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The Worst Disease You Can Get: Fatal Familial Insomnia and the I-Function
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.
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Comments
hi
Hello im a young girl 30 years old, i have severe insomnia ,.i went to a sleep clinic had a sleep study done
At university of miami sleep center.what tests did your husband get to rule put insomnia?
The doctors told me its rare but what are the tests i need to do?sorry about your husband.
Sincerely ,
Heather
FFI
My husband has been having trouble with severe insomnia since Dec 2012. They have tried sleeping pills which are ineffective and many other anti-depressant and anti-anxiety meds also do not work. We don't know his famy tree very well on his paternal side because his grandfather died at age 27 and only had 1 son. We do know that the paternal side lives in cleveland OH but do not have any contact with them. Currently my husband has stopped taking all meds (because they don't work.) he has not slept at all for two weeks. I am trying to find out if he should be tested for FFI but am wondering what other symptoms we should be looking for. I found it interesting that the center for testing for FFI that you listed is located in Cleveland, OH. Anyway, any information would be appreciated to know where to look for answers.
Mindy D
FFI
I have tons of information. Where do you live? In US?
IF you live there the easiest spot is Cleveland, OH. Otherwise there is a German Clinic called: Centogene gmbh
http://www.centogene.com/
Get a doc, take some blood-test and send the tube to this firm. They can genetically pinpoint if your husband has FFI.
Then there is another variant to FFI called Sporadic Fatal Insomnia. That's because you don't need the genetic deviation at
all, this menace can occur spontaneously. Luckily it is very rear - if you happen to believe the medical establishment.
I noticed that your husband had this for over a year. Has his illness a progressive nature? Has he some other neurological symptoms? If yes, what? You can always ask for a PET-scan to check his hypothalamus. IF the hypothalamus is OK, then you
just might have some other curable disease. My advice is: Find a decent doc, and do some testing. Ask for a (polysomnography),
PSG test. If you can pass stage 1 in your sleep, then you probably in the clear for any type of neurodegenerative insomnia.
Good luck.
Ryan, I'm sorry...
...to hear about your diagnosis. I wish there was something someone could do to help you. I lost a friend to familial Creuzfeldt-Jakob a while back, and it was terrible to watch him deteriorate. I don't really know what I can contribute, except to say that I hope you don't suffer too much, and that you have as much love and support as you can get from those around you who love you. As for contributing nothing, there really isn't much anyone can say or do to change or improve your situation, but then people will always want to discuss diseases like this, often from a position of ignorance, and surely the more that people become aware of these horrible diseases the better chance there is of a cure being found.
I'm so sorry to hear about
I'm so sorry to hear about your diagnosis. I know I don't have ffi, I don't sleep because of a head injury and a tumor. I can't imagine being a mother myself, having a child go thru something soooo hard. I understand all about anxiety and hallucinations I have even smelt and heard things. I know it can be madding. I just just believe in todays society there is no cure. Do you get any sleep at all right now? and what kind of meds are u taking? You will be in my prayers Ryan....
fatalle insomnia.
so sorry to hear about your plight Ryan. i think most people on here dont actually have fatall insomnia but something similar. i cant sleep without sleping pills. and i mean cant sleep at all, however tired iam. i dont have long left with the sleeping pills because you develop a tolerance to them. it will be down hill from there, unless a miracle happens i do eventually sleep. my thoughts are with you, god bless.
Ryan, No medicial tests can
Ryan,
No medicial tests can confirm FFI after you get it. Only by autopsy or before getting sick can they confirm it. We are developing a test for it during sickness which will be out by end of year. One genetic spinal tap testing before being effected will confirm sickness.
Dr. Thomas Hornung
gene mutation
actually my husband had gene sequencing and has the mutation in the gene I can give you specifics if you would like it was done through:
Pierluigi Gambetti MD
Professor and Director
National Prion Disease Pathology Surveillance Center
Department of Pathology, Division of Neuropathology
Case Western Reserve University
Cleveland, OH
Dear Ryan, If you have FFI
Dear Ryan,
If you have FFI does any in your damn died early in there 50-60,s of insomonia based complications of a under origin or different circumstaneces in your elder family line. Grandparents, uncles,aunts,etc,. At thief age for it. The offical youngest was 29 for FFI since recorded and he had SFFi which is differnt. FFI on my hits on middle aged person of a certain genetic disposition. At 15 it's hard to comfort if you are in effected by disasase. I am a reascher for it. A neuro biologist specialist in brain disorders. I have visited with people with it. SFFi and FFi both and you are far to young under genetic recourse to have this at 15 years old. Unless a mutation has occurred in your famIly than the rest of the world is at high risk of a new form of this disease which we are intensity trying to irractiate
today as all possible.
Dr. Thomas Hornuug, Ph.D,M.D., NCAS,CDC
(Neuro-Chemistry, Bio-Nureology from Prion Surivallence Center, Ceeveland,OH
not sure if its ffi
hello dr. thomas hornuug well in sept 2011 it started out as feeling off balance no appetitte no thirst impotence extreme fear an phobias an today still have same symptoms only been sleeping 2 hrs a night or none at all for almost 16 months have no mood same mood every day been to different drs an had a brain mri an checked for m.s. but was ok then alots of bloodwork an was ok then a spinal tap for late stages of syphillis was ok now i dont know where to turn i asked my pcp for a sleep study an she said i didnt need one an wanted me to have cbt done well ive been seeing a psycihatrist also an tried about 8 different meds an nothing worked he said its something more then anxiety an depression i tried 2 xanaxes 1 10 mg ambien an 30 mg remeron an slept about 4 hrs off an on an i tried 7 beers didnt feel no affect an half 1 fifth of vodka the next an felt the same nothin so pills an alcohol is not workin an feel so awful everyday an i had a colonoscopy last yr but still get blood in stools an 2 endoscopys cause of bile reflux 1st one in feb.2012 was ok then the 2nd 1 had barretts i dont understand this i know b 4 sept 2011 i would sleep at least 8 hrs a night now lucky to get 2 hrs a night i am so miserable not gettin no sleep or a little an after 2 hrs of sleep not groggy when up i wish someone knows what could b causing this i am so miserable please help
Common Symptoms
Hi.
Not sure if you're still alive but saw your comment on the website. I have the same symptoms like you but on my 9th month.
What drugs/substances have worked for you?
Did you get diagnosed with DID or SFI?
Regards,
Anthony
FFI
Believe me, Doctor Hornuug, I wish I was lying. However, I can assure you, I speak the truth.
I thank people for their quote, unquote "prayers" but they are un-needed. I apologize for sounding cold-hearting but I have no desire for sympathy or attention.
i did not sleep for 4 weeks and did not eat much at all
Now i am a nervous wreck, shaking and just cant one thing to hel[p myself. I am terrified. cant find a cure on the net let alone a person who hasa not slet for over one month. I want to get better but the only thing thathelps is pills to sleep that i can only get sometimes. im surely brain damaged now and have a house dogs and kids and cant do anything to make it go away so i can walk the dogs feed the kids let alone cook or have a shower. I wish there was a miracle cure but nothing online just meds for physco orders. I could cope with losing everything if i could just fix my mind and go back to normal. Once i run out of sleep meds its over for me, as my looks are bad as i just could not sctaching my skin when this happned. THe days are empty. I dont do anything or eat only decaf coffee if someone is kind enoug to get me some. Im slowly dying and to make it worse i had h=never been to a doctor until this happened. Now i need to see them i cant even leave the house to do so. I just there was a miracle, but there is nothing online. Most have been diagnosed before a breakdwon or after, but mine goes deeper than that with an overactive thyroid which is double what ti should be. If was ooo beofre i ma certainly ooo now and totally disabled. Anyone who can help would be a god send please help me!
can't sleep at all
Hi, i was sleeping very well 9 months ago, i had to get a D and C and that's when things turned around.. i started to have weird headaches in the middle of the night that would wake me up like i was going to die.. after two weeks of that i started on 7.5mg of zopiclone and i was also starting to experience burning in my two legs and at times in my arms... two months after that i got a total hysterectomy done and from then on , i have never been able to sleep on my own again. Its been 7 months since the hysterectomy and i have never slept even 5 minutes on my own. I am now up to 15 mg of zopiclone and 30 mg of Restoril to sleep and still i am not sleeping much at all.. its getting worse and worse and you can't even make your doctor understand as its all about anxiety and such. One is basically left alone to deal with this.. i am sure i got sporadic fatal insomnia. My life has completely changed from only a few months ago when i never had any problem sleeping. The worst is knowing howing this not sleeping will eventually kill me and the suffering one has to go thru before this happens. i am only 53.
Monique, Have you checked
Monique,
Have you checked your hormone levels for possible low levels in blood? Restoril works only for 50-60% of people taking it. Medications can cause insomina roo. I had a bad bout with chronic insomonia too for 6 months to the of weight loss, delurium, and severe depressions with OCD type hyperchondria. I was finally given Seroqoel 300mg XR which turn me around. Its a atypical anti-psychotic medience also used for severe cases of insomina. Sleeping is a very basic necessity of human function and dr's don't seem to acknowledge its very importants to living. Chronic insomonia by itself is know to shorten lifespan in humans. You being 53, i don't think you have SFI. The disease would have hit you with a vengenace the first 4 weeks, and progressive symptoms like extreme high blood pressure, rapid heart rate, severe psychological problems entering into memory loss, severe wight loss, extermity shaking, respirtory problems, and evental memory loss within by 6-8 months. PET scans developed this year can detect now abnormalities in the thalamus part of the brain. And a spinal tap tests for it is avaliable to detect genetic disposition in chromozone gene responible for disease. Only a few hospitals semi-treat SFI,FFI. Once you have it the dr's can only treat the symptoms from it and make the patient as comfortable as possible. UCLA-LA, John Hopkins, and Mayo Clinic. Tests are sent to Western University of testing by as part of the Nationial Prion Servaillance Center in Cleveland,OH. I myself took the tests and turned negative for both plus PET scan with electon neuro-inhancement ($$$$$). Im sleeping now and health has return to near normal now after a year of many symptoms, inlcuding going to hospital and forced the dr to give me and IV drip to put me out they use for major surgery and it put me out for 2 days and knew than they that if it didn't knock me out than I did SFI. Sometimes we have to take extreme measures to sleep. I hope you find a answer or do whats neccesssary to schieve one good nights' sleep. Good luck to you.
Fatal Insomnia.
hi, you cant be suffering from fatal insomnia because you are not suffering from dementia. it is much more likely you are suffering from anxiety. go to your gp and ask tp a psychologist. they should help you get on track.
pain in lower ab/fever while laying down. Creating severe insonm
has anyone experienced this? pain in lower ab and a sickly fever to go with it. Not sure what is happening to me. but completely
desperate for some kinda of relief. NO sleep , no break . Started having sciatic nerve problems wondering if this could related.
sleep
your siatic nerve problem is probably causing your sleep problems. you cant sleep iof you are inpain all the time. stomach pain might be anxiety. see your doc for some anxiety meds, it should go away.
i think im dying
ive been on meds for the last four years. i cant sleep naturally at alll. by that i mean not even five minutes. i ve been on olanzapine 10mg and mirtazine 45mg. ive been taking zopoclne 15mg as i need it. recently i felt things were getting better and i dont need the neds anymore. so i slowly come off the olanzapine and was not taking any zopoclone. within a few weeks i was experiencing extreme anxiety and to cut a long story short soon experienced not being able to sleep at alll. this went on for about three days and eventually i decided that i must tale the olanzapine or i wouldnt sleep at all. the last week i have been taking 10mg of olanzapine, 45mg mirtazine and 15 mg of zopoclone. it has been knocking m out evreryday and iam now sleeping okay. i know this is a temporary solution and i need to find something more stable.. i have something wrong with my ability to get tro sleep. once im asleep i seem to be okay. it is going to take time before i can sleep on olanz\apine and mirtazapine alone. even than i cant take any form ofg stress. and by that i mean even trhe smallest of things leke an interview etc. if i cant get this under control im going to die. simply putting it if you dont sleep you will die. my doctor has said there is nothing they can do. but im not sure that i believe that. if i can get back to sleeping on the olanz\apine and mirtazapine i will be okay. otherwise im going to die. i know it sounds pesermistic, but thats how it is. any advice would be appreciated
SFI
FFI and SFI don't usually hit someone your age. It has a very selective geno-genetic signature and been found mostly in Italian decent or families of certain deposition and is very rare. I thought I had it last fall. But was tested with experiment spinal taps and newest PET scans at Western university in Ckeveland, OH. I had chronic severe insomina for 5 months. Loss weight, severe depression, anxiety attacks, and was very delusionial from lack of sleep. Not to mention neumorus physical symptoms. I was put on over 30 medications to help me and most did not work. I found Seroquel XR at 600 mg to do the trick. I had several hospital stays, tests to finally my last visit I told the chief of staff at hospital to give me the most powerful sedative he had by IV drip to knock me out for one night is sleep, I even bet him it would not do it. And sure enough it required 3x the adult dosage to do it. I when I wokeup I was more happier than anytime in my life. Now I'm about to sleep again. And tests came back negative for FFI. Got out of hospital and got drunk as hell. And never thank the dr. For putting my ass out. Sometimes extreme measures are need to solve a basic function as sleep. Without it you will die, or at least shorten your overall life expentency. I hope each of you find the answer or go to extremes to return to the dreamscape.
-Tom
dont think i have fatal insomnia
i dont think i have fatal insomnia, but i have something similar. im on lots of meds to sedate me, but they are not working at present. im on 15mg zopoclone, 10mg olanzapine, 45mg mirtazapine. the olanzapine has really been helping me. it makes the zopoclone more effective and has been knocking me out for the last week. but i am begining to find the effects of zopoclone rapidly wearing off. I reckon ive only got a few nights of effective sleep left. Once the zop stops working i will need to go back to my doctors. the thing is my doctor has already said there is nothing they can do and that there are no other medications. surely there is zolpidem. i want to get back yo the phyciatrists because they seem more willing to prescribe alternate medicins. So whats wrong with me. well it is like someone has taken away the switch that transfers you from wake to sleep. I have been using hypnotic drugs like zopoclone to do this for me for the last four years. for a long time i was sleeping on the olanzapine and mirtazapine alone. but now my condition has reverted back to how it was four years ago when i needed a hypnotic to knock me out. i did use lorazapam for 8 months (2mg), but it lost its effectiveness. maybe i could go back on lorazapam on a higher dose. I have thought about suicide as i cant bear not to sleep night after night. thinking of jumping of a multi storey carpark in the town centre. it would be better than a slow and painfull death of not sleeping, whilst all your organs deterioate. I need time to settle down, and then i can put whatever is wrong with me under control again. i just want to live.
fatal insomnia
i think i'm dying. i devfeloped mental problems four years ago where i couldn't sleep at all. i went over 48hrs without any sleep and had become a bit dellusional. i was prescribed olanzapine 15mg and mirtazapine 45mg, plus lorazapam 2mg and zopoclone 7.5mg.. at fiurst i survived on the lorazapam alone as a sleep aid, as it used toi calm me down and send me to sleep. that eventually wore off so i then started taking the zopoclone. i was also taking 45mg mirtazapine and 15mg olanzapene. i wasnt really phychotic but the olanzapine aided sleepiness at bed time. it seemed to work very well. over a period of years i was able to reduce the olanzapine untill finally this year stop alltogether. i have been sleeping better ie 8 hours instead of 11 and had got my personality and sex drive back.. on finishing with the olanzapine i felt confident that i could reduce my mirtazapine to 30mg from 45mg.. though it was mirtazapine getting me to sleep not zopoclone. i was using the zopoclone a s a back up as the mirtazapine didn't work if i become stressed.. anyway i reduced the mirtazapine to 30mg and tried it one night, i experienced extreme insomnia symtoms and couldnt sleep at all. i even tried taking the extra dose late at night and 15mg of zopoclone, initiaklly the zopoclone just about worked and i was able to get to sleep. but gradually during the last week the zopoioclone has not been working and i have been awake allnight. not even 5 minutes sleep. i had a night like this and then the following night took 15mg of zopoclone and 45mirtazapene and slept, because i was very tired. last night i tried going to bed with a slightly smaller dose of zopoclone 7.5 mg and i used som,e sleep hygiene exercises and i got off to sleep. i woke up two hours later and was no longer able to sleep. i have been suffering all day and just wanted to go to bed tonight. toighnight ive taken some melotnin (*herbal), mirtazapine 45mg and 22.5mg of zopoclone. so far i cant sleep and am sitting as this computer feeling very dizzy indeed. my coordination is begining to go and typing is difficult. i cant bare to have another sleepless night. it was only a week ago that i was sleeping good on just the mirtazapine alone. now there seems to be some sort of mental block and i can't sleep at all. i may even drink a bottle of wine and try and knock myself out for the night.. do you think ive got progressive fatal insomnia. no one can live long without any sleep at all, and it seems to be the direction i.m heading in.
:(
It's been a long while since I've got sleep (almost a year). It happened months after my closed head injury. THere are lots of symptoms that showed up progressively (Muscle stiffness and spasms, right eye pain and blurring, insomnia, touch/sensation impairment, profuse sweating, unusual weight gain, and so on). I'm already afraid and I'm just 26yrs old. The doctors keep telling me that there's no problem because nothing would show up in the tests. I've already tried lots of sedatives and benzodiazepines but to no availl. Even a 100mg diazepam and zolpidem didn't help at all. I hope someone would be able to help me. :(
no sleep
have you not slept at all, or do you get a few hours a night. i always thought if you cant sleep at all you will eventually die. i have severe problems and am currently seeing psychologists who have put me on a difficulty sleeping course, which starts August 15th this year. I hate sleeping on sleeping pills, especially as there effectiveness wears off. i hope they can help me.
Hey
Hello ur story is like mine I haven't slept in 7 months since my car accident , I also have pain in left eye,blurred vision, muscle spasms tremors , weight gain etc etc ur not alone I'm so depressed because of all this :(
really sorry to hear about
really sorry to hear about your plight. do you not sleep at all. im on the last remenents of sleeping pills. i reckon i have about a month before they completely stop working. my problem is my head locks up and wont switch off to go to sleep. i thereby get no sleep at all, not even five minutes. i beleive this will kill me from complications of sleep deprivation. my doctor says there is no other pills left that will help me sleep. im not sure that is completyely true and have asked to see a psychiatrist. good luck and i hope you recover soon. its a condition i wouldnt wish on my worst enemy
Weight -gain-? Well, the good
Weight -gain-? Well, the good news is, that excludes you from the disease in question by default - one of the hallmarks of FFI and SFI is, almost invariably, dramatic weight loss. In addition, nothing can "bring on" FFI except genetics, and as far as I'm aware, SFI is the same way except it happens at random and for seemingly no reason. On top of that, it's very much one of the rarest diseases a human being can ever get - as in, by last count, there had been eight cases in recorded medical history.
As to what you have, it's fairly obvious to me that the head injury you mentioned is the catalyst behind it, and that these doctors are quite blatantly not picking something up. It happens more often than one would think, particularly with damage to the brain. I strongly doubt you're dying, but there is -definitely- something up.
FFI
I (thankfully) don't have FFI, but one of the guys who stay(ed) in the same care home as I do recently died from (familial) Creutzfeld Jakob Dementia, which seemed to be just about the worst disease you can get. Being concious permanently while witnessing your own physical and mental deterioration must be absolutely terrible, and there's no way you can escape it. The only bright point for future hope is that, at least now Doctors know the mechanisms which cause these diseaes and hopefully a cure will be found.I don't know when that will be, but the sooner the better - perhaps if it does (God forbid) transpire that CJD can cross over from cattle to humans in large nubers, and if it does transpire that there is an, as yet unknown, epidemic of Variant CJD, sufficient research will have been done on prion diseases to allow the development of effective treatments and perhaps even a cure. As things stand, it may take quite a while for the necessary research to be done, but necessity is the mother of invention and if it becomes necessary the require dresearch will undoubtedly be done.
I'm 15 years old, and i
I'm 15 years old, and i literally haven't slept at all since i was about five. I've seen hundreds of doctors, taken medication, had scans, examinations, everything! Nothing works and no one knows why. It was my decision about three years ago to stop seeing the doctors and taking the meds because it was just making me grumpy and upset. I am much happier now without them, I never feel tired, I can concentrate well at school and everything, i'm exactly like everyone else, except i just don't sleep! I used to hate my "condition" or whatever it is, because I was always made to take medicine and I felt different to everyone else, but now I've stopped taking them I actually quite like it! I can do any homework, or coursework, or revision at night when everyone is asleep, which means I have plenty of time for family and friends in the day. I'm no doctor, but my advice to everyone with sleeping troubles is that if you don't feel the effects of insomnia like i do, then don't force sleep upon yourself! Clearly some weird people such as myself just don't need it, and if it doesn't come naturally then i don't think you should try and make yourself sleep because the stress will just build up, and trust me, I've been there!
FFI
I'm wondering if I have FFI.I haven't slept well since 2006-2012.I have to take benadryl to sleep.That now noit working well now have to take 2 to stay asleep.How do I know if I have FFI?
re: FFI
If it's been going on since '06, there is literally no chance in Hell that you have it. If you did, you'd've died in somewhere in the range of 2007 to 2008. Trust me, I had a recent hypochondriac attack and started worrying I had it. As such, I wound up learning more about FFI than any normal person has any right to - and if I've taken anything helpful from it, it's that as a general rule, insomnia that lasts more than 18 months max automatically discounts the disease, particularly if insomnia is literally the only symptom.
Additionally, I know all about benadryl losing effectiveness. I took it nightly from around early 2008 up until this December, so by the time I quit, it essentially had no effect on my sleep any more. The fact that it ever helped you at all only helps prove that you don't have it, since sleeping meds actually worsen and speed up the disease, rather than doing anything at all to help its sufferers sleep.
sleepless in BC
I know I don't have FFI. But I have a very poor sleep pattern and it's getting worse. I have trouble sleeping for more than 1-2 hour and not always combined 2 hours. I did take Zopiclone 7.5.mg now I have increased it to 15mg and yet I still can't sleep more than 2 hours. I think mine is due to being a shift worker, but I sure would love to have a natural sleep, I've forgotten what it's like to have that natural feeling of sleep...
Anyone with FFI I wish you peace and grace and you have my deepest admiration..
Thank you.
good info i have studied from ur site
the info which you have sharing with us good to learn where to follow your tips thanks for updating the content is meanful to us where we can get some tips from your site thanks for sharing the content
My brother
I'm Laos and very religious. One day my brother while he was at school just stopped moving they called my mom 5 times because it was just crazy he cant move or anything and he wont respond to the doctors and more then 5 cant figure out whats wrong with him.. hes been having insomnia and he did do drugs before but its been weeks since the last time hes done so.. My uncle was showing him things about spirits and my brother laughed at them and a day after hes in the hospital...
Chronic Progressive Insomnia
I also have experienced a long term of progressive insomnia. When I go without sleep for greater than 5 days I am viewed as having a kind of demensia. I can't think clearly at this point, and experinece basic task as is if Iwere a very small person person lost in a maze. begin to lose the ability for self care, geting lost, can't drive, can't do something simple as go to a grocry store or cook a meal.
If I take high doses of Ambien, all these symptoms drop (plus I take 600 t0 900 miligrams gabapentin) for the rls/plmd I have been diagnosed with. In all , I can get 2 to 5 hours of sleep. If i try to sleep with only the gapapentin I will not sleep at all. Anti anxieety and anti depressants only seem to make it worse, but antibiotics improve the length of sleep, but those can't be taken for more3 than 10 days for a bacterial infection. I think they can highten the efficiency of the other drugs, but maybe have another role in helping maintain sleep related to the cause of the sleep disorder itself.
My doctors are so frustrateed. Now they want to do a 4th MRI, lumbar pundcurlmes. I have alreaddy had 4 emgs, 3 MRI with aned with out contrast...I don't think any of them show leasions or visually can assess the thalamus.
If amblen work, why not leave it alone, just because it exceeds recomed dosing by AMA. I Have had no neqative consequences from taking high doeses of it.
Does anyone here know of a hospital or a type of scan which could do a more detailed view of my thalmus in case there is the markings which are indicitive lf the lesions or wholes suggested on MS or prior disease. I thought there were blood tests you also oculd take to help diagnosis FFI or other Prion DIsesea ttypesw. I apoloagize for my lack of spelling, I am exhuastede and have carpal tunnel. There must be a specialized center or doctors, not the local neurologists unable to really know but the uswualy types of neurological problems they typically deal with. I am acutely aware that without sleep I will deterirate and will die. If I have enough Ambien, it still wos for me, although I use to get 8 hours of sleep and now I am awake after 2 to 3. I have build a tolerance to the drug or my prion disease is beating even the Ambien being of significant help to me as it has been for 20 years, I have had this level of insomnia for over 45 years, many with no treatment.until I began the Ambien. I cdould function, raised a family, and had a near normal life on AMbien until that last couple of years. I too, will soon be 60 , but otherwise am in good health. I need help to get to a good neurologist who deals with severe unremitting long term insomnia, such as mine and as those above who speak the same.
While you won't die if you can eventually get one or two hours of sleep, with high doses of Ambien (or others) if yuou get sick and have to go into the hsopital they will not g ive you anything, in my experin3ece,, to help sleep except Ativan, which does nothing for me. I am very fearful of living without sleep and being eventually tortured to death until I diw, it the Ambien is taken away from me because I take to much or because it stops work effectively. Some sleep is better than none...by far!
Hi Mary,
I was recently diganosed with chronic insomnia. And thought I had FFI. I have tried some
Of the most powerful sedation in current medience today. Trazadone, Seroquel, Kolonpin,Vistril,lunestra ,Ambien,and many OTC
meds. I even requested IV sedation high levels to put me asleep. At one point I did sleep for 3 weeks solid. My body loss 40 lbs. in weight and mental state deteriorated into near psychotic depression. And cognitive incapacity. I was hospitalized for 2 months. I have had contacted with
Neurology research at Western UnIversity-National Prion Center by phone about FFI. I believe you have chronic insomina and have builder a high tolerance for Ambien from very longterm usage. My problem I had was a 25 year drinking problem which I stop cold-turkey in Oct. and my withdrawal symptoms were DT's chronic insomina which happen immediately to me and lasted for 4 months with 1-3 hrs of at night or some weeks less than 6 total for the week. I was put on many sedative, traquilizers, anti depressants, and even a few anti-psychotic meds for just sleep. I was diganosed with GAD, Major Depression, and alcohol dependence. My brain suffered mild damage inducing Thalmus area of brain, eyes, and cognitive impairment for 4 months. Plus shakes,severe headaches, anxiety, panic attacks, loss of concentration, inability to think clearly, and to make decision was difficult. I was very depressed and insomina for days and days deteriorated my body and mind at one point of hullcinations and and derealisation. I finally got my life back through a strict medience regimen. And 90% normal and sleep 4-7 hrs now with maybe awaking once during sleep. There are sleep studies you can go to and start at than referral to a specialized hospitals like Mayo Clinic, Mt. Sinai in NYC, John Hopkins in Boston, Scripps University in Fla., UCLA medical center in LA. I think Northwestern University in near Chicago too can help. The only tests for FFI is a spinal tap tests for genetic form of FFI. They are currently in the final stage to have a SFFi tests by summer this year. The tests will do no good if the disease is already started in person in early stages of disease. One hallmark is of FFI is total insomina that develops with a few weeks of the disease in stage 1 of it. It onset is quick on sleep patterns within a few weeks of the disease. I have improved and hope you too soon. I don't think you have FFI.
Crackling sensations pains in head
Dose anyone know why ativan, ambien, lunesta and remron cause these crackling sensations in my head especially my left temple .
My memory problems and head numbness are incredibly bad. Sometimes when I take drugs I get these episodes where I can not move but am awake and I get these horrible crackling sensations in my brain.
remron and trazadone do not give me any sleep anymore.
If I take no drugs I dream while awake but sometimes fall into this half awake paralysis one doctors wants me to try electroconvulsive thereapy but I am terrified of what anesthesia might do to this condition. I just want a PET scan to rule out damage to a certain part of my brain. My last sleep study was the worse yet it showed 205 awakenings in the night with an average of 31 per hour how is that sleep.
hey men i have the same thing
hey men i have the same thing as you reply if you get with the answer
Not sure if it's the same,
Not sure if it's the same, but no sleep, just the same. I have a cyst on the pituatry gland, very close to the thalmus. In 2002 I hit my head so hard, knocked myself out woke up in hospital never remembering a thing.Ever since then I do no sleep. I have done a sleep study, blood work, etc. The doctors don't know what is wrong, so of course I would hear your depressed and or crazy. So know I do see a psych. I have tried ever thing otc, I now take depakote, topiramate and xanax, mixed with a couple a beers cross my fingers and see what happens. I can say to the women when I am mid-cycle does not matter what I take I will not sleep. This last 3-5 days every month. How does the body physically do this?
In all honesty, if you've
In all honesty, if you've tried the various things that are supposed to work and had no success - then I offer you one last thing to try.
Marijuana, roll a joint, smoke it in the evening, near time you want to sleep, hell, smoke it in bed. Before you dismiss the idea, I urge you to try it.
Did, still won't put me to
Did, still won't put me to sleep..
Total Insomnia damage to temporal lobe Please Help
Hello I took a supplement meant to boost nitric oxide production in the body by 950% I took it for 3 days In april of 201o started having ringing in my left ear and blurry vision and then al of a sudden I woke feeling like my brain was numb especially the left side and unable to feel any sensation emotion, taste or pain. Over the next few months taste and pain came back and some of the brain numbness went away but these constant stinging headaches grew worse and then the right side of my scalp started going numb and I developed total insomnia losing the ability to feel a tired sensation. And that along with my other symptoms grew worse over the following year
I have had 3 sleep studies with each one getting worse. And the more sleeping medications I took the worse my other symptoms became currently my whole scalp and forehead are numb I have horrible pains in my head and memory loss bordering on dementia I also have worsening muscle twitches and myoclonic jerks.
My symptoms are the worse they have ever been currently
I have trouble finding my way around my house and my whole scalp and forehead are numb with the numbness and head pain being worse in the temples going through the center of my head and behind my forehead it has also become more intense in the back of my head over the last few months.
All drugs ambien, seroquel, lunesta, trazadone, remron ativan and clonopin and now even benardyl just make my symptoms worse and hypnotic drugs and benzose cause siezure like episodes, confusion crackling sensations in my head initialy they did not but over time they didand most drugs do nothing for sleep anymore.
I am on 250 mg trimiprimine and am still not sleeping but it dose not seem to be making me worse but memory and head numbness are getting worse anyway
My first sleep study In september 2010 showed 5 hours sleep with 200mg trazadone 10mg ambien and 2mg clonopin and 4 stages of sleep.
My second sleep study In December 2010 showed 149 minutes of sleep with 100mg benadryl and 1mg ativan with 64 awakenings and only stage 1 and 2 sleep
My latest sleep study in July 2011 showed 200 minutes of sleep with 205 awakenings and almost all stage 1 and 2 sleep with 100mg benadryl and 10mg melatoninI have read that nitric oxide production in the basal forebrain plays a role in sleep and based on my SPECT scan it seems that that part of my brain has been affected but finding a neurologist open to the idea has been difficult.
I was also looking into getting a PET scan to see if functional damage to my thalmus may be contirbuting to my condition but cant find a neurologist to order one.
My latest MRI showed mild ventriculomegaly but I have not had a neurologist compare it to my earliest MRI's to see if it was there all along.
I have Had a SPECT scan that showed damage to my anterior temporal lobes in the are of my basal forebrain In december the inactivity in theses scans that go into the center of my head but the scan was not detailed enough to show my thalmus and I can not find a doctor to order a PET scan to see if this condition is affecting my thalmus
Please help
Seems Deadly
LIKE VERY DEADLY
im dying
i have something similar and know im dying. currently taking sleeping pills, but they are wearing off fast. dont know if i have days, weeks or months to live. if i can buck up the courage im going to jump from a multi storey car park. dont want a slow agonising death.
any word?
I have the same problem, i cant work and get sick very easy, numbing in the left side of my head(i had a brain scan and it was normal) now i lost my insurance because i cant work and i cant work because i get sick really easy and i get worn down to were i get sick. im in a catch 22, luckily i own some property to pay the morgage but have no money for the rest of the mounth. ill sleep till 2 pm almost every day. any help would be appriciated. thanks.my wife is somewhat patient but think its all in my head. im 42 male and it started around 23. it gets worse every month. i have sleep apnea but the maching doesnt help.
Have you tried bentonite clay or DMSO?
Sorry to hear about your condition, I'm sure this is the hardest time in your life. Hang in there!
Have you heard of the healing cures with Bentonite clay? It has a strong negative ion charge that pulls out anything in the body that has a positive charge like fly paper or more accurately, a magnet. Poisons, toxins, heavy metals etc. are all positively charged, hence the detoxification process of pulling it out of your body, facilitating healing and correcting of serious health problems. Bentonite clay can be taken orally as well as externally. You need to know exactly how to take it orally, so as not to cause problems, i.e. how much mixed in a tall glass of water. Good info on internet. Autistic children have been healed by taking hot baths with bentonite clay in them, as well as a host of other serious conditions. MSM, a supplement you can buy in Walmarts vitamin section would be good to take before the clay baths or in your case, with both the baths and the clay pack and wraps. 1or 2 cups of clay in a hot bath should do it. You should take the baths and do the wraps every day, doing one in the morning and the other in the evening every day until well. Msm causes the cell walls to become permeable to let good things in and bad things out. Both the clay baths and clay packs Would be beneficial for you.
To make the clay packs, you just mix the Bentonite with water using a wooden spoon and a plastic bowl and pack yourself in it covering every inch if your body. Leave on 20 minutes and wash off. Both calcium Bentonite or the sodium Bentonite works, but I think sodium has a stronger ionic charge for pulling out what needs to come out. You may also want to consider DMSO. This is something which may help I don't know. Dr. Stanley Jacob discovered it's properties, and can be contacted through Jacob labs. You can find both information about DMSO on the internet and find how to contact him directly to help with your condition. You need the good stuff for it to work appropriately, so you need to get it from Jacob labs. The only other thing I know for you to try is perhaps colloidal silver 500 ppm. Also maybe Bob Beck protocol. I'll be praying for you, love, Sherry
You definately need to take
You definately need to take all your sleep study results and MRI's to a neurologist for an overall assessment. Your results should be compared for any changes but keep in mind that it is very difficult to diagnose FI and will only show slight changes that doctors often overlook. Also, did you look at the ingredients in the supplements you took and were they approved by the FDA? Do you have other symptoms or weight loss? I have done extensive research on this disease and unless it is acquired genetically and because of its rarity, doctors will not even consider this a disease one may contract. But it does happen.
I have the same feeling of numbness in head, face, forehead, neck with vertigo and confusion, dizziness and strange headaches along with many other physical symptoms since I got terribly sick one day in February 2010. At first I didn't realize that the lack of sleep stages I was experiencing, played a role in my physical destruction. I believe this is due to a change in circadian rhythms as a result of damage to the thalamus and hypothalamus. I am in pain from so much weight loss (40lbs)and now have an irregular heart beat, elevated protein levels in blood and I am loosing muscle control in throat and finding it very difficult to speak and swallow. It is frightening at the noticeable physical decline and it is upsetting for family and friends to watch as it is out of our control. I have not had any scans or tests done in over a year, with the exception of a sleep study this past week. It is at the point now where I need to hire a nurse to be here, as I refuse to go into the hospital to stay, and will prolong it as long as necessary.
Best of luck with finding a neurologist and a Doctor to take this seriously. Hope you get some answers soon. LDD
Question?! I seem to be
Question?! I seem to be sleeping better but still concerned about maybe having FFI?! Do FFI patients dream or go into deep REM sleep anytime one in stage 1 or dream at all from the onset?! I have dreamed a few times since last writing. And getting better from depression and health anxiety of maybe having FFI. Any advise is or info is greatly appreciated to final easy my fears and worries. I go for a psyche veal in a few days to see how my meds are doing for me for depression and health anxiety. My family has been supportive with me and my problems. Just look for reassurance I guess again finally. Any comments or info will help?!
Tom in Florida.
Chronic insomnia or something.
Since I wrote I have been to ER twice for high BP, anxiety, and Depression symptoms. I still havIng problems trying to sleep. After last ER visit I was sent to for a psychological exam at a mental facility where they thought I was psychotic. They thought that I was delusional about maybe having FFI. I been put on Celexa 30 mg for depression, and Ativan 3 mg a day for anxiety, and put on Trazadone 200mg at night to sedate. Everyone thinks I'm fine and just suffering from depression, and anxiety right now. I just hope they are right and not to worry myself sick anymore about this.. I see a Outpatient phsychiartist in the morning. Maybe they are right and I'm just have chronic insomina. And to get
On with life or should I push the issue more and end up in a mental ward where I don't want to be. And see what happens?! I'll ask for a sleep study and continue with medication. Any advise would be helpful at this point. I'm staying with
Family now and would like to know if it's all in my head or not. Some kind of
Blood tests to exclude me from FFI and where to take it at. Any professionial help or info would help to ease my mind about this is greatly appreciated.
Tom in Florida.
I haven't slept since 2009
I haven't slept since 2009 when i was hospitalized. The doctors seem to think we're all insane or depressed. The meds they give don't work because there's no cure for sfi or ffi. I can barely function verbally, socially, and im physically and mentally breaking down also.i just had another panic attack with a migraine that followed.to be sure check for any disease or viral infections you may have that destroying the brains ability to function normaly. Move fast before its too late.