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

AnnaM's picture

Pierluigi Gambetti, one of the discoverers of the condition known as fatal familial insomnia (FFI), claims that it is "the worst disease you can get." (5) Given the vast number of diseases in the world, Gambetti's claim seems farfetched at first glance, maybe even selfish; who wouldn't want to take credit for discovering one of the worst diseases in the world? But a quick overview of the disease presents solid evidence in favor of the claim- and some interesting insights about the many tasks of the I-function.

FFI has been discovered in only 28 families worldwide; it is an autosomal dominant gene mutation, meaning that a parent with the disease has a fifty percent chance of passing it on to his or her child (2). That much is predictable. But every other aspect of the disease is wildly unpredictable, forcing family members to make difficult decisions. If parents have such a high chance of passing on the disease, one might ask, why don't they simply choose not to have children? The answer: FFI , unlike many other fatal genetic conditions, doesn't appear until the victim is middle-aged, and tests to see whether parents carry the FFI mutation only recently became available (1). Here the first questions of the I-function, and the first paradoxes of the disease, appear. If this disease occurred in childhood, natural selection would have long ago done away with it. Because it does not strike until middle age, however, parents who may be carriers must make difficult decisions about childbirth. Paradoxically, it is in the parents' best interest to have more children, in order to ensure that at least some live FFI free into old age. More children, however, also means more potential FFI cases- a tough paradox for the I-function to work through.

Next, the symptoms. FFI baffled investigators for years, because certain symptoms resemble encephalitis, end-stage alcoholism, and dementia, among other conditions (1). But the hallmark of FFI, which the aforementioned conditions don't necessarily show, is the complete inability to sleep. The brain wave patterns that appear on FFI patients' EEGs go up and down wildly, in a pattern completely unlike the normal sleep-wake cycle; they may still show patterns indicative of REM sleep at night, but they do not pass through the sleep stages that typically precede REM, and they can still move while in the REM stage (5). There are also unbelievable highs in pulse and blood pressure, excessive sweating and an eventual loss of coordination and other gross motor skills (including speech) before the victim finally falls into a coma-like state and dies (1). But, most horribly, the thinking portions of the I-function remain intact, even as the rest of the body deteriorates (4). Because FFI is invariably fatal, patients understand that they will die, can talk and write freely about their coordination deteriorates and understand their fate up until their death (5). Some diseases, like Alzheimer's disease, are tragic because their victims lose the ability to describe their decline; in these diseases, the I-function deteriorates along with the physical body. But FFI is tragic for precisely the opposite reason; it leaves the I-function intact, even when its victims are clearly in physical agony.

Even the agent that causes FFI defies conventions. It is a prion, a form of infectious protein. Humans naturally produce thousands of intricately folded proteins, and the vast majority of them are harmless. But if one protein happens to misfold in a harmful way, it can trigger a chain reaction, leading other proteins to produce similarly harmful forms; the immune system cannot counteract the chain, since it does not see the proteins as infectious agents (4). The exact mechanisms behind this process, and the reasons why it should be fatal, aren't well understood. The effects of prions on the brains of FFI victims, however, are well-documented. In most areas of the brain, FFI victims show remarkably little damage. The thalamus, however, is utterly destroyed, full of holes (3). Given this evidence, one might try to make the argument that the I-function cannot be located in the thalamus; after all, FFI victims remain completely able to think and comprehend the world, even as the prions destroy that part of the brain. However, the I-function isn't limited to one section of the brain, and it does not only control thinking and speech. Indeed the sleep-wake cycle, so damaged in FFI victims, is also regulated in part by the I-function; people simply tend to forget this fact, because sleep feels like such a natural part of our existence. Only in unusual cases, like the severe insomnia of FFI, do we remember the I-function's role in this cycle.

FFI, then, presents yet another example of why it's useless to try to pin down one precise area where the I-function lies. One can see from FFI victims that the parts of the I-function that have to do with language use and comprehension, with naming people and objects in the world, probably aren't located in the thalamus. But the thalamus must play some role in the sleep-wake cycle, judging from FFI victims' brain damage, and the I-function aids in sleep-wake cycles as well; one cannot give an exact location for a function that performs so many diverse tasks.


Web Sources:

1) Case Study: Fatal Familial Insomnia; Location: Venice, Italy; To Sleep No More

2) Dying for Sleep: Researchers Track the Cause of a Rare but Fatal form of Insomnia

3) Fatal Familial Insomnia

4) Biofundamentals: Protein Folding and Turnover

Non-Web Source:

1) The Family That Couldn't Sleep: A Medical Mystery, by D.T. Max. Random House Publications, New York, 2006.


luke's picture

insomnia on the way out

I am getting worst with the insomnia I can feel my body is shutting down I'm on the way out
I feel what a waste of a life. I can't do anything. It's either me drop dead or just suicide which I am leaning towards
other parts of the body is n Po t function well. Anyone got suggestions?
Doctors are hopeless. I am losing my faith as well.

Serendip Visitor's picture

Re: insomnia on the way out

I hear you are in pain. You need to talk to someone right away. Call 1-800-273-TALK (8255) (the National Suicide Prevention Lifeline)

Barbara Teittinen's picture


Do you know where I can get tested for this disease?
I live in nh.near mass. Thanks.

Jerry Hufford's picture

fatal familial insomnia

I think I have this disease. I can't sleep at all. My body is wasting away. Can someone help me, I've tried drs. And thier pills. Nothing worked.

luke's picture


Hi I can relate to that too.
Insomnia. I have tried pills after pills.
Other parts of my body not working well.
sometimes I feel that one day I may just take my own life away.

kim's picture

I finally started sleeping:)

I finally started sleeping:) celexa and xanax with 3 beers. Works for me. God bless you all and try to sleep ♡

Anon's picture


Randomly came accross this article and I'm not gonna lie, these comments are entertaining.
1) If you have the disease mentioned, you will DIE. If you have no family history of the disease; YOU DON'T HAVE IT. It's genetic. You can't catch it like a cold.
2) If every doctor you've seen thinks you need to see a psyciatrist and that you're mentally unstable, you probably are.
3) Jesus won't save you from shit. It's a genetic disease that you're born with.
Not meaning to be a negative nancy but this article has been almost ruined by all the uneducated, poorly punctuated comments below it.

MElastiGirl's picture


Thank you! I generally feel bad for the ignorant, but these comments just can't hide the crazy. I have a rare genetic disorder, too--thankfully not this one. I am, however, a raging insomniac. It's true that it is impossible to go months without sleeping without dying, hence the word "fatal" in this disease's name. It is not a curse, and you can't pray it away. To my fellow insomniacs who have posted... You are likely getting small "microsleeps" or you would be dead already. For those of you who keep invoking Jesus, please name one person you know (and I mean a real person you have met) who has been cured of a genetic disorder through prayer--yours or anyone else's. It is cruel to suggest to people who are suffering from an incurable disease that they have brought this on through some brand of sinful behavior. Shame on you! Have you ever read any book other than the bible?'s picture

Anon, Jesus can heal anyone

Anon, Jesus can heal anyone of anything. Those who lack faith deny the power of God. This disease may seem "genetic" but it is only "genetic" because it is a curse that has come down the family line due to past sins or an actual curse that someone has put on the person and their descendants. You don't have to believe me, I know what the truth is. Why would you think God, the creator of you and me and this entire planet- everything, could not cure something like this... It is easy for Him to do, a person just has to get in line with His will.... And if it is His will, He will heal them... If you seek Jesus, you will find the truth.
Be blessed.

Pastafari's picture


Knowing the truth and believing in something are two far different things, sorry. I know The Flying Spaghetti Monster watches over the Earth and that is fact. Believe as you wish and take care!

Sukanta Debnath's picture

I have no Idea wether I have Insomnia or I think like that

I was sleepless for a month due to too much negative thinking on diseases so naturally I lost my mind I turned violent due to lack
of sleep I can sill remember those my rough days In Hospital then I was diagnoised by a Psychatrist then I got a real relief he did inject me a kind of Injection which sent me to deep sleep for continue 2 days. I am okay now but still sometimes I get depressed due to lot of tension I cant sleep well on daily basis but I discovered myself that if I make myself bussy in something I feel sleepy I get slept for more than 7 hours in a day. its been 7 years now I don't take any Pills or medications. Because sleeping tablets can let you go to sleep but it makes your Insomnia more worser even I heard sleeping pills are not good for male because they have a lots of health side-affects so I don't rely on pills but I researched on sleep that there is a few chemicals in our brain which promotes & maintain our sleep & good mood one is Tryptophan & Serotonin. probably you guys can take Red meat, pea nut, spinach, cheez, Milk before go to bed & brown Rice in your diet which will help you to give these two necessary chemicals or Amino Acids. I heard Turkey meat is a good meal which will make you fall in asleep because its rich in one chemical Tryptophan. One more thing if you get depressed very often my suggestion would be for you always try to sit under Sun light because during night our body produces one Enzymes or chemicall called Melatonin which helps to make us fall in sleep so yeah... Warning : Before you take my advice for granted do your own research too & I won't be Responsible for your problem later & Thanks. You can email me because Its just to explore the knowledge & share my story & Real History of my Sleeping Diagnosed & problem. My Email : & May God bless & help everyone who is not getting sleep properly & for those who is suffering from FFI Amen !!! Love you All

Niall Hutton's picture

You don't have FFI

If you had FFI, you would be dead by now. It usually takes 7 to 36 months to die from it and the disease develops with four stages:

1) increasing insomnia, resulting in panic attacks, paranoia and phobias. This lasts for about 4 months.
2) hallucinations and panic attacks become more noticeable. This lasts for about 5 months.
3) Complete inability to sleep along with rapid weight loss for about 3 months.
4) Dementia is the final progression of the disease, lasting for 6 months until the patient dies.

These times are all averages, but you definitely don't have it. If you did, all those sleeping pills and barbiturates wouldn't help you at all, in fact if you have FFI they are more likely to worsen your symptoms, oddly.

(NB. FFI is not just hereditary; random mutations can occur at any point and you can get it, but it is extremely unlikely.)

Serendip Visitor's picture

My doctors have all given up

My doctors have all given up on me... I feel like i could have this but maybe i'm over thinking. My insomnia is geting progressively worse. Sleeping pills exacerbate things, i'm sweaty, chest stagnant paints, my brain feels like a old sponge. My memory is cutting out, speech is variable... excessive stage 1 sleep if any sleep at all and almost no delta.... the only thing different is that I had this over the course of 14 years... and i'm at the end of my rope... is there a way to get tested for this?

Serendip Visitor's picture

not able tosleep

last couple weeks no sleep noinsurance total stressed out don't know what to do help ! thanks mike

Serendip Visitor's picture

If anyone thinks they have

If anyone thinks they have this, they should try the paleolithic or vegan diet with no refined carbohydrates or processed foods. The chemicals in such foods can be harmful to us and there is the simple fact that many of these foods are not designed to be beneficial to us. Corn, no longer natural is a gmo that is found in almost every processed food. I know people that have become cured from serious health problems by going off these foods. You should research it.

Richard Smart's picture

Prion diseases

I think that prion diseases are the worst type of disease extant today. They are absolutely horrible, totally un-treatable, and always fatal. I lost a friend to familial CJD a couple of years ago, and it was terrible watching him suffer and eventually die from it, absolutely heart-breaking. Perhaps if it does transpire that there is an as-yet unidentified mass epidemic of variant CJD dormant in British people, a cure will be found, but until one is, prion diseases are a death sentence, and a horrible way to die.

Holly's picture


I don't mean to be rude, but fatal familial insomnia does not have a cure or even a treatment. If you have it, you will die 100% of the time. Going in a diet is not going to change that. Please stop trying to diagnose yourselves - FFI occurs in less than 1 in 30 million people, it's inherited, it's 100% fatal, and it's only been found in about 40 families around the world. Odds are that you have something else.

And please stop spreading misinformation about this disease, like "Try the paleolithic diet, chemicals in food make people sick!". It has nothing to do with food. FFI is a fatal degenerative prion disease that is completely unrelated to diet.

Kara Cohen's picture

fatal insomnia

I have fatal insomnia. I haven't slept in nearly 8 months, brain/body burn, psychotic, confused, apathetic, went through early menopause at 38. Unfortunately, I'm broke and don't have medical insurance. I live in Nashville, 'TN with my father who just thinks I'm mentally ill. That's not the case. I stopped sleeping in July. Is it true that changing your diet can cure you of fatal insomnia? Please explain this more to me. Thank you.

Serendip Visitor's picture

hello kara

Kara ,please call me i will try my best to help you witj the right info,ive been threw all this and barely sleep or normally. Seven eight six four nime nine eight six seven five. Heather.

Serendip Visitor's picture

Kara, Jesus can heal you, I'm

Kara, Jesus can heal you, I'm not lying, He is real! He will heal you, just give your life to Him and live for Him not sin. email me:

I know the unexplainable torture it is to not sleep night after night, Jesus can heal you, please believe me everyone, it is true!!! He healed me! I know how desperate and scared all of you are...please come to Jesus, he is the only one who can truly heal you and that is the truth!

Serendip Visitor's picture


Kara,do you sleep at all please tell me all your,symptoms ive been to three doctors no one knows whats wrong with me.I can try to help diagnose you. Ive spoke to alot of doctors,prion disease does come with other symptoms .Tell me everything your experiencing.

Serendip Visitor's picture

hi karen

Please tell me im the same way ,do u twilight sleep?

Serendip Visitor's picture

hi karen

I can relate 100% how you feel Karen. My dad thinks im mentally ill as well. I spoke with someexsperts about prion disease , they told me prion disease has other symptoms like problems with balance, in canada there is free health care but i hate american doctors they never even diagnosed me , so no one knows why. One doctor told me it can be high orexin levels,but that is a test that requires spinal fluid but they r not doing that test.

Kara Cohen's picture

fatal insomnia

Yes. Thank you for replying. It's not mental illness. It's hard not having any health insurance and I do have problems with balance as well. My body and brain burn profusely. It's so scary. Do you have this disease as well? It's so difficult to get a diagnosis. I found some phone numbers on and I will call tomorrow. I'm very scared and need guidance. I am dying and can't get a grip. Need help!!

Serendip Visitor's picture

hi kara

Did you find anyone to help ,what did the prion alliance say

Serendip Visitor's picture

hi kara

I dont carry the genetic , but i think the sporadic. Doctors think im menrally ill but why when i lay down im so tired but dont sleep only this wierd dream like state in small sessions.tell me kara more you will.have to call me so i can try to diagnose you , im not a doctor but i have soooo much education on this from my symptoms going to horrible nuerologists with my crap ass insurance,here in florida but i spome with alot of exsperts.please call me

gurlygirl's picture

Also if you cant sleep by

Also if you cant sleep by obeying God alone, then you need deliverance too!

gurlygirl's picture

Listen everyone... I feel

Listen everyone... I feel your pain, i couldnt hardly sleep at all for 5 months.. I eventually had to go on medication to go to sleep. It worked but i didnt like taking medication and i felt like a slave. Now i am free of medicine and I can sleep at night. This happenee because i gave my life to Jesus and I obeyed Him and He healed me. God will heal you if you make Jesus the lord and savior of your life. That means making Him number one, tuning away from all willful sin and letting your old self pretty much die. Your whole life must be given to Jesus. I know this may sound hard but it is worth it and God will heal you. I know how desperate you can be to want to sleep. I know the reason why everyone cant sleep but im not going to say it right now. If anyone needs information on how to follow Jesus correctly please email me. He will heal you and you will sleep but you must give up your sins and your old ways. Be blessed everyone!!

Kara Cohen's picture

fatal insomnia

Hi there. I desperately need God's help. Thank you for responding and caring. I'm in excruciating pain. Brain and body burn like crazy!! Nobody believes me or cares really. Doctors don't even know what this disease is. I really need your help and could use spiritual help and guidance. Thank you. I don't know how to email you but you can call me as well at

Kara Cohen's picture

fatal insomnia

I know I have this disease and there's nothing I can do about it but wait to die. I'm petrified. I haven't slept in nearly 8 months, went through early menopause at 38, brain and body burns all day and night, can't detect temps, apathetic, psychotic and more. I lost everything these past 2 years and now I live isolated with my father in Nashville TN with no health insurance. I read what you posted about G d and Jesus. I completely understand. I want to do that and don't know how...just give my entire life to Jesus. I've lived a very sinful life and I believe that this disease is a form of punishment for my dreadful sins. Can G d forgive me? Can he heal me? I really need help and spiritual guidance. I'm very fearful of death and this disease will kill me. Thank you so much and I appreciate all the spiritual guidance you have to offer. You may email me back at Thank you so much!!'s picture

And remember to tell God that

And remember to tell God that you receive Jesus now as your lord and savior and to please wash you from all your sins and make you clean and to please save you. Then walk with Jesus. you have to walk with Jesus and live for Jesus to be saved and no longer live for sin. :)'s picture

Also stop cursing...

Also stop cursing...'s picture

Hi Kara, I can't see your

Hi Kara, I can't see your email...the name I am using is my email I hope you can see it, yes, God will forgive you definitely... he loves you so much! He has forgiven me and I have done stuff im not proud of... God has even forgiven murderers, He will forgive everyone who will follow His son and accept His gift of salvation.

This is what you need to do, you need to get a king James bible. Start reading it from the New Testament all the way to the end, everything in there will tell you what you need to do to please God...Then read the new testament again and then read the bible from the beginning. You basically have to stop living for sin and start living only for Jesus.

You must stop taking all drugs..all of them. if you are on prescription drugs, you must wean off 25% over 2-3 weeks depending on the drugs. No smoking, don't even drink alcohol at this point.

You must stop all willful sins, there are many of them in the bible but I'm just going to name some that I had to give up or just some common ones lust- lusting after men- I had to stop watching all romance because of lust, no romance books, no looking at men with lust, no gossiping- you are only allowed to make righteous judgement on people if you yourself is righteous, don't talk badly about other people, masterbation, no porn, all sexual sin, you must stop having all sex, no sex allowed unless you are married, stop watching or reading anything that has magic in it or the occult..vampires, witches, anything with magic in it, even if it is Disney movies, it is not good. Don't read your horoscopes, don't do yoga, don't do accupuncture, karate- I know this sounds wierd but there is a reason why you have to stop doing all that,
Stop lying altogether, put no idols before God, this means that if you like doing anything and spending more time on it then God, you have made it an idol, you don't have to give up good clean hobbies but you can't put them before God, you can't be addicted to anything- you can't be addicted to sugar, anything pretty much, honor your mother and your father and respect them. No drugs at all, you must give them all up. Don't act out on your anger. be of a gentle and meek spirit. love everyone and this is very very important, you must forgive everyone, forgive them, if you don't forgive everyone God will not forgive you.

Now even when you stop sinning willfully you will still have accidental sins of the heart, like jealousies, anger, rage, hatred, ect.. As long as you walk in repentence for sins and stop sinning willfully, these sins are forgiven- you can even have a conversation with God in your head when you get any bad thoughts and just say sorry but all these accidental sins, like impure thoughts are forgiven, but when you get the thoughts try not to give them power. Basically we obey God with all this stuff to show Him we love Him and to thank Him for giving us another chance and bringing Jesus to die on the cross for us.

As long as you try with 100% effort to not sin willfully and be righteous and holy and deny yourself everyday..this means you are living for God, you are no longer living for sin and you will be saved. And at first it will be really hard probably but just keep on fighting and it will get easier. When you are living for God like this, you might sin willfully, just say sorry and try really hard not to do it again, He forgives you. When you start living for God, ask Him for the Holy Spirit, He will help you in your walk with Jesus, the Holy Spirit is like having God live inside of you. it is a gift which gives you eternal life if you stay on the path of walking with Jesus and living with Jesus.

also pray over all the food you eat. say Father, please wash this food in the blood of Jesus, in Jesus' name. thank you for it. Amen.

I want you to look up Chris Lasala online. he has many YouTube videos about God and how to follow Jesus. he might scare you a little because He doesn't focus on God's love as much but he helped me get off my medications. He has a video about how to get off medications correctly. he has a website: attacking Satan in Jesus Name.. You can email Him if you want to.
he will help you. I am sure Jesus will heal you, don't worry. God heals everyone if it is His will and He makes sure that His children are in good health.

You just really have to stop willfully sinning. And I'm so sorry that I havent gotten back to you till now! I just looked at the website again today, I know the torture of not sleeping, I know how horrible it is and my heart goes out to you, don't worry anymore. pray to God and say, God, I know that through my obedience and faith in you, you will heal me. you show your faith and love to God by obeying Him. Jesus said..if you love me, keep my commandments.

All this stuff you are going to learn about what is really going on in the world is going to freak you out but you need to know the truth. you might need deliverance too you probably do and Chris lasala can help you with that. I will pray for you and I hope everything goes well. email me! Don't worry, you will feel relief, you will sleep again, Jesus can cure anything. He is real, God is real!

Kara Cohen's picture

fatal insomnia

I know I have this disease and there's nothing I can do about it but wait to die. I'm petrified. I haven't slept in nearly 8 months, went through early menopause at 38, brain and body burns all day and night, can't detect temps, apathetic, psychotic and more. I lost everything these past 2 years and now I live isolated with my father in Nashville TN with no health insurance. I read what you posted about G d and Jesus. I completely understand. I want to do that and don't know how...just give my entire life to Jesus. I've lived a very sinful life and I believe that this disease is a form of punishment for my dreadful sins. Can G d forgive me? Can he heal me? I really need help and spiritual guidance. I'm very fearful of death and this disease will kill me. Thank you so much and I appreciate all the spiritual guidance you have to offer. You may email me back at Thank you so much!!

Serendip Visitor's picture

thank please help

Please help me learn how i can turn away from sin so god can heal me i cant do anything right and my life is so hard for me right now i just want to feel alive again what should i do's picture

Please look at what I wrote

Please look at what I wrote to Karan. Yes, Jesus can heal you, don't worry. Everyone who can't sleep and has insomnia needs Jesus, only He can heal you!

Serendip Visitor's picture


All my genetic testing came back normal,and all other tests.The only thing I can think of is sporadic fatal insomnia because the mind still stays crisp while the I function deteriorates.My neurologist is wanting me a psychiatrist and i refuse because Ive been to one before and I dont have mental illness and strong medicine does not help my insomnia at all, people actually think im more calm then ever. I feel fine just dont matter how tired i am or relaxed i got into a light REM sleep that barely lasts.dont have big money so i guess im stuck to see the exsperts in chicago.

Adam Broski's picture

Rhodiola rosea may slightly

Rhodiola rosea may slightly help you deal with the symptoms. Look it up.

chaiwat's picture

sFI is not rare ( so do not ste

I can not sleep around 6 months.
I went to Neurofeedback which it shown that my brain have many red point spread around the brain
( brain have many point which not release), the neurofeedback professional in Singapore do not know what wrong .MRI,CT scan,and do not show abnormal thing
I can use diazepam for sleep but it not too long
I stress on one period of time and I out of blue

I have very stress one period of time and after that my sleep pattern are worst .

I pain my head like sth thing bite my brain


Chaiwat TH

Serendip Visitor's picture


You must word this in the English language if you want a reply. What you wrote is incomprehensible, therefore I cannot help you. G. Mac MD/Phd.

Tyler Bonner's picture


I suggest you try using monoatomic gold its been helping a lot of people with sleep issues.You would have to do your own research but its pretty amazing stuff. I take it myself for my insomnia. It basically levels out your brain waves, evening out the left and right parts of the brain.Youre going to have to make it at home because the online stuff is mostly fake.I know cures to most diseases so just message me if youre ever sick. You dont have to take my advice i could care less its your life.

Sincerely, Tyler Bonner

Serendip Visitor's picture


the cure for hemophilia b?

Serendip Visitor's picture

Monoatomic gold

What is monoatomic gold and where I can buy it? Thanks.

Mary E. Reynolds, BS, RPGST's picture

Types of insomnias.

Let me start off to say that I am a Registered Polysomnograpic Technologist. That makes me a sleep expert, but it does not make me a doctor. ONLY A DOCTOR can diagnose what type of insomnia that you have.

FFI is genetic and very rare. That means that you do not have it if no one else in your family has died from it. PERIOD. You just don't catch it. It is that simple. Now someone in your family may have died and not been diagnosed with it, but that is unlikely.

There are different types of insomnia. I will briefly go through them.

Adjustment insomnia is extremely common, probably the most common type of insomnia. Basically people develop this when they are having changes in their lives. This could be a new baby, a new job, being fired from a job. It can be caused by a death in the family or worrying about the economy. School exams and the list goes on and on. It is life's stressors. Usually once the stressor is not so stressful, the insomnia goes away.

Psycho-physiological Insomnia is also very common. This is basically when people are sure they won't sleep they won't. At normal bedtime or normal nap time sleep may be unable to be acheived. Quite often, this person sleeps just fine if it wasn't a "planned" sleep. Maybe falling asleep on the couch watching tv is real easy. Or sleeping during a car ride (hopefully not as the driver). Or maybe you are falling asleep in class. Lots of times people fall asleep on vacation just fine.

Paradoxical insomnia is when people complain of insomnia, but they really had none at all. Even during sleep tests people will say they didn't hardly sleep a wink, but in fact EEG's (brain signals) show that they did in fact sleep quite normally. People with this should keep a sleep diary for a few weeks.

Idiopathic Insomnia is probably the most detrimental (besides FFI). This is a Insomnia due to unknown causes. It is first diagnosed as an infant and continues on throughout a persons life.

Insomnia due to Mental Illnesses is quite common. Name the mental illness and there may be incidences of Insomnia. However, the Insomnia can cause the mental illness. Using depression as an example: Some people with depression can develop insomnias, and some people with Insomnia can develop depression. Kind of like the old age question: What came first, the chicken or the egg?

Many people just have insomnia because they have poor sleep hygiene. There are many recommendations for this. Just a few are: Go to bed only when tired, do not exercise heavily within four hours of your bedtime, do not eat within three hours of going to sleep. You can do your own web search of sleep hygiene. You made it here, so I am sure you can find that.

Behavioral Insomnia of Childhood is bad sleep hygiene for children and infants. But it is up to the parents to provide this. This is when parents don't set limits. It could be something like letting your child have that one glass of water, or letting your baby fall asleep with a bottle. It could be letting your child play for "just five more minutes" or leaving toys in the crib so they can entertain themselves. Some of these things are okay once in a while, but not every night.

Then there are insomnias due to drug or substances. They could be of the prescribed type or the illegal type. Just about every type of drug could cause disturbances. Just look it up on the web. There are way to many for me to even start naming. Even benadryl can cause sleep disturbances. I know from my own experience, benadryl gives me great restlessness, so much so that I tell health professionals I am allergic to it.

Insomnia Due to Medical Condition is as stated. Certain pains and aches like arthritis or perhaps an allergy in which you itch all night and are up all night scratching. Or it could be just the fact that a person is aging.

Go back and read my post for 06/20/2013. It touched on a few of these topics, but it HIGHLY STRESSED to GO SEE YOU DOCTOR. Maybe you need a specialist even. You go to the doctor and let them handle it. Don't keep coming here trying to diagnose yourself with FFI or any other kind of insomnia. Maybe it is apneas waking/keeping you up. Or possibly it is your bladder waking keeping you up. Maybe indigestion is waking/keeping you up. Maybe it is the TV waking./keeping you up. Maybe it is the dog waking/keeping you up. Maybe your _________ (fill in the blank) is waking/keeping you up...

I'll say it one last time DON'T SELF DIAGNOS, GO SEE YOUR DOCTOR.

Mary Reynolds, RPGST

Kats's picture

Re: Types of insomnias.

There have been cases of sporadic fatal insomnia that otherwise present like FFI. It's only been about two handfuls of cases, however, so it is exceedingly rare.

cliff 's picture

fatal famial insomnia

hi ive been awake for 6months without a single seconds sleep. ive been to my doctor numerous times & his response is to say that i would simply be dead if i hadnt slept. know one believes me. i recently spent 3-4months in a psychiatric hospital because my family and relevent health professionals think im dilusional. - they say its impossible. it started at the beggining of the year ... i was emitted into a psychiatric unit for around five months because they believed this time i was having delusions of a fungul infection which happens to cover my whole body & a dermotologist diagnosed me with though they refused to check if this was true. so they decided to forcefully inject me with an anti-psychotic (oil based) drug called zuco-clopixal. this drug has made me resistant to all drugs e.g alcohol, cannabis, tamazepam, zopiclone etc these drugs have absolutely no effect on me what so ever ... i drank two bottles of wine and took seven temazepam and had no effect on me? i took 14 zopiclone in one go and again no effect. im afraid ive not got long left please help me

Serendip Visitor's picture

this disease is not as,rare as you think

This is,a real life horror story,, prion disease and trying to find an,answer to this .
Ive been to sleep studies , two nuerologists, they cant find out whats wrong, all blood work normal no auto immune diseade no huntingtons etc, the very few clinics that test for cthese symptoms are in california and ohio ,lucky me,,doctors ask do i know my family history , no sbecase my family history is not known, the bad news is yes alot were from Italy on my dads side but no one knows who they are ,anither possibility. Im bed ridden daily and researchers in california are so annoying not returning my emails. Im hallucinating no sleep this us crazy , and no damn doctors know why , incredible ,
This is america ill make myself heard to even if i have to write the president i will be heard my family as well,this is crazy that there is no help unless u have the best insurance or are a millionaire .God puts doctors here to help people not shun them over there symptoms,i will make sure whatever happens to me people will be tested the right way for this disease and doctors will take pple seriously because im not giving up even if my symptoms get worse, this disease will have a name , and thank you to all the rude doctors that i sent emails out to with no reply in california,im know im not a celebrity but how funny do things change when you have the best in life , how,sad, even the rich pple at fund raisers,are fake cause they havent helped me.'s picture


PEOPLE, PLEASE EMAIL ME! . I couldn't hardly sleep for 5 months pretty much, you need Jesus! he healed me, He will heal you too! This is not a joke. I know the torture and horrible desperation that comes into play when you can't sleep and the fear, the horrible horrible fear.... Seriously just give Jesus a chance to heal you and follow Him, what do you have to lose? Seriously? He can rescue you from this torture... The medical industry are all liars.... There is nothing wrong with you really, there is a reason why this is happening and I know what it is...just please email me if you need help, Jesus will heal you, He is real! If you want to continue to be tortured with not sleeping that is up to you but Jesus is the answer you are looking for everyone... Only He can truly cure you! Please contact me if you need help!!

cliff 's picture



Kara Cohen's picture

sporadic fatal insomnia

Hi Cliff. I'm Kara Cohen. I have SFI and havent slept in nearly a year. It's horrible and nobody believes me. I'd really like to talk to you. You can call me at . WE need help and support and it's important to communicate with those who suffer the same illness. I hope you're still alive and better. Please call!

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