Idiopathic Insomnia

Idiopathic Insomnia

Idiopathic insomnia is a form of chronic insomnia that contains no visible signs of its cause. It is theorized as being the result of an under-active sleep system, or overactive awakening system, but no verifiably true origin or cause of the disorder is known.

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.

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.

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

  • 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!

    • 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.

  • 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!

    • 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

    • 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.

    • 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!

    • 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.

      • 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.

  • 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...

  • 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.

  • 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?

    • 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?

  • 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.

  • 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.

  • 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.

  • 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