How do people survive severe insomnia

I have insomnia at various points in my life, but reading up on it I’ve read some people who have it really bad, far far worse than me. People who claims they may go weeks without sleeping, people who claim they only average 10-15 hours a week of sleep.

How exactly does sleep get so screwed up that people end up in those situations, and how dangerous is it? What goes on in the human brain where sleep gets that screwed up?

Looking at studies like this even 3 hours sleep a night is only mildly more deadly than the ideal 7-8. But aren’t so many important biological functions occurring during sleep that mortality should be higher?

I know Heath Ledger said a few months before he died that he was only getting 2 hours a night. However I think he died from combining a half dozen drugs, not from insomnia itself.

I have had insomnia since puberty.

At first, alcohol. Then alcohol plus diphenhydramine.

Now, pills. All kinds of pills. I’m an outlier…

After 6 months on pills (this was 2001), I decided to see if the old vodka + diphen still worked.
It didn’t.
So far, I have gone 4 days without sleep. Not fun.
After the 4th day, I took another pill.

Have no interest in trying again.

Yes, I did the ‘20 wires, 2 straps, and oxygen sensor’ test.

There was a CPAP machine permanently installed by the bed.

Not surprisingly, they discovered that I too “needed” a CPAP.

On the plus side - that night (when I got a total of 4 hours of kinda sleep) was the only time in memory I could sleep without a pill - when I got home after the test.

People can die from lack of sleep, of course. But there has to be something really, really bad interrupting your sleep for you to just not sleep at all ever. Like, torturers or that family in Italy that has something in the bloodline that causes them not to sleep–to death.

Yes, sleep deprivation is a known torture technique.

Which is why I resisted pills as long as I could - I now require the active participation of both an MD and pharmacist to sleep.

I’ve had on and off insomnia my entire life. There is no easier way to go insane than to go extended periods of time (as in multiple days) with no sleep. It fucks with your mind in really amazing ways. You start to lose your grip on reality. No joke. In situations like this, medication is really the ONLY option.

The last few weeks I have been getting almost 4 hours a night and feel like I am in heaven. I go for months at a time with maybe less than 15 hours a week, many nights I don’t sleep at all. I refuse to take any drug or alcohol for it. When I get no sleep at all for more than 2 days I feel physically sick, by the third day I will start to halucinate. I had a 10 year reprieve from a lifetime of insomnia following my divorce 25 years ago. Mine is caused by some kind of hyperactive brain activity and subconciousy thinking that sleep is robbing me of life. It kills me not to be doing something.

I’ve had insomnia since puberty. My parents thought it was so great, that I stayed up all night reading the entire World Book Encyclopedia, cover to cover of every volume. They didn’t think it was so great that I couldn’t get up in the morning to get to school on time.

Now, at a more advanced age, I rarely sleep more than an hour at a time, or about 2-3 hours per night. I’m on so many medications for other reasons, that I don’t dare take anything for the insomnia. And I don’t drink. Yes, the sleep deprivation has affected my mind, mainly in drastically reducing my attention span.

My partner can go to bed, and sometimes not wake up for 10 hours. I can’t imagine what that’s like.

If this is having such a deleterious effect on your life, why in the world wouldn’t you be open to medication? Is it a stubborn, “I just don’t do pills for anything” attitude? If it’s killing you not to be doing something, then do something. There are many different sleep aides, with many different side effect profiles, one of which may be ideal for you. Don’t suffer needlessly.

The go-to hypnotics for many years were the benzodiapines (Valium being the best known).
Around 2000, a new class of drugs, called “the Z drugs” (their names feature the letter z) and it was widely hoped that these would free the insomniacs from the nasty side-effects of the benzos.
It turns out they have their own nasty side-effects.

My point is: there are now 2 major classes of hypnotics - for those not wanting a pill - find a patient doctor and start trying.

I now have people who think giving me a CPAP machine will free me from drugs.
Luckily, they have decided to fight medicare over paying for it, so I still get pills.

I can see sleep apnea detroying quality of sleep, but fail to see how it is responsible for the non-stop mental activity that keeps me awake.

My partner is the same way, can get a full night’s sleep (plus some) and then still be able to take a nap in the afternoon. He can sleep anywhere at any time. Not in a narcoleptic way, I just mean if he wants to sleep, he can sleep. I am exceedingly jealous.

I already have to take a handful of pills every day, for various chronic conditions, some life-threatening. Their combinations have no documented side effects. Adding another med would increase the chance of a serious, unpredictable side effect. I’m still trying to find a pain med that I can safely take, and there doesn’t seem to be one.

12-hr swing shift worker here. Get up at 3:30 am. Try to go to bed by 10 pm. Any earlier & I just roll around. Switch to midnight shift. In bed by 7 am, up at 11 am. My days off are just a continuation of whatever shift I just got off of. Alternate until I die or hit lottery.

Yeah, I used to suspect my sleeplessness was a circadian screw-up. I spent a year on second shift - it much easier than first shift, but still required EtOH.

Those were the days, my friend, we thought they’d never…

I’ve got a dear friend with true insomnia - she gets 4-5 hours a week most weeks. She’s a mess. She’s been diagnosed with bipolar disorder, schizophrenia, anxiety, major depression and more. She goes into a fugue state more nights than not and wanders, and eats anything that isn’t nailed down, completely unaware of what she’s doing. Her husband has had to put locks on the cabinets, lock up the knives, put locks on the doors and windows which cannot be opened without the key he keeps on him (terribly unsafe in the case of a fire!) and she cannot be left alone at night. She has started having seizures.

All of her symptoms appear to actually be related to the insomnia. She recently went on a last-ditch off label attempt with a pill that, when she told me the dosage and I looked it up, was prescribed at more than 10 times the normal dose. That got her a few nights of actual sleep, up to four hours a night, and all of her “mental illness” went away.

Sadly, like every other pill, it stopped working after about a week. She’s a mess again.

I don’t say that to discourage anyone from trying medication, but to point out to people pushing medication that we don’t have good treatments for insomnia. Medications can help temporarily, but they have the duel disadvantages of being both habit forming and increasingly ineffective. Pushing people to pills may help some with mild intermittent insomnia, but for those with truly intractable insomnia, it’s just frustrating to hear and not helpful.

What’s helped her more than any of the pills is sleep hygiene and wearing orange tinted glasses after sundown. With those, she can get an hour or two of sleep per night, most nights. Hasn’t stopped the fugue or seizures, though.

Your friend is a prime candidate for a medical sleep study.

Among other things, it tracks blood oxygen, runs a continuous EEG, tracks eye motion (REM has a signature pattern), breathing (straps under arms and around diaphragm).
In my case there was also an IR video camera.
People who can get to sleep but can’t stay asleep are prime candidates for apnea.

Don’t care what it takes, but living in permanent psychosis is not an attractive alternative.

How about Melatonin? Have the sleepless even tried that? It is not a foreign drug - it simply boosts the level of your body’s own production.


  The reason I don't use medication is because I know it is more of an immature emotional problem on my part. I can usually get it back under control. It also has something to do with me making too many comitments, if I get my life in order sleep seems to follow.

Mmm-hmmm. Been there. Problem is, a sleep study isn’t very useful when a person can’t sleep. They’re great at finding sleep disturbances, but more often than not (and she’s been through many of them), she just can’t sleep, and so they have to reschedule…for another night when she can’t sleep.

Mmm-hmmm. Been there. No difference. Also done all the regular sleep aids, a few I’ve never heard of, and every herbal I can throw at her. Only thing that kinda-sorta helps, unfortunately, is booze. Which we all know, including her, is not a sustainable or healthy long term plan.

I know you’re trying to be helpful. Everyone is always trying to be helpful. But you know what else is worth a try? Trusting someone when they tell you that they and their doctors have tried everything known to medical science, and a few wild-asses guesses on top of it. Trust me, there’s nothing you can suggest, there’s nothing on the internet Top 10 Tips lists, that hasn’t been tried, not just for her, but for most people with really bad insomnia. And they tend to be cranky, so sometimes it’s best just to nod in sympathy, keep your mouth zipped, and offer to babysit whenever she feels like maybe a nap is possible.

(Latest wild goose chase is that maybe she has undiagnosed Hashimoto’s. A recent move put her in the neighborhood of a much better endocrinologist, so…fingers crossed. She’s been shuttled from one specialty to another so much that there’s not a lot of hope left, but some hope is still better than no hope.)

My doctor thought for a minute I might have Hashimoto’s. No, I don’t. I just can’t fall asleep. Once asleep I can stay that way until around 5 or 6 a.m. Usually I go to sleep around 3. Sometimes I get a beer and fall asleep by 2, but then I wake up at 4 or 5 for sure. I used to get sleep with benedryl but now it just wires me up. I saw someone mention valium above; I used to get great sleep with valium, but then it just suddenly stopped working. Plus it got hard to get a doctor to prescribe it. Melatonin is like nothing. Are there really people that works for.

When I retired I thought maybe my sleep would improve. When I was working I would look at the clock and calculate how much sleep I could get if I went to sleep RIGHT NOW (I know the insomniacs know exactly what I am talking about!) so I thought once I didn’t have to get up at a specific time things might improve. Instead things got worse, mostly I think because I now take a nap in the afternoon because I get so sleepy I can’t stay awake. But also, all the senior citizens I know have a problem sleeping too so I guess it’s a feature of age. Great. Now I have time to sleep and I can’t.

Kay, have you ever had periods in your life when you did sleep well, if so how long did they last?

I worked graveyard shift in NYC for many years, and couldn’t sleep during the day because of an extremely noisy environment. That job truly ruined my health in so many ways.