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 underactive 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 behavioural 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.

 

Reviewed September, 2007

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25 Replies to “Idiopathic Insomnia”

  1. Myrtle Spurgeon

    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

      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?

  2. Ruud v Leeuwen

    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

      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.

    • Wendy DiSalvo

      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?

  3. Carol Damas

    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

      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
      Deprived.

  4. Tara Nuckcheddy

    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!

    • PHYLLIS DEL VESCOVO

      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

        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.

  5. Myrtle J Spurgeon

    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

      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.

  6. Carol Damas

    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

      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.

  7. Karlton Terry

    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

      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.

  8. Wendy DiSalvo

    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

      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.

  9. Chris Herzig

    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…

  10. Karen Scott

    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.

  11. Paulette Hood

    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?

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