Please Help !! So Scared about Insomnia !!

[TheLostSaga]

Okay to preface, I have had insomnia basically all my life, I have sleep-onset insomnia which means that it's hard for me to fall asleep.

Well fast forward to yesterday, I woke up from a 7 hour sleep at around 10pm (terrible I know but my schedule has been a disaster for some time.)

I stayed awake until around 3am the next day and figured I should try to sleep despite the fact that I wasn't feeling sleepy or really tired. I laid down in bed, and took probably I think like a 10 minute nap. I DREAMED during those 10 minutes, which kinda unsettled me, but since I couldn't actually sleep for long and was just tossing and turning I decided to try to stay awake the entire day to try to fix my sleep schedule.

Well fast forward to 8pm today, throughout the day I'd have moments where I felt like I could pass out, which then immediately went away and I was wide awake again. I decided to try to sleep however and .... nothing.

I couldn't sleep at all, I was just tossing and turning. Again the same thing happened where I slept for probably 10 minutes and DREAMED, I dreamed about things I actively was having my mind before I lost consciousness, I don't 100% remember the dreams, but there you have it. I also have hypnic jerks both when I tried to sleep at 3am and then again at 8pm. It won't be a full body 'jerk' but my shoulder will jerk up or my leg will jerk and it will be enough to put me wide awake again and sabotage any chance of sleep I could have gotten. I have these jerks while wide awake, but have only ever had this persistent hypnic jerks once before when I was having a bad panic episode.

I also still don't feel tired or sleepy. It's been over 24hrs since I last slept and I still don't feel like I have to sleep despite knowing I should and that I need to.

Sporadic Fatal Insomnia (SFI) has always kinda been in the back of my mind every time I have a bad insomniac episode but it's never been like this before and honestly I'm terrified. I tried to take a Valium and that didn't help at all.

I'm scared the dreaming so fast (within 10min) is a bad sign, is this vivid dreaming? Or are those only ones where you 100% remember them. What about never feeling sleepy or even tired?

I know right now a big reason why I can't sleep atm is because I'm having a panic attack currently but I was really calm and at peace earlier. I'm so scared I've been shaking really badly and all I can think about is how I'm never going to be able to sleep again. Any reassurances or similar experiences that any of you could share would help a lot.

[WiseMonkey]

Hi sorry you're going through this. Anxiety is the worse for not letting you sleep. Many years ago when I was extremely depressed I didn't sleep for 4 months, but eventually I did after finding the right antidepressant. I'm still alive 30 years later, although my sleep is still sporadic and poor.
I also find that if I have a good sleep one night then the next will be bad. These days I just don't worry about it, get a cuppa, take it back to be then read. After and hour or so I'll have a couple of hours sleep then get up and go about my day.

I believe you can dream anytime, even with light sleep.

[TheLostSaga]

Update: I slept about 2 1/2 hours last night from about 4am - 7am. I still don't feel hardcore tired and forget about feeling sleepy.

I just sat up in bed and started sobbing, I've always had trouble falling asleep, but to actually have difficulty staying asleep is pretty new to me and really demoralizing. I'm not sure what to do at this point, I'm terrified and I know the best thing to do is just lay in bed and not worry about whether you sleep or not but every time I try that there is a ball of anxiety in my chest that won't go away no matter how much I will myself to relax.

[ErinKC]

I'm so sorry you're going through this, it sounds so difficult. But, reading your post, it seems completely normal based on how you describe your sleep. You've messed your sleep cycle up pretty badly, so your body has no idea what to do! The dreaming right when you fall asleep is also always what happens to me when I'm overtired. Your body and mind WANT to sleep, but your anxiety is preventing it. I think the absolute best thing you could do is force yourself back onto a normal schedule. Get into bed at a reasonable time, like 10 or 11pm. Turn the lights down, read a book, drink tea, anything calming if you're not ready to actually sleep. And then try to rest as best you can.

Then, get out of bed at a normal time in the morning and try and get out and do things. Go for a walk, see friends, etc... And repeat.

Are you working? My brother hasn't worked in some time and his lack of a normal sleep cycle has made his anxiety and depression so so bad. It kind of detaches you from everyone else's reality, if that makes sense.

[TheLostSaga]

Are you working? My brother hasn't worked in some time and his lack of a normal sleep cycle has made his anxiety and depression so so bad. It kind of detaches you from everyone else's reality, if that makes sense.

I have been unemployed for some time now, and I can definitely relate to feeling like I'm kinda of disassociating when my sleep pattern is wildly out of sync with everyone else, or if I wake up at night.

I don't require a lot of sleep to actually function, I used to go to school on four hours of sleep sometimes, but the fact that I cannot remain asleep is getting to me.

I try to lay down and relax but I have (and always have) a hard time shutting my brain off, or when I do finally manage to relax, there will be a noise or movement that jolts me awake. I'm emotionally struggling and just constantly in a state of fear.

The longer I stay awake, the less tired/sleepy I feel, the more distraught I become.

[ErinKC]

I have been unemployed for some time now, and I can definitely relate to feeling like I'm kinda of disassociating when my sleep pattern is wildly out of sync with everyone else, or if I wake up at night.

Having watched this wreak havoc on my brother's mental health, I really recommend (just as someone with experience, not as an expert by any means) trying to force yourself into a schedule. Getting a job - even something really simple would be best, but if not actually write yourself out a schedule. Like, 9am - wake up
9:30 - eat breakfast
11:30 - go to the library (or coffee shop or store)
1:00 - eat lunch
2:00 - read a book for an hour

etc, etc...

And, think of some kind of goal or something to work towards, like finishing a book or running a 5k or anything.

I really think your sleeping problems are all a vicious cycle compounding on itself. The less you sleep the harder it is to sleep. I learned this when I had a baby. You'd think keeping your kids up later would mean they'd sleep later - NOT SO! Sleep begets sleep. I learned that as a product of evolution, the human brain will actually start releasing adrenaline at a certain point of over-tiredness. This is why kids who are overtired become more hyper and crazy. And why, I presume, a lack of sleep makes anxiety worse. It's because our brain notices how tired we are, but we don't go to sleep. So, it starts to think there must be a survival reason that we're still awake, so it helps us out by pumping out chemicals to keep us up so we don't get eaten by a tiger or something.

Your lack of sleep is teaching your brain that you need to stay up for some reason and your anxiety is exacerbating it. The more you sleep the better you will sleep!

[TheLostSaga]

Thank you, I will try that. I'm going to attempt to take some ZZZQuil tonight and see if that actually helps me to at least get the ball rolling and sleep. But I will try to follow your advice and set myself up with a schedule to ensure I don't wind up repeating this sleep pattern.

I will update later on!

[TheLostSaga]

So I was really tired around 4pm yesterday and actually managed to sleep sans pills up until 8pm. I think I got scared that I wasn't going to be able to fall back asleep so I took the ZzzQuil.

I don't know if they worked or if they didn't, because I fell asleep after that - slept until 12am, fell back asleep, woke up again at 3am, then fell back asleep until I finally got up at 5am.

These sleep disruptions - are they normal? I didn't get up or feel wide awake, it was more like I wanted to look at the clock to see the time. Is this due to my anxiety?

I do feel rested, and I do intend to try to keep up with a schedule perhaps going to bed at around 12am or so in order to get 6hrs and wake up at 6am. Although I'll be honest, I am really anxious and afraid I'll be unable to do a repeat performance and wind up not sleeping again.

[ErinKC]

The constant waking is almost certainly from your anxiety. You've become consumed by a worry about sleeping normally, so it's making you so overly aware of how long you're asleep.

I sleep very well normally, but the other day I had to wake up early for an appointment. I'm a stay at home mom, so it was the first time in ages I had to set an alarm for something. Just the idea in my mind that I'd have to wake up earlier than normal to an alarm totally disrupted my sleep. I woke up 3 or 4 times throughout the night to check my clock and see how much longer I had to sleep. That hadn't happened to me in years, since the days when I was working and would have to get up early and would stress out about not getting enough sleep.

[HelloPanda23]

Okay to preface, I have had insomnia basically all my life, I have sleep-onset insomnia which means that it's hard for me to fall asleep.

Well fast forward to yesterday, I woke up from a 7 hour sleep at around 10pm (terrible I know but my schedule has been a disaster for some time.)

I stayed awake until around 3am the next day and figured I should try to sleep despite the fact that I wasn't feeling sleepy or really tired. I laid down in bed, and took probably I think like a 10 minute nap. I DREAMED during those 10 minutes, which kinda unsettled me, but since I couldn't actually sleep for long and was just tossing and turning I decided to try to stay awake the entire day to try to fix my sleep schedule.

Well fast forward to 8pm today, throughout the day I'd have moments where I felt like I could pass out, which then immediately went away and I was wide awake again. I decided to try to sleep however and .... nothing.

I couldn't sleep at all, I was just tossing and turning. Again the same thing happened where I slept for probably 10 minutes and DREAMED, I dreamed about things I actively was having my mind before I lost consciousness, I don't 100% remember the dreams, but there you have it. I also have hypnic jerks both when I tried to sleep at 3am and then again at 8pm. It won't be a full body 'jerk' but my shoulder will jerk up or my leg will jerk and it will be enough to put me wide awake again and sabotage any chance of sleep I could have gotten. I have these jerks while wide awake, but have only ever had this persistent hypnic jerks once before when I was having a bad panic episode.

I also still don't feel tired or sleepy. It's been over 24hrs since I last slept and I still don't feel like I have to sleep despite knowing I should and that I need to.

Sporadic Fatal Insomnia (SFI) has always kinda been in the back of my mind every time I have a bad insomniac episode but it's never been like this before and honestly I'm terrified. I tried to take a Valium and that didn't help at all.

I'm scared the dreaming so fast (within 10min) is a bad sign, is this vivid dreaming? Or are those only ones where you 100% remember them. What about never feeling sleepy or even tired?

I know right now a big reason why I can't sleep atm is because I'm having a panic attack currently but I was really calm and at peace earlier. I'm so scared I've been shaking really badly and all I can think about is how I'm never going to be able to sleep again. Any reassurances or similar experiences that any of you could share would help a lot.

Ok, I'm going to give you the facts I have gathered from researching for a decent amount of time about SFI. First off, your chances are very, very, very, low. Only 8 cases have ever been medically recorded, worldwide. This means, your chances of getting SFI is as rare as 1 in a billion. These chances of you getting SFI lower even more and more based on your age as well. Most people whk get SFI are around the age of 50. Youngest ages ever recorded were 33 and 13. If you are around 20-40, your chances of SFI are 1/7 billion, due to the fact that only one case has been recorded in this age gap, or at least based on my research. If this isn't enough to make you realize how insanely rare this disease is, I'll add on. SFI typically starts off with serious cognitive issues. This disease is a prion disease, and before it starts to affect our sleep, it first cripples our lives. You would have dementia, many issues remembering memories, could barely even stand (would possibly need a wheel chair), you'd have to eat through a tube, and etc. Funny thing is, people make a huge deal about the insomnia part of SFI, and FFI, but the other symptoms are the scariest parts of the disease. The prions do so much damage that if you truly had SFI, you wouldn't be here, and possibly wouldn't even be able to type up these posts, or think normally. You straight up go crazy before you end up losing your ability of sleeping, and trust me when I say this, that's not the worst part of the disease. I'll even add more to get this stupid thought out of your head. When we sleep, we usually go into REM sleep, and that refreshes us and makes us wake up feeling better than when we had slept. People with SFI end up losing this ability and so whether they get unconcious or not, they won't be able to get that good feeling of waking up. It'll simply be like them closing their eyes and opening it a second later. No difference whatsoever. If you see a dream while asleep and remember it while you're awake, you have gone through the REM stage of sleeping, which means you don't have SFI. All this information should be enough to prove that you do not have SFI and you're simply stressed right now. I'll add this last bit to give you a detailed explanation of how unlucky these people were to get SFI.
The reason SFI is super rare is because the only way to get it is through exposure to prions. Ways people get prions are through head surgeries, tainted blood, infected meat, and families. If a person has head trauma, and get a surgery as a result, they are much more vulnerable to fall victim to prions. The kid, who was of 13 years old age ended up having 2 concussions between a 4 month period. I think this messed up his brain and caused his proteins to misfold and form into prions. Not certain if this is the case, but it's the only logical way of him having SFI, considering he had no family history. Tainted blood is practically impossible because of how advanced technology is. Blood is checked for any diseases before being handed for use towards patients. The other way is infected meat. When the mad cow disease breakout happend, a lot of meat was sold and used by consumers. These meats contained prions, and so those who ate them became infected. This then caused the prions to cause deadly disease like vCJD, or even SFI. The most common was vCJD though, or at least I think. Meat is very carefully handled and treated, so this shouldn't be a problem either. Sadly though, elks can carry protein on with their bodies as well. Those who hunt a lot and kill elks may have potential exposure to prions if they get hands on with the infected animal. Eating it would be the best way to completely put them in complete danger of prion disease, but I'm also pretty certain that handling the meat is also dangerous. If none of these things have happend to you, your only source of risk left is through your family. Other than that, you can't have this disease, no matter what. This is the reason behind why this disease is so rare, and i honestly wish I learned about this exactly when i learned about this disease. It simply helps us understand why we don't have it, and why we will most likely never get it. If you need anymore help with questions, i'd gladly answer. Good luck!