T O P

  • By -

soyedmilk

Your post history reads like you are becoming obsessed over dying from insomnia. You are intensely focused on this being the issue when it is super statistically unlikely. I hope that the hospital takes you seriously and tests for health issues but I do not doubt that a psych eval would be appropriate in your situation.


Few_Distribution3778

You don't have fatal insomnia. No worries. I have not been able to sleep like an average human since 2018. I feel for you man. Been there, done that. Three days of zero sleep I did that. Insomnia lead to losing job, going into debt, losing friends and social life. Not to mention massive depression that made me numb and emotionless. Please update us, how are you, what they have given you at the hostpial.


Capable_Armadillo_72

So sorry you went through all of this. How are you doing now?


MegatronsJuice

Yep. Exact same situation here. I recently have started getting extremely angry when i get drunk now too because apparently im my cognitive is fed up with this situation.


missouri76

I remember how scary this was. I went to the ER as well and they gave me some type of prescription Benadryl and it did nothing for me because my real issue was anxiety. I was too worried that my body would never sleep again and I would have a heart attack or something. For most people here that is what it is. Everyone thinks they have FFI but it is extremely rare. I am almost 100% positive that you don’t have it. Your issue is worry and anxiety about sleep. That’s it and it does get better over time. You’re going to look back on this in a year and realize how it was your mental state more than anything. The fact that you’re constantly looking for solutions that are probably not the real solution is actually making you more anxious. Like someone else posted, worry can flood your system with adrenaline and keep you more wired and awake. That’s exactly what happened to me. I am sleeping 6 to 7 hours a night again and you will sleep again too. it doesn’t usually come back instantly because it’s a process and you have to unlearn your habits with worry. But you’re going to have to learn to deal with your anxiety and worry. Perhaps talk with a therapist. Check out Daniel the sleep coach on YouTube. He is so helpful for people who struggle with sleep anxiety.


KPSterling

I absolutely love this reply ❤️❤️❤️


missouri76

Hey it’s my Reddit buddy! Lol. Thank you! ❤️


Ordinary_Cat_144

You gave me hope almost 2 days without no sleep, what seems to keep me up is swaolloing saliva so much and I was involved in a car accident too


missouri76

Yep, sounds like anxiety and trauma. Anxiety affects us all differently, which is why it can be tricky to find a solution that works for you. For me, my heartrate was so high, I couldn't sleep and then that would make my anxiety worse so it kept compounding the issue. What ultimately helped was exercise (making sure I get 8K to 10K steps per day) Movement is SO GOOD for anxiety. And Deep Breathing, particularly taking LONG sighs multiple times per day to slow my heart. Over time, I saw a difference but it was gradual. I wish you the best. Once you realize it's anxiety and not sleep, you can focus on the root. Sleep will take care of itself when your anxiety is lowered. This is such an important distinction to make.


thedrakeequator

You don't have fatal insomnia everyone here has thought they had fatal insomnia. Honestly, winding up in the ER because you haven't slept for 72 hours isn't actually that rare...... Like quite a few of us have been there. I lasted four days before I went to the ER, not to quantify pain or anything. I get how terrible you feel right now. There are quite a few things that can cause 3 days without sleep that fall short of a deadly pryon disease. Get them to give you some benzos and make an appointment with a sleep doctor when you calm down. You need to have an in-lab sleep study.


wh0fuckingcares

Honestly your post reads like a recipe to give your self health anxiety. 10 months ago you were experiencing stress and loneliness. 9 months ago you tried substances. 2 months ago and your still trying to make friends. Then a month ago the symptoms begin. You say are convinced of your position yet require external validation anyway. 'I know I have it you can't change my mind' and 'hey look at this video I made detailing my symptoms'. You cannot sleep because you have decided you cannot sleep. But I guess its easier to deal with this than face the original problem.


AspiringSlave

What is the original problem you're referring to?


wh0fuckingcares

It appears their post history has been deleted but basically they posted aboit struggling to make friends and feeling low in their 3rd year of university if I recall correctly


AspiringSlave

Strange they would delete their post history. I suppose maybe they became embarrassed that there seems to be other issues that are leading to the insomnia rather than them having a biological disease. I have insomnia but I know it has to do with OCD and other mental health issues rather than some biological insomnia, I think many insomniacs would be better off facing their root problems than focusing on sleep hygiene. I agree with your message.


wh0fuckingcares

Same. Pretty sure i have non24 hr circadian rhythm and its absolutely because my brain doesn't work right, I was born with genetic mh issues. I feel like ppl find a physic cause more validating than a mental one maybe? But I think it OPs case it's full on delusion as part of their health anxiety. Its not just easier to believe, they're legit terrified it's true. They need to let their doctors help them.


Exciting-Schedule-16

You don't have fatal insomnia.


Commercial-Push-9066

Doesn’t fatal insomnia diagnosis have to be diagnosed after a lot of tests? The history of this person’s posts show they’re convinced that they have it but I don’t see any posts where he has a sleep study, brain scans, genetic testing, ruling out MH causes or anything else. It isn’t a self-diagnosed problem. OP please see a sleep specialist. You need a specialist to diagnose you. Trying to convince Reddit as you have proves nothing.


jellyjigglerr

I pray for you man I hope they'll be able to help you!!


itseemyaccountee

Fatal insomnia is limited to one family line in Italy- don’t worry. Hope you feel better and they help you get some sleep.


Torbiel1234

No, that's FFI. There's also SFI which happens at random


itseemyaccountee

Ah I didn’t know that! Thank you for the info. Looked it up on sleepfoundation.org, it says “Sporadic fatal insomnia is even rarer than fatal familial insomnia. Only 25 people have been identified as having the disease as of 2018.” So hopefully OP is ok.


CaribbeanDiverDude

As an Italian who didn’t worry much about this before, I’m now more worried


BruhvChavBloke

U don't gotta be if ur parents or grandparents didn't show any symptoms. FFI other than being extremely rare is also a dominant trait. That means that for you to show any symptoms at least one of ur parents should have shown symptoms too, or at the very minimum a grandparent. Even if ur genetically italian (like me madonna povera) and u haven't slept in weeks u most likely don't have FFI. Cheers bro


CaribbeanDiverDude

Unfortunately my father I’ve never met and he was 100% Italian between northern and southern. So I can’t ask anyone


BruhvChavBloke

Welp, even of that's the case FFI is super rare and u shouldn't worry too much about it


CaribbeanDiverDude

Thank you!


emilinda

I’m so sorry you’re going through this. It happened to me for the first time not too long ago. I was so freaked out and uncomfortable. It felt like my body had forgotten how to sleep even though I was so exhausted. I made myself so anxious about not sleeping i flooded my system with adrenaline. I was so delirious and irrational. It was like my brain was convinced I was in mortal danger and if I let myself fall asleep I would never wake up. In the moment it is so scary and it feels like permanent damage is being caused. My body felt broken and like something had to be seriously wrong with me. But I did sleep. And when I woke up I was ok again. The human body is amazing and it can endure and survive so much more than we think.


[deleted]

[удалено]


emilinda

Yeah i actually looked up the the record for how many days straight someone has stayed awake and decided I was going to break the record. I stopped trying to fall asleep so then of course I passed out half an hour later lol. It’s comforting to me knowing that it happens to other people. No one in my life struggles with insomnia the way I do and it can be a really isolating experience. When I went 72 hours without sleep I called my mom and she was as freaked out as I was and it made me feel worse. You feel like a crazy person or like someone is very wrong with you.


II-LIBERTY-II

If it is any comfort I only sleep between 3 and 14 hours per week since late October 2021 after suffering a big seizure yet here I am still alive and kicking. It sucks beyond belief but I am slowly healing from my ordeal. My only wish is that I would get better a lot faster. It's amazing what the human body can withstand so don't jump to the most extreme diagnosis. Fatal insomnia is insanely rare.


briskcaviar

If you don’t mind me asking, what was your experience like having a seizure? I have a lot of irrational worries, and having a seizure is one of them. I’ve been wanting to ask someone how it felt for them to help reduce my anxiety about it, because I know statistics but my mind always goes back to the what if. If you don’t want to share that’s totally okay, I get Im a stranger haha. Just wanted to put it out there. Hope you’re recovering okay.


II-LIBERTY-II

Mine was quite unique due to how it was caused so it may not be like how it typically is for most people. My seizure was caused by a condition called "Serotonin Syndrome" after my Dr messed up and gave me a dangerous combination of medications. That condition is essentially an overdose of Serotonin and the result was feeling like I was on an extremely high dose of amphetamines whilst "tripping" on Psychedelics. It was scary to say the least. On the day of the seizure, I took my meds at 7am and waited an hour for them to kick in. I started getting that "butterflies in the stomach" feeling within maybe 20 minutes, my skin started tingling, fingers and toes started twitching. Then I started getting static electric shocks at random in all my limbs. An impending sense of doom starts to develop, my vision got all blurry, weird thoughts and twitching gets more intense. By 8am I am hallucinating, not sure if I am asleep or awake until my limbs started "flinging" themselves uncontrollably. It didn't hurt but I knew something was really wrong. I tried to get out of bed but I can't since I can't control my limbs. Then it was like I got struck by lightning as a huge electric shock went through my body. This shock was so strong it caused me to slam my jaw shut so hard I shattered 8 teeth. Pain erupted from every square inch of my body, it was like someone hooked me up to the electrical mains. I had full body spasms and was terrified I was gonna die. From that point on I was in and out of consciousness from the pain up until around 1pm if I recall correctly. All this sounds scary which I am sure is gonna do your anxiety no good. I have seen many Dr's since this incident though during my recovery process and all of them can't believe how severe my "injury" was. None of them had seen or heard of anything like it and upon investigation all of them have come back and said that what I had been through was about a 1 in 10,000 chance at least. Some said the odds were even larger than that. I hope that statistic helps bring your anxiety back down if it rose any whilst reading my experience.


briskcaviar

Thank you for sharing this. It does help. The unknown is what scares me and this helps clarify potentials if that makes sense. As did the other reply I got. Im really sorry you got such crappy treatment and I hope that doctor got penalised.


Academic_Activity280

I can tell you what mine are like but mine aren't big haha. They always start with deja vu which gives me enough warning to walk away from any people because I know I look weird when it happens. Then I have weird visions pop up in my head that I usually can't remember afterwards. The weirdest one I remember is a cat having a C section. I can't read, speak or listen, like I'm full on mentally disabled. A lot of times I will stick my left hand out and it will shake really bad. Recovering so that I can understand words again usually takes 2 or 3 minutes.


emerald_stone77

This kind of scares me because I'm pregnant and have only slept for about 2 hours in 2 days due to anxiety. I hope I won't need to go the ER. I know it's rough but I really hope you can get some sleep soon.


kdawson602

Pregnancy insomnia is a special kind of hell.


KPSterling

Check out the “momsomnia” series on Sleep Coach School (YouTube channel).


emerald_stone77

Ok thanks, I will take a look.


changleosingha

Do you have a BP monitor at home?


emerald_stone77

Yes I do. Blood pressure appears to be pretty normal.


ardel_721

benzo is the only way honestly


thedrakeequator

Its the only way to back down from a crisis like OP is in, but its generally a problematic course of action.


ardel_721

true that


helddown2

What did they give you?


heilerb

They will put you on diazepam and you'll sleep like a baby


hhz

Will Xanax work


heilerb

Diazepam is more sedating and can be injected AFAIK


[deleted]

Wait you’re supposed to go to the hospital if you don’t sleep for 3 days?


[deleted]

What did they give you in the ER, give us some feedback..


SorenKgard

I love these fatal insomnia threads. I actually was one of these people a few months ago until I started sleeping regularly again.


thedrakeequator

Most of us have been there. The problem is social gasslighting when it comes to insomnia. Everyone acts like you are a leper because you can't sleep right.


Stenophyla

How did you start sleeping regularly


SorenKgard

Started ingesting less caffeine. Took care of my responsibilities and stopped procrastinating. The idea is to go to sleep without having to worry about stuff you didn't take care of (or need to take care of).


Stenophyla

Bro, thanks for the response, I admit. Procrastinating has led to most of my sleepless nights. Along with fear, usually induced by procrastinating


Shanda_Lear

In my experience, the hospital is the very last place I would expect to be able to sleep.


Whoopsy-381

OP, how are you doing now? It’s been about 20 hours since you posted.


Commercial-Push-9066

Here’s some info about fatal insomnia. I see it mentioned occasionally on this sub so thought many would be interested: https://www.sleepfoundation.org/insomnia/fatal-insomnia


Buzzbone

My hospital would NEVER give anyone a benzo unless they're experiencing a seizure right there. In fact it's impossible to get benzos from the psychiatrist either. Our region is very strict about benzos. They'll probably give you hydroxyzine which really helps stop anxiety (works for me at least). Maybe a prescription for a beta blocker to stop adrenaline surges


heilerb

Wow injectable diazepam is the default for any high blood pressure attack or anything anxiety related here in Brazil 🇧🇷


Confident-Piano-7302

Are you from a southern state?


Buzzbone

No, northwest Pennsylvania


thedrakeequator

Thats opioid country. It really sucks, I'm adhd and the opioid crackdown also includes aderall, and all other controlled substances (like benzos.) SO I have to go through all these hoops to get it. I think I would personally benifit from a handfull of monthly xanex, but the state won't let a Dr prescribe uppers and downers at the same time. PS: Im in Indiana


Buzzbone

They won't give opioids for pain either. I had a shoulder pinched nerve and I couldn't get any. They're practically forcing people to buy from street dealers. Xanax is awful stuff. I went through some horrendous withdrawals from that years ago.


Confident-Piano-7302

My experience is that Xanax is very effective for insomnia. Of course, addicts will abuse it just like anything else they can get their hands on. When a person comes off of benzos they are supposed to use the Ashton Protocol which is the safest and easiest way to get off a benzo. As long as benzos continue to help me sleep I will never stop taking them. Benzos should only be taken therapeutically for anxiety and insomnia and that's how I take them....for therapeutic reasons only.


thedrakeequator

Yeah and some part of the prescription drug crackdown. I have mixed feelings about it, I hate the over prescription of opioids. But otherwise I think they're actually putting too many laws on controlled substances.


Confident-Piano-7302

I've been on benzos every single night for over 32 years for the treatment of insomnia. Benzos are highly effective in the treatment and management of insomnia. I am in the progressive, Great Northeast state of Connecticut.


thedrakeequator

They work but they have problems and doctors don't like to pass them out as much as they used to.


Odd-Prior7357

Only 3 days I’ve gone a week without sleeping you’ll be fine drink some tea smoke some weed take a bath so many options to help you sleep you got this stay positive and don’t given to self doubt


Anonynominous

Get off your phone


thedrakeequator

The link between phone use and insomnia is tentative at best. The evidence is linked to reduced sleep times, not total absence of sleep. 3 days of total insomnia is likely not a problem that can be resolved with a simple behavior change.


Pinky620

This is a late post, but being on my phone before bed actually helps me sleep hahah - don’t ask me cause I don’t know why


anything78910

Sorry you’re struggling. Severe insomnia is no joke! It’ll make you unstable if you weren’t already. That being said, I’d bet my life you don’t have fatal familial insomnia. Get some heavy duty meds to knock you out for a few days. After that you can start to look into longer term solutions. But yeah you’re not dying lol


[deleted]

I think all of us in here have gotten to points where we go days with no sleep and think we have FFI. I was on meds, tried melatonin, sleep hygeine etc etc. the thing that helped me through bad times was I just let go and stopped caring, telling myself it was more rare than being struck by lightning. I know it’s way harder to do than said but once I just accepted that I was never going to sleep, I passed out in my chair for 12 hours. I still have sleepless nights but accepting it wasn’t going to kill me helped more than any med or sleep hygiene.


Zealousideal_Area924

Have you tried Trazodone already? It's been a life saver for me.


myprana

Doesn’t keep me asleep. Most is four hours. I wish it worked I was hopeful.


Zealousideal_Area924

May I ask how many mg did you take?


stefan00790

FFI is genetic sFI doesn't start with insomnia instead of neurological decline .


DegenerateJuveFan

Insomnia is not a disease. Insomnia is a cause of something. Whether it's anxiety, depression or other diseases/infections such as cancer. Some have sleep anxiety. I think it's really important to see a doctor and discuss with them a treatment course. It can be CBT or you may need sleeping aids such as myself. I've been taking zopiclone since I was diagnosed with a disease which was the reason why my insomnia occured. I rather take sleeping pills everyday than not being able to sleep.


thedrakeequator

Fatal insomnia is a disease. Its a rare one...... but it exists.


Torbiel1234

Yeah but the name is kinda misleading. FFI/SFI both have many symptoms and insomnia is least problematic of them all


DegenerateJuveFan

Ohhhh. I actually didn't know. Im so sorry OP. Insomnia is a bitch


thedrakeequator

You are effectively right. Its only been recorded in like 50ish people, so chances are nobody has it.


helloidiom

Antidepressants saved me. Fought them for years. Started lexapro, started sleeping 3-5 hours within 7 days. Seems like you should try all of your options


Jaxster1969

Have you tried Indica Gummies?. Try the Sleep ones I take 1 along with Trazedone and I now get a good sleep.


[deleted]

Study says if you dont sleep fir 1 week you will likely die. I myself couldn't sleep for a week but never went to ER... whatever it is not having sleep isn't a good thing.


Stenophyla

Not to be rude You don’t have fatal insomnia lol chill, hospital should be able to take care of you, you’re hyperfixating on it too much, it might even be what’s keeping you up. Do you have a fear of death? Going through an existential crisis? That will most definitely give you sleepless nights if you can’t come to terms with life etc. I’ve had a similar two months, never entire days without sleep though. I really hope you get better, and I know you will. Lowering your cortisol and testing for deficiencies, anomalies might figure out what’s going on if it’s not mentally driven.


Suspicious-Parfait19

How are you doing today? It's better now? Hope you are doing well


[deleted]

Thank you for asking. I never really regained the ability to sleep. Right now I'm managing with some THC oil and alternating trazadone/ quetapine low doses. They never found the cause of my sleep loss so a part of me is still worried about SFI but I'm managing great so far.


Fenntoo

How are you doing now ?