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.

Comments

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 prionalliance.org 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

Serendip Visitor's picture

Ffi.

I don't know if I have this but I haven't been able to sleep in the past four months I am scared. I have five children that needs me. I don't know what to do anymore. I pray and pray and read my bible

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!!

Gurlygirl2012@aol.com'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. :)

Gurlygirl2012@aol.com's picture

Also stop cursing...

Also stop cursing...

Gurlygirl2012@aol.com'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!
Love,
Paige

Hesavedme's picture

The Truth About Jesus

When God's own son Jesus died for ALL sins and rose again it means he died for ALL sins. when he appeared to the 11 he told them he was going back to the Father but would send a helper, The Holy Spirit. When we believe that Jesus died for our sins and ask him to be our LORD and SAVIOR we become a new creation. This is the process by which Jesus told Nicodemus on how to be Born Again. The Bible says that we have entered into a covenant of grace by which sin no longer has dominion over us because of the grace given by our lord Jesus. The first covenant "The Law" was given by moses and is called the ministry of death written on tablets of stones. For those that know Jesus we are no longer under he covenant of the law but under the covenant of grace. What is grace? its GOds gift of unmerited favor. In other words no matter how hard you try you can't keep the Law. The concept of willfully sinning is silly because since we have free choice all sin is willful. Now when you realize that the bible is true in saying that we all have fallen short and breaking one law makes us guilty of the whole law in which case the penalty is eternal separation from GOD. When we realize that GOD loves us enough to put on our sin and give us his righteousness we can then trust that he will truly finish the work he started in us. Notice I said HE, trying to be better doe nothing to make you better in fact it is actually counterproductive. But when we let go and allow the HOLY SPIRIT to do its job in making us into what he wants then is when we get better. Whats the difference? you vs GOD. Mankind was never supposed to be able to keep the law, the law was supposed to do what it was created to do, make us realize we can't keep it and we need a savior. It is by his stripes we are healed not our obedience.In fact as Moses led the Jewish nation out of egypt they constantly sinned, murmured, complained and GOD responded with grace not punishment and not 1 person died. It was only when they said they wanted to be judged by there own actions then the law was given and on that day GOD told the people not to even come near him on the mountain. The day the law was given 3000 people died, fast forward to the day of Pentecost and the indwelling of the HOLY Spirit 3000 people were saved. In short there are 2 covenants, The Law or Grace. Jesus loved us all that he gave us all the grace we need.
Remember he died for ALL sin not just the ones you did before you got saved. There is only 1 Gospel and its that a loving GOD died for a fallen mankind because of love. Why in the world would you get saved from the LAW then go back to it. Just focus on Jesus and he will take care of the rest. As far as wether or not GOD will choose to heal a disease is up to him, prayer helps but Gods will is his will. We can take the best comfort in knowing that this brief life we live is just the beginning of an eternity with God, or we can trust in ourselves and hear the truly most frightening words we could ever hear, I never knew you, depart from me you who work iniquity. The choice is yours but leave the work to him. GOD BLESS

Serendip Visitor's picture

Hesavedme, we are saved by

Hesavedme, we are saved by grace through faith. But faith without works is dead. If a person says they believe in Jesus Christ and continues to sin willfully, its just vanity, just words with no substance, the person doesn't truly know Him. Those who love Him obey Him and keep His commandments...yes, we are free from the law, but this means that through Jesus we are able to overcome the law and no longer willfully sin. The law is written on our hearts and when you have the Holy Spirit you just obey anyway.. Saying we are not under the law doesn't mean that we do not need to follow His commandments and we can still sin all we want and be saved through grace. This is faith alone and it is a big lie that I also believed at one time. Those who Jesus tells He never knew them are people who worked iniquity, people who continued in their willful sins. To serve Jesus is to obey Him. Those who obey are children of God, those who do not obey, God does not know them.... If all a person needs to do is say they believe and that it because it's all grace then why would Jesus warn people to cut off their hand if it offends them because it's better to go to heaven like that then go to hell.... Those who say they believe yet continue to willfully sin are going to hell. If you want to, please watch this video about sin and how it is not by faith alone. Shall we continue in sin that grace may abound?

Serendip Visitor's picture

The video didn't post, you

The video didn't post, you can find the video on YouTube... It's by Chris Lasala and i think its called Shall we continue in sin that Grace abounds? God Forbid.

Hesavedme's picture

sin

When you get born again the difference is Who you are to God and who he is to you, the bible says all men have fallen short of the law, all men have sinned, that's why Christ had to die in our place so he could take and nail on that old rugged cross all our sins , pay the penalty for every single one of them where for 3 hours every sin everyone every committed or will commit was imputed on him and he paid the penalty for evey single one and cried it is finished. It's Jesus + nothing, remember unless you are Jewish the first or mosaic covenant given by god to the Jewish people led out of Egypt wasn't even an option for u. It was between the Jewish people and God. It's not till Christ's death on a cross that we as non Jews even have access to a covenant but they have access to it as well. It's a covenant that's based on Gods gooodness and not our own, Christ's sinless life not ours, his love not ours, this is the greatest gift ever given by which we get to call the creator of the universe father. And get to know him. Will you sin after your saved? Yes but you are no longer judged on your righteousness but Christs righteousness. He will remember your sin no more and you will start to change because God just made a home in your heart. We die to the law and are made alive in the spirit. He then instead of using tablets of stone to tell you what's right or wrong just speaks to your heart. It's a real living relationship not a dead religion.

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!!

Hesavedme's picture

forgivness

I can tell you 1 thing for sure and that is that God can do anything, he spoke the world into existence and made us into his image. Then sent his only begotten son so that anyone that believes on him may have eternal life. The issue isn't sin as weird as that sounds. Sin is everywhere in everyone, the issue is do you have a real relationship with Jesus, he loves us so much he died for us taking all our sin and sickness and poverty and giving us his rightouness. This is called the divine exchange. Now we all are spirit having a earthly experience and we will continue to live on after this body has expired and if we have a relationship with him we will spend eternity with him in paradise, I would suggest you check out ministers like Joyce Meyer, Joseph Prince, and creffelo dollar. They are a great way to get practical application from what is in the bible but remember they are only going to make clear or light the way to Jesus and Gods word the bible. If you have a bible I would start in the new testament and the gospel of John then go forward to acts and so on. THIS IS NOT RELIGION let me be clear. This will require faith and patience so it may be easier to look at some teachings with Joyce or Joseph Prince or creffelo dollar to guide you at the beginning and try and get into a good faith based bible believing non denominational church. Hope this helps the few people that asked, let me know if you or anyone else that responded to my comment need, even if it's just to talk to someone. God Bless

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

Gurlygirl2012@aol.com'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

hi

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 sleep.no 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

Sincerely

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

cure

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

cure

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.

Gurlygirl2012@aol.com's picture

PEOPLE, PLEASE EMAIL ME!

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!!

Kim's picture

Fatal insomnia

Pray for me....jesus is lord

cliff 's picture

IVE BEEN AWAKE FOR SIX MONTHS

IVE BEEN AWAKE FOR SIX MONTHS WITHOUT A SINGLE SECOND OF SLEEP. NO ONE BELIEVES ME!!! IM NEAR THE END IM IN ALOT OF PAIN N FEEL VERY WEAK. MY DOCTOR SAYS I WOULD BE DEAD IF I HADNT SLEPT SIX MOON. WTF DO I HAVE TO GAIN FROM LYING?! CHEEKY MUPPET. IM NEAR THE END SOMEONE PLEASE HELP. MY NAMES CLIFF IM 28 YEARS OLD
HELP.

Serendip Visitor's picture

Physically impossible

Your doctors are right tho, you WOULD be dead if you've actually gone 6 months without a single second of sleep. Lab rats died within 2 weeks when deprived of any sleep at all. You ARE getting moments of sleep, you're just probably aren't aware of it. When I went hypothyroid for a bit, I stopped experiencing the sensation of 'falling asleep.' The only way I knew I had slept at all was remembering hints of dreams or a light sense of 'waking.' I felt like I had just laid in bed awake all night. But then I remembered dreams, which were proof to me I had slept, even if my perception said otherwise. Eventually it went away, but I can see how somebody experiencing that could jump to the conclusion that they never sleep ever. Your perception isn't always on point with reality. That doesn't make you crazy, it makes you human. Even those who suffer from fatal insomnia sleep. Their sleep is typically light sleep tho, which keeps their body from recharging fully. I suggest you record yourself sleeping (there are apps you can download on your smartphone that track your sleep) to get a different perspective. I guarantee you are getting sleep SOMEWHERE. It is humanly impossible to survive that long with not a single ounce of rest.

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!

Kara Cohen's picture

Fatal Insomnia

Hi Cliff. Are you still alive? I completely understand what you're going through. I am going through the same thing. I haven't slept in 8 months now and have horrible symptoms such as loss of period, brain/body burning, loss of concentration, loss of memory, hallucinations, dementia. I live with my father in Nashville, TN. He doesn't notice my disease because he doesn't pay attention to it. He, like the rest of my family, think it's just a mental disorder. Haven't seen my mother and sister and friends in a year or longer so they don't know. This is excruciatingly painful and scary. I can walk, write, see, eat. No emotion and no sleep. Please let me know if you're still here and getting help. Hope you don't have this and that you're better. You may find me on Facebook, Cohen, Kara

Trey's picture

Dear Cliff

I would suggest insisting to your doctor that this is what has happened. If he still denies it, ask another doctor until one believes you. Once one believes you, you can work on a diagnosis. Stay strong and keep holding on.

Update me with what happens,

Trey

kim's picture

I take xannax and celexa

I take xannax and celexa works for me

diandra alexander's picture

reply on your serendip post

B cuz I care & I am a very inquiring mind cuz MINe is BEYOND this world at least. So I'm curios how long have u not been able to sleep, meaning: when did this start fist u (age it began, age now)? And what's the longst u have nor bewn able to aleep ( hrs. Days wtc,) and currently upon ur rwply how lobg have u gone without sleep? Plewse eeply, its important to me cuz I'm very psychologically itelectual peaon, like I said BEYIND thw qorld

Kara Cohen's picture

sporadic fatal insomnia

Hi. I completely relate to what you're going through. I haven't slept in 6 months. It's getting worse and worse. I believe I have schizophrenia as well because I suffer from complete flat affect and have had major delusions. However, the insomnia is killing me, causing burning sensations in my arms, legs and head. It's very painful. I have no money and am staying with my father who brings me to a low budget clinic and they do nothing. It's difficult to think clearly and concentrate on anything. I never sleep and I don't want to die this way. Six months is a long time and I read that women lose their periods. I lost mine 6 months ago and I'm only 38. I'm very scared of dying, especially this way and there's nothing to do about it. I wish there was some relief or way to help this situation. I'm very sorry for your illness as well. Out of curiosity, do benzos or antipsychotics help? I'd love to talk to you about this and I know how devastating and lonely this illness is. Please get back to me!! Thank you and I hope we can make each other feel better somehow.

Serendip Visitor's picture

hi, about testing

So I just got my genetic testing results for prion related illness, petscan, mri, all cant find any prion disease but it still cant diagnose whats wrong why i just dont sleep.a nice deep refreshing sleep.I dont know of any other tests that I can tell my neurologist to do because I dont know whats causing this and if its a prion and not genetic whyis it so hard to diagnose,maybeit had something to do with my toe infection and the overload of antibiotics that changed mt brain chemistry,very frustrating .now what a brain biopsy,i need answers.

hello's picture

also

Also , why is so limited testing done about this, all these tests are so hard to get , i begged my nuerologist but she told me she didnt want to put me threw a spinal tap , i just got an mri but that doesnt show all the time, genetic testing is very hard to come by even if you have insurance.I guess doctors dont care unless your dead and then they just take your brain out.I also live with my dad karen , and he doesnt even have money like that either, i have a little insurance that really doesnt cover alot , so these kinds of tests are very pricey and its very unfortunate doctors dont do genetic testing to rule this out, even my nuerologist said , im not showing signs of cjd prion but ffi and sfi she doesnt know, prion disease can stay in your body for years , doctors dont know.much about.it bevause of.its rarity, its not that hard i demanded one of.my doctors to do the genetic testing but he told me no, so i guess he is a jerk cause he didnt even care,, yes its rare but alot of pple actually do get it, cjd ffi sfi, they can be around and can effect pple , just cause its rare doesnt mean nothing.ypu cant diagnose but a doctor needs to a damn exspensive

Kara Cohen's picture

Sporadic fatal insomnia and other prion diseases

Hi Karen. I'm still going through the same suffering without sleep and doctors. My brain and body burn all day and night, can't concentrate, have flat affect, dementia, hallucinations. I'm so scared and don't have insurance. A friend of mine in NJ told me he'll pick me up in Nashville, take me to NJ to live there and see his neurologist. I'm so scared. I'm only 38, don't have children, husband, or supportive family. They just think I'm mentally ill but that's not true. I wasn't like this last year. It just keeps getting worse and worse, not to mention that I lost my period last July. Seriously scared to death and don't want to die alone like this!! Please help!! I've tried sleeping aids, antipsychotics, antianxiety and nothing works. It's been almost 7 months and don't know how much longer I'm gonna live with this. Trying desperately to find spirituality, love and help!!! Don't know what to do!!

Serendip Visitor's picture

i know

I did genetic testing , had an,eeg, mri ,pet scan , all kinds of blood work but nothing seems to be normal with my sleep no matter how tired I am I still feel I cant sleep, yea its like complete flat line effect, doctors say im a very rare case because they cant figure out why this happened.I did have an infection on my toe thatalmist i lost , the doctors gave me an over dose of antibiotics, maybe this was my starting point plus my back surgery for spinal fusion maybe it messed up the chemicals in my brain, something wierd is going on but the drs.cant even figure itout. A spinal tap is my only other option but my dr is trying to see what lab can see how my chemicals are messed up, this is complicated , i hate trying to find answers with no solution in site. Heather wilson198346 ay g mail, since i cant type my address on here exactly you can read how it sounds and send mail to my account ,thank you.

Serendip Visitor's picture

Yes, antipsychotic meds

Yes, antipsychotic meds worked for me.

hello's picture

this is the wierdest thing ive ever been threw

I hate this, im scared to dope up with medicine i take nyquil already and hardly get any relief, im here for you karen,and I know what your going threw,i have a messed up spine on top of ,which had spinal fusion done in 2008 so i dont know what the hell is going on with my sleep now, its an unushual symptom one day my.body didnt want to sleep and i would try and try , when i tried hard enough i would get about an hour wake up sometimes never going back to bed justtossing and turning,and any little sleep i get feels like a very light sleep for a little bit with awakenings for.no.bb reason, there is no cause to my insomnia im not depressed or anxiety ridden, ive had problems in the past with anxiety but this insomnia has nothing to do with it.

Mary E. Reynolds, BS, RPGST's picture

nyquil

NyQuil is not good to take on a regular basis. If I am not mistaken, one dose of NyQuil has 12.5 mg of doxylamine succinate. It also has acetaminophen and alcohol. But too much of acetaminophen combined with alcohol is not good for your liver.Taking 2 doses of NyQuil gives you 25, which is normally the amount in one Unisom. Again try the unisom if regular benadryl is not working. I will say it again... look up SLEEP HYGIENE. one night of sleep hygiene will not fix it. It has to be a regular routine. A life style chant\ge. It is like dieting - one day of a good diet does not help you lose weight. Just as in a diet, it has to continue otherwise you will yo-yo. Not committing to good sleep hygiene as a routine you may yo-yo with your insomnia. Hope this helps

Serendip Visitor's picture

hi

Yes, thank you for the reply , Im here in Florida, where are you located?we can exchange numbers if you like.my facebook is heather virginia wilson.please feel free to talk with me My insomnia is so bad i dont even think this kind exsist,my email is

Mary E. Reynolds, BS, RPGST's picture

medications

@Kara Cohen

Really benzos should not be used as sleep aid for very long. I am not sure how long. I think it is like 2 weeks. Benzos are quite easy to be dependant upon even addicted. Also it takes increasing amounts faster than other sleep aids. The big antipsychotic used is seroquel. It does have the side effect of wanting to eat all the time- especially carbs. One med used almost exclusively for sleep is trazadone. It is an antidepressant, but they learned when they get up to therapeutic amount for depression, the person is basically sleeping all the time. So it is rarely used for depression anymore. Also it does not need very much to make you sleepy. It is also cheap to buy. I haven't had to buy it out of pocket in a long time, but when I did have to, i think it was like 15 dollars for 30 days. Also which can be tried is a special Unisom, which can be also found in generic. You have to look at all the ingredients. most of them are just benadryl with a different name. This one has an ingredient called doxylamine succinate. It is also one of the main ingredients in NyQuil that makes you sleepy. What I do is alternate the doxy with benedryl so that i don't get too used to either one. This is from a recommendation from my doctor.

Work on good sleep hygiene. just look up those words and you will get all sorts of hits. you should also keep a sleep log of at least 2 weeks, if you have not done this yet. You log when you went to bed, when you think you fell asleep. what time you woke up. also any naps no matter how short. It would also be a good idea to track your other activities. When and what you ate and drank. Whatever activity that you have done and when. compare those to the "rules" of sleep hygiene. You may have to make some sacrifices like moving the TV out of your room if it is there. Don't drink caffeine within 6 hours of your bedtime. Stuff like that.

Remember I AM NOT A DOCTOR. the things that I told you are from my studies as a polysomnographic technologist and even more so, from personal experience. Hope this helps

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