Have you ever spent the night tossing and turning, simply unable to fall asleep? Or have you ever fallen asleep but then found yourself waking up every hour for no apparent reason? Perhaps you just can’t improve your sleep efficiency score, no matter how hard you try.
If you’ve dealt with either of these scenarios, you know just how infuriating it is to struggle with sleep issues. An estimated 40% of adults suffer from various types of insomnia each year.1 Based on that fact, there’s a good chance that you or someone you know have first-hand experience with this troubling disorder.
Perhaps you have struggled with sleep for your entire life since birth. If so, then you may fall into a rare category of insomnia called idiopathic insomnia, often referred to as childhood onset insomnia.
Never heard of it? Not many people have. In fact, chances are that unless you or a close family member or friend are affected by idiopathic insomnia, chances are you would remain oblivious.
Let’s take a closer look at this mysterious condition…
What IS Idiopathic Insomnia?
The term insomnia is fairly well-known as describing troubled sleep patterns. Many people are unaware, however, that insomnia has its own subcategories depending on what area of sleep you struggle with. The most common types of insomnia are:
- Sleep-onset insomnia – Trouble falling asleep
- Sleep-maintaining insomnia – Trouble staying asleep
- Early morning awakening insomnia – waking up too early (not by choice)
While you have probably heard of (or even dealt with) one of these more common types of insomnia, idiopathic insomnia, is widely unfamiliar. This rare sleep disorder is one of the most vague and mysterious forms of insomnia out there.
Affecting only 1% of the population, idiopathic insomnia is defined as a lifelong sleep disorder beginning from childhood, or even infancy, and continuing into adulthood.2
People who suffer from this type of insomnia generally struggle with sleep on a nightly basis and have for their entire life. Their struggles might include shorter sleeping times, repeated waking, or difficulty falling asleep, among other various sleep disturbances.
While there are various theories surrounding what causes this specific type of insomnia, there is no conclusive evidence for any of them.3
Researchers have suggested that idiopathic insomnia may be the result of an underactive sleep system or overactive awakening system. But these are merely guesses.4
What Idiopathic Insomnia Is NOT
While doctors don’t seem to have a ton of information about what causes idiopathic insomnia, they can certainly explain what doesn’t cause it. Idiopathic insomnia is definitively NOT caused by:
- Other sleep disorders
- Medical problems
- Psychiatric disorders
- Stressful events
- Substance abuse
- Medication use
- Poor sleep hygiene
- Other behaviors
You will notice that genetics are not on the list of things that DON’T cause idiopathic insomnia. But don’t assume too quickly that genetics are to blame for this mysterious disorder.
While some research has shown that idiopathic insomnia runs in families, no specific gene can been linked to this type of insomnia just yet, currently ruling genetics out as an official cause while still keeping it off of the NON-cause list.
Multiple sleep studies have been conducted showing that there are noticeable differences in brain activity between those diagnosed with idiopathic insomnia and normal sleepers. Unfortunately, no one can figure out why this is. Yet another way that this disorder remains confusing to medical professionals and patients alike.
Getting diagnosed with a disorder of any kind can be scary and frustrating. But patients can generally find comfort in receiving plenty of information and treatment options from their doctors.
If you are diagnosed with idiopathic insomnia, however, your doctor is basically saying, “Look, I have no idea why you have been a chronic insomniac for your entire life. Furthermore, there is no known cause, cure, or treatment for this particular type of insomnia.”
No cure? No treatment? How can that be?
Treating Idiopathic Insomnia
It’s true that there is no official cure or specific medical treatment for idiopathic insomnia, though there are ways to manage this disorder if you are diagnosed.
And that is a big IF regarding diagnosis. Getting diagnosed with idiopathic insomnia is a long and difficult process. Many people use a sleep diary to record all the remedies and lifestyle changes they have tried without success. When it comes to any type of insomnia the list of possible causes is vast. Just a few of the possible causes for any version of insomnia may include:
- Nasal/allergy issues
- Endocrine problems
- Chronic pain
- Asthma
- A variety of neurological disorders
- Depression
- Anxiety
- Lifestyle choices
- Poor sleep hygiene
Since many of those are on the list of things that do NOT cause idiopathic insomnia, they can be quickly ruled out. But that is just a fraction of a much longer list of insomnia causes.
It can take months and months to carefully and strategically rule out each possibility when trying to pinpoint idiopathic insomnia.
Due to how difficult idiopathic insomnia is to diagnose and treat, most doctors will fully explore every possible cause before deeming it idiopathic. During the process, patients are also often asked to take a polysomnogram test multiple times. If you suspect that you may have idiopathic insomnia you can expect a long and sleepless journey before being diagnosed.
Once a person is finally diagnosed with idiopathic insomnia, treatment options are very similar to treating more common types of insomnia.5 When I found out that treatment for all insomnia is basically the same, I was incredibly irritated!
Think about it…why are lifelong sleep-deprived patients forced to endure months of exploratory testing when they will likely be treated in the same way as a general insomniac? It just doesn’t make sense.
Regardless of my personal issues with how this mind-boggling disorder is diagnosed, treatment options remain limited. The most common medical treatment for idiopathic insomnia is prescribing a benzodiazepine tranquillizer. Possibilities include, but are not limited to:
- Brotizolam – Bondormin, Dormex, Lendorm, Lendormin, Noctilan, Sintonal
- Estazolam – Prosom, lormetazepam (Loramet, Pronoctan)
- Quazepam – Doral
- Triazolam – Halcion
When prescribed, these tranquilizers are supposed to offer a restful sleep without affecting normal breathing or causing dependence. Because idiotic insomnia will often result in long-term use of drugs, tolerance is often observed in sufferers.6
Surprisingly, since people who suffer from idiopathic insomnia have dealt with it for their entire lives, many adjust and need no medication at all. Medication is only prescribed in cases where an individual is experiencing excessive drowsiness during the day.
Outside of medication, there are really no medically-based treatments, only self-help methods for coping with and managing this relentlessly difficult disorder.
Managing and Coping with Idiopathic Insomnia
People diagnosed with mild or moderate idiopathic insomnia may find that they adjust to a lifetime of insufficient sleep without it seriously impacting their lives or well-being.7 After all, when you have been dealing with something for many years, its human nature to adapt.8
Those with more severe cases or who haven’t successfully adapted to this disorder may suffer tremendously. Relentless fatigue and difficulty performing day to day tasks can become a chronic and exhausting issue.
It’s no surprise that the burden of suffering from idiopathic insomnia may cause people to self-medicate.
A harmless additional glass of wine or an extra sleeping pill can easily turn into chronic overconsumption. Excessive use of drugs, alcohol, or medications in an attempt to ease idiopathic symptoms unfortunately tend to only make them worse them in the long run.
As with any sleep disorder or type of insomnia, proper sleep hygiene is important and can offer some relief. Whether dealing with idiopathic insomnia or any other type of insomnia, adhering to the following sleep standards is always a good idea:
1. Condition the mind
Tension and anxiety can make falling asleep difficult. It is good practice to quiet your mind prior to attempting to fall asleep. Listening to soothing music, meditation, or guided hypnosis are all useful techniques in conditioning the mind for sleep.
2. Soothing Sleep Space
Creating a sleep space that is conducive for relaxation and uninterrupted sleep is imperative. Your sleep environment should remain uncluttered, cool, dark, and quiet. Eliminate any technology and forms of blue light, four-legged friends, or other possible disruptive stimuli.
3. Exercise
When your muscles have been worked hard enough during the day that they physically need to repair themselves, sleep often comes more naturally and easily. Be careful not to work-out too early in the morning or too late at night. Ideally, exercise should occur mid to late afternoon.
4. Set Modest Goals
If you have spent your entire life sleeping one hour a night, it is unrealistic to revamp your sleep hygiene and set a goal of eight hours of sleep per night. Start off with small and attainable sleep goals. If you regularly sleep for three hours a night, set a goal of three and a half or four hours per night and gradually increase from there.
5. Cut Back On The Booze
Even though it seems like a few glasses of wine can really help when it comes to crashing out for the night, alcohol actually disrupts proper sleep. Avoid consuming too much alcohol, caffeine, or nicotine at any point but especially late in the day or night.
6. Embrace It
It may sound absurd but sleep has a lot to do with your state of mind. If you can try to acknowledge the positive aspects of your current sleep habits, it might offer you some peace of mind…which may in turn lead to more sleep. Only sleeping two hours a night? You have the ability to be much more productive than those sleeping nine hours a night! Make the best of it and try to stay positive.
Suffering from any type of insomnia is difficult, with idiopathic insomnia probably being one of the most troublesome – Can you imagine being told your insomnia has no cure?
All types of insomnia share one common characteristic, though – the more time spent worrying, panicking, or obsessing about your insomnia, the worse it becomes.
Sleep requires letting go mentally and insomnia often feeds on your fear of not sleeping, creating a frustrating cycle.
Do you know anyone who has struggled with idiopathic insomnia? Any encouraging stories or advice? Share your comments, you may help someone sleep better tonight!
Margot,
I loved the article as I am 29 and have had insomnia since infancy. My parents used to take turns rocking me to sleep as a child because they would fall asleep as I would still be wide awake – unfortunately.
Anyway, since I have dealt with this my entire life I have theorized and done plenty of research. One theory I have landed on is the use of anesthesia in newborn/infants and its possible effects on the development and production of melatonin.
I know doctors say that idiopathic insomnia is “definitely not” caused by medical, and I think that is partly a form of damage control. BUT, I would love to see a study done on children that have been exposed to anesthesia for surgery and see the correlation behind if they have had sleeping problems or not. Ya know, just to rule it out.
Other than that, I appreciated your article. I was diagnosed with “chronic insomnia” at age 12, but I didn’t know there was a more in depth clinical term until now.
Thank you for the information!
Thank you so much