Has anybody else TOTALLY stopped sleeping?

I always believed it was IMPOSSIBLE to stop sleeping entirely but I was wrong.

PFS hit me in Dec. 2014. I became instantly impotent but also stopped sleeping totally for four months. I then went to the hospital for two months and they restored normal sleep with remaron and nortriptylin nightly.

But the drugs stopped working in Dec. 2016 and I again stopped sleeping at all until August 2017. I again went to the hospital for five days and they temporarily restored my sleep by adding a third drug (doxypin).

The drugs stopped working at all after two weeks. I have not slept one second since then. I DO lie down and rest but am absolutely positive I do not sleep at all.

(I’m not confused or crazy, in case you’re wondering. I was a lawyer for 20 years and am a member of MENSA.)

Yes this happened to me when I was on fin and continued for about a year after I came off the drug.

Apart from time - TRT was one of the things that helped me recover my sleep.

I still have sleep problems but atleast now I can sleep for maybe 3 or 4 hours at a time.

This must be a different type of sleep deprivation then cause normal people die after two weeks of no sleep.

Well at least you can’t die from finasteride, one positive.

have you tried a dopamine blocker? maybe this would help you sleep. risperidone low dosage is a good option or olanzapine… i understand your pain, i lost my sleep too, not totally but partially and its a horrible situation

Try cutting out all caffeine/stimulants for few days. It worked for me

I’ve gotten a few emails on this. Someone reported a PFS victim who slept 23 hrs a day.

My neuro has prescribed me Belsomra, a $500 month sleeping pill from our pals at Merck:

http://www.merck.com/product/usa/pi_circulars/b/belsomra/belsomra_mg.pdf

So far, zero help. Anybody used this?

Source on the guy sleeping all day?

And fuck man, I don’t know how you’re surviving, your situation sounds terrifying. You can’t keep relying on them to keep working. Maybe next time you have success on them try to stop and see if you can sleep on your own again if you haven’t already done so. Or try some psychotic drugs like xptriado said because those don’t create too much of a sleeping dependency.

Thanks for all the helpful suggestions.

I should clarify that I also experienced extremely severe insomnia for seven months before I discontinued F and PFS hit me in Dec. 2014. I was a perfect sleeper until summer 2014, when I suddenly could not sleep for more than 4 hrs. Ny Nov I was down to 1-2 hrs. In mid-Dec I dropped to 0.


Found two terrific/informative articles:

http://www.todayifoundout.com/index.php/2017/08/can-staying-awake-long-really-kill/

CAN STAYING AWAKE TOO LONG REALLY KILL YOU?

August 29, 2017 Scott

Every college student knows the eye-stinging pain of a caffeine-induced all-nighter. It’s been well documented that prolonged sleep deprivation will lead to lower cognitive and motor function, as well as impaired memory; it might even give you the tired-giggles. No one has ever definitively shown why sleep is necessary for our survival, and no person has ever had sleep deprivation listed as their cause of death. As prominent sleep researcher John Allan Hobson states “The only known function of sleep is to cure sleepiness”. So, can sleep really kill you?

Mouse studies have consistently shown that continued lack of sleep will lead to a 100% chance of death in relatively short order. To wit, every single mouse that has been subjected to total sleep deprivation has died within 2-3 weeks of the experiment’s start. For obvious reasons, the same studies have not been performed on humans. But given the many animal studies showing this very thing, and countless sleep deprivation studies with humans demonstrating the myriad of health problems associated with a lack of sleep, the general consensus is that a complete lack of sleep for too long will certainly lead to your early demise. However, for reasons that will become clear shortly, “sleep deprivation” isn’t likely to end up being what’s listed as the cause of death.

(Perhaps this would be a good time to recommend for those who have trouble sleeping or are otherwise wanting to optimize sleep quality Sleep Smarter, by Shawn Stevenson- a book not without issues, but on the whole a decent quick-read primer on optimizing sleep- or Sleep Soundly Every Night, Feel Fantastic Every Day: A Doctor’s Guide to Solving Your Sleep Problems, by Dr. Robert Rosenberg.)

So how does sleep deprivation kill you? To answer that, let’s take a closer look at what makes us want to sleep, and what chronic sleep deprivation does to your health.

Maintaining homeostasis is the term used to describe almost every reaction your body is trying to accomplish. Keeping all its molecules such as proteins, fats, electrolytes, hormones, and even its pH within a specific range. For example, the body’s normal pH range is 7.35-7.45. Too far out of this range and your cells begin to die. (It’s not surprise then that eating things that are more or less “acidic” doesn’t actually affect your blood pH levels in any meaningful way, contrary to popular belief. Your body keeps a tight lock on this using various mechanisms out of necessity.) The same is true of almost every one of the other molecules within the body.

One of the brain structures responsible for maintaining homeostasis via hormone release is your hypothalamus. The hypothalamus controls things like body temperature, hunger, thirst, fatigue, emotions, growth, salt and water balance, weight and appetite, and the circadian rhythm involved with sleep.

There are quite a few components working together that make you want to sleep and wake up. They normally revolve around 24-hour cycles known as circadian rhythms.

One factor that makes you want to sleep is the presence of Adenosine (a purine nucleoside). This compound inhibits many of the processes involved with wakefulness, specifically inhibiting neurotransmitters like norepinephrine, acetylcholine and serotonin. Adenosine levels will continue to rise in the brain while you’re awake. They reach their peak in the evening, and while sleeping your body will break it down.

The body also reacts to cycles of light and dark to regulate sleep. When light enters your eyes, a nerve pathway between your retina and the hypothalamus gets stimulated. An area of your hypothalamus called your suprachiasmatic nucleus (SCN) signals countless other parts of your body to begin releasing hormones controlling the desires to be awake or feel sleepy.

When darkness ensues, the SCN signals your pineal gland to release a hormone called Melatonin. Melatonin will make you feel less alert and sleepier. Melatonin levels stay elevated for around 12 hours, and by 9am, assuming a natural light/dark cycle, are barely detectable in your bloodstream. Interestingly, exposure to certain artificial light can affect melatonin levels significantly.

For example, if you’re reading this at night, the light from the computer screen can reduce melatonin levels and you feel less sleepy. This artificial light problem is why countless medical professionals warn against the effects of too much screen-time (cell phones, computers, and television). Failure to heed their warnings may result in insomnia and subsequent health issues which we’ll get into momentarily.

When morning comes, the SCN will then signal hormones like cortisol to be released. Cortisol is a stimulating hormone that naturally prepares your body to wake up. It affects everything from central nervous system activation, blood sugar levels, blood pressure, and immune responses.

The rhythm of this sleep/wake clock varies with age. Young children tend to sleep more in the early evening, older adults tend to go to bed and wake up earlier. Teenagers have melatonin released later at night, thus they tend to stay wake, and sleep in, later. Newborns don’t have the cortisol circadian rhythm and its patterns won’t develop until 2 weeks- 9 months of age. As every parent knows, their child sleeping through the night is a gift they pray for daily! The lucky ones get theirs answered sooner rather than later

Now that we know a little bit about how our bodies control sleep. Let’s look at the problems a lack of it can cause.

A good demonstration of how lack of sleep can kill you can be observed in the progressive, neurodegenerative disease called Fatal Familial Insomnia (FFI). FFI is known as a prion disease. Prions being misshapen proteins that can accumulate in the brain and cause the death of neurons. Specifically, FFI is caused by a mutation of condon 178 on the prion protein gene (PrP).

FFI mainly affects the thalamus. Over time, the death of the neurons associated with the thalamus cause all the symptoms of FFI. Since the hypothalamus and the aformentioned suprachiasmatic nucleus (SCN) are affected, sleep/wake cycles are logically influenced as well.

The first symptoms of FFI tend to begin between the ages of 32-62. Usually beginning with insomnia, progressing to weight loss, lack of appetite, body temperature problems (both too high and too low), panic attacks, and phobias. Those symptoms progress to muscle wasting, uncoordinated movements, forgetfulness that leads to rapidly progressive dementia and unconsciousness. While insomnia isn’t always the first symptom, total inability to sleep is common towards the end. Death will typically happen 12-18 months after the first symptoms.

Most FFI cases are inherited. If you have it, there’s a 50% chance you’ll pass it to your children. Don’t be too concerned about getting it, however, as it’s extremely rare. In fact, the mutated gene responsible has only been found in about 40 families worldwide. As of 2016, only 24 cases of sporadic FFI (not inherited) have ever been diagnosed.

With FFI being extremely rare, what about the rest of us who maybe only have chronic bad sleep instead of eventual complete inability to do so?

Countless bodily systems affect, and are effected by, the hormones released by the hypothalamus and the SCN. It would take a book-length article and more medical jargon than any of you probably want to read to touch on the specifics of each reaction. Given this, I’ll simply go on to mention the results that a lack of sleep can have on your health.

For the average person, getting only 6 hours of sleep per night for 1 week has been shown to change 711 of your genes. Those changes could be at the core of why sleep deprivation is so damaging.

Cardiovascularly, sleep deprivation has been associated with high blood pressure, atherosclerosis (too much cholesterol in your arteries), heart failure and heart attack. A 2011 study from Warwick Medical School found that less than 6 hours of sleep per night gives you a 48% greater chance of developing or dying from heart disease. If heart problems don’t worry you, your risk of stroke will quadruple if you’re overweight and get less than 6 hours of sleep per night, compared to people who get 7-8 hours of sleep and are of healthy weight.

Why bring weight into it?

After just 1 night of interrupted sleep, people tend to eat more and choose high-calorie, high-carb foods, the culprit being those abnormal hormones again. When you don’t get enough sleep, your body releases more of the hormone that makes you feel hungry (ghrelin), and releases less of the hormone that makes you feel full (leptin)

Sleep deprivation also results in higher blood sugar levels, increasing your risk of developing type 2 diabetes. This is because a lack of zzz’s decreases your insulin sensitivity- basically, you’re eating more, and the body’s ability to use those sugars goes down because it won’t respond to the insulin that’s released. Not metabolizing glucose properly leads to carbohydrate cravings, furthering the problem.

If heart attacks, obesity, strokes, and diabetes aren’t bad enough potential byproducts of lack of sleep, how about mental health problems?

A 2006 study performed by Dr.’s Robert Stickgold and Matthew P Walker found that when sleep deprived you form twice as many memories of negative events as you do positive events. Further studies by Matthew Walker in 2007 showed that sleep deprived subjects were unable to put emotional experiences into context and produce an appropriate response. These results confirm countless other studies showing poor sleep habits give you a much higher risk of developing depression.

Overall brain health is also affected by a lack of sleep. The body normally gets rid of waste by the lymphatic system. In a nutshell, what is being called the glymphatic system clears the brain of waste products that increase when you’re awake.

Brain cells actually reduce in size while sleeping, allowing for cerebrospinal fluid to better flow between neurons, eliminating more waste. Studies on the subject show beta-amyloids (plaques found between neurons in Alzheimer’s disease) are eliminated twice as fast while sleeping then when awake.

Along with clearing out waste, your brain’s ability to work in general is also diminished when you avoid shut-eye. People who drive after being awake for only 17-19 hours have been shown to have the same amount of impaired coordination, judgement and reaction times as people with blood alcohol levels of .05%- almost as high as the .08% most states in the U.S. need to convict you of a DUI!

Countless studies have shown immune system problems associated with poor sleep habits. For example, you’re 3 times more likely to develop a cold when you get fewer than 7 hours of sleep per night. One theory revolves around the production of certain types of immune system cells called undifferentiated naïve T cells, and signaling proteins called Cytokines. When you’re sleeping, their production peaks. Go without sleep and you’ll have less of them, and your immune system has a problem forming its memory; the parts that recognize an invader, attack and kill it.

Increased risk of cancers are also associated with reduced sleep. Those who get less than 6 hours of sleep can expect a 50% increase in the incidence of colorectal adenomas, and sleep apnea will increase your risk of getting cancer of any kind.

If health problems in just about every system of your body are making you somewhat concerned about your sleep habits, rest assured (pun intended)- eliminating the risk is as simple as consistently getting a good night’s rest. (Again, if you’re having trouble with that, take two Sleep Smarter and Sleep Soundly Every Night and call me in the morning.)

To emphasize the point- yes, a lack of sleep will kill you. In the short term, purposefully staying awake for more than a couple weeks in a row will hasten your demise rather quickly. In the long term, chronically avoiding good sleep will kill you in countless other ways later down the road.

Those more critical of semantics might argue that it’s not the sleep deprivation that kills you, but rather the reactions by the body to the deprivation. In the end, does it matter? Either way, bad sleep habits will undoubtedly prevent the body from being able to maintain homeostasis.


http://www.todayifoundout.com/index.php/2015/04/cant-sleep-fatal-familial-insomnia/

THE PEOPLE WHO CAN’T SLEEP

April 3, 2015 Matt Blitz

Sometimes the worst nightmares are the ones you don’t have. There are numerous conditions, disorders, and illnesses that either limit or prevents the amount of sleep an individual is able to get. Many of them are quite dangerous, but none of them are as frightening or rare as fatal familial insomnia.

Prion diseases are a category of rare fatal brain diseases that can strike both humans and animals. The disease hits the nervous system and impairs essential brain functions, which can cause memory loss, decrease in intelligence, personality and behavioral changes, and insomnia. It is caused by an altered and mutated PRNP gene, inherited from a parent, that manifests itself in misshapen protein cells that can pop up in brain tissue.

In humans, there are five known prion diseases: Creutzfeldt-Jakob Disease, Variant Creutzfeldt-Jakob Disease, Gerstmann-Straussler-Scheinker Syndrome, Kuru, and Fatal Familial Insomnia. There are six known animal prion diseases, including bovine spongiform encephalopathy, or more commonly known as “Mad Cow Disease.”

The first prion disease to be identified was in the 1730s when sheep and goats in Great Britain started to come down with a mysterious illness that caused them to be irritable, lose weight, and become uncoordinated. The illness, which became known as “Scrapie,” could kill off whole flocks at a time. Scrapie was only found in Western Europe for the first two hundred years of its known existence, but in the mid-20th century, a Michigan farmer imported sheep from England and his entire flock was killed off by the disease. Today, only Australia and New Zealand are known to be free from scrapie.

Like all prion diseases, Fatal Familial Insomnia (FFI) is caused by a change or mutation of the PRNP gene, which allows it to clump together in the thalamus region of the brain, eventually destroying the cells there. The thalamus region controls sensory and motor skills, as well as regulation of consciousness and sleep. The mutated PRNP gene “eats” holes in the brain, giving it a “sponge-like” appearance. This can lead to the inability to sleep (progressively getting worse overtime) and when sleep is achieved, very vivid dreams. It has been observed from EEG readings taken while the victim is awake show signs associated with REM sleep. Essentially, they are so sleep deprived, they enter a dream-like state when awake.

Other symptoms associated with FFI include lack of controlled movement or coordination, as well as personality changes. Depending on the severity of the symptoms, it is fatal within months or could persist (and get worse) for a few years. The normal life span once diagnosed is 12 to 18 months, but it always leads to death.

Oddly, the first signs and symptoms of FFI don’t tend to develop until our 40s and 50s. While no one knows for sure why the gene sits dormant and does not mutate until then, doctors have theorized that perhaps it is spurred on or activated by the vulnerability of the brain during middle age.

While no one knew it at the time, the first recorded case of Fatal Familial Insomnia (though, possibly not the actual first case of it) was that of a Venetian doctor in 1765. Originally thought to have died from “an organic defect of the heart’s sack,” he suffered from “paralysis” and long bouts of not sleeping, symptoms that are consistent with FFI. Not only that, as documented in the book The Family That Couldn’t Sleep, he may not have been the first member of his family to die this way. The book goes on to detail the 200 year history of this Italian family and their battles with this rare genetic disorder.

There have been other profiled cases of FFI. In 1991, a Chicago music teacher named Michael Corke, shortly after his 40th birthday, began to experience insomnia. As it got worse and worse, his physical and mental health began to deteriorate. He was sent to the University of Chicago hospital and was wrongly diagnosed with severe depression. The symptoms got worse and Corke became unable to sleep at all. Eventually, doctors induced a coma. In the end, Corke died six months after the symptoms began. Some years later, his case was featured in the BBC documentary “The Man Who Never Slept.” It is also unclear if there were others in Corke’s family who suffered from this disease.

Another interesting story is the one of Vietnam man Thai Ngoc. In 2004, he claimed that he hadn’t slept for 31 years (since 1973) after being stricken with a bad fever. Despite over 11,000 sleepless nights, he claimed that he suffered very little ill physical or mental effects. Some have claimed that Ngoc is proof that Fatal Familial Insomnia isn’t always fatal. Others, primarily doctors and experts, have claimed that Ngoc is actually sleeping, he just doesn’t know it. According to Dr. Wadhwa, some insomniacs can’t tell the difference between sleeping and being awake and engage in very brief “micro-naps” throughout the day.

According to several news sources from the 1930s that tracked the man, including the January 16, 1930 edition of the Chronicle, a Hungarian soldier named Paul Kern was shot in the head during World War I and lost part of his frontal lobe. After waking up at Lemberg hospital, he (supposedly) never slept again, dying in 1955. Kern eventually returned to Hungary as a war hero and many scientists, especially Ernst Frey, professor of mental and nervous diseases at the Eötvös Loránd University, studied Kern. However, no one was able to determine why he couldn’t sleep nor how his brain and body were able to continue functioning more or less normally, despite never achieving what we’d think of as sleep. That said, as with the aforementioned Thai Ngoc, there is some thought that his brain was probably going into a sleep-like state during doctor ordered resting periods of 1-2 hours per night, even though he’d remain responsive and seemingly conscious during these periods.

This guy stopped sleeping completely too and he committed suicide.

viewtopic.php?f=1&t=10719&start=0

He said he was still going into work despite the insomnia. I couldn’t imagine having to deal with these issues if I was dependent on a job.

Well bad news/good news.

I’ve had several “brain meltdowns” beginning in Dec. 2024, when PFS hit.

The latest happened three weeks ago.

Overnight, my dizziness/disorientation/loss of fine motor control dramatically worsened, for example:

  • it is difficult to put one foot in front of the other to “walk” with my walker, I’m a combination of Frankenstein/drunken sailor
  • it is difficult/disorienting to rise from bed and put my shoes on

The sorta-good new is that periodically I become deliriously/profoundly exhausted and must lie in bed to rest (sleep?) for 1.5+ hours. I’m definitely passing into some sort of state of unconsciousness, although it sure ain’t restful sleep like the old days.

As I’m writing this at 6am, I just arose from my 5th rest (sleep?) period of the last 24 hours, so I’m resting (sleeping?) 10+ hours per day.

On a less-serious note:


balance calcium/magnesium and sodium/potassium

It’s been two months, any new developments? Are you still having those unconscious resting periods?

VERY EXPENSIVE sleeping pills Balsomra + intense exercise lets me sleep usually 3 hrs night. Plus naps/rest 2-3 times day.

Balsomra only.allows you 3 hours of sleep?

What was your reaction to benzos and non-benzos?

I have same problem, any updates? did you try benzos?

Damn, how long have you been awake?

I have a suggestion for possibly regaining sleep. It’s kinda with the same thought process as using finasteride again to cure PFS, except for sleep you don’t have to use finasteride. You can maybe go to directly to the source with another drug.

The drug is Setipiprant/Fevipiprant. They’re asthma drugs that some people think can also grow hair back. I think the trials for Setipiprant just ended and they came to the conclusion that it’s not better than current asthma treatments so they’re not going to be marketed as such. Fevipiprant is more potent and trials for that are awaiting.

I’ve read that one of the side effects from these drugs is indeed insomnia just like finasteride causes. I’ve read about people experiencing insomnia on finasteride that went away when they kept taking finasteride though. The theory on that is that finasteride constantly damages and/or resets whatever receptor is responsible for sleep, possibly the PGD2 receptor. But with Seti/Fevi you can bypass finasteride and all the DHT side effects and maybe reset the receptors responsible for sleep because Seti/Fevi are further down the line in receptor changes.

Here’s a possible outline on how they work. Could be totally false lol as I don’t know the source of the data, I think it’s some sketchy overseas lab.

So I’m thinking maybe taking these drugs could possibly restore sleep without risking other fin related side effects. I think you can still get Setipiprant, you’ll just have to find a doctor to provide it off label. Might be worth a try for you guys that can’t sleep at all. But this is just a theory from me. I don’t know all the side effects of these drugs so research it in depth. But if it can cause permanent insomnia it’s dangerous too so consider the risks.

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See my thread re working out late + Belsomra (consistently getting 5+ real sleep hours now):

https://forum.propeciahelp.com/t/intense-late-night-exercise-plus-new-sleep-drug-balsomra-currently-puts-me-to-sleep-heavy-rest-for-6-hours/30052

Did anyone ever end up trying this? I don’t know how much longer I can deal with this fatigue. Doesn’t matter how long I “sleep” because it’s never quality refreshing sleep.

Everyday I wake up I feel like I only slept for 5 minutes and like a train had just hit me. It’s almost impossible to go through life like this.