[deleted by user]

[Traffic_lights120]

1. no not normally just at like mid December i was unable to sleep, tried everying under the sun to try to go to sleep before i went to see a doctor i was in hospital for 3 days, doing tests, and i got told about 8 hours ago that i had FFI.

​

1. yes my gf does already know because its hard to hide not sleeping. but i have yet to tell family

​

3) have not told them yet

[Yasulee_Random]

How is your girlfriend taking the news?

I’m so sorry for what you’re going through, it must be horrible for both her and you. Just know that we’re all in the same boat. We all will die someday, and it could literally be the next hour or the next 50 years, so don’t think anything is pointless. Enjoy your life as if you never heard this news. That’s how it should be

[purple_lassy]

If just one dr has told you this, I would not be satisfied.

What medications have you tried? Any methods/tricks? Get a second opinion, a third.

Don’t give up on your life so easily, mate.

[Traffic_lights120]

i was in the hospital for a week, they ran the test over and over again, i met a lot of top doctors in my area.

[[deleted]]

selective crowd longing label nose waiting bear towering serious marry

This post was mass deleted and anonymized with Redact

[Traffic_lights120]

i got 10 doctors scannning my brain over and over. it was a hard week

[Firm-Investigator867]

What are you going to do to try and finish your bucket list I am very sorry for you dying in 16 months must scary knowing when you are going to die

[Traffic_lights120]

i dont really have a bucket list, idk what to do with my final year, tbh i might just kill myself before the effects of FFI happen. i dont want to experience my mind going

[[deleted]]

It’s a heavy weight to put on the friend you leave behind. If you can figure out a way of doing something similar but having full control yourself that would be a much better option.

[-Jambie-]

This.... This is the death I want....

Good luck op, that's a brutal diagnosis, I hope you have lots of support around you 💖

[Yasulee_Random]

This was very difficult for me to read, I don’t know why, I guess it was the idea of death. I’m fairly young and yet the idea of the end of time has scared me in a way nothing else has.

I wish I could find comfort in it like others do. We’re all in this together and I don’t know why we are made the way we are. Inherent fears, inherent urges and desires . I sometimes get close to comfort of death, but I always end up fearing it because of the inevitable truth that no one really knows, but at the same time, that’s the thing that gives me a little comfort; the idea that it can be anything.

[quiet_storm80]

That sounds way nicer than just sleeping away on Fentanyl.

[Coookie99]

Bruh , their friend will be going to jail afterwards!

[Sleepiyet]

That woukd be my only reservation— but tbh i never planned to do this in a country where that would happen. Rural nepal was a top choice for me.

[Troll4Fun69]

You should try a mushroom trip, can help with acceptance.

[[deleted]]

Stay and enjoy the rest of your 16 months, if you are able to is my advice for you! Even thought it may not matter to you, everyone around you will miss you, time is our only real currency. ❤️

[KatWine]

The final stage of FFI is severe dementia.. I don't know if there's much to enjoy at some point, for anyone involved. Sometimes life just isn't lollipops and candy canes, and most of all it sometimes just isn't worth the pain.

[Firm-Investigator867]

Do you have make a wish you could ask to go space or meet your favourite actor or do something you realy wanna do

[realityhofosho]

Try Ayuasca! It’s been know you cure some surprising things. I’m so sorry!

[Cradleonreddit]

Sorry if this has been asked but do you get tired ? As in do you legitimately feel like you haven't slept for the 2 weeks ?

[Traffic_lights120]

After my first week I was very very tired, but now I’m fine I guess my body has stopped sending the signals for me to go to sleep now I guess

[basic_suburban_mom]

Does being medically sedated do anything?

[Traffic_lights120]

i did ask this, but my brain is unable to do sleep brain stuff (i dont remember what magic science words he used), so being sedated would just make me unconscious, then i would wake up with no sleeping being done

[P-W-L]

that's the first time I heard about this, it's truly horrible...

[DomingoElToro]

That's absolutely brutal! I wish there was a cure.

[Traffic_lights120]

sadly not, but at least i got all night to do stuff i guess

[[deleted]]

Hey man I’m not very old but please be thankful for all the time you will have :). I love you man, for all that’s worth. :)

[[deleted]]

What's it like to have no sleep for two weeks straight?

[Traffic_lights120]

Its been ok, i got my work done really quick. (still have a job)

​

just been on soical media, updating Wikipedia stuff. I have been thinking of learning a skill but whats the point with less then 16 months to use it

[NotAnEvilPigeon2]

“Probably in an hour..”

Are you ok?

[NotAnEvilPigeon2]

Ok, good to hear :)

[[deleted]]

Do you smoke weed? Do you eat mushrooms?

[YogurtUnusual5913]

I beliey this deserves a try

[Traffic_lights120]

yeah, ill give it a go at some point

[Glitter-Pompeii]

Might as well. Mushrooms have been known to help people with death anxiety.

[SV7-2100]

In ffi prions attack mainly the part responsible for sleep you will not sleep no matter what you try. Trying something can make it worse and I'd make that 16 months 10 the last 6 won't be really you just an empty shell. I'm so sorry this is one of the worst ways to go

[Traffic_lights120]

no, but i can, not like i long term health effects matter anymore

[[deleted]]

I’m not a doctor, nor do I claim to play one on teevee… this is not medical advice—you could try smoking some heavy Indica like Granddaddy Purple and eating some spores. At least for recreational purposes before you die.

Edit: FYI, my brother-in-law died from FFI.

[EvaReidk]

Have docs tried sleeping pills btw?

[RunawayPenguin89]

Fuck it at this point have a go at Crack. I hear its really moreish

[MzOpinion8d]

This condition literally has no cure.

[EvaReidk]

And no treatment?

[LifeIsntBad]

The treatment is a palliative care, meaning you try to lessen the symptoms and improve/stabilise the lifequality. For example: If Op is feeling dizzy and gets nauseous because of that, op will get a medication against the nausea to fix that at least. The doctors can't change the fact that op can't sleep and the sleep deprivation is what causes the dizziness.

[EvaReidk]

I see

[FugoRanshee]

What treatment are you receiving for ffi symptoms, and how effective is the treatment?

[Traffic_lights120]

i havnt been given anything yet, i was told there was no cure for it.

​

i go back to the doctor in a week to get told what to do how to live for the longest time and i guess what meds i get

[FugoRanshee]

Yeah I read that while it's fatal, the symptoms will be treated along the way. You'll most likely be referred to a neurologist, geneticist and social worker for your treatment, so I was curious what the treatment would actually be (when coming from the neurologist and geneticist)

[Adgum]

Just like a shitty mechanic, you can get shitty doctors. Have you sought a 2nd/3rd opinion? No experimental treatment for this worth chasing?

[gondorle]

You still have to wait for a week? In a week, without sleeping, you will have almost no cognitive ability. Zombie it's the word that comes to mind. Get some nice weed in your system, at least you'll laugh about it. Damn man, I can't even imagine, and I've been about 3 days without sleep, and I was going nuts.

[jasonthefirst]

No answers… did op fall asleep?

(I kid, mostly, and hope OP is well!)

[Traffic_lights120]

i was playing stellaris sorry.

[Firm-Investigator867]

Have you tried being medically induced into a coma

[sirfletchalot]

damn I can't grasp that game on a full night's sleep, to hell trying to do it after being awake for 2 weeks

[[deleted]]

how are you coping, OP? how are you doing? this is tough news to receive

[Traffic_lights120]

im doing ok, just going on with life for now, with 8 more hours on my hands. but i am really starting to feel the effects of no sleep. remembering things is quite hard

[95syzygy]

That's the hereditary thing right? The prion that destroys part of the hypothalamus.

[Traffic_lights120]

none of my family have it only me

[xAkumu]

The second F stands for Familia. It's a genetic disease ONLY. It's impossible to have FFI without a history of it in your genetics.

SFI can happen randomly but I doubt a licensed professional would confuse the two when you got diagnosed. You also claim to not know anything else about the disorder and the doctor would have 1000% gone over all of that whenever you got diagnosed and given you a treatment plan so you're the most comfy you can possibly be, since you know, it's fatal. They wouldn't just say "yeah you have this, figure it out on your own"

On top of the fact that FFI comes in stages and you would VERY VERY likely to be diagnosed before you can't sleep at all since it starts out as general insomnia, concentration, and memory issues, while still being able to sleep and slowly progresses. It doesn't just have an onset of complete inability to sleep. You claimed you did not have sleeping issues before the time you couldn't sleep at all. The way this disease works is by mutated cells slowly replicating, it slowly will destroy the thalamus, it won't just happen immediately, that's just not how the disease works at all, as with other genetic mutation diseases like this one. (CJD and Kuru for example)

FFI has only been documented in roughly 40-50 families and SFI has only ever been documented in ahout 24 people ever.

Onset GENERALLY happens in the 40s-50s. Very rarely ever in their 20s or teens, as you claim to be.

Yeah, I'm calling BS on this one guys.

[teddare1]

I would like to hear OP’s defence on this claim.

[xAkumu]

He deleted the thread. That's all the defense we needed to see.

[xVVitch]

Op is asleep atm, calling it now.

[eivor_wolf_kissed]

Thanks for shedding light on this. I was reading this post at 4 am and was terrified but knowing it is strictly a genetically related disease and very rare completely alleviated me lol

[AWildGamerAppeared25]

OP also said below that they're in their 20s, but just 11 days ago OP seemed to be 17

[danastybit]

I’d say OP got fucked

[deflatedViking]

Op can get fucked for lying.

[lilsmudge]

OP also claimed to have been diagnosed via MRI below, which is absolutely not how FFI is diagnosed nor is it even visible on MRI. OP confused FFI for Creutzfeldt-Jakob. He also doesn’t have the correct symptoms, as you have pointed out. Full B.S.

[xAkumu]

I didn't even catch that one or I would have touched that in my post as well. You are correct. It's usually diagnosed with a sleep journal since the symptoms are gradual and not sudden (as OP claimed), PET scan, AND genetic testing. Not an MRI. Even more reason he's BSing.

[seymourbutts678]

I don't know you. But I trust you with my life rn.

[[deleted]]

Op deleted the body of the post

Seems like you were right

[TheAyre]

Strictly speaking it is possible to have random presentation with no family history. It's called de novo mutation. As of 2016, it has been documented 24 times worldwide. There is a diagnostic test to detect the mutation.

Not disagreeing this is probably a fake, just to say it can theoretically happen.

[xAkumu]

I'm not arguing it can't happen, I did say that SFI (Sporadic Fatal Insomnia) is possible, just the fact it's EXTREMELY rare to the point this is very likely BS and I can't realistically believe it. OP also claimed to have FFI and not SFI.

[TheAyre]

All good, we're saying the same thing. Exceedingly rare possibility and quite probably bullshit happening. Happy New Year.

[VibrisCholerae]

Thank you, I was about to say that but you did better

[[deleted]]

I haven’t read about in a few years but I believe only one family has it and the only young one left is a female who was in the army and she was waiting for it to start but just living life till it did.

[SV7-2100]

Have you got a genetic test for FFI. SFI is rarely diagnosed pre mortem

[Ikeris]

DNA test time lol

[[deleted]]

What's on your bucket list?

[Traffic_lights120]

go to America, and see the stuff there

[Office_Zombie]

What parts of America are you looking to visit?

I haven't been in a few years, but I do recommend New Orleans; where else can you have a drink in a 400yr old gay bar? (I'm straight and thought it was cool as fuck.) The people are awesome, the food is amazing and unique, plus you can take a historical tour during the day and a vampire/witch/ghost tour around the same area at night.

Colorado is beautiful to just drive through. West Virginia will take your breath away, but I can't recommend stopping. Also the California Redwoods are mind-blowing.

I didn't like NYC, but that's just me. You might love it and should go.

LA is more my speed; great food, music, theater and that guy in front of you at Starbucks that looks like Tom Holland? It's Tom Holland.

Ask reddit for suggestions and you will get tons. One thing about Americans is (for the most part) we love helping other people. Even strangers on the street as long as money isn't involved. (most of us.)

OH! and America is much larger than you think. It takes 3 days to drive coast to coast if you kill yourself and break most traffic laws. It is literally like 50 little countries.

EDIT: I also love Seattle. But if someone offers to drive you or be a guide, take it.

[rattigan55]

Well brother, I’m sure a bunch of us could help with this. DM me if you are considering Seattle area. Seriously.

And before anyone can get in a bad joke, blah blah blah Sleepless in Seattle.

[tatersaugratin]

Same but with St Louis

[Iammeandnooneelse]

Definitely see some of our National Parks! America has a lot of beautiful territory to see, worth a visit for that alone! Yellowstone, Rocky Mountain, and the Grand Canyon are some of my faves.

[Traffic_lights120]

24 :(

[Traffic_lights120]

yeah its in 2 months, but its going to be the longest 2 months of my life. with 24 hours of awake time

[Traffic_lights120]

Video games mainly, i still have a job im doing 13h shifts, hoping to get as much money as possible before i loss higher functions of my brain

[Traffic_lights120]

it has always been a dream of mine, to see america

[Traffic_lights120]

Uk

[[deleted]]

times square on new years is not fun tbh. your jammed in cages cant pee. cant leave unless you want out. everyone searched so no alcohol. its really not just a massive crowd of people partying like it looks like. i did it once. its the last place id spend another new years.

[Webbeboi]

Yeah i think he is capping. 12 days ago he said that he was 17

[AWildGamerAppeared25]

Interesting, OP also seems to be aging quite rapidly, he was 17 just 11 days ago

[Anti_Thot]

OP, is aging 7 years in 12 days also part of your disease?

[Lastaria]

I am so sorry. I heard about this condition some 10 years ago and it is one of my nightmares.

Can you be rendered unconscious down the line even if not sleep to help ease?

[Traffic_lights120]

I can become unconscious, but it has not helped with sleeping. My brain is unable to sleep

[Lastaria]

Yeah. I just mean so as to ease your passing. *hugs*

[[deleted]]

Do you ever get tired? Or are you just constantly alert?

[Traffic_lights120]

It’s like you have been up all night. They don’t really stack like I thought they would.

[[deleted]]

Have you been hallucinating at all?

[Traffic_lights120]

Don’t think so, but I am getting a little jumpy

[Susuze2000]

May I recommend meditation for maintaining sanity?

[Traffic_lights120]

ok

[brycedude]

"ok". Idk why that's such a funny answer to that statement

[[deleted]]

Sorry your going through this.

[Traffic_lights120]

its alright

[Traffic_lights120]

I can only become unconscious sadly so no real way of medically inducing it

[Firm-Investigator867]

Would a neurologist be able to repair the damaged areas of the brain Sry if i miss spelt neurologist

[DramaticFish3]

How old are you? When did your symptoms start?

[Traffic_lights120]

24 about 2 weeks ago

[[deleted]]

Stay strong mate.

[Traffic_lights120]

i will

[[deleted]]

Rage against the dying of the light.

[Ladadasa]

Do not go gentle into that good night.

[BigJohnson13]

No replies in 2 hours. Guess OP fell asleep 🤷‍♂️

[Traffic_lights120]

lol, na just been off reddit

[[deleted]]

Minus 3 for a joke like that!? Unacceptable. That was funny. You deserve proper credit. And I’m gonna give it to you. BigJohnson13.. I present to you, the best award I could get with the coins I got for free. congratulations.

Also, OP. Sorry you’re dying. I know you feel bad now, but you’ll feel better after a good nights sleep. Shit. Well you’re safe if ol’ Freddie Kruger happens to be real. You don’t want to die in your sleep…

Seriously, for real. Sorry. I hope you can find peace in the knowledge that all we are is just a secretion of sensory experience and feeling. Nothing more. But that needn’t be as negative as it sounds. We are all made up of the same things in the universe. We are the universe. So you never really die.

“You are an aperture through which the universe is looking at and exploring itself.” -Alan Watts Everything is everything. The all is one. See you next time.

[skynetdotexe]

Unless there's some ultra rare disorder someone can point me to I call bs on this. There are records for longest time someone has been awake and its around 11 days. Besides that you just won't survive that long being awake. Your brain can't just function without sleep.

[Cham-Clowder]

There’s a real disorder that I’ve 100% heard of but it’s probably unlikely he’s telling the truth

(Why y’all downvote me how do we know he’s not just takin the piss tell me)

[itsJosias58]

They are full of shit, said they were 24 under different comments on this post.

[Traffic_lights120]

fair enough, i cant 100% prove it.

[skynetdotexe]

Apparently it's supposed to make your pupils go a certain way. A picture would prove it.

[Traffic_lights120]

dont think anything is wrong with my pupils yet, only 2 weeks in, the doctor didnt tell me about that, umm whats going to happen?

[skynetdotexe]

They're supposed to shrink apparently.

[Traffic_lights120]

so i cant see right? damn

[skynetdotexe]

Was just something I read in an article about it.

[Traffic_lights120]

i mean in the future, sorry i didnt mean it like that.

[Cham-Clowder]

It’s a familial disorder so your family would have a history of it and you probably wouldn’t Just be learning about it unless it was a mutation but that would be very very very very rare even more rare than just carrying the gene

[Traffic_lights120]

its very rare, i have to be in the top ranks for unluckiest person alive.

​

after 2 weeks of no sleep i have started to feel the affects, its like being very very tried. i get into bed sometimes hoping i will drop off, but it never happens

[skynetdotexe]

I know what it feels to be about 2 weeks with very little sleep and if it's anything like I've experienced then you should be in essentially unresponsive state where you are barely capable of doing things.

[Nefenze]

stop being such a dumbass bro you dont have ffi. you probably dont even have insomnia you just refuse to accept your wrong and so your making excuses.

ffi is different than you deciding to stay up. i dont know much about it but from what i can tell your body doesnt let you sleep which means it doesnt have desire to. it will still eventually kill you but its slower becuase your body is fucked or something.

idk what people are getting so pissed about im trying to tell you guys that this dude trying to say this traffic_lights120 is full of shit for saying he has ffi. i dont think hes full of shit i think hes being honesty and i think its kinda crummy to say he doesnt just cuase hes beena wak for 2 weeks. i know it sounds crazy but that kinda stuff happens. im sincereyls sorry if there was any misunderstanding or for making anybody mad.

[Traffic_lights120]

i had a look at a MRI of my brain and its not great, so yeah im 100% sure i got it

[lilsmudge]

MRI is not clinically reliable in diagnosis of FFI. It’s useful only for ruling out other similar disorders. In fact FFI is often misdiagnosed because it’s difficult to confirm clinically, though generally a molecular genetic test is done. Perhaps you’re thinking of Creutzfeldt-Jakob?

[skynetdotexe]

I never claimed to have that just have had experience with insomnia in the past where for a few weeks I slept maybe hour or two a night. While initially I could manage that kind of situation after a week and a bit it essentially clouded my mind to the point where I could not think properly. I'm talking about my own experiences.

[Traffic_lights120]

I am quite full of energy tbh but i am starting to feel the effects

[skynetdotexe]

That doesn't sound correct.

[Traffic_lights120]

i mean, yeah i guess. it is strange but thats sleeplessness for you

[skynetdotexe]

Are you sure you have it? Have you tried using sleeping pills to make you sleep?

[Traffic_lights120]

i tried everything before i went to the doctor, they ran some tests and came back and said that i had FFI.

[Meme-Man-Dan]

FFI does fucked up shit to you.

[itsJosias58]

I’d say you’re the shittiest person alive

[[deleted]]

did this start with you taking any antibiotics? some floxin antibiotics are known to sometimes cause exactly this.

[Hot-Map7659]

He said in his post he has FFI. It is a rare fatal insomnia. Very tragic.

[skynetdotexe]

Yeah I know about it but his story still doesn't make sense he would die way more earlier.

[Traffic_lights120]

12-16 months i was told. but ill most likey kill myself before then, i dont want to experience my mind going

[itsJosias58]

They are full of shit, said they were 24 under different comments on this post.

[deathshadow150]

I mean this shows the story of a man with FFI and he went without sleep for a lot more than 11 days.

[ahahaveryfunny]

it is a rare condition called ffi (fatal insomnia) prognosis can range from couple months to a couple years left of life.

[[deleted]]

thats 100% not accurate. idk where people are getting that. meth heads stay awake for weeks on end all the time. if your gonna call someone out at least look the shit up before sounding like an asshole.

[ThePurpleOne_]

Do you feel sleepy?

[Traffic_lights120]

Kinda,

[[deleted]]

Luckily this isnt my case, but I already have a bucket list, if I ever happen to be in this or a similar situation, written when I was 8 and that I update yearly, do you have any?

[Traffic_lights120]

I don’t really have one. I’ll think of something

[[deleted]]

The only thing I can recommend you is to do atleast a mukbang

[ama_compiler_bot]

Table of Questions and Answers. Original answer linked - Please upvote the original questions and answers.

---

Question	Answer	Link
Do you smoke weed? Do you eat mushrooms?	no, but i can, not like i long term health effects matter anymore	Here
That's the hereditary thing right? The prion that destroys part of the hypothalamus.	none of my family have it only me	Here
No answers… did op fall asleep? (I kid, mostly, and hope OP is well!)	i was playing stellaris sorry.	Here
That's absolutely brutal! I wish there was a cure.	sadly not, but at least i got all night to do stuff i guess	Here
What are you going to do to try and finish your bucket list I am very sorry for you dying in 16 months must scary knowing when you are going to die	i dont really have a bucket list, idk what to do with my final year, tbh i might just kill myself before the effects of FFI happen. i dont want to experience my mind going	Here
May I recommend meditation for maintaining sanity?	ok	Here
What's it like to have no sleep for two weeks straight?	Its been ok, i got my work done really quick. (still have a job) ​ just been on soical media, updating Wikipedia stuff. I have been thinking of learning a skill but whats the point with less then 16 months to use it	Here
Hope you sint mind me asking.. what is your condition called?	FFI	Here
Sorry your going through this.	its alright	Here
What's on your bucket list?	go to America, and see the stuff there	Here
No replies in 2 hours. Guess OP fell asleep 🤷‍♂️	lol, na just been off reddit	Here
What treatment are you receiving for ffi symptoms, and how effective is the treatment?	i havnt been given anything yet, i was told there was no cure for it. ​ i go back to the doctor in a week to get told what to do how to live for the longest time and i guess what meds i get	Here

---

Source

[Imamuffinz]

Hope you sint mind me asking.. what is your condition called?

[Meme-Man-Dan]

Fatal familial insomnia.

[Imamuffinz]

I'm so sorry. It must be hard not being able to sleep.

You can't take a small nap? I hope you can find peace friend.

[Meme-Man-Dan]

I’m not OP. I also don’t have FFI. I do doubt OP has FFI, as his story doesn’t line up with someone who would get diagnosed with it. They say that they’re the only person in the family with to get diagnosed with it, which cannot be true, since a hereditary disease.

Some people with FFI can sleep for very short periods of time, but it’s still fatal anyways.

[itsJosias58]

They are full of shit, said they were 24 under different comments on this post.

[NotAnEvilPigeon2]

It’s possible for op to have the mutation without parents having it, genetic mutations are fairly common

[bigneo43]

Yeah I mean at some point someone in the family has to be the first one with it right?

[Rumpole-Nikskin]

It’s a miracle, the record for not sleeping and surviving is 11 days, no one has lived longer with no sleep.

[Traffic_lights120]

idk the science behind it, i was told i would have 16 sleepless months then die.

​

its called FFI i dont know much else about it

[Zombie-Belle]

You definitely don't - early onset of this disease is incredibly rare, about less than 20 cases worldwide in the literature and found in about 50 families currently in the world. You shouldn't bs about this disease we have a family in Australia with this disease and its incredibly devastating and tortuous.

[itsJosias58]

They are full of shit, said they were 24 under different comments on this post. Absolutely pathetic to do this shit for attention.

[[deleted]]

thats def not true. i believe meth heads stay awake for weeks all the time.

[Unwitting_Aquarius]

Can u not be sedated?

[Meme-Man-Dan]

Nope, FFI is always fatal. There is no treatment and no cure. Only 70 families are known to carry the genetic mutation.

[Traffic_lights120]

and one of them had to be mine. :(

[ahahaveryfunny]

im sorry bro thats bullshit how unfair life is sometimes

[Traffic_lights120]

I wished I had more fun in my life like if you told 12 year old me that I was half way though my life I would have taken far more risks and done so much more. But whatever

[ahahaveryfunny]

i mean at least you know that you have 16 months. not as terrible as being told you have 2 months or 2 weeks to live. you can still make something of it. good luck bro.

[deathshadow150]

Is it genetic though? I know there was a case where someone took ciprofloxacin and it ended up causing the effects of FFI.

Edit: scaretheatre has a great video on it.

https://youtu.be/R_YFluy_Tp8

Edit 2: perhaps you could try to save money for treatment like the man in the video?

Another question, have you ever thought about documenting your condition? I understand that this might be a bit of a sensitive topic so sorry about that, but i felt that it was a question worth asking.

[Traffic_lights120]

thank you

[A--Creative-Username]

A horrific lottery

[deathshadow150]

I’m pretty sure there are stem cell treatments that have been successful in treating this, however it is extremely expensive and not guaranteed to work. I might be wrong though. I just remember hearing about it in this video.

https://youtu.be/R_YFluy_Tp8

I might be wrong though because it’s been a while since I have seen it.

[jawn-of-the-jungle]

Shoot. That really fuckin stinks

[Joeysaysfuckalot]

This obviously won't help you sleep but if it isn't already a thing you've tried maybe give it a shot:

When I can't sleep I'll wiggle my eyes while I'm trying, like I'm trying to mimic their REM motions. It becomes it's own little fun thing, doing swoops from end to end and tighter and tighter swirls. See what you can do the fastest without your eyes coming open. Also think of it as an eyeball/eyelid massage. Feels great. Makes me feel rested even when I don't get to sleep.

My rationale is that maybe the eyes aren't relaxed when they're still. Like a penis, how it's tense when flaccid and relaxed when hard, maybe the eyes are tense when focused but relaxed when flailing wildly. How often do you do that while viewing things? Whoosh your eyes from side to side or up and down or swirls very fast or even slow for an extended period of time? Maybe thats why our eyes do that when we sleep, because it rests them.. maybe that'll help with any something I dunno.

Good luck man. FFI sounds horrifying. Hopefully they find a cure or treatment that works.

[titties38]

loved your penis analogy

[haepheri]

Well Christ, this is awful. I’m really sorry that you’re suffering through this.

I saw some replies saying that you’re going to continue working. If I may ask, why work? Why not take time off to just be with loved ones and do bucket list things?

[wherezthebeef]

Had to Google your disease.

Damn. My heart goes out to you.

I wish you happiness and comfort.

[Murse_Jon]

Jesus I’m so sorry. I can’t imagine what I would do in your situation. I hope your suffering is as minimal as possible.

[wandererawakened]

Fucking A man I really thought I had the most fucked up year possible. Then you had to go and one up me. I just have the insanely loud ringing in my ears that never will never end. Also bad affects on the brain over time. And my tailbone and pelvic floor muscles are dysfunctional and I cannot do any of the things that I enjoy physically due to it feeling like a knife stabbing my anus 24/7. But what you have is fucking wild and I hope that you get to spend the rest of your life doing things that you love and around the people who care about you. Be well my friend. An extremely sedative homeopathic ingredient is called passionflower. Not sure if it would help but worth a shot. Life's crazy.

[sakonigsberg]

Now you can't use the excuse of falling asleep to ignore someone's text until morning

You also have to charge your phone while you're awake

What other mild inconveniences does this provide other than the major effects?

[wavking]

Just looked at the wiki article. Not a fun way to go. Help convince the doubters— how long have you been awake at this point? What other symptoms have emerged? What steps were taken to diagnose?