Sacred of you know what already

Signs and symptoms
1

There's been a ton of discussion here about SFI (or sporadic fatal insomnia) and well, I guess here's my contribution.

First of all some background, I'm a teenager who's recently discovered that she has anxiety (it started that one day I woke up with what seems to be a panic attack, but not the point). At first I began worrying about nothing, then everything, then the whole thhing about what if I go nuts and hurt someone, and now health anxiety.

It started somewhere back in April. I always knew I had insomnia, but one day my curious mind searched it up on the internet. As a result, I learned about SFI.

Of course this got me shaken, and I didn't sleep until about 12:40am back then. From what I can tell, my fear of not being able to sleep kept me awake, but eventually I did manage to get to sleep like normal again (adjusting mybsleeping time to 10:30pm, 11 being the latest).

Fast forward to this May, I had just finished worrying about being pregnant because my period was late, despite never even having a boyfriend. Last night I tried to sleep, but was stuck in that sort of state before blacking out into "actual sleep". That instantly scared me and I woke up, my heart pounding and sweating like crazy. My fear was way up high and I didn't know what to do. I tossed and I turned bht nothing seemed to work. Luckily I manage to fall asleep at about 12 (again), woke up again at 3 for a short amount of time (like a few seconds) and woke up at 8 once again to start the day.

Do I have SFI? I'm scared to sleep today to be honest. It's currently 5:50pm and bedtime is hours away. I try to convince myself that this is just some sleep anxiety, seeing as the reason I've pinpointed why I can't sleep is because I'm terrified of not being able to. But still, I'm scared. Yes, I know that I'm never really "sleepy" during the night times, but I can help but worry since this is the first time I had a rough night whilst trying to sleep.

I'm already giving myself a week to be honest. If my insomnia slowly progress and people start to notice, then I'm ready to start writing letters about my goodbyes. I just hope it really isn't what I fear. I love my family so, so much and there are so many things I still want to accomplish.

2

This is all to do with anxiety ! You are overthinking everything all your nerves are on edge and you are just waiting  for something to happen, a typical anxiety state. Let me reassure you you do NOT have SFI. This is such a rare sleeping disorder and you would have many more symptoms. It’s your anxiety that is giving you all these symptoms so think about going to have a chat with your GP. I haven’t slept well for 20 yrs ( much worse at times than you are describing) and anxiety about not sleeping has played a large part in this. It’s no good me saying try and relax cause I know you won’t! When I once went to my Dr when I was anxious and not sleeping  he said not sleeping  can make you feel rough the next day but it never killed anyone!!  Please try not to worry and if you don’t sleep just lay there at least you are resting. Incedently I only had 3 hrs sleep last night. Tear up those goodbye notes you have loads of years ahead .

3

No Yiel, you don't have it! It's a vanishingly rare disease which has only been diagnosed about 100 times worldwide since it was first identified about 60 years ago. Also, the insomnia phase only kicks in after severe neurological damage has already occurred, so if you really had it you wouldn't be capable of using a computer by this time.

I'm a former neuro nurse, btw.

I note you say you got scared you might be pregnant, even though you didn't have a boyfriend. Well, that's clearly impossible, isn't it? Your other fears fall into the same category - impossible.

Congratulations, however, on admitting that you suffer from anxiety. A lot of people who are clearly very anxious indeed just can't bring themselves to admit it!

It's quite normal to suffer severe anxiety in your teens. 60 years on, I can still clearly remember some of my own teenage angst. As Angela says, this is the problem you need to address. You need to see a doctor about this - with your parents' permission if you're under 16 of course. CBT (cognitive behavioural therapy) is the best treatment for anxiety, though a short course of medication can be helpful at the outset. However, your doctor shouldn't just reach for the prescription pad without any backup therapy. You may need to get your parents involved if you have a lazy doctor.

You might also want to google "sleep state misperception". A lot of anxious people wake up with the impression they've hardly slept at all - I used to when I was young - whereas if you put them in a sleep lab it turns out they've slept quite well.

Don't worry about this. You don't have any rare neurological diseases and you're not going crazy either. It's all part of the process of growing up. The only "disease" you have is being a teenager! You just have a slightly worse case of it than most.

4

Thank you so much for replying It means a lot. I don't know if my reply went through or not, but just in case, I'm writing another one.

Yet again last night I manage to sleep at 12, wake up a bit at 3—I noticed that Miss Lily said about sleep state misconception during this period—, and finally at 8 like I normally wake up. I'd like to also note that everytime I try to sleep, it's more of the anxiety and pressure of me trying to sleep that keeps me awake. Maybe I have sleep dread?

This is actually the 2nd time I've worried about sFI. The only reason my fear of it disappear momentarily is due to the fact with had summer camp. I noticed during those 4 days that despite not being in my own bed, any time I slept I manage to sleep and wake normally (although accompanied by still feeling tired, but I know that's normal for insomnia). What continues to scare me is the fact that sFI is progressive. I've been trying to reassure myself that if I did have sFI, then people would have began to notice, and I wouldn't be "blacking out" or I guess having deep sleep, since I've read that people with FFI or sFI can't get past sleep stage 1 or something.

Way off topic, but are forgetfulness and the feeling as if you're wobbling while walking symptoms of anxiety? I mean, once again, no one seems to notice, so it could just be all me. I hope one day I can learn live anxiety peacefully. But for now, *sighs*.

5

Sorry, I meant I NOTICED THE THING ABOUT WHAT MISS LILY SAID, SLEEP STATE MISPERCEPTION DURING THIS, AS IT FELT LIKE I JUST WOKE UP AFTER SLEEPING FOR A FEW SECONDS BETWEEN 12-3AM. I forgot to proofread -.-

6

SFI is part of diseases known as Prion diseases. It is actually similar to CJD as are the symptoms too. All of these diseases quickly progress from onset. Meaning you get progressively quickly.

At onset of the disease there is personality changes and mood disorders, a few months later short term and long term memory issues become apparent and the ability to walk properly becomes more difficult as does the ability to use words correctly when talking. Lack of sleep isn't the main reason you die from SFI. Like the other prion diseases your whole body basically shuts down, first it's your personality then memory, then you stop walking, talking, stop remembering the people you love and eventually you stop breathing as the muscles in the chest won't work to expand the lungs. That's when people who have Prion diseases die.

7

Basically if you can laugh and your mood is OK most of the time then you don't have a Prion disease. Feeling very sad all the time and unable to find things funny are one of the classic signs of the diseases.

8

That scares me immensely. Right now my mood is haywire right now. Oh gosh I'm dying aren't I?

9

Ever since I started worrying aboht sFI I've had problems with concentration and my mood and my emotions. Yes it could be because of anxiety, since they started when I started worrying about sFI. But what you've just replied right now might have just confirmed it. I'm dying aren't I? I guess this is it. I knew I was dying, I've already been thinking about what to say and what to write to my family and loved ones. How I'd say goodbye and ask them to possibly donate my brain and what not and kill me instantly just a month in once it gets worse. Oh gosh

10

I think you have sleep anxiety and not SFI. You are worrying too much about not sleeping and this is keeping you awake. People with sleep deprivation are also low on mood but they don't have SFI. Which is extremely rare probably one in 2 billion people. The chances of you winning the lotto hundreds of times over are greater than having SFI. If you did not have the Internet you would not worry about very rare diseases.

Using the Internet is an easy way to become a hypochondriac.

11

Yiel, stop playing with this right now. You're not in the least danger of dying, as I suspect you well know at heart. You are, however, in danger of wrecking your entire life by giving way to health anxiety. This isn't a game - the rest of your life is at stake.

Please stop all this now, while you still can, my dear. You have a long life ahead of you. Three months from now, when you're still alive and not disabled, you'll realise you never had this disease in the first place. (If you had, you'd be in the last stages in a few months' time.)

I'm not going to write any more, as I well know that the more you talk about this, the more you're going to work yourself up.

12

Yes Lilly is right. Do stop this now Yiel. You DO NOT have a life threatening illness. Stop looking at the internet and Dr Google!! People survive on very low amounts of sleep. You are just over thinking all this. Go to your doctor and spill all this out to him and he will reassure you.

13

I'm sorry if I angered you all ot's currently 1:54am here, and the only sleep I've gotten is a few minutes. You're right I should stop worrying but I don't know how. To be honest I've talked to my parents before of my anxiety, yet they don't believe me at all. Everytime I bring it up they'll threaten me that they'll stop my schooling entirely in exchange for a pyschologist, in which we'd have difficulty finding one since the nearest would be far from where we live.

Once again, I'm really sorry about getting you guys, agitated. I suppose I came on to this site because I didn't know what to do and felt like I couldn't talk to anybody.

14

Yiel, you haven't upset anyone. Angela are both concerned about what you're doing to yourself, and we want you to stop.

15

Hi Yiel,

Me again. Not one of us wants to be harsh to you. You obviously have an anxiety state which is in no way life threatening but can be helped by talking first to your doctor. Your parents probably don’t realise just how anxious and worried you are. The next time they offer a physiologist help accept it and maybe they will then realise just how anxious you are. This is all to do with anxiety. You have no life threatening illness but you may need a bit of help to help you get over this bad patch. I know you don’t know how to stop worrying but there are people that can help you (even if you have a real serious chat with your Mum) You will come through this. I am proof as  I went through much the same as you as a young girl. I am now married with 3 lovely sons. I still have the occasional wobble where I overthink things and I don’t sleep well  butI don’t let it rule my life now. You will be fine.Talk to someone . There are so many people out there suffering the same.You are not alone.