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

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

Kara Cohen's picture

fatal insomnia

Thank you I've tried trazadone and other antidepresants in low and high dosages. They failed to work as well. I don't drink caffeine. My brain and body continue to burn, always constipated, body is stiff, lost my period in July, chronic yeast infections, loss of memory, complete flat affect, hallucinations, no health insurance, no transportation. I really need help. Sorry!! So scared of dying!!

Serendip Visitor's picture

hi kara

Kara i can relate to you 100%-since i cant put personal info on here im going to spell out how you can reach me. My personal number seven eight six four
Nine
Nine
Eight
Six
Seven
Five

Ive been like this and no one understands i know how you feel omg

Serendip Visitor's picture

Please Please for the love of

Please Please for the love of god, i know how horrible and offensive this may be i have no idea what kind o person you are, but if you are unable to get help, donate your body to science, im not asking you to suffer. and prion disease only effects a small amount of people, but its so hard to treat, in part so few specimen to study.

ofcourse this is your choice.

Serendip Visitor's picture

I am so sorry for your

I am so sorry for your troubles. No one deserves to experience anything like this. Remember that there is still goodness in the world, there is still love, and there is still beauty. The world will become better and will answer the cries of people like you, sooner or later. From one human being to another, know that you are loved.

Serendip Visitor's picture

Sporadic FFI

My mother died in Octobert last year from suspected CJD, and are concentrating on Sporadic Fatal Familial. It is not a pretty disease, she got sick and died with 18 months. She also had psychiatric symptoms, loss of bladder and bowel, myoclonus and she lost her function to walk and talk. She died after only 6 weeks in hospital. I not long attended the National CJD conference in Australia and it was fantastic. There were no medication they could give her, nothing stopped her pain or her myoclonus, it was that bad she was put on life support to protect her airway, from there she went to pallitative care. This disease is quiet rapid, progresses fast and there is no cure. If any of you think you could have it...remember it is mostly genetic, but if there is no mutation found on codon 129 you will be have no major risk at getting it, as it means it is not genetic and generally you will not be tested unless you have a family history. There is a Sporadic FFI, but i think it has only affected like 8 people in the world since 1995.

Serendip Visitor Beth's picture

Similar to FFI now. I Am worried.

On July of 2013 I pushed myself in the early afternoon when on the tired side and that did me in. I just wanted to feel 'normal' when i was tired and i got into trouble. I had such trouble sleeping ever since. The worst in my life. I always had trouble sleeping but I'd eventually bounced back. Starting in July it just never happened (as in bouncing back). I first used half a benedryl and a tiny bit of melatonin for about a week which put me in a zombie sleep. Then later I just took benedryl then took 2 benedryls which would work one day but not the next. so it was an every other day success. I was also using some NAC and some Taurine. It was all a hit or miss. Plus a doctor told me how bad benedryl was. So in August I got off the benedryl and tried NAC, taurine and other nerviness like celery seed or whatever other herbal remedy which would work here and there or I'd change the dosage. And I'd have to take it all at the right time and if the timing was off then nothing would work. I hadnt had luck with drugs. Ambien made my throat close up and ativan gave me shortness of breathe. Remeron lit me up. in the past serequel made me very manic. So there were many drugs i just couldnt take for this problem. Before this happned I didnt really need to take anything really. I just had to catch the sleep wave. So in August again I was doing my herbal and supplement stuff and then that wasnt working much anymore. And trying remotely to live a life with having to walk on a tight rope i fell many times by just trying to live a little or taking whatever a second too late and these little things would just change/alter my brain chemistry. So later in August I was trying the benedryl again and benedryl was woking maybe 4 times a week and i'd go like 3 nights with no sleep. Or i'd take it a few minutes too late or whatever it was. I think my body was just getting so confused and depleted. Then benedryl worked really well in Sept and it backfired the next night so i didnt take it again. During all of this I couldnt live a life starting in July cause I was so exhausted. So in Sept I tried gaba, taurine, and NAC which worked but saw how good kavanice was which was supposed to be better and it had taurine and somethng like gaba but crossed the blood brain barrier. So i tried kavinace and the other stuff every other night to test it out. i guess kavinace won but i'd only sleep maybe 2-3 hrs tops. Hearing how bad kavince is i eventually stopped taking it cause it was doing weird things to my brain. My brain has gotten weaker and weaker, More depleted. I feel the connections in my brain dont connect anymore. I havent been able to do much. i feel like much of my brain is gone. i dont feel drowsy anymore. I have the FFI symptoms of my brain going rapid and wild when i try to sleep and not be calm really. My brain has felt electricuted throughout all of this and it's only gotten worse. I feel like my thalamus is totally damaged and out of whack. I feel like my brain circuitry is not right at all. i feel like i'm missing too many parts of my brain. My brain has felt torn apart beginning more so in Sept and October It's felt twisted, torn apart, missing pieces and yet moving rapidly at top speed not in racing thoughts but just like a wizzing in my brain mostly on the left side. Like with the FFI people it feels like their brains are going fast and they have the rapid heart rates and sweating at night and if they sleep it's only briefly in REM. I may briefly sleep but it's not much or not at all. So it's been real intensely bad for over a month i guess. It's been bad since July but really bad since mid Sept til late October. I'm afraid I can relate to the FFI people. And now the nerves in my back are inflamed and feel twisted at times. My doctor in early Octboer said my brain was inflamed and disregulated(going all over the place). I feel i barely have any brain cells to rub together. I've been restless at night and want to just lose it cause its' so hard to sleep or just try to rest. and i cant enjoy life mainly cause i feel so depleted. even watching tv or listening to the radio can be too much. i feel i am in too deep. i've been online now for a number of hrs but i ate too much which makes me feel normal to have more energy but it's going to cause inflamation and probably another night in a row with no sleep at all. i've had halucinations brief ones which i guess is the body's way to trick one into thinking one is sleeping. i'm scared cause i've never slept this bad for so long and have been this disabled. I cant drive a car. I could barely handle going to the dentist. And now if I feel a bit more on the tired side my jaw, head, or arm can move which i guess means i'm low in dopamine. and my weight has gone down since over a month. I weigh maybe 78 lbs. and have other nerve issues as in burning mouth disease. I am falling apart. and I am still stunned at the symptoms i've gone through and FFI. One's brain isnt supposed to go wild when trying to sleop. i cant remember when i felt being drowsy? Oh and a few weeks ago i tried somethng like benedryl but a little stronger which backfired and burned my head and made me so anzy. I've been living in a hell or got myself into a hell. You think it cant get any worse but it can. This may not be like FFI but maybe i unwittingly gave myself the sporadic one or just by making stupid mistakes i damaged my prions, thalamus etc. Just looking at my bed gives me dread. There's been so much damage. Sleep just should be natural or not a big deal. Even my hair changed. My hair is flat and has a burned out texture whereas before it was thick and wavy. Everything is so scary now and is so out of whack. I've made life so difficult. My brain is so confused. it's just too depleted and wired and tired and there's no connections like there once was. Cranial sacral used to help me months ago now that is a disaster. same with acupuncture. i couldnt even maintain things. it just kept going down hill so fast. If i didnt have to sleep life would be fine. I mean who loses the ability to be drowsy and instead the brain goes wild? unless its' somethng like FFI /brain damage. I feel like the nerves are sometimes out of my head or are just not there at all. I guess it's amazing I still do walk, talk, move etc. People around me who have seen me decline has been awful too. I had no idea thngs could get this bad. lying on both sides of my head generally hurt (hurts more on the left side). No creature should go through this ever. I cant believe i unwittingly put myself through this. and I did push myself today cause i wanted to 'feel normal' but i'll be paying the price later. I wish i could take some elixer and put my brain back together. I miss my old self so much. And if things get worse than how will I handle that? It's been so hard psychologically and physically now. i have been halucinating all the time for a few weeks (audio, music). I wish this was all a bad dream. I never could have imagined any of this stuff months and months ago. This has all been out of this universe. I'm 40 yrs old. And when all of this has been going on I lost the ability to be positive but got very down and negative and upset which only made things worse. I should have been more grounded too and not so confused and tried listening to my instincts. It's just not easy being positive when things are so difficult. As they say things can always get worse. I thought of putting myself in a psych ward but they couldnt help cause those drugs are way too powrerful for me. Christ if somehing a bit more powerful than benedryl gave me such probems. I wish I knew exactly what to take for whatever to actually work. It's just stunning how the brain/brain chemistry can change so rapidly. And I dont know how people live with such an awful illness? Sigh..

Kara Cohen's picture

fatal insomnia

Hi Beth. I hope you get this message. I completely relate to what you're going through. I haven't slept since July and have all the same symptoms and I have nobody to talk to about it. My brain and body burn all the time. I've developed dementia and have tried so many different drugs. None of them work and only make this worse. It's so frightening how the brain/body chemistry can change so rapidly and living with this disease, feeling so all alone and out of touch is awful. I have flat affect and hallucinate as well. However, I could really use a friend and somebody who can relate. I'd really like to talk so feel free to call me at . Nobody should have to go through this awful illness and feel so all alone.

Mary E. Reynolds, BS, RPGST's picture

question

did seroquel make you manic or restless? It makes me restless in which I take a different medication to control that.

Serendip Visitor's picture

Have you had your B12 levels checked methylation cycles

Pernicious anemia can cause severe insomnia and it starts and happens gradually so it sneaks up on you when your body stops using b12 and your methylation cycle is screwed up it becomes a merry go round of trying to sleep I developed severe insomnia in conjunction with a positive bartonella and mycoplasma test. I also had toxic mold exposure and sinusitis for over a year and you have to get rid of that stuff before anything will start working again. A lot of people are being misdiagnosed or underdiagnosed for Insect Vector borne illnesses. If you have ever owned a dog a cat have been bit by a flea a tick sandflies mosquitos spiders etc they can all be hosts for those spirochetes which screw up your immune system and deplete your storages of magnesium and b12 the sleep vitamins and minerals and mess with your methylation cycle. You should find out if you have histadelia or high histamine that is more common than FFi and It can cause all sorts of issues from panic and anxiety attacks to insomnia. the reason why Benadryl and Seroquel work sometimes and not others is because they are both anti histamines but you have 3 different types of histamine receptors H1 H2 and H3 in your body Benadryl only blocks the H1 sites with are the ones in your skin that cause tingling itching etc Seroquel works better at low dosages as a histamine blocker for h3 receptors in your brain. If you have gut issues meaning malabsorption your not able to convert b12 cynacobalmin into its useable forms methylcobalmin and transcobalmin. you could be low on intrinsic factor because your gut is screwed up or your stomach acid is too low. Pernicious anemia can result from an autoimmune response and spiral out of control. Also If you have a lot of heavy metals in your body like mercury from fillings etc that can short circuit your brain. High copper in your blood can do the same think about it. you can experiment with taking molybdenum it will remove excess copper if that is your problem L- methionine will remove excess histamine from your body as well as high doses of vitamin C like 15,000 mg. Remember Your body is basically a battery and your brain and heart work from electrical impulses and signals. If your have too high of toxic metals your brain is basically short circuiting doesn't matter if its copper mercury or aluminum lead they will all conduct electricity differently and that's why peoples symptoms can be so different. You could also have kryptopyloria which is easily determined from a urine test a condition in which your body eliminates too much B6 and zinc. The way your body makes serotonin is High stomach acid needed to break down b6 and zinc.
when you become short the methylation cycle gets interrupted and can stop. You might have better Luck just buying B6 In its P5p form and taking zinc and Methyl B12 5000 mcg and buy something called intrinsic factor and see if your sleep improves. a lot of times people with B12 problems have too high folic acid and it can mask B12 deficiencies. You can also experiment with your histamine buy taking L-methionine 1500mg with vitamin C. Also blood types can play a factor . I am A+ and more prone to histadelia High histamine because we have low stomach acids so I have to take betaine HCL to boost my stomach acid and I also take Green papaya powder to help with digestion. I also went completely grain free or what they call Paleo Diet. Lastly People who have had EBV epstien barr virus or chronic fatigue can have a wired tired body meaning your body is tired but your mind races. If you have active viruses or bacterias in your body that means high cortisol, possible inflammation which your brain hates and uncontrolled cytokiene response. You can take all the anti inflammatory herbs if you thin you have an inflammation problem usually GUGGLE and Turmeric are good for inflammation as well as Quercitin or any of the citrus bioflavonoids.
Hope this helps

Vince

Magdolna's picture

I thing it's psychological

I had insomnia, with only a few hours of unfulfilling sleep per night for about 9 days. The cause was a sentimental issue that I could not let go. I stayed awake thinking about it day and night, trying to find a solution, i was desperate, very stressed, had palpitations, could not focus at courses, low appetite, until the nineth day when something good happened and i was finally able to let go and focus on that new good thing that had occured, and that same night I slept more hours and better and the next days untill las night, when I accidently found this topic on google and started thinking about insomnia and having a hard time trying to fall asleep last night because of it! I think it's psychological...
(sorry my english is poor, i hope u understant what i wrote )

JOSHUA EXCALLIBUR's picture

20 NIGTHS SLEEPLESS AND COUNTING

THIS DOESN'T EXPLAIN WHY ALL OF A SUDDEN I AM NOT SLEEPING AT ALL AND I AM STARTING TO WASTE AWAY. I HAVE NO SENTIMENTAL OR TROUBLING ISSUES BUT I JUST CAN'T SLEEP. I'VE GIVEN UP WORRYING ABOUT THIS AND JUST CONTIINUE EVERYDAY AS NORMAL BUT I SEE MY ARMS HAVE LOST NEARLY ALL THE MUSCLES ON MY FOREARMS AND WHEN I FLEX IT IS MAINLY BONE. I CANNOT LIFT MYSELF UP OVER WALLS OR BALCONIES ANYMORE. I EAT PROPERLY EVERYDAY. I FUNCTION. BUT I WONDER IF I WILL EVER SLEEP AGAIN. I AM IMMUNE TO EVERY KIND OF SLEEEPING AGENT. INCLUDNG TALCUM POWDER AND HIGHER DOSES OF SLEEPING PILLS. NO ONE CAN FIGURE THIS OUT AND MY MEMORY IS ALMOST COMPLETELY GOING FOR THE 2ND TIME. LAST TIME WAS A BRAIN INFECTION BUT THIS TIME DOCTORS ARE BAFFLED AND CANNOT UNDERSTAND WHAT IS GOING ON. I PUT THIS INFORMATION ON THE NET TO IMPLORE ALL OTHERS TO NOT TAKE IT LIGHTLY AND GET ONTO THE MATTER ASAP. I HAVE COME TO THE UNDERSTANDING UNLESS I GO TO HOSPITAL AND POSSIBLY BE PUT INTO AN INDUCED COMA...I MAY NOT FIND A SOLUTION TO THIS PROBLEM. HOPING THIS CAN HELP OTHER PEOPLE.

cliff 's picture

hey dude i have the same

hey dude i have the same problem ive been awake for 6months without a single seconds sleep. im closed to the end now. though know one believes me. my doctor says its impossible id be dead. my mum says im ill n need to get psychiatric help. at around month three i decided to jump off a bridge with a nuise around my neck (it snapped n i ended up in the river). oh yeah & n im resistant to all drugs e.g cannabis, alcohol, temazepam etc . have absolutely no effect on me whar so ever. heres my number

kim's picture

I go to a psych for my

I go to a psych for my problem

Serendip Visitor's picture

yes

Please talk to me
Email

Heather virginia wilson

Gmail

Since this site is wierd about numbers and such

cliff 's picture

hey heather i hope ur ok i

hey heather i hope ur ok i never received ur email mods censored it my mobile number also. see if this works ... my email is at gmail followed by dot com and the rest (ie b4 dotcom) is cliffordjameswilliams. hold it up

dakota smith's picture

medicine

mnedicine will only make the diesease worse. not any better. ive done alot of research on this diesease!!!!!!!!!!!

Serendip Visitor's picture

-

The article clearly states it's a genetic disease... it's not normal insomnia, you physically can't sleep until you go into a coma and die.

Serendip Visitor's picture

help

My friend can't sleep over 3 yrs now he went to the doctors and they gave him sleeping pills but thoses dont work its been three days that he hasn't slept I need someone help

Gurly's picture

I also have horrible insomnia

I also have horrible insomnia where i only get a little dream sleep and it is very light and i dont even know if im awake or not because i can control the dreams I have, like I'm awake. I'm really sad because I'm only a 25 year of girl and I don't want to go through this anymore..it's been going on for four months and has totally taken away my personality, my looks and has ruined my relationships..... I don't know if I have FFI, but I can get a little sleep on seroquel so I probably don't... I have to go to my psychiatrist soon, hopefully if she ups my seroquel I will be able to get some actual deep sleep and have a normal life...

Have any of you heard of this book called The Effortless Sleep Method? It is a book that is supposed to get any type of insomniac sleeping again.... There are lots of rules in the book you have to follow and you basically go about living your life like you don't have insomnia and this takes the power away from it...the author says the reason we have insomnia is because we believe we can't sleep...that's the only reason, your belief...

I mean idk if this is true for all cases, but she says you have to start believing in yourself that you can sleep again and you will...you basically have to go around acting like you sleep plus there are lots of other rules you have to follow....I was trying to do it but it is hard if you hardly sleep at all...I was just putting it out there...I'm thinking of doing it but I'm probably going to go for drugs first just to get some sleep first... There is this one girl who says she didn't sleep for 7 months straight and she cured herself with this method and through positive affirmations...she has some videoes on YouTube, I have been trying to do her way also...I guess it comes down to..how much do you want your sleep back, how mish work are you willing to put in? Im not saying this will work for everyone but it makes sense that the more energy you give insomnia, the worse it becomes because it is largely a mental problem where a person thinks they can't sleep so they won't... I mean it makes sense... For people with FFI though obviously that is a horrible disease that can't be helped in that way... I was just addressing a lot of the people with insomnia here because who knows this book could cure us....

I also believe that if you pray for your sleep and believe you have it, really really believe in your heart you have it, that Jesus will cure your..the hard thing is totally not paying attention to yourself not sleeping...you have to really believ you have it, that Jesus has already given it to you...the trouble with that is doubt...you can't have any doubt, that is how Jesus works...through faith.. I really wish I didn't have doubt when I look at myself not sleeping, I have to believ I still have sleep and I am cure and keep on believing night after night no matter what...I really wish I had that type of faith for Jesus to heal me..maybe I just need to read the bible more to get that faith, but Jesus can heal anything if you truly believ in your heart that you have already received it, He can even heal FFI, all things are possible with God, you just have to have faith, which can be hard for us because we look at our surroundings to much and don't live our lives by faith enough... I really want Jesus to heal me and heal all of you, but if you can't really believe in your heart you have been healed, might as well start the process of believing you can sleep by following that book..I'll try it because it really doesn't hurt to try to cure yourself naturally..

Andy's picture

Sufferin the same problem at

Sufferin the same problem at age of 20..is there ane treatment..?
Plzz help

Serendip Visitor's picture

Please get help immediately

Please get help immediately while you still can, if you truly have this it has a 100% fatality rate. Jesus won't help you here, you need to put your faith in the doctors and psychiatrists. Things will only get worse, please for your own sake get some actual help.

Serendip Visitor's picture

I don't have it because I got

I don't have it because I got on medication and was able to sleep a bit, but I don't like the medication and I'm thinking of coming off it. Jesus will help me. What do you believe he won't?

chaiwat's picture

how to check FFI

Dear

I think i might have FFI ,I can use reruquel for sleep we ith out sleeping pill
I do not sure how to check FFI decease
I do not know why i can not sleep

yugo's picture

Incindence rate

What is the incidence rate of FFI? I think 1 - 2 victims a year

Mary Reynolds, BS, RPGST's picture

FFi and other insomnias.

Fatal Familial insomnia is very rare and is a GENETIC disorder. You can't just catch it. It has been a diseast that has has been passed from generation to generation.

I am not doubting the many people who are worried or concerned or even think they may have this awful disease. And I am not doubting those that say they have not slept for days. In fact, I have been having straight insomnia with NO sleep for the last 2 days. I have been taking my regular sleeping medications, even extra than normal, WITH my doctor's approval. It has been to no avail.

From what many of the responders here are describing is not FFi. It sounds like other types of insomnias, of which there are different types. Some may be a problem throughout your life. Many are related to other factors such as life stressors or other illnesses -sleeping or non - sleeping. Quite a few of them are related to just our basic choices in life.

The first step people should be taking instead of looking to the internet is GOING TO SEE YOUR DOCTOR. Yes I know going to the doctor is a pain in the neck, time consuming, and can be costly. Most likely there is nothing truly wrong with you and you are getting yourselves all worked up over nothing. However, lack of proper sleep can cause its own health problems. It can be the cause of your high blood pressure, continuing anxiety/stress , or whatever other health problem you may be having. Lack of proper sleep could be causing the depression or whatever mental illness you may be having. Or those problems could be causing the lack of proper sleep. It is like the age old question of which came first? The chicken or the egg? Yes, I know that is not very helpful for those suffering ANY kind of insomnia at this particular moment. Hopefully it is not of the Fatal Familial type.

LIke I have suggested already, your first step is to be talking with your doctor. The next best suggestion I can give you is do an internet search on "Sleep hygiene" It will most likely tell you things you do not want to hear or want to do, but it is a good place to start. Really, who wants to stop caffeine at least 6 hours going to bedtime? Or not eating before 3 hours of bedtime? Who wants to NOT watch tv in bed? The only thing your bed should be used for is for sleep and sex. And it should be more of the former rather than the latter?

If you are really serious about your sleep, then you will start with that (after making that phone call to your doctor). But do not look up anything more than SLEEP HYGIENE. Don't go try self-diagnosing yourself with every other sleep disorder that is out there too. Just look up SLEEP HYGIENE. After you print that off, then drink all the coffee you want tonight. Have all the sex while watching TV in between eating a couple of cookies, WHILE IN BED. If you are really serious, then this will be your last night of that
and start your new SLEEP HYGIENE habits tomorrow. BE AWARE! Perfect sleep hygiene of one night does not fix it. It can take several months to get adjusted ( which is also why you need to see your doctor so they can help you along)

I say all these things from several points of view. I am who likes to self diagnose myself, scrounging around the internet for any ailment that I may have based on a symptom no matter how small it is. Secondly, when I do go through bouts of not taking care of myself properly, my health suffers both mentally and physically until I get a good cyclone going.(Yes I meant cyclone because that is what it can feel like). When I had enough, I go back to my final view from which I look. That is as a RPGST... Registered Polysomnographic Technologist. That is when I go back basics of proper sleep hygiene.

I do sincerely apologize to to detracting away from the actual topic of FFi. And I most definitely was not trying to make light of any type of insomnia or sleep disorder. FFi is a very serious disease and it IS fatal. But please remember that it is also very rare, that if you are reading this trying to figure out what is wrong with you, you almost certainly do not have it.

Mary E. Reynolds, BS, RPGST

Serendip Visitor's picture

I guess I have it

or any way, I can't sleep naturaly for almost 4 years, not even for one second. during this thime I used Zolpidem, at first 1 pill per night, a few months later it got to 1.5 and to 2 pills. but in the last few months even 2 pills never work, I have to take 2.5 pills every night (and it's always getting more, next weak it will propably be 3 and 4 pills. the 2.5 pills now give me 3-4 hours of a very light sleep. I probably have just a few days before I die from O.D. doctors don't take me siriesly and they say there's nothing they can help me with.
any advice? I'm dying here

Serendip Visitor's picture

oh geez i am the same way i

oh geez i am the same way i would love to talk...

Karl Nowak's picture

short answer

The course of FFI usually runs between 7-26 months. The sporadic variant of this disease (SFI) runs a little bit longer. FFI has 4 gruesome stages until one expire and you can check it by genetic testing.
The sporadic variant is more difficult to spot, but an overnight sleep-test (polysomnography) is a good start. Have you some other worrying symptoms? Inexplicable high fever, blood-pressure or jerky movements? IF not, chances are fairly good that you don’t have this. Has anyone of your blood –relatives died from a sudden onset of insomnia? If not, than you can rest assure – it’s almost impossible that you suffer from fatal familial insomnia.
Sleeping pills can ironically cause insomnia. You should speak to a physician specialized in sleep disturbance medicine.
/Karl N.

Serendip Visitor's picture

Hello

Are you a doctor or an invastigator of fatal insomnia? Do you know someone who investigates this? I want to contact someone like this.
Is Polysomnography an over night EEG test?

Karl Nowak's picture

Longer Answer

Ok, let’s take it from the top, shall we?
I am not a doctor and I wouldn’t call myself an investigator. Although I think I am the next best thing, a sufferer from chronic insomnia. I do know the fear and anguish about FFI and SFI.
Now then, where do you live? IF you are in the US, then the Division of Neuropathology, Institute of Pathology, Case Western Reserve University, in Cleveland, Ohio is the place. http://www.case.edu/med/pathology/training/neuropathology.html.
IF you live in Europe then you can check out Centogene GmBH; http://www.centogene.com/ - they’re testing if you have the FFI gene or not.
- PSG means and overnight sleep study, and there are plenty of clinics to choose from. IF you are so concerned about the possibility of FFI then you can check out http://en.wikipedia.org/wiki/Fatal_familial_insomnia or http://www.cureffi.org/2013/02/05/fatal-familial-insomnia-as-a-sleep-disorder/
The procedure for pinpointing the possibility if you are suffering from Sporadic Fatal Insomnia goes like this: A PSG test; if you can pass stage 1(one) then you doesn’t have the sporadic variant. Period. However, if you fail the test you can then be referred to a neurologist. He or she can then choose to order an EEG http://en.wikipedia.org/wiki/Electroencephalography and then a PET-CT scan; http://en.wikipedia.org/wiki/PET-CT of your brain. The PET-CT will basically monitor the hypothalamus region of your brain. If someone fails this test THAN you can suspect that the patient might be suffering from sporadic fatal insomnia. As you can understand (fortunately) this is an exceedingly rare circumstance. But it does happen. Unfortunately there are no treatment and no cure for this condition. The best place to look for some help is in my opinion the Mayo Clinic: http://www.mayoclinic.com/ - but that’s just me.
IF you want to ask a real doctor about FFI or SFI than the only one I can recommend with good conscience is James Mastrianni, MD, PhD jmasria@uchicago.edu at http://www.uchospitals.edu/physicians/james-mastrianni.html. But please notice, he is getting an awful lot of letters from people worrying about FFI, so I can’t assure that you will get answers from him.
Good Luck; Karl N.

pharma's picture

future advances in ffi

Hello, I am a Pharmacology student and I am specially interested in prion diseases. I just want to say that although there is no current treatment for prionic conditions their discovery is still relatively new and for what we know up to date there is definitely a certain number of attractive aproaches for increasing disease progression so FFI may one day stop being a death sentence. Gene therapy has not proven any success but immunological approaches are still on the table. I cannot possibly relate to how hard it must be but there is still people out there that cares and wants to help..

mary's picture

he has not slept for days and has been going on for a few years

my son a 30 year old man in very good health was in the army for 6 years and now he has been on meds and at first they work for 1 night and after that nothing the va will not see him till December , after reading what you wrote I am very concernd are you saying my son is going to die? I am confused and need to help my son who lives 2000 miles away

Richard's picture

FFI

Pearl, there is NOTHING that can be done to cure this disease, or CJD or GSS. All are horrible diseases that are effectively death sentences for those affected by them. I recently lost a friend to familial CJD and it was horrible to watch him decline and die, knowing all the time what awaited him.

pearl's picture

about f.f.i.

is it really fatal.if suppose we are addicted to nicotine,caffeine and etc can it cause some other secondary problems.what should one do to get rid of this disease.

Richard's picture

re. about f.f.i.

Unfortunately it is really fatal, but it has nothing to do with caffeine/nicotine/amphetamines. There is no cure for FFI nor any of the other prion diseases, they all kill people every year, I lost a friend to familial CJD last year and it was horrible to watch him suffer as his disease progressed, but hopefully a cure will be found.

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