch and explain what it will do to your brain. He put me on Clonazepam with Trazadone to take at night. It’s the best sleep ever got. I still sometimes wake up and toss and turn but I am able to get back to sleep (unfortunately my sleeping still includes the vivid dreaming). I should note that I am now 34 and this med combination is what has worked best (after trying SO many other things because doctors don’t believe you and tell you it is something else…right).

    I was told recently by a Dr. (who is empathetic and actually understands the disorder), that idiopathic insomnia needs to be approached more like narcolepsy. This means taking medicine to sleep but also taking something during the day. I hope that this information helps. It is still chronic and I still have to practice a clean life of eating well, exercising, practicing good sleep hygiene etc. I just try to minimize the symptoms as much as possible. Some days are better than others. My advice is find a good doctor, one who understands the impact of the disorder on your life. It wrecks marriages, friendships, work etc. Force your doctors to work with you until you find something that helps. It’s their job.

    I was reading an article published by the University of Pennsylvania. Doctors and researches believe this is a rare disorder. I am not sure I agree. My dad has it, my grandfather had it. It is like any “unknown” disorder, unless you start talking about it no one knows it exists.

    I wish everyone the best.

  15. Jacqui Reply

    Wow! Didn’t know so many others suffered from this same problem! I’m not sure if I have idiopathic insomnia, since I’ve never done any studies or seen anyone about it, but I have had trouble sleeping ever since I can remember, and I’m now 30. My only current remedy is Marijuana, and although it doesn’t always help, it’s worked better than anything else I’ve tried so far. When I can’t sleep, I feel like I can’t turn my brain off, which seems common here. Same reason I can’t meditate either. People often comment on my high energy, although I usually feel the opposite, so maybe there’s something to the b12 theory, and I’m gonna look into that. I don’t really practice good sleep hygiene since it hasn’t made any difference in the past, never tried prescription drugs, workout regularly, and eat relatively healthily. Anyway, I highly recommend trying MJ to anyone who hasn’t, definitely not perfect, like I said, doesn’t always help and I still wake up early but it’s something. I actually feel lucky after reading all your stories since I usually get some sleep each night, and only have sleepless nights every once in awhile. Thank you all for sharing your experiences and if anyone else has further insights, it would be appreciated!

  16. Sherry Reply

    Ok…. I don’t have problems sleeping, I can sleep all the time anywhere. I have been through 2 sleep studies and both times I was falling asleep with in 5 minutes. I drank one of the 5 hour drinks, got in the SUV, (we were traveling, and I was not driving) and laid down in the back seat and went right to sleep. Yes I was diagnosis-ed with idopathic Insommia. Yes, no one believes you. I am tired all the time but try hard to keep pushing on. My ex husband didn’t believe me, and would get angry because I was so tired all the time….And he was the one that pushed the issue to go get it check out, but didn’t want to believe the results. I would be most productive between 10 pm and 2 am. I had no problem staying awake most of the night. Yes I did snore, and because I did, I went for my ex husband and had surgery on my noise, throat… Did it make him happy, NOPE!!!! So people can say what they want, its real, and I would not wish it on anyone. I don’t really know when it started, at what age, but I do think part is stress. I always felt I was walking on egg shells all my life. So now I’m 58 years old, I work fill time, and I sleep as long as I feel I need to. I am done walking on egg shells for anyone. I do take meds to keep me awake during the my waking hours. Do I like to, no!!! But in the end, we do what we can to survive. So to all these suffering with is DISEASE, know its real and your not alone. I have other genetic problems, and I wonder if they are not all linked. So to all that have this, wish you the best, and maybe someday there will be a cure.

    • candace Reply

      Hi sherry I’m Candace, I’ve been diagnosed as narcotic but may have idiopathic insomnia. I sleep 18 hours a day and I’m sooo tried no one understands! I’ve now been thru 2 sleep studies and several meds later, I’m on GHB( yes date rape drug) or markeded as Xyrem. I feel better so far! Ive been diagnosed with a 11 mm pineal gland cyst and believe that’s what’s causing this!

  17. Magnolia Lady Reply

    Hey everyone, I’ve just read the discussion on Idiopathic Insomnia. In my case since age 14 I started having light sleep. A fly passing by would wake me. I have gotten to the point of not sleeping at all, not a minute for 17 days. When I end up in the E.R., I got treated for a drug addict, but when all labs came back negative, they move to mental disorder. Regardless of me telling them, I have OSA, havent slept in 17 days, please help me sleep. They even tried to put me in a mental institution. I have developped Obstructive Sleep Apnea ( Im not overweight) so that’s not the cause. Between both they have taken a toll in my life. I have lost all interest for things in life, since it causes depression. I have memory loss, and difficulty to recall events. I lost my career as a physician. It’s incredible what these two can do to a human being. Unfortunately, there is nothing out there that can really help or cure us. Even though we now have a medical specialty in Sleep Medicine, yet far from discovering the cause(s) or a cure.
    I have only felt what a good night sleep and waking up rested the first time I took Ambien. Then one day at 3:30 pm, I fell asleep. Woke up totally rested. Like never before, looked at the time. It was 3:31 pm. In one minute of good sleep I rested.
    I know it’s not easy when we have children, those that still work with sleep deprivation and feeling non functional each day. In my case I over work my body on a daily basis, I take care of my front and back lawn, walk for one hour or more, read a lot, watch TV until 1:00 am at least, and avoid taking a nap or drinking anything with caffeine after 9:00 am. Due to sleep hygiene I get up at 6:00 am. I just drag my bones out of bed, may not wake up rested, but once I feel awake and I have a bit of energy to push me through out the day I can do things even though I end up dragging myself most of the days, but I accomplish my daily goals. I do meditate, listen to relaxation music and to music geared to empower your brain. Like Reiki music for the brain and to help your brain sleep. I pray and read the bible. The inner peace I get from it is also a plus for my conditions.May science soon fin a not only the cause of Idiopathic Insomnia, also the cure. In the mean time, God help us all with the conditions, and that risk our lives just by driving to the corner without being alert. Just the On or Automatic mode.
    Take care everyone, God bless all of us.

  18. Amanda Mack Reply

    I terrifying relate to everything on this website. The amount of invalidation that occurs with this disorder is astounding. The medical profession is absolutely useless with it. I don’t know how to live with it either. I am often suicidal. I was never depressed before I developed it, nothing particular triggered it, I don’t know what to do. There needs to be some kind of research group and some kind of targeted medication…something.

    • Anonymous Reply

      How are you doing? Perhaps WE are the research group. Anybody interested in compiling their insomnia history? Who will take us on though? I will ask around if it comes to that but I know as a single voice it’s hard to be heard.
      I’ve stayed over in sleep clinics and and it’s been discovered that I never go into any stage 3 / 4 sleep (deep sleep). Everybody’s deep sleep decreases with age but I was way too young to start the decline. I’ve been through ‘sleep’ school, years of monitoring and following strict sleep hygiene routines. The sleep Dr told me that 90% of insomnia cases are cured using all these techniques and guidelines. But he didn’t know what happens to the 10%. With all my research and questions I conclude that the 10% of us are ignored because we are the minority. I had to quit work and I can’t drive or make plans half the time because I can barely function and am cognitively impaired. One thing that did help initially with side effects of not sleeping was doing CBT and Mindful Meditation & Movement. There were many useful tools to learn.
      I’m happy to answer questions on any of this info I’ve shared.
      My wish for 2019 is to be able to sleep without prescription pills, and to be able to sleep for over 4 hours per night. I wish this for everyone who is suffering silently with this debilitating disease.

  19. Joel Skoog Reply

    Hey! I can fall asleep but i will rarely sleep more than 20-30mins per sleepcycle it feels like. So I’m in bed for 10 hours and just taking mini naps all night. Not much deep sleep and never really rested when waking up and had this for last 20 years atleast. Now I’m 30 and no remedy in sight.

    It feels like I am super concious of my environment and can hear everything and wakes up for the smallest sound. I had troubles falling asleep but now Im so used not to beeing able to stay asleep that I have techniques to relax anyways.

    Is there anyone that recognizes this? Maybe someone has any advice or even the name for this so I can research?

    Love and be well to you all! <3

  20. Ugly Ducky Reply

    I wasn’t diagnosed with idiopathic insomnia but it seems to exemplify my… condition. I had this terrible deficiency long prior Ambien which I actually desist using and I still am “up.” Quit coffee. Still am quietly wired. At five three and 110 lbs I thought to put on some inertia (weight) and…sleep. Trouble is I also have chronic but minor anorexia. My sister has severe insomnia and bulimirexia. Don’t affirm what my damn problem is. Ayurvedically I’m primarily a Vata type (ether/air); ungrounded, cold, dry, light which qualities and irritations I note many times accompany my inability to “fall”, stay asleep or my early am waking. Many times after an involuntary insomnia binge I ‘knock off’ for a clipped couple to few hours and come to scared, and progressively disoriented. I am a 49 year, yes, old, female. When I had PMS, for years, my being “up” was horrible, sometimes for up to 3 days- when Time was a factor that had dropped off and no longer valid. Maybe not overweight but average weight people sleep better, and I don’t understand how insomnia could trigger overeating as at least for me it triggers a host of massive problems contrary to appetite. Sleep is a privilege. Not getting it makes me deeply angry.

  21. Nina Franco Reply

    As far as I can remember in my crib, I would pound my head on my pillow for as long as it took to fall asleep. Growing up I could not lay still, had to move my feet back and forth or pound my head hoping I would tire out and maybe get a few hours of sleep. Went to a sleep clinic, psychologist, psychiatrist, and went to a hypnotherapist to no avail. Waited a few years then went back to a psychiatrist and she tried giving me Ambien, Lunesta, Seroquel no luck. Then she prescribed a low dose of Alprazolam and Trazodome and it really helped. Been on the same dosage for years. I get to sleep about four hours a night. Sometimes I can get short tempered, not sure if it is the effects of the medication, but I can sleep. I am 66 years old and did not sleep for much for forty years.

  22. Linda Reply

    Born with it. 59 Now and I have one child and two grandsons with it . I’m an RN so night shift was ok. My memory is getting bad now. I can go for days with no sleep. Life drama has compounded this so now all I can hope is that someone can figure out if it is genetic for my kids and grandkids who have no idea how horrible it is day after day…. when the daylight comes.

  23. Paulette Hood Reply

    My daughter was born with this horrible affliction. When she was about 6 weeks old I was referred to a neurologist who listened to my story that she only slept a couple of hours a week. After an exam he told us that she will sleep when she’s tired. I told him I was the one that was falling apart from lack of sleep. He had no advice. This improved a bit when she was 4-5, and she slept 5 or 6 hours a night. Then it came back full force when she started school. Now she’s in college and she just called me to tell me: she wants it all to stop because for the third year in a row, she is trying to take her classes without sleeping most nights. She said things will never get better and she’s been miserable long enough. After 3 hours on the phone I got her calmed down , but I’m at a total loss as to how to help her. As with some of you, people don’t believe her. Ambien didn’t work; she went thru whatever medications they had and none worked. Now they tell her there’s nothing they can do for her. Any positive advice out there?

    • Shoe Reply

      The only time my son really slept was when he was taking Depakote for his mood disorder. Even if your daughter doesn’t have a mood disorder, I wonder if this would help in an off-label way?

  24. Karen Scott Reply

    Interesting comments here. Very familiar. I remember, as a child, my mother would come into the room and say, “I know you are awake, go to sleep.” Even though I was laying quietly with eyes closed. Then it would take an hour to get to sleep. In my 20’s, it was up to 2 hours to get to sleep. Now it takes at least 3 hours. No matter what time I go to bed. I do all the good sleep habits things recommended. Have tried a number of meds that might work for a few days, then stop working. I am 59 years old, and work full time. Always tired, as everyone says. Wish there was a working treatment.

  25. Chris Herzig Reply

    I am astonished people are talking about this. I’ve never met anyone else that can understand or relate to me. Dealing with this is destroying me mentally and physically. It feels like punishment from God. I’ve delt with this since I was six years old. I watch the clock eevertnight hoping something changes. It seems when my mind and body are most exhausted I’ll get small bursts of adrenaline that will make me twitch. My heart rate and breathing can’t stay consistent. The worst thing is I feel like it’s completely out of my control. Now that I’m thirty and have to maintain some sense of consistency in my life so I’m not homeless I fear some sort of nervous breakdown. I want some of that stuff Michael Jackson died from…

  26. Wendy DiSalvo Reply

    I acquired idiopathic insomnia in 2006 when I was 26 years old. Doctors at that point and for a few years checked me out for all kinds of things-cardiovascular, endocrine, psychiatric etc. ans found jonother problems other than my lack of sleep which they didn’t believe I could sleep as little as I reported. For about 4-5 years they kept telling me my insomnia had to be related to something else, but they couldn’t find any other reason ans FINALLY diagnosed me with idiopathic insomnia despite their attempts to find other causes. That being said, I have tried all sorts of remedies, homeopathic, allopathic, alcohol, mixing all those remedies together, strict sleep hygiene, etc. NOTHING WORKS. It’s now been 11 years and the ONLY time I have slept normal is for the postpartum period after each baby…just the time I am breastfeeding. With this last (4th child) she just weaned herself completely three weeks ago and insomnia came right back. Havnt slept a single minute in 5 days and I have gone as long as 14 weeks straight with only a total of 29 hours sleep. Have any of you who have idiopathic insomnia ever experienced a complete disappearance of symptoms postpartum, or during some other phase of your life and for what phases were those? I am currently seeing a physician who claims it’s adrenal fatigue causing my lack of sleep but all the supplements she’s giving me to alleviate my adrenal fatigue have not helped my insomnia one bit. In fact I could argue the supplements (high doses of vitamin C, D, & B, progesterone, iron, calm powder, etc actually exacerbate my insomnia. Have any of you had similar experiences? Do you have ANY remedies that work? How do you function? I have a 9 year old and 6 year old both with autism, a two and a one year old. I have a LOT on my shoulders and I am always exhausted and feel like I am going craZy from lack of sleep. Anybhelp uou could offer would be greatly appreciated!

    • Carol Damas Reply

      Wendy, I totally emphasize with you. Having four children is hard enough without having to go through insomnia. I wish I had a remedy for you, but I have never found one all these years. I know exactly what you mean when you’re totally exhausted and still can’t sleep. When I had my own business, I would go three days without any sleep and would not be able to function normally. I could feel my entire body shutting down. I couldn’t even hold a pen to write an order or remember what the costumer had just told me. I am that way now but only after two days. I hate to tell you, but for me it only gets worse. If I get to sleep, it’s 15mins., 25mins. at a time. I am averaging 1 1/2 – 2 hrs. a night. That’s just in the last couple of months. Some nights are 0. I pray for sleep and I also feel like I’m loosing my mind. I can never remembering ever taking a nap in my whole life. I have tried, but to no avail. There just aren’t enough of use for the medical profession to research our type of insomnia . Hopefully some day, in your lifetime, they will acknowledge our very realistic problem. I haven’t found a doctor so far that will. I would love to try and help you in any way that I can. I just don’t know what else I can tell you. It’s a terrible thing and other people don’t understand it. They can’t imagine how we do it. Like the sleep specialist told me, “you’ve lived with it this long, you can live with it the rest of your life”. That is really sad! Didn’t even offer any encouragement. I’m just happy that there is this site and knowing that I’m not the only one suffering with this disorder. We can all converse with each other.

      • Shoe Reply

        Napping…doctors have asked me if I have daytime naps, that negatively impact my night time sleep. HAHAHA. If I could fall asleep, I wouldn’t have this idiopathic insomnia.

        It’s hard enough to fall asleep at night! The only time I have ever slept during the daytime is when I’ve been seriously ill.

        People who suggest meditation as if this is THE trick, do not understand idiopathic insomnia. I do meditate. And I do have a sleep meditation. And it helps a bit, sometimes, when I have taken my meds and done everything else. I do try to do it every time I lie down, because of this idea that doing the same thing every time helps our brains know it is time for sleep. But it is certainly not a panacea.

    • Lisa G Reply

      Oh my dear, you need to find a meditation that will work for you and do it every night after the fun factory goes to bed. Check out the different methods out there and choose one that will really give YOU inner peace. Good luck!

    • Shoe Reply

      I take a concoction of meds to get to sleep and stay asleep. Alcohol is a terrible thing to try, because it rebounds. (It doesn’t help me get to sleep, anyway, but even for those it does, it then wakes you up an hour later.)

      This new medicine Belsomra is helpful for me. I find it doesn’t work if I take it by itself. I start by taking a small dose of melatonin. And I have to have all the lights low for hours before bed, and all my screens have blue light filters. Those filters aren’t a miracle worker to get me to sleep, but if I look at a screen without filters after 10 pm, I’m so screwed.

      Sometimes I take an antihistamine an hour before bed to help the other things. And a small dose of anti-anxiety medicine if I have any anxiety at all. Really small dose. Not enough to stop anxiety, but it helps quiet the dreams that wake me. Not bad dreams, just dreams.

      I’ve been insomniac my entire life, and without all my concoctions I would not be functional. To get sleep, I have to follow ALL the sleep hygiene stuff, and take the smallest doses of meds (because taking more might help one night, but the long-term problems are worse), and I have to recognize that with all that, there are just going to be nights I don’t sleep. And on those nights, I don’t take more meds–I just give up, because that’s the healthiest thing I can do.

    • Amber Lee Reply

      Wendy, I have never been officially diagnosed with idiopathic insomnia but I have lived with it since the day I was born. I am currently 28 and in the last 2 years have tried to find a way to manage my problem of not sleeping better than I had been in the past. I started taking Tylenol PM’s 2 a night and they would work but after a couple of day I would have to up the does. I got to where I had to take 10 PM’s a night and. Hope they would work. That was when I started going to doctors. I have a very high normal resting heart rate of about 120 beats per minute. I am very healthy as I chase around a 4 year old all day plus get a 30min work out in every morning. I drink coffee and water. I have had my thyroid check, liver checked any they could check to see a) why my heart rate is so high and b) why am I not sleeping. I am currently on 5mg of ambien and it’s doesnt help. I still have to mix with PM’s to put me down as I call it. But I did notice after I had my daughter and while I was breastfeeding I could sleep with no problem and it was glorious. But as soon as I stopped the insomnia came back. If doctors could harness whatever our bodies are chemically making and put it in pill form I bet it would help at least some of us. I have added people look at me like I’m a drug addict because of my insomnia and the fact that my body with build up a tolerance so quickly to a drug. I hope this help someone feel like they are not alone.
      Another idiopathic insomniac from Florida

  27. Karlton Terry Reply

    I got it at 16 and now I am 63…tried everything, natural (supplements, homeopathics) , drugs, copious amounts of alcohol, and all three combined…noting worked…for a while carbo dopa- levo dopa worked when combined with gaba pentin…doesn’t work any more…magnesium L-threonate sometimes helps…tired of being tired, and when I do get a little sleep, waking up tired…argh!

    • Wendy DiSalvo Reply

      How many hours per night’s sonyou sleep? Did you have any children karlton? How did you manage a job, having a family…you know…functioning…without sleep? I feel like the walking dead. I am barely surviving and miserable every second one of my life due to exhaustion and sleep deprivation.

  28. Steve Reply

    Could anyone tell me, is idiopathic insomnia something that you are born with, or could you get a sudden onset of it?

      • Toni Reply

        It’s the only type of insomnia that starts in childhood. I slept well for the first 2 years according to my mother, and suddenly I just stopped and was awake a lot of the time.

  29. Carol Damas Reply

    I just released something. Do any of you have high B12 readings? I just realized that I have always had high levels of B12. Wonder if that could be connected to Idiopathic Insomnia?

    • Wendy DiSalvo Reply

      My doctor is giving me a supplement of Mega-B Stress…for “adrenal fatigue” she believes is causing my insomnia. As you know, most docs don’t believe in idiopathic insomnia. I mean most have never even heard of it.

      • Toni Reply

        They usually look at Ferritin levels which is a component of Vitamin B.

    • Shoe Reply

      I don’t think so, because I have intermittent problems of having very low B12.

      Having messed up B12 levels definitely makes everything else worse. But it isn’t the cause of idiopathic insomnia.

  30. Myrtle J Spurgeon Reply

    Thanks, Tara, for calling me a “lovely lady” of 81! You know there are in fact some perks that go along with being wide awake in the middle of the night. For instance, when I was about 10 years old, I watched the Northern Lights for hours one night and they were amazing! My parents had neither one ever seen them because, you see, we lived in the Willamette Valley in Oregon and it is a major miracle when they are seen that far South! And, losing sleep does not affect your intellect. I have had my I.Q. tested by everybody beginning in high school and ALL were high. I started college at the age of 47, graduated in 1986 and made the Dean’s list every semester. (You’re never too old to live your dream!)

    • Wendy DiSalvo Reply

      Myrtle…how do you stay positive and function? I am 37 have four young children (2 special needs who completely drain me and the other two are under 3 years old). I cry and cry each night…I have gone up to 14 weeks with only 29 total hours of sleep. I am physically and emotionally exhausted yet I can’t sleep. Can you help me? Can you tell me how you have done it all these years? I sure could use a mentor to walk me through this. Have had idiopathic insomnia for 11 years and still am hopeless, exhausted and feel like a horrible mom.

  31. Tara Nuckcheddy Reply

    Hi everybody! Am glad to read you all! Am 52…hahaha. A lovely lady talks about this even at 81 ! Wow! Amazing guys you all are! I have this wonderful syndrome you all have called Idiopathic Insomnia! But guys, this is not a disease! so we are cool , right? We have lived with this since birth and it’s lifelong! Imagine when we are all awake while the whole world is asleep! and we are the healthiest people on earth!Like many of you, I have gone from meditation, yoga, fitness….you name it, all my life and I am still awake 100%. My brain goes at 200 miles per hour. I see lots and lots of numbers… I have trained myself not to worry, not to fear….but to just carry on! Am very scientific… and yet great believer of God.. May be one day we could all meet and talk to some great scientists about this. I work for the Cancer research UK in Cambridge and I love my patients. And people, and animals, and trees…With an overactive brain, what can we do? Just live for others , I reckon.
    This is Tara Nuckcheddy here from Cambridge UK
    Please do contact me if you so wish !
    You inspire me a lot, all of you here!


      I am Phyllis,67, and developed insomnia when I
      first went to college. After graduation it continued until the present. I have been through it all, doctors , clinics, tests, hospitals, medications, anything I thought my work to help. Do
      other people live their whole life like this? Any advice?

      • Wendy DiSalvo Reply

        Phyllis…I developed idiopathic insomnia very suddenly the last night of my honeymoon 11 years ago. I have tried everything. Read my post below. Anyway, I am looking to have a support group…but I prefer via phone if not in person. Is that possible???? Please let me know if we can contact ea h other via phone to talk. I am desperate to walk through this with others who are going through what I am going through.

        • Cate Reply

          Hello and empathy to all who have left messages on this site. Having this relentless insomnia is rare and lonely. It would be so great to have a support group between us. Anyone know how we can do that without publishing our personal details?

  32. Carol Damas Reply

    I am 74yrs. old and have had this all my life. I never knew of this disease until 12 yrs. ago when a friend did some research on my insomnia. I have tried everything that has been suggested to me. Nothing seems to work. I have been to classes, phycoligist, physiatrists, hypnotherapists, sleep specialist, and have tried many different meds. It’s living hell and affecting me worse the older I get. The response I get is (you’ve lived with it this long, you can live with it the rest of your life. I am sorry that you have to go through this, but glad to hear that it’s not just me having all these same symptoms. I average 3 hrs. a night. Once a week I might get 4 and then I feel like a new person. Good luck to you all!

    • Wendy DiSalvo Reply

      I would KILL for three hours of sleep per night. I literally go weeks without even a single hour of sleep!!! Raising four young children ans going insane. Is there anyway I can talk in the phone with you Carol, or any of you?!? I need a mentor. Someone who actually believes I don’t sleep ans possibly ha found a way of staying positive and being functional while being sleep

      • Shoe Reply

        Put a sleep app on your phone, track it every night for a couple months, and then you won’t have to find someone who believes you, you will have proof.

        • Carol Damas Reply

          I have a Fit Bit and track my sleep pattern or lack there of, all most every night. I found that I’m not getting 3hrs. a night. I find that when I do sleep, it is very sporadic. 15 mins., awake a couple of hrs., sleep another 10 or 20mins. all night long, end up with 1-2hrs. if lucky. Some nights none at all. I do take 30mg of Temazepam every night and have for the past 13 yrs. It does have side effects, but not as many as sleep deprivation does for me. I find that now I may get 3 or 4 hrs. once or twice a month. It is amazing how a few hours of sleep can make me feel like a new woman. I am very active whether I get sleep or not. It’s a way of life that we have to learn to live with.

  33. Ruud v Leeuwen Reply

    I am diagnosed with birth onset idiopathic insomnia what surprises me is that the data on idiopathic insomnia is not opdated in lots off sites on the net.
    They say that less thanone % off the populationhasit.

    Iam diagnosed by to professors who knew off it but never had seen the sort off data i had in my sleeplab reports.

    The ilness is not recognised as an rare deseaseby any organisation in the world.
    But nearly no one has it.

    I know off 3 in great-britain two in Swiss and me in Danmark.

    I would like to meet others but it is not possible to show or post my email.

    • K. Lagace Reply

      Hey there, my son has this sleep disorder as well. We live in Calgary Alberta Canada. He has had it for years. He has been to many doctors that say there is nothing they can do. He is on his own. Except for me.

      • Alexzandra Reply

        I was diagnosed with idiopathic insomnia right after I got my NBA in 1992. it is extremely disheartening to have the medical profession ignore you as if I am fabricating my lack of sleep. Thirty years ago I was given seconal for my insomnia in high doses but this DRUG is not prescribed ANY longer. I was then put on 30mg of temazepam on and off for several years. it appeared to be the next best thing. I am upset at the ignorance and futile narcissism of the younger generations attitudes towards benzodiazepines in general, even appalled, I now TAKE 2 zoplicone 7.5mg and it has very little effect on my nervous system. Younger physicians refer to these as “Z”Drugs, and that they’re addictive, IF I was told 30 years ago when all these drugs (especially benzodiazepines) were habit forming to th point of dependence, I would never have taken them. now I’m being denied any DRUG that works due to the supposed half lives of each. you may as well called it he’ll to pay when you cease taking benzodiazepines after a long period! I don’t care if I’m dependant on them because they already have altered my brain chemistry so that NOTHING ELSE WORKS! I would rather be at least on temazepam than live a life devoid of any quality, being constantly paranoid and exhausted and now agoraphobia. I have a doctorate as well, too bad it wasn’t in medicine. I’d love to see the politicians responsible pain and suffering they’ve caused by making perfectly acceptable drugs in the 50s, 60s and 70s now
        “A CONTROLLED SUBSTANCE(S)! it is a disease, like cancer and alcoholism. Do your due diligence and more research because once you’ve taken benzodiazepines for a long period, it is IMPOSSIBLE to revert back to supplements, that funded good old Prof. C. Heather Ashtons UĶ BOOK/BIBLE ON BENZODIAZEPINES BECAUSE: A 10MG VALIUM IS ALMOST EQUIVALENT TO 90 GABA TABLETS, THE SAME GOES FOR MELATONIN, VALERIAN, 5HTP, ETC. it bad enough our premier’s allowed a module of one of the world’s worst health care systems from none other than Johannesburg, SOUTH AFRICA INTO ALBERTA, BUT SERIOUSLY , WHEN YOU KNOW NOTHING ABOUT EVERYTHING STOP CHANGING OUR LIVES FOR YOUR FINANCIAL BENEFIT! Just look it up. As for you child doctors, put your little med conversion tool back in your pocket and do some research before you kill someone else!! Shouldn’t we be focussing on the major health issues? Like how is all this tampered Fentanyl killing all our kids? Enough said!

    • Wendy DiSalvo Reply

      I am 26 years old and have had it for 11 years. NOTHING I do works. Many physicians claim they have the answer but NOTHING they suggest or give me works. It’s a horrible way to live life. I feel all alone and like the walking dead. The lack of
      Sleep for 11 years has caused me to become hopeless and depressed and there is no hope of a cure. I am so very exhausted but I can’t sleep. My body won’t let me. Only reprieve I have ever gotten is postpartum breastfeeding. I have had four kids and each time insomnia returns as soon as breastfeeding ends. Thoughts?

      • DC Reply

        Did you, by any chance, take antibiotics around the time you became insomiac?

        I only say because I became insomniac very suddenly for no reason anyone can explain (I don’t have any other sumptoms), after decades of perfect sleep, which worsened rapidly over a period of 2-3 weeks.

        However, I recalled taking a 5-day course of antibiotics for a tooth abscess which make me feel a little wired almst immediately. On the firfth day this turned into pronounced insomnia that has persisted.

        Coincidence? Possibly but it strikes me as one that at least requires an explanation no medical person seems willing to consider.

    • Lisa G Reply

      I’m 37 years old and have experienced idiopathic insomnia since my first memories! I live in the U.S., but my family came over in 1600’s from the UK, a small town called Gazeley. My son is 20 years old and inherited the insanity of it from me as well. Insomnia coupled with bipolar disorder, I’ve been told I’m crazy my entire life, people even believe I’ve had it easy because of it all. The fact of the matter is THEY have it easy, at least their mind, body and soul is allowed consistent rest to recharge, I have to try and recharge without resting. A bullet to the head sounds easier!! I stopped taking sleep meds over 10 years ago. In the end the only thing the meds did for me was provide ALL the negative side effects. I’ve accepted it’s a natural part of ME and embrace it with the rest of my natural spark!

  34. Myrtle Spurgeon Reply

    My Mother told me that I slept well as a baby but developed insomnia at the age of two! I have had it ever since and I am now 81. You would not believe all the things that I have been told by the medical profession that will help me sleep none of which do. Or all the things that help ordinary insomniacs which do nothing for me. I have been practically called a liar on more than one occasion. I take Lunesta now but it doesn’t really help much. I took Ambien for years when it is supposed to be for short term use and it didn’t help or hurt either one. In my opinion, there is no real help at this time for idiopathic insomnia.

    • Bonnie Reply

      Thank you for this article!
      I have had sleeping difficulties all my life! I have tried all the sleep hygiene tips and nothing has worked.
      Im sick of being told I am either stressed or mentally ill.
      I have been taking a bodybuilding sleep aid with GABA in it for a few years. It used to work but now the are replacing all the sleeping powders as the compounds used are too potent for the general populace (similar to rohypnol apparently). Not sure what I am going to do now. It is horrible being constantly tired. At least once a night I screech at my partner for moving in the bed, or getting up too many times, or some other perceived action that awoke me. Are there any suggestions on dealing with this type of insomnia or at least the side effects of tension in relationship and decline in cognitive functioning?

      • Lisa G Reply

        Switch your med to marijuana! It helps me relax my mind, body and soul enough to keep me sound asleep for as long as I need. Thank you very much for coming!

        • Shoe Reply

          Marijuana wrecks memory. And if it is really helping your insomnia, chances are your insomnia is not idiopathic, but more due to anxiety.

          Idiopathic insomnia is not about stress or anxiety, it is not about lack of being able to relax.

    • Shoe Reply

      Try a combination of a low dose of melatonin and a prescription of Belsomra. This is the closest I’ve found to something that will consistently get me to actually sleep. I mean, not every time, but more often than anything else.

    • John Duck Reply

      I just discovered this website and the term “idiopathic Insomnia”. I thought I was the only one. I first discovered that I had insomnia at the age of 9 when I joined Cub Scouts and went on our first field trip. About 20 of us were in bunk beds and after lights out I heard one kid start to snore and I thought there was something wrong with him. Then as I listened I heard the other kids start to snore or begin the reduced sleep breathing. For the first time I realized that people went to sleep when they went to bed and it never happened to me. I have been trying ever since then to find a way to got to sleep and it has now been 66 years as I am 75. In 2002 after surgery I was given Restoril and it was wonderful. Lying in a hospital bed with my belly stapled shut and I count it as the best day of my life because for the first time I slept deeply and awoke alert and happy. I’m sure that each of us is different, but the hypnotic drugs worked for me and I have been taking Ambien/Zolpidem for years without any side effects. Now my doctor wants to cut back from my 10 mg per night!

      • Carol Damas Reply

        I just got a new doctor and she wants to cut me down on my Restoril/Temazepam that I have been taking for 13 years. However, it does have side effects. It effects my memory, but so does sleep denervation. What are we suppose to do?

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