I think I have Fatal Insomnia

Signs and symptoms
1

I'm at my wits end. I've had sleeping problems before but this is different. I'm scared to death I have Fatal Insomnia! I've always made it on 5-6 hours a night and been fine. The last few nights have been hell. My anxiety has been rearing is ugly head. As I begin to doze I feel weird sensations. My heart pounds, I feel short of breath, and I feel as if I'll vomit. It all jolts me awake. I've gotten maybe 7 hours total the last 2 nights and I'm scared.

I do have other symptoms as well.

Horrible Insomnia

Sweating and chills

Heart pounding

Depression and anxiety

Also when I do achieve sleep, I feel as if I don't and have vivid dreams. I'm almost dreaming with my eyes open. I'm never aware I'm asleep, done it for years. My job requires a ton of thinking and my anxiety is fine until the moment I get home and begin to wind down. I think I've developed a fear of sleep or sleep dread.

I just can't shake the feeling that I really have Fatal Insomnia. Any reassurance will help please?

2

No Gman, no reassurance will help. Not because you have Fatal Insomnia, the incidence of which is about one in a billion (seriously - I'm a former neuro-trained nurse) but because you've developed health anxiety as a result of your exhaustion. Health anxiety is a very real illness, which can rarely be cured by reassurance, but needs psychiatric help.

There are currently at least five other young men on these boards also convinced they have fatal insomnia. All have exactly the same symptoms as you - which are, of course, the symptoms of anxiety as well as those of fatal insomnia. Much as I rely on it myself, I sometimes wish the b****y internet had never been invented!

You've actually put your finger on it when you say you've developed sleep dread. That's very perceptive of you. That's what you need to be addressing, rather than wasting your energy on speculating about fatal insomnia.

I was never a good sleeper, even as a child, and could easily go several nights in a row without sleeping at all when I was stressed. In my mid-20s, I found myself unintentionally taking part in a pilot scheme to "improve" nurses' work schedules, which involved working to a lunatic schedule which comprehensively screwed up my sleep pattern for at least the next ten years. I therefore know what it's like to go on day after day in a demanding job, not getting enough sleep, and getting into a state of panic at the approach of every night. I sympathise totally. It wasn't fatal insomnia, btw - I'm 72 now and still going strong.

If my reaction so far has seemed somewhat flippant, it's because of exasperation at hearing this fatal insomnia story once too often.

Since this has only just started, you have every chance of breaking out of it yourself. Obviously the usual sleep hygiene measures apply - no coffee in the afternoon, a reasonable amount of exercise but not at the end of the day, absolutely no phone or computer use of any kind in the last hour before bed etc. I used to take a small dose of one of the first-generation antihistamines just for a few nights at a time after a run of bad nights. These are promethazine (Phenergan), diphenhydramine (Benadryl) and chlorphenamine (Piriton). Not the new generation - they don't make you sleepy. You need to take antihistamines about an hour before going to bed, as their sedative effect is quite mild. If you take one on going to bed you'll still be awake an hour later, the anxiety will kick in again, and the antihistamine won't be enough to counteract it.

But a word of warning. If you do decide to try antihistamines, don't take them for more than three consecutive nights. You can quickly develop a tolerance to them, just like sleeping tablets, and they'll stop working. I used to take them for two or three nights every 10-14 days. And don't overdo the dose, as they can make you feel hungover the next morning.

I don't think you should worry too much about the dreams. Dreaming a lot doesn't mean you're not getting restful sleep. However, if you're very concerned about this you could ask your doctor to prescribe an antidepressant. These very effectively suppress REM sleep, where dreams arise. They also help some people to sleep. However, they paradoxically cause insomnia in some people while they're actually taking them, and insomnia is pretty much inevitable if you subsequently try to stop them.

Another alternative would be to see your doctor and ask to be referred for CBT (cognitive behavioural therapy) which can sometimes be very effective. It might be useful to get a general check-up anyway, with blood work, to make sure your general health is OK. But please don't go into your doctor's office saying you think you have fatal insomnia. These boards are littered with young men who did just that and were dismissed out of hand by their doctors who, knowing the virtual impossibility of this diagnosis, then refused to take them seriously and investigate other causes.

3

Hi, I know how you feel and it is difficult to not scare yourself stupid with Dr Google.

I was convinced I had it at one point, long dark hours alone at night and at its worse no sleep for days. At one point up for 3 days then only get 2 or 3 hours.

After a few months of this I became very depressed. At that point no one taking any notice because my sleep problem then got put down to the depression by every doctor I saw.

That was 10 years ago. Even though the depression has lifted a lot I still have 2 or 3 nights awake all night a week.

It's taken 10 years and the fact that I am not so depressed to get a sleep study set up in October.

I think a lot of it is when you know you are going to have a bad night you set yourself up for it and become anxious about it which makes sleep harder to achieve.

I would suggest at this point that you go and speak to a doctor about anti anxiety medication.

And remember fatal insomnia is a very rare condition so the chances are you don't have it.

I wish you all the best and hope you find something that helps soon.

4

There is no such thing as Fatal insomnia. Your body was designed to sleep. What you are experiencing is severe anxiety which is preventing the sleep from Occuring naturally. You may want to try visiting with your doctor about anti-anxiety medication combined with a sleep medication to get you back on track and then taper off

5

Well there is, but it's vanishingly rare - about one in a billion of the general population. Given that we now have eight people (and counting) on these boards claiming to suffer from it, I agree you're right. These erroneous beliefs are indeed down to health anxiety, which is a conditon in its own right that needs to be treated.

Thank you for your input Matthew. I was beginning to think mine was the only voice of sanity on these threads. Unfortunately health anxiety, in whatever form, is akin to OCD, so it's always going to be an uphill struggle to convince sufferers that their fears are groundless.

Not for the first time, I would urge all those who feel they are suffering from fatal insomnia, of whatever kind (SFI, FFI etc.) to seek advice from their medical practitioners for their health anxiety. This continued anxiety is doing untold harm to your long-term mental health. (I'm a former neuro nurse btw.)

6

Your anxiety and worry to do with your sleep is clear in your post and it sounds a bit like a catch22 going on where the more you worry about sleep the less you sleep, and the less you sleep the more you worry.  Combine that with accumulated sleep exhaustion and it's understandable that you are feeling depressed and anxious.  

It is extremely unlikely that you have fatal insomnia - I personally don't believe this exists as there is evidence to show that sleep deprivation itself is not fatal. However, I wonder if by your saying that you believe it is fatal, that you are really saying that you are feeling so terrible you are worried you may die from it.  And that your body is saying it can't go on feeling like this. 

You won't die even if you are feeling like you are so tired you feel you are going to drop dead. It is your body telling you to get some sleep, but you will not likely die from it.  

Sleep exhaustion can have physiological effects such as changes in circulation, digestion and temperature changes, which are also adding to your anxiety and worry.  

The heart pounding symptoms and shortness of breath sound like panic symptoms as a result of extreme anxiety, and next time you feel like this it may be worth making a point of focusing on your breathing, slowing it down, counting, focusing on your body sensations.  Your body cannot feel both stressed and breathe slowly at the same time, so the idea is that if you can control your breathing the your body will begin to calm down.

Some self-talk may help you also, such as 'I feel terrible but I am not going to die' or 'I have been through this before and survived', etc.  Find what works for you and notice your heartbeat slow and breathing change as you say the reassuring things to yourself.

I really want to recommend a sleep app you can download for free called 'cbt-i coach', it has lots of techniques to help with getting to sleep and controlling the anxiety from it.  It even has guided visualisations for helping pre-sleep relaxation, and a way to log the amount of sleep you are getting.

When you do get your sleep under a bit of control, you may then start to feel better and when you do you will have more energy and strength to look at whether anything in your life is having an impact on your anxiety or sleep.  Your dreams will then also likely return.  Sometimes sleep disruptions can be nature's way of giving oneself an M.O.T.  Get a check-up with your doctor and look after yourself, do what makes you feel good for a while.

Good luck and stay strong! 

7

First of all, sleep deprivation has been shown to cause death in animals (rats and mice) – one scientific paper states: "sleep deprivation can cause death sooner than food deprivation in both rats and Drosophila".

Severe lack of sleep can cause disease which may be life threatening or life shortening: diabetes, CNS diseases such as stroke and Alzheimer's.

Not sleeping for fear of not sleeping is certainly part of my problem, I believe.

If medics, psychologists, friends, relations, society in general or administrative bodies in control of our society can help, allay anxieties we have, show us ways around stress we can't see for ourselves or which we can't control by ourselves that's all very good and fine. But if they don't, if we go to the doctor and s/he can't invoke them to help us, if we are diagnosed with primary insomnia, then we need whatever help they can give us, even if that help is medication.

Lack of sleep is a vey serious condition, and no one is going to help themselves by trying to curl themselves up over the thought that it isn't, if it is, which it is.

8

Robert you're right, there is such a thing as fatal insomnia. It's an extremely rare prion disease of the brain - in the same category of illness as CJD but much rarer. There are two forms - sporadic and familial fatal insomnia. However, the incidence of both these diseases is so minute that they're not worth worrying about.

However, the ordinary kind of insomnia that so many of us suffer from isn't fatal, and it doesn't automatically lead to serious disease. I realise the physiology of rats and fruit flies is often a good match for human physiology, but it's not universally true. If it was, we wouldn't have seen the terrible disasters of recent years in human drug trials!

I've been a poor sleeper ever since childhood, and often went several nights at a time without being able to sleep as a young woman. But I'm 72 now, and don't have high BP, kidney disease, diabetes or - as far as I know - Alzheimers. In fact, I'm in excellent health. Clearly my risk of getting all the above is getting higher with each passing year, but that's nothing to do with my youthful insomnia. Ironically, I also started sleeping very well when I gave up paid employment at age 66!

I agree that lack of sleep is a serious condition. I know only too well from my own experience that it causes a lot of misery. I also know at first hand the extent to which anxiety about the condition feeds back into itself, making sleep increasingly impossible. I've been there. I honestly think what made the difference in my case is that there was no internet when I was young. I trained as a nurse and specialised in neuro in the 1960s and 70s, without ever having heard of sporadic or familial fatal insomnia. I actually had to google it when I started reading accounts of it on these boards a few months ago! I'm sure that if I'd had internet access as a young woman my anxiety levels would have been far higher than they were, and my insomnia even worse.

What Lisa is saying, and what I've said ad nauseam in these boards so won't repeat myself, is that the condition that needs to be addressed is the life-sapping anxiety that is caused by, and in turn causes, insomnia. I acknowledge that you're saying that too.

There's already enough panic among the posters on these boards without adding to it by suggesting that they're going to die if they don't start sleeping better.

9

Well, I think it would be very optimistic to say that humans are immensely superior to smaller animals when it comes to tolerating lack of sleep.

I know Gman2448 used the term "fatal insomnia", but does he really mean that and he's afraid to go to the doctor less the doctor confirms his fears? That would be nothing I'd smirk about – when I was 19 (c. 1971) I managed to get myself into an extremely agitated state not being able to sleep fearing I would fall into what we then called a cabbage state and be at the mercy of all the nasty things the medical profession could do to try to cure me. And, of course, at that time I had no idea of the power of drugs to control one's mental state, and none of the people I knew would have known what the hell I was talking about if I tried to describe my problem to them.

What I think I'm trying to say is that if you are in a state of high anxiety, you haven't slept for one, two, perhaps three nights, then yes you do have a serious medical problem and that, hopefully, anyone in that state can go to their doctor (without stigma) and get the help they need. It's probable in such circumstances that they are beyond the help of friends and trying to sort themselves is just going to have them spiralling into an ever worse situation. No antihistamine I've taken to try to get to sleep has had an anxiolytic effect, and if they don't help you sleep they just make you feel worse, make your whole situation worse.

Having written this, I'm now wondering a little about the Internet. Do people, now, in the situation, anxiety state, I was in, look it up on the Internet (providing , of course, they can maintain the mental concentration necessary to do that), find people in  similar conditions, and manage to console themselves with it, or does it somehow get them more agitated?

10

Hmm... As regards your last para, I think it's six of one and half-a-dozen of the other. I don't doubt that many people not suffering from health anxiety are reassured by the information and support they get from others on line. As a sufferer from a chronic autoimmune disease that doctors tend not to know a lot about, I've benefited greatly from management tips gleaned from fellow sufferers in the relevant forum of this site.

I think the problem arises with young people suffering from health anxiety of any kind (not just sleep-related) who, by definition, are rarely amenable to simple reassurance and who - as you rightly point out - could probably be helped by medical assistance. Obviously this condition has always existed. You describe suffering from it in the early 1970s, I can remember getting pathologically anxious about my health in the 1950s. The difference was that you and I had to make the effort to go to the local library and consult the very limited array of medical encyclopaedias available to us, which at least meant the range of possible diagnoses was reduced. More importantly, we weren't exposed to the damaging influence of others who shared the same fears. The fact that there was no one with whom we could share our worries paradoxically had a positive effect. Health anxiety is a normal part of growing up for many young people. It caused just as much anguish to our respective generations as it does to today's young people, but it was self-limiting. Most of us grew out of it. I have the impression that the ready availability of information on vanishingly rare diseases, together with the unhealthy stimulus provided by others believing that they too suffer from these diseases, is preventing the natural process of attrition of irrational, but perfectly normal, fears.

I'm not aware that anyone is "smirking" about the misery of sleep deprival. I sympathise deeply with all these young men (and just one young woman, as far as I'm aware.) As I've posted many times, I suffered from it myself for most of my life. I was fortunate in that the internet wasn't available till I was about 50, by which time I'd long since figured out that I wasn't going to die of insomnia, given that I was still alive.

I am, however, an old woman now and I reserve the right to be a bit grumpy sometimes! I just wish these young sufferers wouldn't go to their doctors with ready-made diagnoses - especially when they're diagnosing themselves with a condition that has an incidence of around one in a billion. As a former nurse, I know only too well the effect this will have on a doctor - especially the overworked GPs in Britain's NHS. Most of them will dismiss the patient out of hand, instead of investigating the cause of the insomnia and providing the necessary support to deal with it - which may indeed include medication on occasion.

I would say again to anyone out there who fears they might be suffering from SFI or any other form of fatal insomnia - please go to your doctor and describe all your symptoms, including your anxiety. You're far more likely to get the help you need that way.

11

All your symptoms are nothing but anxiety. Take vacation. I feel ‘pounding heart’ would have forced you to say ‘fatal insomnia’.

Don’t worry at all.

Just maintain your exercise and diet schedule. Avoid watching TV before sleep. Listening music or reading will help.

12

Hi do you still have this problem cause I haven’t slept all night last night and I feel off balance and having memory problems not slept a wink all night and still feel like a can’t am 15 from Glasgow love a response from someone 

13

You do not have fatal insomnia.  I do hate that you are experiencing some difficulty sleeping at only 15 years old, but just have some patience and sleep will come to you.  I don't know how long you've had sleep problems, but if it has only been 1 or 2 nights, you will be fine.  

Are you worried or stressed out recently?  Many times, stress and anxiety are the cause of sleep problems.  I am only guessing as to the cause, but if it is a particular worry that is keeping you up then you will likely return to normal sleep once you address the issue.  

If you want to post further about how your sleep trouble originated, I am sure several folks will be glad to help with advice. 

14

Thanks so much man for replying I starting having sleep problems about 3 weeks ago but it wasn’t that bad but I’m a anxious person I used to have intrusive thoughts but they went away and now all I can think about is this. Thanks so much for the reply appreciate it 👍🏼

15

I also managed to get to sleep last night at 11:30am which is good 

16

Hopefully that means 11:30PM!  If so, I hope you are back on the road to getting some good sleep.  My insomnia started with anxiety also; work stress that I couldn't let go of at the end of the day.  Going to bed with a full load of anxiety is always a bad idea.  Better off just to stay up until you get sleepy.  Also try some relaxation exercises, such as deep breathing and meditation.  

We anxious people do tend to worry more than others, and about ridiculous things sometimes, but it's still usually something you can identify that is causing your anxiety in the moment; relationships, work, school assignments, things not going well with friends, etc.  Figure out what it is that is bothering you in that moment and challenge the assumption you are making about the situation. If a heavy school load is bothering you, subconsciously we are saying to ourselves, "I'll never get it all done."  Take some time to write out what you need to get done and exactly what you plan to do about it the next day (important to write it down).  Or if you are worried that a friend is mad at you, ask yourself why you think that; usually the answer will be because they ignored you or you felt like they blew you off or something to that effect when in reality they could have just been busy and didn't mean anything by whatever they did.  Of course, I'm just rambling and throwing things out there, but we can almost always find exactly what is causing our anxiety in that moment and if we think logically about it, can correct whatever misguided judgment we are making about the problem.  

I also highly recommend working with a therapist to help with the anxiety.  I did so myself and it helped a great deal, but long after I should have and my sleep suffered for a lot longer than was necessary.  

17

i think i have fatal insomnia. i cant sleep day or night

18

i cant sleep day or night

19

If u still can fall asleep even for an hour, u don't have FFI (Fatal Familiar insomnia). FFI victims cannot fall asleep AT ALL. They typically die within a month (learned it from documentary). I am not trying to scare you. 

It is the fact. And it is a inheritance genetic disorder. if your parents do not have FFI then u will be fine. The symptom starts around the age of 30.

The fact is you don't have FFI so don't worry. 

I have the same problem as you. I thought I have FFI. And I am so worry and anxious about sleep. I just had 4 nights without sleep. no joke, 4 nights, zero hours of sleep. 

I think if you need to seek helps, if you still unable to sleep. If the Dr. prescribed you any drugs that is under benzodiazpem family, please think twice before u take it. because it is highly addictive and u will build your tolerance super fast, and the withdrawn syndrome is HORRIBLE. I am already addicted to lorazopem and i am on diazepam now, trying to come off from it but my insomnia went worse. 

Ask Dr. for alternative option

BTW, Queitaipine is a good one, which reduces your anxiety. 

Good luck. 

20

Have u got better plz say u have I’ve not slept now I can’t even nap tablets don’t work