Fatal insomnia

[ConstantWorrying 8]

I'm at around 60+ consecutive hours of no sleep whatsoever, aside from maybe some kind of micro-sleep where I nodded off for a minute or two, or maybe one or two hours...I don't know because I didn't time it (I'm not even sure if I had fallen asleep...I just had the sense that I probably "went somewhere" at some point while lying in the bed for hours and hours last night). 

What makes me think this is probably the end for me is I'm still not even remotely tired. I feel about as awake as I ever normally do. 

I just knew when I couldn't sleep the first night that I was never going to sleep again. I even said it out loud. And I knew that because I was saying that, it would become a self-fulfilling prophecy.

But the self-fulfilling prophecy is here and there's nothing I can do about it. 

How much time left before I die? 

[mollyfin 366]

Take some Benadryl.

[jonathan123 2278]

Hi CW. Insomnia is another of anxiety's little tricks. We worry because we worry we will never sleep again, but nature would not allow that. We can't sleep because the mind is so active. You can see your doctor and sleeping pills may help, but worrying about it certainly will not. You WILL NOT die of insomnia. By what you say you have an overactive mind and may be hypersensitive. Most people with anxiety problems are very sensitive people. They react strongly to any emotive subject that others would just shrug off. Do you watch depressing news or depressing movies before bed? Or drink lots of coffee? Your condition could change if you look at your lifestyle and correct any behaviour you may think is causing the problem. Take care!

[Mike L 84]

I don't think you are at 60 hours of no sleep. I think the little naps you are getting in are compensating SOME. What type of stress do you have in your life? I would get with a Therapist once a week. Not a Psychiatrist, a Therapist. Also Chamomile tea helps. Everything will be fine. You may have to see a sleep specialist, but the good news is that most cases like yours are nothing to worry about clinically! 

[Iugrad91 492]

You do not have fatal insomnia. You have anxiety which is causing you to worry excessively and not be able to sleep. You are probably sleeping more than you think if you are not tired. Talk to your doctor and see if they can recommend something to help you sleep. Exercise during the day always helps me sleep better at night. I also like to do a body scan meditation before bed. Don’t drink coffee, watch TV or use the computer late at night. Drink chamomile tea before bed. Prepare yourself for sleep and repeat “I will get a good nights sleep” over and over while laying in bed. Convince your body that you want to sleep. I also use white noise apps if I am having a hard time staying asleep at night.

[AshDone 23]

Fatal insomnia is very extremely rare, the chances of you having it is literally slim to none. It’s anxiety, point blank. Have you talked to your doctor about prescibing something to help you sleep? Seroquel helped for me.

[ConstantWorrying 8]

72 hours now. 

I should clarify: I feel tired and worn out, but not sleepy. Not even remotely sleepy. I feel too tired to sleep, if that makes any sense.

And now when I lie in a certain position for a little while, trying to activate the first step of "sleep" mode, I get this sensation in my stomach. 

I can't swallow pills, either, so I'm truly dead. 

[Iugrad91 492]

The sensation in your stomach is anxiety because you are thinking you won’t be able to sleep, why can’t I get some sleep, I’ll never sleep again, etc...anxiety brain is connected to the gut so it’s not surprising you are feeling it there too. You should really talk to a doctor about your anxiety. If you truly can’t swallow pills there are other liquid formulations they make. You are not going to die from this but you should ask for some help as soon as possible so you don’t have to suffer anymore with this crippling anxiety.

[Bobnnat 468]

CW,

There have been a total of 24 cases of non-familial (sporadic) FI EVER RECORDED.  Obviously you don't have a family history of FI so my goodness, I can't fathom those odds; at least 1 in a billion. Yes, see your doctor and get tx for that awful anxiety!

[ConstantWorrying 8]

The numbers mean nothing to me.

My brain has lost the ability to sleep. There's something missing in my brain now...some neural pathway that is just gone. It doesn't exist anymore. 

My guess is FI is underreported. Thousands to millions of people wind up dead, and it's ruled "natural causes" or "sleep apnea." 

My legs are wobbling around when I walk. I'm not sure whether I should eat or not, as digesting might hinder my already 0 chances of sleeping. There is no doubt I'm going to die soon. 

[Iugrad91 492]

 Millions of people do not die from this. There are specific symptoms besides being unable to sleep that people with fatal insomnia have. It is progressive over months or years, not all of a sudden it appears and they die. You are not able to listen to reason at this point you are so wrapped up in your worry. Please seek help and talk to a doctor about your inability to sleep and your severe anxiety.

[Holls 1468]

20 hours ago, ConstantWorrying said:

I'm at around 60+ consecutive hours of no sleep whatsoever, aside from maybe some kind of micro-sleep where I nodded off for a minute or two, or maybe one or two hours...I don't know because I didn't time it (I'm not even sure if I had fallen asleep...I just had the sense that I probably "went somewhere" at some point while lying in the bed for hours and hours last night). 

What makes me think this is probably the end for me is I'm still not even remotely tired. I feel about as awake as I ever normally do. 

I just knew when I couldn't sleep the first night that I was never going to sleep again. I even said it out loud. And I knew that because I was saying that, it would become a self-fulfilling prophecy.

But the self-fulfilling prophecy is here and there's nothing I can do about it. 

How much time left before I die? 

Have you tried melatonin? It melts under your tongue. If you feel wide awake this will help you go to sleep. NyQuil also makes a sleep aid in liquid form I used to have to take it when I was pregnant Bec I was having insomnia. 

[Jae 208]

6 hours ago, ConstantWorrying said:

My brain has lost the ability to sleep. 

No... it's you freaking yourself out.

Either call your dr and get something to break this cycle or take something over the counter like Zzquil, Advil PM or one from a list of OTC sleep aids. 

[lofwyr 215]

There were times in the military you get to go this long without sleep "voluntarily."  ? You are a long, long ways from dying. You are, however, deep in an obsessive cycle that you need to find a way to break. It would definitely be time to seek medical help, and they will make very short work of this, I expect. 

[ConstantWorrying 8]

Finally got about 2-4 hours of sleep. You would think that my body would take advantage of actually falling asleep by keeping me there a while. 

[Bobnnat 468]

Your anxious brain wouldn't let you sleep longer. This proves you don't have FI. Can't you now accept that, see your doc and get perhaps a weeks worth of an anxiety med and start to c a l m  d o w n?

[ConstantWorrying 8]

Another night with zero sleep. That makes it 1 night out of 5 I got sleep, and it was only 2-4 hours at most.

I'm not even really anxious about anything except not getting to sleep. I get to a point where my eyes are closed, I'm not really thinking about anything...and still don't fall asleep.

Sleepiness is not something I am capable of feeling anymore. I also noticed I haven't yawned (without forcing it) these last 5 days. 

Last night I was winded, sore, and extremely fatigued (to the point where I was really worried about a heart attack/cardiac arrest), but not sleepy. I felt like I could pass out, but not go to sleep.

The physical exhaustion faded eventually, but no sleepiness or sleep to follow. 

At this point, I kind of wish I were bipolar. At least if it were a manic phase, there would be an explanation. But I'm far from manic. 

[lofwyr 215]

9 minutes ago, ConstantWorrying said:

Another night with zero sleep. That makes it 1 night out of 5 I got sleep, and it was only 2-4 hours at most.

I'm not even really anxious about anything except not getting to sleep. I get to a point where my eyes are closed, I'm not really thinking about anything...and still don't fall asleep.

Sleepiness is not something I am capable of feeling anymore. I also noticed I haven't yawned (without forcing it) these last 5 days. 

Last night I was winded, sore, and extremely fatigued (to the point where I was really worried about a heart attack/cardiac arrest), but not sleepy. I felt like I could pass out, but not go to sleep.

The physical exhaustion faded eventually, but no sleepiness or sleep to follow. 

At this point, I kind of wish I were bipolar. At least if it were a manic phase, there would be an explanation. But I'm far from manic. 

Have you seen a doctor? They can probably sort you out in one fifteen minute appointment.

I have a good friend who was a victim in a school shooting as a teacher, then he deployed to Iraq with the army for 15 months. He has episodes like this frequently. Do you have any reason to have PTSD at all?

[ConstantWorrying 8]

7 minutes ago, lofwyr said:

Have you seen a doctor? They can probably sort you out in one fifteen minute appointment.

I have a good friend who was a victim in a school shooting as a teacher, then he deployed to Iraq with the army for 15 months. He has episodes like this frequently. Do you have any reason to have PTSD at all?

No. I really don't think it's anxiety. 

I have been extremely anxious plenty of times in 33 years of life and it never stopped me from sleeping. Not for long, anyway. 

I never lasted past 36 hours before in my life. And when I did finally get to sleep after an all-nighter or 36 hours, I would sleep for hours and hours. 

This is a physical thing. Something just snapped in my brain, and I am now incapable of really sleeping. Even the 2-4 hours or so I got the other day, I don't really understand how it happened. It was like..."how did I wind up asleep? Last I remember, I wasn't even close to sleeping."

And the only reason I knew I had gone to sleep is I felt the familiar crappy post-sleep feelings I have had for many years now: Cramped stomach, dry nose, stiff eyelids...like I had been run over by a bus.

If I don't feel those, I know I haven't slept. 

The great irony with me is I generally feel more rested when I don't sleep and I feel less rested after I sleep. 

[lofwyr 215]

3 hours ago, ConstantWorrying said:

No. I really don't think it's anxiety. 

I have been extremely anxious plenty of times in 33 years of life and it never stopped me from sleeping. Not for long, anyway. 

I never lasted past 36 hours before in my life. And when I did finally get to sleep after an all-nighter or 36 hours, I would sleep for hours and hours. 

This is a physical thing. Something just snapped in my brain, and I am now incapable of really sleeping. Even the 2-4 hours or so I got the other day, I don't really understand how it happened. It was like..."how did I wind up asleep? Last I remember, I wasn't even close to sleeping."

And the only reason I knew I had gone to sleep is I felt the familiar crappy post-sleep feelings I have had for many years now: Cramped stomach, dry nose, stiff eyelids...like I had been run over by a bus.

If I don't feel those, I know I haven't slept. 

The great irony with me is I generally feel more rested when I don't sleep and I feel less rested after I sleep. 

Except you don't know, with any certainty, that is accurate.

You are, in fact very anxious, anxious about not being able to sleep, or you wouldn't be on this forum. That can be enough anxiety to keep you going all the time. And now that the anxiety is focused on sleep, not sleeping becomes a source of anxiety, for which fuels the cycle.

My introduction to HA was when I was 17. We lost a classmate to a brain tumor. I had heard about his horrible headaches, and within a couple days I had a headache. I obsessed and focused on that headache. It lasted for four months. Seriously. It never went away, as I obsessed and obsessed about it, to the point where I could not think of anything else. Finally, after endless nagging from me, they gave me a head CT. Totally normal. The headache was gone in an hour. 

I encourage you to go to a doctor and get a professional to examine you. If a doctor says, "there is no hope, go home and get your affairs in order," then you have your answer. I am willing to bet anything in the world that they will give you a medication that will help you sleep and you will go out like a light that same night, and here is why I think that:

Assuming you have no genetic history, you would have literally a one in a BILLION chance of being right. There have been 9 cases in the US and 24 in all of medical literature, and that timeline goes all the way back to 1765, the first recorded case. I know it isn't familial, because you would know it. There are only 100 cases a year of the familial version, and it exists in 40 known families, and they are all aware of their unfortunate status and have their children tested. 

Sporadic fatal insomnia might be the rarest of rare conditions I have seen on an HA board. 

There is no doubt you have something going on, but you are writing your own death sentence and you haven't even gone to see a doctor and have condemned yourself to a disease that is super, super rare.  You honestly have a vastly higher chance of being hit by lightning six or seven times while going to the doctor than you do of having sporadic fatal insomnia. And that is not an exaggerated statistic. 

 

[ConstantWorrying 8]

11 hours ago, lofwyr said:

Except you don't know, with any certainty, that is accurate.

You are, in fact very anxious, anxious about not being able to sleep, or you wouldn't be on this forum. That can be enough anxiety to keep you going all the time. And now that the anxiety is focused on sleep, not sleeping becomes a source of anxiety, for which fuels the cycle.

My introduction to HA was when I was 17. We lost a classmate to a brain tumor. I had heard about his horrible headaches, and within a couple days I had a headache. I obsessed and focused on that headache. It lasted for four months. Seriously. It never went away, as I obsessed and obsessed about it, to the point where I could not think of anything else. Finally, after endless nagging from me, they gave me a head CT. Totally normal. The headache was gone in an hour. 

I encourage you to go to a doctor and get a professional to examine you. If a doctor says, "there is no hope, go home and get your affairs in order," then you have your answer. I am willing to bet anything in the world that they will give you a medication that will help you sleep and you will go out like a light that same night, and here is why I think that:

Assuming you have no genetic history, you would have literally a one in a BILLION chance of being right. There have been 9 cases in the US and 24 in all of medical literature, and that timeline goes all the way back to 1765, the first recorded case. I know it isn't familial, because you would know it. There are only 100 cases a year of the familial version, and it exists in 40 known families, and they are all aware of their unfortunate status and have their children tested. 

Sporadic fatal insomnia might be the rarest of rare conditions I have seen on an HA board. 

There is no doubt you have something going on, but you are writing your own death sentence and you haven't even gone to see a doctor and have condemned yourself to a disease that is super, super rare.  You honestly have a vastly higher chance of being hit by lightning six or seven times while going to the doctor than you do of having sporadic fatal insomnia. And that is not an exaggerated statistic. 

 

The problem is, there's no test for this (that I'm aware of). 

It's likely some kind of really deep psychological block that is working on my subconscious, but that kind of stuff is generally unfixable. In my experience, even when you come to "understand" stuff like that, it doesn't help. The anxiety/phobias are still there. You know exactly why they're there, but it does nothing to get rid of them.

As for medication: Even if it worked, the writing is on the wall when you need medication to sleep. You'll build up a tolerance to it over time and become an addict, and eventually overdose and die. That's how so many celebrities have gone down. 

If I need medicine to sleep now, why wouldn't I tomorrow? And next week? And next month? And next year? 

[mollyfin 366]

You can't OD on Benadryl.  Or you could, I GUESS, but it'd take a while, considering my friend's kid chugged an entire bottle when he was four or five and the pediatrician was just like "He might be sleepy for the day."  He's off at college now so clearly it didn't affect him too negatively!  I avoid rx sleeping pills because my body seems to hate them - I usually sleep an entire day on the first dose, and then every dose after nothing happens, unless I skip it for a while and then it's another entire day of sleep, repeat cycle; I have the same issue with melatonin supplements though you might want to try those as they're non habit forming - but children's Benadryl usually works if I'm desperate.

[lofwyr 215]

1 hour ago, ConstantWorrying said:

The problem is, there's no test for this (that I'm aware of). 

It's likely some kind of really deep psychological block that is working on my subconscious, but that kind of stuff is generally unfixable. In my experience, even when you come to "understand" stuff like that, it doesn't help. The anxiety/phobias are still there. You know exactly why they're there, but it does nothing to get rid of them.

As for medication: Even if it worked, the writing is on the wall when you need medication to sleep. You'll build up a tolerance to it over time and become an addict, and eventually overdose and die. That's how so many celebrities have gone down. 

If I need medicine to sleep now, why wouldn't I tomorrow? And next week? And next month? And next year? 

I get that, you are in an anxiety spiral. It is likely all of us posting on this forum have been there. And we are almost NEVER right. Ever. 

The other forum has tens of thousands of posts from thousands of people over almost two decades. In that time two people have been right about their diagnosis. Two. They are both fine, by the way, in spite of dire predictions. 

And in that time EVERY single other poster was 100% sure they had the disease they worried about, and every single other poster was wrong. The only thing they did have was anxiety.

You are in an anxiety spiral now, convinced you have something that is literally almost impossibly rare.  The spiral will fuel itself until you break it. You have to want to do that, and make an effort to do so, or it won't happen. 

Here is a pretty good article on sleep and anxiety and how to find sleep when you have anxiety disorder:

https://www.thecut.com/article/what-to-do-when-you-worry-yourself-awake.html

At this point, you really need to talk to medical and psychological professionals, I am not sure there is anything I can say that will help you out of the spiral you are in. And deep psychological blocks are not generally unfixable, people fix them all the time. The thing is, you have to want to fix them, and you have to work at it. It sounds like you have just completely surrendered to anxiety, and only you can decide to fight it, we cannot do that for you. =(

[Holls 1468]

You should see your PCP.. getting a Dr to talk to you an examine you will help relieve your fear and help you move on which you really need to do. Your Dr can prescribe a sleep aid which you also desperately need. Your anxiety is so hightened your body needs a break. You won't become depended. And most celebrities aren't over dosing on sleep aids.. it's hard drugs AND sleep aids. I'm not sure what's stopping you from going to your Dr???? That's should be your priority right now

 

[ConstantWorrying 8]

This Chinese man died after staying awake for only 11 days, and he didn't have FFI:

https://www.huffpost.com/entry/man-dies-11-days-no-sleep-deprivation-jiang-xiaoshan_n_1631703

This is why I don't trust the literature on how "rare" it is. They have weird, specific ways of defining dying from insomnia, but just regular anecdotes can show that it's inaccurate.

I just tried once again to get some sleep and failed. Tomorrow morning will be day 7. I simply lost the ability to sleep. I don't think it's from a "prion" disease. I think it's mental. But it's a permanent mental block that can't be removed and that is going to kill me.