Insomnia /Anxiety or 'Fatal'?

[Designer]

They always say 'Never Google anything health related', generally because the results always come out as horrendous, or that all signs lead to your impending demise.

In July myself and my girlfriend went through a pretty rough time with a burglary and a few other things. The previous month I had already been suffering with stress and anxiety. But one night at the end of the month as I lay there trying to sleep, my mind was racing, thoughts flying through relentlessly.

I've had the experience of the odd sleepless night before, especially when I've been heavy with workload (being a graphic designer and extremely creative). But I've always found sleep the next night. Not this time. Sleep didn't come, and so by day 2 I was already feeling pretty exhausted. Night 3 I had one vivid dream when I managed to fall asleep around 5am, before being rudely awoken by my alarm clock at 7am. This then carried on for a week, and I felt so sick and manic that I broke down in tears and ended up at the doctors.

The first doctor laughed it off and just said 'take some sleeping pills'. I did, and I had broken 'sleep' that ended up in me feeling like I had a terrible hang over the next day. Again, another week of barely no sleep and I ended up back at the doctors crying my eyes out. The second doctor asked me what had been going on in my life, and I explained about job issues, burglaries, deaths in the family as well as other worries. She said 'You're human, and your mind clearly isn't coping,' to which she signed me off for a week.

I thought a week off is what I needed, but my sleep got even worse.

Nearly three months on and there hasn't been a single night where I've slept through, or even know I've been sleeping. I feel like all I've been doing is laying there, unless I recall a dream, but I don't actually ever feel like I've 'woken'. My dreams blur into thought and I struggle to think 'Have I actually been asleep?' This isn't a few nights a week, this is every night. Three months of every night being the same.

The other week I googled the symptoms of 'Vivid dreams' and 'insomnia', and low and behold 'Fatal Insomnia' pops up telling me how I don't have long. I'll slowly lose my mind and cognitive functions. Of course there's more chance of someone winning the lottery, especially as there's no one in my family with the condition, so that leaves the 'Sporadic' form, of which you've got more chance of being struck by lightning 7 times in a row. Yet my mind thinks 'It's got to be someone, why not you?'.

So that leads me onto 'logical thinking'. I've had a prolonged period of stress, also a history of Chronic Fatigue Syndrome, where I was bed-bound in 2013 for four months, then pushed myself to the limit to beat it. I had Chronic Fatigue between 2012 and 2016, to which doctors say it's proven sufferers of CFS have had sleeping issues.

I had only just gotten my life back on track working full-time, without a sick day in 2 years, multiple promotions, then BAM, now my sleep is utterly awful and I feel rotten.

I've tried hypnotherapy, but whilst that's kept me calm, it's made little difference in sleep quality. I'm currently on Amytriptaline, which seems to calm my mind from racing in the evening, but Mitzapine made the issue 10 times worse and I was unable to sleep practically at all for 4 days straight.

On a bad run I'll average 1-3 hours which can last a week. On a good run maybe 4-5 hours for 1-2 days, but all broken sleep. I have the most mental vivid dreams, and I've never in my life been what I'd call a 'heavy dreamer'.

I've had OCD most of my adult life, and a history of the mental form of OCD, obsessing over anything and everything. I'm truly at my wits end, and whilst my limbic brain thinks I have fatal insomnia.

My logical brain tells me that this is all a culmination of stress and anxiety over a prolonged period. The limbic brain says 'Only a few more months and you'll stop sleeping completely. Other people with insomnia can at least get a few night of sleep a week, yours is every night, it's "different".'

Honestly, it feels like torture right now. And to be honest after seeing 5 different doctors, I actually no-longer know what do do. Guess I'm wondering if any of you have been through something similar and how you coped?

[Kingdawson]

You get that SFI starts off with big cognitive issues long before the insomnia part right? Jeez stop stressing about something you don't have.

Google sleep state misperception...that's What you have I'm sure.

[Worriedwellornot]

Hi I’m like you a chronic worrier and had HA all my adult life. My insomnia started over 20 years ago when I had a personal tragedy. I stayed awake non stop for 2 weeks. Eventually I was prescribed Zopiclone which worked straight away. Unfortunately I’ve never been able to get off them. I know when my stress level is high ( as now) my sleep is even worse. I’m currently waking in middle of night, unable to get back to sleep. If I had my time over again I wish I had never started the medication. I’ve read a lot about mindfulness and many books on the subject. One of the things that helps me is not to panic. I lie there thinking I’m nice and cosy and that this episode will pass. Panicking about wakefulness makes it worse. Sending hugs

[Designer]

Hi I’m like you a chronic worrier and had HA all my adult life. My insomnia started over 20 years ago when I had a personal tragedy. I stayed awake non stop for 2 weeks. Eventually I was prescribed Zopiclone which worked straight away. Unfortunately I’ve never been able to get off them. I know when my stress level is high ( as now) my sleep is even worse. I’m currently waking in middle of night, unable to get back to sleep. If I had my time over again I wish I had never started the medication. I’ve read a lot about mindfulness and many books on the subject. One of the things that helps me is not to panic. I lie there thinking I’m nice and cosy and that this episode will pass. Panicking about wakefulness makes it worse. Sending hugs

I completely sympathise with you on medication. They almost become a crutch and a way to mask what’s really underlying without fixing the route of the issue. I came off meds straight away when I had CFS and focussed on fitness and diet which worked. But with these sleep issues, I do need a bit of help, but have found meds make it worse, bar a very very low dose of Anytriptiline. Have you tried reading ‘The Chimp Paradox’ or ‘The Subtle Art of Not Giving A F*ck’? They really help states of mind.

Stress is always a catalyst for many things. Hugs

---------- Post added at 13:59 ---------- Previous post was at 13:57 ----------


You get that SFI starts off with big cognitive issues long before the insomnia part right? Jeez stop stressing about something you don't have.

Google sleep state misperception...that's What you have I'm sure.

I said I don’t believe I have it, just the way my mind works. Yes sleep misperception and temporal disturbance are two things mentioned.

Like I said, intellectually I know I don’t, but the limbic brain doesn’t know that. Fully get what you’re trying to say.

[Mumzy]

Designer, I feel for you, currently I’m in a very similar position.
I used to be able to fall asleep straight away and sleep right through.
I have not slept right through the night for prob 5 months now.
I came off my meds in Feb then BANG the anxiety and panic came back with a vengeance in May so I re started my meds in June (only taking a really low dose as I’m very sensitive to trying to build up slowly)
I’ve thought to myself perhaps it’s my meds but it can’t be as I slept for years with no problem.
My husband has recently started working nights (a month ago) so now I wake when he gets up and a lot during the night.
It’s doing my head in!!
I’m sorry I have no advice but just wanted to say you are not alone!!

[Kingdawson]

Loads of people in the world don't sleep through the night (me included). You're actually meant to wake up after a few sleep cycles naturally...It's just people that don't suffer from HA dont remember waking up (and dont panic about it).
Read more about the various sleep cycles to get a better understanding of things. As long as you're going through the REM stage you will be fine.


Here's an example https://forum.bodybuilding.com/showthread.php?t=166554721

It's a gym forum I visit. It's not actually an issue but our anxiety causes it to be an issue.

[Designer]

Loads of people in the world don't sleep through the night (me included). You're actually meant to wake up after a few sleep cycles naturally...It's just people that don't suffer from HA dont remember waking up (and dont panic about it).
Read more about the various sleep cycles to get a better understanding of things. As long as you're going through the REM stage you will be fine.

It's a gym forum I visit. It's not actually an issue but our anxiety causes it to be an issue.

The last week I’m waking up 5-7 times after vivid dreams and feeling exhausted. I overhear and sweat even in cold weather and I’m cruing a lot from exhaustion. Then the mind starts saying ‘Yep this is all signs of fatal insomnia.’

I’m not going to bed with lots on my mind, just unable to drift off for hours on end. It’s every night and it’s maddening.

So lots of R.E.M. sleep is normal?

---------- Post added at 15:05 ---------- Previous post was at 15:01 ----------


Designer, I feel for you, currently I’m in a very similar position.
I used to be able to fall asleep straight away and sleep right through.
I have not slept right through the night for prob 5 months now.
I came off my meds in Feb then BANG the anxiety and panic came back with a vengeance in May so I re started my meds in June (only taking a really low dose as I’m very sensitive to trying to build up slowly)
I’ve thought to myself perhaps it’s my meds but it can’t be as I slept for years with no problem.
My husband has recently started working nights (a month ago) so now I wake when he gets up and a lot during the night.
It’s doing my head in!!
I’m sorry I have no advice but just wanted to say you are not alone!!

Sorry to hear you’ve been struggling with this too, sounds like anxiety has a lot to answer for when it comes to insomnia. I’ve also found that when someone else wakes up I’ll also be woken up now.

[HullSimplibus]

They always say 'Never Google anything health related', generally because the results always come out as horrendous, or that all signs lead to your impending demise.

In July myself and my girlfriend went through a pretty rough time with a burglary and a few other things. The previous month I had already been suffering with stress and anxiety. But one night at the end of the month as I lay there trying to sleep, my mind was racing, thoughts flying through relentlessly.

I've had the experience of the odd sleepless night before, especially when I've been heavy with workload (being a graphic designer and extremely creative). But I've always found sleep the next night. Not this time. Sleep didn't come, and so by day 2 I was already feeling pretty exhausted. Night 3 I had one vivid dream when I managed to fall asleep around 5am, before being rudely awoken by my alarm clock at 7am. This then carried on for a week, and I felt so sick and manic that I broke down in tears and ended up at the doctors.

The first doctor laughed it off and just said 'take some sleeping pills'. I did, and I had broken 'sleep' that ended up in me feeling like I had a terrible hang over the next day. Again, another week of barely no sleep and I ended up back at the doctors crying my eyes out. The second doctor asked me what had been going on in my life, and I explained about job issues, burglaries, deaths in the family as well as other worries. She said 'You're human, and your mind clearly isn't coping,' to which she signed me off for a week.

I thought a week off is what I needed, but my sleep got even worse.

Nearly three months on and there hasn't been a single night where I've slept through, or even know I've been sleeping. I feel like all I've been doing is laying there, unless I recall a dream, but I don't actually ever feel like I've 'woken'. My dreams blur into thought and I struggle to think 'Have I actually been asleep?' This isn't a few nights a week, this is every night. Three months of every night being the same.

The other week I googled the symptoms of 'Vivid dreams' and 'insomnia', and low and behold 'Fatal Insomnia' pops up telling me how I don't have long. I'll slowly lose my mind and cognitive functions. Of course there's more chance of someone winning the lottery, especially as there's no one in my family with the condition, so that leaves the 'Sporadic' form, of which you've got more chance of being struck by lightning 7 times in a row. Yet my mind thinks 'It's got to be someone, why not you?'.

So that leads me onto 'logical thinking'. I've had a prolonged period of stress, also a history of Chronic Fatigue Syndrome, where I was bed-bound in 2013 for four months, then pushed myself to the limit to beat it. I had Chronic Fatigue between 2012 and 2016, to which doctors say it's proven sufferers of CFS have had sleeping issues.

I had only just gotten my life back on track working full-time, without a sick day in 2 years, multiple promotions, then BAM, now my sleep is utterly awful and I feel rotten.

I've tried hypnotherapy, but whilst that's kept me calm, it's made little difference in sleep quality. I'm currently on Amytriptaline, which seems to calm my mind from racing in the evening, but Mitzapine made the issue 10 times worse and I was unable to sleep practically at all for 4 days straight.

On a bad run I'll average 1-3 hours which can last a week. On a good run maybe 4-5 hours for 1-2 days, but all broken sleep. I have the most mental vivid dreams, and I've never in my life been what I'd call a 'heavy dreamer'.

I've had OCD most of my adult life, and a history of the mental form of OCD, obsessing over anything and everything. I'm truly at my wits end, and whilst my limbic brain thinks I have fatal insomnia.

My logical brain tells me that this is all a culmination of stress and anxiety over a prolonged period. The limbic brain says 'Only a few more months and you'll stop sleeping completely. Other people with insomnia can at least get a few night of sleep a week, yours is every night, it's "different".'

Honestly, it feels like torture right now. And to be honest after seeing 5 different doctors, I actually no-longer know what do do. Guess I'm wondering if any of you have been through something similar and how you coped?

We have been in the same boat, my friend.

A few months back, I got 2 hours of sleep within a week, and I too convinced myself that I had SFI.

But let me get something clear. You don't have SFI. AT all.

It is practically impossible to get Fatal Insomnia if it isn't inherited. Not only that, SFI starts with cognitive issues BEFORE the insomnia sets in, I have been told.

So for example, you can get 8 - 9 hours a night, but even though you can get that much sleep, you basically are going crazy, and by the time you can't sleep, you have already lost your mind with dementia and ataxia.

I'd only worry if I were you if i'd been struck by lightning 7 times and still survived to tell the tale :)

What is your sleeping environment like? Do you go to bed when its light or dark, do you have a light or a lamp on, how much caffeine/brain stimulants do you drink in the day, do you use technology before bed e.t.c.

[Designer]

We have been in the same boat, my friend.

A few months back, I got 2 hours of sleep within a week, and I too convinced myself that I had SFI.

But let me get something clear. You don't have SFI. AT all.

It is practically impossible to get Fatal Insomnia if it isn't inherited. Not only that, SFI starts with cognitive issues BEFORE the insomnia sets in, I have been told.

So for example, you can get 8 - 9 hours a night, but even though you can get that much sleep, you basically are going crazy, and by the time you can't sleep, you have already lost your mind with dementia and ataxia.

I'd only worry if I were you if i'd been struck by lightning 7 times and still survived to tell the tale :)

What is your sleeping environment like? Do you go to bed when its light or dark, do you have a light or a lamp on, how much caffeine/brain stimulants do you drink in the day, do you use technology before bed e.t.c.

Thanks for your reply, it’s reassuring to hear someone in a similar position. Trouble is, you read things that are similar, like a bloke who had SFI who survived for a year with full mental capability with insomnia, but in the end sadly died. The more you read, the more you make all the links and convince yourself.

Lately I’m getting really bad dizzy spells the last 5 days, I’m not sure are from Amytriptoline of from lack of sleep. Could be because I was on Mirtzapine which made sleep worse, then switched to Amy. Also getting light muscle spasms every now and again. Crying a lot when sleep doesn’t come.

Room temperature fine, black out blinds and very low noise level. Even have a fan going for white noise. Diet has been AWFUL up until the last two days because I was consuming so much sugar for energy. So I presume that has a negative impact. Tv I watch in the lounge only and not the bedroom and turn phone off after 9. Go to bed at half 11. Zero caffeine after 10am.

Maybe it’s lack of exercise, poor diet, way too much stress and an anxiety issue?

Last night my gf said I was snoring heavily between 1 and 3. Last two nights I think I’ve slept 3-4 hours straight with a vivid dream at the end, but have to remember a dream to think have I slept. The fact she said I was snoring loud reassured me slightly.

Scary what we can convince ourselves.

[lofwyr]

I actually have a neighbor with SFI, and it goes waaaaay beyond normal insomnia. There is no questioning it.

Not. At. All.

Also, it affects about one in a million people at most, and is so rare that only 12 examples of it in history have been studied in medical literature.

[Phuzella]

I'd say it's definitely lack of exercise, poor diet and stress. :)

[Designer]

I'd say it's definitely lack of exercise, poor diet and stress. :)

Seeing GP as super dizzy right now. Actually slept four straight hours last 3 nights (though still don’t remember waking up, have to check clock).

Starting to think relapse of Chronic Fatigue Syndrome or thyroid as there’s family history there.

Utterly bizarre and cannot control my emotions at the moment. Constantly breaking down in tears. Hopefully GP will have answers as she’s the best one there.

[Designer]

So, it’s been three months, and now I’m starting to hear strange noises as if they’re truly real when I’m laying in bed and trying to sleep. I can lay for hours quietly in the dark, not much on the mind, without so much as actually falling asleep.

I’m dizzy, I’m angry, I’m constantly breaking down into tears and crying fits. My body hurts all over and I have tremors in my hands.

When I have slept, it’s like falling asleep in reverse, the crossover from sleep to consciousness is so subtle I feel like I’ve been laying in bed for hours still. It’s been 3 months of this hell and I’m beginning to dread going out in public. I feel disorientated in crowds of people now and this feeling of lightheaded ness and nausea is growing.

The doc prescribed Zopliclone, which one will get me to sleep for 3-4 hours straight, but again, never know I’ve slept unless I recall a dream. And the dreams are just getting weirder and weirder.

I can’t tell if my anxiety is at such a high level I’m losing my mind if there’s something truly wrong with me.

It’s becoming an unbearable torture day to day.

I am getting CBT, I am doing acupuncture and hypnotherapy. I just want my normal sleep back because it feels like a slow torturous death.

[Designer]

So, it’s been 4 years.

4 years of insomnia every night, and still no feeling of ‘waking’, but 1,000’s of extremely vivid dreams. It’s been manageable though as was able to fall asleep for 3-4 hours, dream, then wake every night.

Recently my then girlfriend, has now become my wife. We’ve been married 2 months, and post-wedding I started feeling terrible fatigue in my legs with muscle twitches.

Sure enough, my sleep has gone to the dogs again. Only this time my legs feel like jelly, I have really bad muscle spasms, I sweat terribly with not much physical activity, and I just feel totally rotten.

What does my brain do? ‘Yes you’re now in the final throws of SFI.’

Sweating - Yes
Muscle Spasms - Yes
Insomnia - Yes

I’m having the feeling of being semi awake with dreams now too.

I’m guessing this is just my mind going into absolute crazy mode…