The Worst Disease You Can Get: Fatal Familial Insomnia and the I-Function

Well sometime around the age of 60 or so I lost the ability to sleep "normally". Actually since my late 20's "normally" meant either at first drinking until I passed out (TO SLEEP I must insist - I was never an alkie) or later someone showed me how I could "put myself under" with about 6 mg of melatonin combined with a couple of fake Benadryl. Anyway that stopped working and I really freaked out. I went to some "low-end" shrinks (I figured I knew what I needed, just needed the prescription) but they kept prescribing horrible things with really bad side effects and addictive tendencies. But the reason I knew what I was looking for was I was simultaneously getting psychotherapy and learned that I had (pick the name you like: complex PTSD, developmental trauma, attachment disorder) from growing up in a thoroughly dysfunctional family that was about 1000% in denial, and the stress I was under was colossal (and to boot I also was alexithymic and had other physical manifestations). So what I was looking for (and am still on today) is 50 mg/night of seroquel, this usage is "off-label" but the war vets with PTSD know how well this works on insomnia. The fact that I was alexithymic also meant that most of the "conventional" psychotherapy doesn't work on me. The problem winds up being related to your brain rhythms (EEG) are way off from all the stress and your amygdala has your body in full panic mode and is commanding your adrenal glands to just flood your bloodtstream with cortisol (most shrinks STILL don't understand this explanation but it's true) and you need infra-low neurofeedback therapy to start to fix it, THEN you might be able to accept other kinds of therapy. I mean sure you'd probably see some or all of these other issues and symptoms but if you've never been to therapy at all this COULD just hit you all at once like a ton of bricks. Anyway nobody came close to following this line of thought here so I figured someone might benefit from my two cents, this probably sounds "rare" but it's actually WAY more common than FFI or SFI and if you know what you're looking for some aspects or another of my story are almost in epidemic now that we know a lot more about the results of being a victim of familial narcissistic abuse.

Hi,
I have been experiencing insomnia for about four months to date. It initially started in January, where I had difficulty falling asleep, but once I was asleep I stayed asleep. My sleep onset remained at the same level of difficulty, but then I started to awaken frequently throughout the night. I Googled insomnia, and I happened to come across FFI, and a related variant, SFI. Initially, learning about FFI terrified me; I became very anxious about my insomnia and could not sleep well throughout the night. Since then, I haven't been able to sleep very well; in fact, I notice that when I fall asleep, I enter REM very rapidly. I assume, and fear that I am not able to achieve the slow-wave sleep stages. Apparently, people who have these forms of insomnia report vivid dreaming, which indicates that they are only achieving REM sleep. I don't have a family history of this disease, but I'm very scared that I may have SFI, for which you do not need an inherited gene linking you to the disease. I know that this is exceptionally rare, but what if I do have it? I have not been experiencing any other symptoms indicative of neurological dysfunction that are associated with FFI or SFI, except the insomnia--I understand that other neurological symptoms are very conspicuous with the disease, such as increased blood pressure and heart rate, hallucinations, increased anxiety, and motor dysfunction, in addition to a cognitive decline, among other symptoms. I've experienced none of those things. If I had this, would those symptoms manifest themselves by this point?

Also, I've noticed that a few others on here report complete insomnia without feeling tired. I'm experiencing this as well, what was your experience with this like?

Just came across this site. I know nothing about this disease but someone wrote a long thing on how insomnia can't kill you, I had to comment. I went a full 9 days 6 hours zero sleep, I take that back I was micro-sleeping by end and I slept a couple times less then an hour in less then 15 min increments, on the 9th day 6th hour I woke my husband at 2 am told him I had a very unusual headache, I suffer from status migraines and cluster migraines two of the most painful but this was different I knew something was wrong, he rushed me to hospital they did eeg brain scan also mri for scan and within an ur took my husband out of the room said even though we didn't have inurance if my husband couldn't promise that dr I would go somewhere for 3 days and sleep uninterrupted (I had 4 small kids at time) they were admitting me as I would be DEAD within the next 48 hrs my brain was shutting down. I wasn't on any drugs I suffer from severe insomnia so don't go telling people it can't kill them when it can as it almost did me. It's documented in Bellevue Washington.

I am currently in the last stage of this terrible disease. I have full dementia. I do not feel any emotions sadness joy happiness i do not sleep at all no medications work. I close my eyes and have a visit dream but i do not enter through the five stages of sleep. I am dreaming while still awake. I can not walk and am slowly losing the ability to talk. Writing this is hardest thing i have even been able to do. I just wanted to ask for prayers. I know im dying. I do not have the familia i have sporadic.

This goes out to all of you who think you have spontaneous fatal insomnia (sFI). Please read this, as I will help you understand your condition from a post-insomnia perspective.

For those who have a family history of the disease (FFI), go see a doctor. I will cross my fingers for you. A cure is expected within 10 years.

Now, to all others:

You do not have sFI and you will not die. Over the course of three decades, only a handful of people have been diagnosed with this spontaneous variant. Judging from the posts in this forum, that number just doubled. Obviously, that is not the case. Furthermore, judging from the date of these posts, you seem to have a very interesting variant, as you are able to write on a computer far past any documented cases. Most people in this forum would be dead by now if they had sFI.

You do not have fatal insomnia, you have insomnia.

You will not die. Insomnia very uncomfortable, physically and mentally, but you will not die.

Insomnia is not lethal, but very exhausting. I know this, because I suffered from this myself some time ago. I had a week of very degenerative sleep, and on the 7th day, I woke up from very superficial sleep, with a burst of adrenalin, thinking – Oh my God, I have FFI, the spontaneous version!

Unfortunately, I had ended up at the weird part of youtube a year before, watching a documentary on FFI. Within a few seconds that morning, I had diagnosed myself with sFI and was making plans for what I was convinced was to become the last year in my life. Needless to say, it didn’t help me sleep much.

I think several of you have bumped into this forum searching for remedies and knowledge about your condition. After lacking sleep for long periods of time, trying various medicine and techniques to fall asleep, you are unable to. So you are told this tale about a deadly variant of insomnia that aligns with your condition. You can’t sleep, you are warm, you bump into things, your memory is failing you… The list goes on. So now you think you have it. I did to.

What happened to me was a classical tale of insomnia. I had suffered stress and anxiety at work and home for a long period of time, often skipping sleep to meet deadlines, irregular eating, no exercise.. you name it. A prominent precursor to insomnia is stress and anxiety. And paradoxically, anxiety really reinforces sleep disorders. It also blows your mind and body into an alert state where risk is highly overestimated. Anxiety is your body reacting to lethal danger. So saying that the probability of sFI is low, you probably don’t have it doesn’t help, right? I mean, those nine people, they were someone, why not me? Wouldn’t it be typical for me to have a condition with a probability equal to winning the lottery AND being struck by lightening (as someone nicely put it in a previous post)?

On that morning, my anxiety and sleep deprivation also deprived me of thinking rationally and calmly about statistics. The probability I had regular/ordinary insomnia was much higher. In fact, most people suffer from it sometime during their life. With my history prior to the insomnia, there was no doubt I was a classical example. But adrenalin was rushing through my body, reinforcing my anxiety, not to mention inability to fall asleep. After all, I had sFI – how could I sleep?

Insomnia is a horrible condition. Your mind just can’t rest, you are unable to calibrate from day to day and ultimately, you are afraid something severe is wrong with you. Your system is tripping – when you’re about to fall asleep, or have fallen asleep, your body wakes you up. Your body is a fine tuned system, biologically engineered over millions of years of evolution. And the anxiety that has led to, or is a consequence of, your sleep disorder, is telling your body that you need to stay awake because danger is imminent. Although the idea of having sFI is highly irrational (from a probabilistic perspective), the reaction of your body is responding as though you were in lethal danger. So it won’t, it can’t let you sleep. Because your ancestors survived in situations where there in fact was lethal danger (a hungry bear or lion was waiting for them outside their cave), that same system is now responding as though you were in that exact situation. In reality, you lie in bed, or sit in front of your computer, in the middle of the night, safe, but convinced that you are one of the extremely few cases of sFI.

Upon suffering from insomnia for sometime, reading everything I could about FFI and sFI, I realized that I was a classical insomnia case (cognitively, my body still believed I had sFI for a long time). sFI/FFI is a preon disease and insomnia is one of several symptoms. The sleep disorder symptom is highly emphasized because it is entertaining (articles, documentaries and the like all focus on this one symptom because it is so odd and scary to us humans to die from not sleeping). sFI/FFI is not contagious, and since so few people has it, environmental conditions doesn’t seem to be a factor for the spontaneous variant. In fact, the rare occurrence of sFI indicate that this is a random (and very very rare) gene mutation. Gene mutation is part of what has driven revolution, some of them are good, and some of them are bad. Random mutations occur, but there is no particular reason for it happening. It’s just random. You have about 24 000 genes. Spontaneous mutation is rare, and the chance of that happening to that one gene, and then in a manner that gives sFI, is so extremely rare it's ridiculous. Again, being struck by lightening and winning the lottery might be just as likely.

What is very very likely, is that you have insomnia, and that your fear of having sFI is reinforcing your sleep disorder.

What helped for me was the following
1) Sleep hygiene. People are suffering from insomnia like never before, and for good reasons. Our body needs rest. So if we stress at work, are anxious about social relations, money and the like, we increase stress levels in our body, sending it into states of insomnia. Sitting in front of your computer late at night, irregular eating and lack of exercise also all contribute to this. In my insomnia state, I thought sleep hygiene was rubbish, but in addition to expose your body to a rhythm that motivates sleep from a physical perspective, it also help you mentally prepare better for sleep. So whatever you do, try to follow a rhythm and exercise habits that promote sleep
2) Chillax. You will not die. It’s just very uncomfortable. Its also temporary, even if its chronic. Your body will give in. A technique I used was to allow myself to not sleep. When I woke up in the middle of the night or was unable to fall asleep, I said to myself “Ok, so I might not be able to sleep tonight, but maybe I will tomorrow or the day after. My body will give in eventually. After all, my body doesn’t want to kill me”. Remember that – your body is a complex system working tirelessly to keep you alive. It’s probably why you can’t sleep right now. So after lacking sleep for a long period, it will be like “Ok, f*** it, there might be some bears or lions outside the cave, but right now this body needs to sleep”. Religious people can pray, atheists can find comfort in science, which if interpreted rationally, will convince you by far that you do not have sFI and that your body will put you to sleep when it absolutely needs to.
3) See a doctor. If you are suffering from insomnia and suffer from panic attacks or other stress-related symptoms, there is medicine, therapy and the like to help you get back on your feet (or rather, on your back).
4) Remember – you will not die. You might fell both mental and physical discomfort, but you will not die.

Goodnight!

About 3 months ago I began not sleeping. I've been to my primary care doctor, urgent care, and the ER 3 different time$.I tried Melatonin, Alteril, and other OTC sleep aides with zero effectiveness. I used to abuse alcohol and Marijuana for more than a decade. I fear that I may have permanently my brain and the part of it that controls sleep. All of my lab work has come back in normal ranges. Thyroid etc...I have been prescribed Ambien (didn't work, Valium, and am currently taking Seroquel. I get a few hours of non restorative sleep. I've been feeling a burning sensation throughout my body and headaches every night. I have a sleep study scheduled in about two weeks. My personality has been completely altered (no joy or sorrows) I just feel dead emotionally. My short term memory is shot and I have trouble concentrating. I am terribly anxious and very paranoid something very serious is wrong with me. I've had a mental health evaluation with no depression or anxiety issues with the exception of not being able to sleep at all without very strong medication. I've tried exercise, yoga, meditation and of course lots of prayer. Nothing is working besides Seroquel, which helps very little. I am writing this post to see if there are any other people who've got any suggestions or thoughts, as I'm becoming more desperate with each nearly sleepless night.