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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
Bob Beck's protocol
If this disease is caused by any virus, bacteria, fungus, mold or parasite, the Bob Beck protocol will totally eliminate every last microbe in the body. Cancer patients, AIDS patients and every other condition you can think of has been successfully cured by this protocol. I had a huge cancer tumor on my breast. It is now gone, and have had no reemergance of any tumors. I had the tumor last summer. For all of you suffering from this or any serious disease, just check it out on the Internet. It sounds unbelievable, but when you understand how and why it works, it makes perfect sense, and they have documentation to prove it. It WILL work if this is caused by microbes or parasites. Take care, and keep in touch. Love, Sherry
no sleep for years, going to die soon
i sleep once every 5th day by medication only , first i was on a few xzanx , now i must take 8 every 5th day to sleep onlt about 4 hrs, now i am looking into xyrem (GHB) to put me down for few more hrs i am roiting to death as i walk and breath. nothing helps and i get NO sleep per night . i get 4 hrs every 5th day only! doctors are not qualified to treat me because they dont know how, i am going to die from this.i have tried all meds and all other, ie drinking , pot, sex , diet, cardio, to sick to continue, now i am getting blood clots in my foot.
med
Sounds like what I was experiencing until they finally stopped trying to get me to sleep and instead worked on getting me to stop thinking at night so I could sleep. Ametriptyline (150mg) stopped me from staying awake from the inability to stop thinking all night. Without it I don't sleep. I have been taking it for 20 years and can live a normal life.
I may have FFI
I been experiencing chronic insomnia for weeks only a hour or less sleep at night. It started 2 months ago with headaches, flush face, hIgh blood pressure problems. I've been worried sick why I'm not sleeping well. I been getting a twitching in neck and head that gets bad as soon as I start to sleep and I shake bad if I do sleep tinnitus is loud, my head is flushed. I've taken Buspar for a month with low odoses of high pressure medication . I slept a few hours last night taking two Tynenol pm and a .50 mg of Xanax, and Buspar and Norvasc.. I've had blood work done, ct-scan, x-rays, at times my heart rate goes to 130 and twitching in head and neck, now my hands in the last week durIng the day at times. My concentration is bad, blurry eyes, and brain fog. I'm scared that I may have FFI. I don't have any family members with it. Or could this all be from severe health anxiety??! I need advice or help from this please. My folks thinking I'm a hypochondriac or just worrying sick about my health. I'm scared and don't know what to do?! Help anyone?!
I have not slept well in 7-8 weeks.
Tom
Bentonite clay baths will
Bentonite clay baths will clear all the toxins, poisons and heavy metals out of your system that might be exacerbating the problem if not causing it. Bentonite has a strong negative ionic charge, while toxins, poisons, and heavy metals gave a strong punitive charge. The Bentonite clay works like a magnet and pulls all of the to ins, poisons, and heavy metals out of your body. Take hot clay baths with 1 to 2 cups of sodium Bentonite clay for 20 minutes. Three strong herbal sleeping pills to take which work as strong as traditional sleeping pills with no side effects are valerian, hops, and kava kava. Be careful with the kava kava as it can really knock you out for a long time. Hope this helps. Sherry
fatal insomnia
My boyfriend had ffi. He died 2 years ago. It was awful. It so difficult to see how a happy guy changed dramatically. I agree that this one of the worst diseases. Because he couldn't speak after a while. Couldn't move. Couldn't write anymore. He couldn't tell me if he was sad, angry or even scared. It broke my heart, because I knew, that he was in a sick body, that could do nothing. He was captured in his own body.
Hi Mirjam, Know this is an
Hi Mirjam,
Know this is an old thread but other than not sleeping what were his symptoms? For the past month I can’t fall asleep naturally without taking anything. I also don’t yawn and will feel tired through out the day in the morning but my brain won’t shut off at night. I’m terrified I have FFI or SFI. Of course my doctors think I’m crazy! How was he diagnosed? Thanks for your insight.
Courtney
Fatal Insomnia
I am sorry for your loss. I am suffering from unexplainable symptoms far beyond solely insomnia and I am posting this in a moment of clarity. I have been misdiagnosed with Lyme Disease, Sjogren's, Chronic Fatigue, Bronchitus, etc. and I am progressingly deteriorating. Any and all medications including Antibiotics, Antidepressants, Benzodiazepines, Barbiturates, Pain killers and natural/holistic only exacerbate the tortorus physical pain and insanity that is beyond description. Not only is it total lack of sleep, it also entails a breakdown of autonomic nervous system including heart rate, pulse, sweating, digestion, tears, saliva, cold/hot body temperature, swallowing and breathing. I am experiencing paralysis, dementia and many other symptoms that only a victim or a witness to this horrifc disease can relate. I understand this may be difficult, but I would appreciate for you to contact me as I have other questions that may be of some help. Thanks, LDD
Update
I dont know if I have FFI. I been depressed and anxious for weeks. I slept 4 hrs last night on 100mg Tazadone. All my dr's tell me its anxiety and depression and Im physically fine. I just fear i have FFI and noone believes me. I like to believe its only emotional problems. And later learn its not and too late to do anything. I love my family and girlfriend very much. I've losted 30 lbs in 2 1/2 months. I take Ativan 1mg x3 daily, blood pressure medience and Clexea 3mg for about over a week now. My memory is bad, and vision is blurry, I hear ringing in my left ear or head. My trembling is lower because of meds. I sweat alot recently. I just hope its just anxiety and side effects from meds. I don't feel tired and or yawn very much. Or does it sounds like FFI?! Any advice where to go and see for medical help or just stop worrying about it all together about it. Let me know ASAP?!
Tom in Florida
ffi
I haven't slept without meds since 2002. There is a blood test for ffi, simply enough. If you can the Mayo Clinic is the best place, they saved my life.
Dear Tom in Florida, There is
Dear Tom in Florida,
There is some "good news" I guess you could put is as since while your sleep has been severely poor/limited you are getting some. The thing with FFI/SFI is once it sets in the body can not get any sleep what so ever even with meds and I mean straight up IV 24/7 meds that should in all means of medical science have you in a coma. I have suffered from chronic insomnia since I was 13 and I just turned 27 in September so I know all to well about not being able to sleep for long stretches of time. While I can't give you an answer of why you are having such issues it doesn't seem to be SFI/FFI least from what you have posted, it sounds like really bad chronic insomnia. Also the memory issues if you are on 2+mg ativan daily you will have short term memory issues its how ativan (most short acting potent) benzo's work. I was on 4mg daily for 5 months due to severe insomnia/anxiety and my short term memory was almost non-exsistant. Celexa can be the cause of the sweating as well, Celexa has a narly set of side effects.
I hope this helps some Tom.
A question about FFI?!
Does complete insomnia start in stage 1 of FFI or later in the progress of the disease?! I'm having trouble sleepIng again. My Pyschitarist switch most mEd's to nighttime 40mg Celexa, 100 Trazdone, and 1mg Ativan. Should I be sleeping good with these meds or not?! I take unisom on top of that for 4 hrs of sleep.
I need to talk to dr. about my meds of they are causing the insomina or just the depression still. I was diagnosed with alochol dependence, GAD, and major depression a few weeks ago. I have mostly health anxiety now. And goggle my symptoms all the time. There got to be a reason for the insomina, weight loss, shakiness, tinnitus in one ear, heart rate up. I feel shaky, heart rate up when I wake up in the morning. Any thoughts or suggestions
want I should do?!
You would be exhausted, both
You would be exhausted, both physically and mentally. There are symptoms related to homeostasis, with periods of stupor, confusion and delerium with a feeling of being hypnotized. And there is no test other than a polysomnography or EEG late in the course of disease for Fatal Insomnia (sporadic). All you can really do is enjoy what you do know - and that is to enjoy your family and girlfriend and try to focus on the present. And I think if you are questioning that it could be anxiety related, then you are more than likely suffering from something other than FI. This is a disease that you wouldn't question having.
LDD
Possible sFI (7months w/o sleep)
Scenario:
I had a head injury last November 2010. Since then, numerous symptoms arised every succeeding month.
-sticky-like perspiration on right hand/decreased sensation slowly crawling from right fingers to my hands.. and eventually throughout the body (after the accident)
-Myoclonus and fasciculations (December 2010)
-Gait problems (body going to the right/February)
-Sleep decreased and unable to sleep during the afternoon/profuse perspiration and tears(started Mid-March)
-body temperature problem (coldness despite humid/hot weather) and appetite problems w/ loss of desire to drink water/ different sensation on the body (started March)
-Gradual insomnia and sensory ataxia/walking problems (from Mid-march to late May)
-Full Insomnia (June until this current time)
-attitude change (agressive toward other people)
-muscle spasms in the back of the neck and head (gradually increased in pain since december)
-aneurism like pain in the head and severe head aches. (June onward)
-as per friend of mine, I might be suffering Thalamic and Hypothalamic degeneration due to the closed head trauma and it just showed up progressively since the day of the accident.
-Valium was used during june. 15mg didn't show any effect. It took me 100mg to have sleep but still felt agitated the next day. :(
We already checked out all the "best" neurologists here in Manila regarding my case. All they do is say that "you're alright" because all tests (MRI,MRS to the thalamus,CT Scan, variety of Blood tests) were alright... but the problem is already getting worse.
yeah yeah fraank
I think i have this :( I havvent slept for 3 and a half years..
You clearly have not read
You clearly have not read much about this horrible, fatal, disease. You would be dead by now if you truly hadn't slept in 3 1/2 years, you must be getting bits of sleep here and there. The longest a person has gone without ANY (as in 0%) sleep was 12 days (last I checked). You either succumb to sleep after that long, or you die.
YOU FORGOT TO MENTION SPORADIC FATAL INSOMNIA!
Only Familial Fatal Insomnia is genetic and passed on from parent to child. Sure, less than 50 families in the world are carriers for it, but that doesn't matter. Sporadic Fatal Insomnia is the exact same disease, and it can occur in ANYONE AT ANYTIME. A perfectly healthy PRNP can unfold randomly and cause SFI in person with no genetic link to any of the FFI host families. Doctors have even less of a clue why this happens than they do about FFI.
1 week almost no sleep
For 1 week ive been having 2 hour sleeps which are restless ones accept for wednesday, friday and saturday which were 9 and 8 hour sleeps with waking up in the middle of the night. At first I tried melatonin but it made things worse, and then I tried velerian which kind of worked. velerian is a natural supplement used for insomnia. I gotta say that even 5 days of 2 hour sleeps feels like hell to make things worse, i'm more energetic at night. I think this insomnia might be due to anxiety because, it was stress that caused the first night of no sleep then fear of not sleeping that caused the other sleepless nights. Because I also have OCD and I can have obsessive phases that can last from 1 week to 2 years (the obsession could be good or bad) Now i have this obsessive thought that I have forgotten how to fall asleep. I really hope that this bad obsession goes away or that a new one would replace it
IS FFI A FORM OF DEMENTIA?
IS FFI A FORM OF DEMENTIA? There has to be some research done for this devastating disease. Insomnia is terrible. People should be able to lay down and go to sleep. No one should have to ever suffer from insomnia. I wish it didn't exist. I'm 26 now and have had it off and on since I was 23 and it comes in spurts. It says that FFI patients live between 6 months and 3 years but I don't see how that is possible if they are totally sleepless why does it take so long to pass away? There needs to be more specifications with this. The longest you can go without sleep would be about a week and then your body would go into seizures so I don't see how the FFI patients live that long... There has to be something that can alleviate that agony. That disease should have NEVER EVER came about. People need their rest.
I have every symptom :/
hi everyone.. reading about this has horrified me. I think i literally have every symptom.. and when i was just about to start to think it away ? i read the post at the bottom of the first page which explained that the disease is not ALWAYS genetic... and can happen to someone at random :/ ...from an unknown cause?? perhaps exposure to another disease or microbe of some sort... heh.
I am slightly under the age cap, (I'm 29) but I have been having growing health problems for years. My current symptoms include *brain fog*, loss of balance (inability to walk straight anymore), gastrointestinal pains (most specifically conspitation/gas), visual disturbances (floaters/spots), speech alterations (slowing?) and as of 3 months ago, the main one, sleeplessness. so now... i have to be wondering... is this horrific disease the explanation? :/ I've already been expecting I have MS or some other immune comprimising condition. (though I don't test positive for aids, apparently, and I also had an MRI which I guess did not show anything substantial)
The longest i think i went without sleep was about 5 days. They prescribed me ambien which did finally allow me to get 'some' sleep... but it was restless sleep, and only about 4 hours or so. Since this time (about 3 months ago) my sleep has been off and on. Some days i get about 4 hours... others 8.... if i go out for some drinks with friends, I stay up for the following morning and only get a few hours real sleep. However, i then manage to get a good 10 hours the following next day, sometimes... which is great, but it is then followed by horrible gut pains and several further days of restlessness. I'm not a fool, and I would be the first to assume all this is from years of alcohol abuse (I currently drink several times a month as opposed to every day which I did for years) but my liver panel and kidney function tests are always normal (much to my amazement).
This insomnia is unbearable. Do my symptoms sound like i definitely have it despite the fact my parents dont? My dad has some bad sleeplessness but that only happened in the past few years and he is just now 65. The gastro pains in combination with the diminishing balance and speech all combined with my horrible (growing?) insomnia are just terrifying right now. It seems like I have everything matching up to exactly what this is.
I guess maybe I should opt for those tests... but I feel like I would rather just kill myself. This makes me want to just go on a binge that I never return from so I don't have to face having this horrible thing... because whatever I have is horrible enough as it is, but reading about this... has completely devastated me.
please feel free to email me if you have any hope or knowledge. thanks for.. anything :(
Are you still having problems
Are you still having problems with sleep?! Please let me
know ?!
Oh, you can get Fatal
Oh, you can get Fatal Insomnia, even if your parents don't. There's a variant called Sporadic Fatal Insomnia(SFI), where the proteins in healthy adults will spontaneously unfold for unknown reasons, and cause Fatal Insomnia. This disease is closely related to Creutzfeldt-Jakob Disease, which is the human version of mad cow. It does the same basic thing, but at least people can sleep with it.
Sleeplessness and gastro issues
I would suggest you have a gluten allergy panel done to see if there is a possibility of Celiac disease. Not only does this disease cause gastrointestinal symptoms, brain fog etc but also malabsorption of nutrients from food. I was having similar symptoms and felt as if I had lost the very ability to sleep. I slept two or three fitful hours a night sometimes and skipping sleep altogether here and there all while taking melatonin and 5HTP. I no longer felt sleepiness of any kind. In short I was anemic and had multiple deficiencies. I had so many of the symptoms you describe and still have a few of them but I have been able to control them with supplements and diet change. I'm getting better but it's a long road ahead. It can't hurt to get the test, just a simple blood test.
Take care
You do not have this disease.
You do not have this disease. Do not self diagnose, go see a medical professional. You may have missed the part about this diseases causing complete sleeplessness, this means that you do not sleep at all; not "some days I get about 4 hours...others 8". The simple fact that you said your sleep has been off and on for approximately 3 months (at the time of your post) makes it impossible for you to have this disease, you would be experiencing severe hallucinations and panic attacks at this point.
Yay!
I love you for saying this! :D
Chronic Insomnia
I too have suffered the misery of chronic insomnia since childhood. Three and four hours of sleep a night was all I could get. I did find out three years ago that I have celiac disease, and received some help just from changing my diet. Also, I have autoimmune thryoid disease. That really contributes to insomnia.. And I have fibromyalgia which causes me to ache a lot and that interfers with sleep. I rarely have any trouble sleeping now, and I can tell you some of the things I do. Maybe something in my routine could help you or at least make your life more bearable.
Besides eating gluten free, I found results thru the following things:
Don't use caffiene, or at least don't use it late afternoon or evening
5-HTP supplements (an amino acid that helps with depression, lack of motivation, and insomnia) Check with pharmacist if on prescriptions to make sure there will be no interractions. (not be be taken with antidepressants without Dr supervison) This little pill works wonders. I call it my happy pill. It is sold over the counter. I order it online for the best price, but it runs about $15.00 for a two month supply (60 capsules). Research it to see if you think it might be something that can help you, and check with your doctor to see if this supplement is ok for you to take. This is a very informative website on 5-HTP. http://www.5-htp.net
Footsoaks in a tub of warm water and magnesium oil (relaxes the muscles and calms the mind, reduces stress) Swansons online has this product at a good price.
Get a really comfortable pillow (I use the Sobakawa Cloud Pillow. It is wonderful. It cost about $20.00) It is smushy and conforms to you, and changes shape as you move around. It is also cooler to the touch than any other pillow I have tried.
Get a comfortable bed. I finally tried out the sleep number bed while on vacation in a rented condo. I never moved all night, and slept like a baby. I fell in love with this bed. I bought one as soon as I got home. I would never have believed I could be so comfortable in bed. I was using 5 pillows to prop my legs, back, and arms. In the mornings my bed would look like a tornado struck from all the tossing and turning. Now I sleep with my cloud pillow under my head, and use one small pillow to support my arm when lying on my side. I honestly hated going to bed till I bought this bed. Now I can't wait till bed time. Being comfortable makes all the difference in the world. I now can make my bed up with one hand because I just lift the one corner I have turned down and place it back over my pillow! If you have not tried this yet, you might want to invest in a bed and pillow that works for you.
Don't go to bed really hungry, but don't eat within an hour or two of bedtime.
Don't exercise late in the evening
Start a "getting ready for bed" routine that is slow and easy.
Start dimming the lights about an hour before bedtime, take 50 to 100mg 5-HTP when you dim the lights (I started with 50mg and now take 100mg). Try to relax and unwind. Do nothing that excites you or stimulates you. No TV or computer or activities. Make sure you have taken care of everything that might worry you once you lie down. If you can't take care of it before bedtime, then make a note/list and place it in an obvious place to remind you when you wake up. That way you won't worry about it while in bed. Make sure your room temperature is comfortable. Remove all electronic gadgits from your bedroom except what you have to have, and keep them as far away from your bed as possible. Read something soothing/calming under dim light in your bed. Clear your mind, think peaceful thoughts, meditate, pray, or whatever gives you peace. Then turn off the dim light, snuggle into your comfy position, smile a peaceful smile (it is hard to smile and not feel the smile emotionally), take several slow deep breaths (filling up the abdominal area first, then the lungs), slowly exhale and feel yourself getting a little lightheaded and relaxing deeper. Then just clear your mind or think of something relaxing that you enjoy or a happy memory.
Most people with chronic insomnia have probably tried many, if not all of these things, but this is what works for me.
You also might think about doing some detoxification. There are a lot of chemicals in our food, water, air, and homes. These really do disrupt our body systems, and can cause exciteablitly and inability to relax. I do ionic footbaths. I also use probiotics daily to help boost my immune system. Another great supplement is glutathione. It helps the liver to rid the body of toxins and heavy metals. Your body creates glutathione, but it needs certain nutrients to enable it to do this function. Google glutathione to see what you can do to boost your levels. You can take a supplement, but glutathione is not readily asorbed throuh the stomach. When I take it, I open the capsule and pour about half into about 1 or 2 ounces of water and stir it up. Then I get a mouthful and swish it (making sure I get it under my tongue) and hold it for 30 to 60 seconds, then swallow it. I do this repeatedly till all it is all gone, then don't drink or eat anything for 30 minutes. The mouth is very vascular, so this gets it into the blood stream and bypasses the stomach. You can save the rest of the capsule by closing it back up and using it for your next dosage. I just recently found out that people who have celiac disease are usually very deficient in glutathione. It has a lot of useful benefits, and is considered a super antioxidant.
Another thing that may sound crazy, but it really does work for me. Most people who have insomnia are so focused on their problem (and who wouldn't be?) that they can't relax, and bedtime is torture. I know this was very true for me. But I found that if I take the focus off myself and reach out and do something good for someone in need, it changes my outlook and gives me a peaceful, fulfilled filling. It kinda adds a purpose to a mundane existance. People need people, and whether you reach out to someone online (as I am doing now) or in person to someone who crosses your path, doing something nice for someone or showing you care really makes you feel good. And that is something nice you can think about when you are trying to fall asleep. :)
I know that sounds corny, but it really does work for me.
I hope someone finds something in this that will be of help.
Take care :)
Hope?
It says on other websites that FFI is not helped by sleeping medication, so if that helps even the slightest, I doubt you have anything to worry about.
I understand
2 1/2 years ago, I suffered from a rare form of encephelitus (probably didn't spell that right). Anyway, it affected the part of my Thalamus that controls sleep. I now have many symptoms of FFI. The difference is, my brain was not damaged by plaque, it was possibly damaged by inflamations and lesions. Trust me, no one on here has FFI.
Just as described, pills do not help, they make it worse. If you take a pill and go to sleep,(no matter what pill it is...exp...barbs, narcotics, sleeping pills, antidepressants...ect) you do NOT have FFI. In fact, if you sleep AT ALL, even if for only an hour or two, you do NOT have FFI. If any nervous system depressant works on you....you DON'T have FFI. I know all of this from experience...
Ummmm
As much religious stuff that is posted for this article, wow. I understand people seek religion for comfort or whatever else reason, BUT, Satan doesn't make you sick, God doesn't make you well. I tell you what, next time I get pregnant I will pray the entire pregnancy instead of going to a doctor, then I may not lose my child... YEAH RIGHT. Either way I will probably continue losing children, because medical science has not caught up to my problems in the fertility department. God doesn't hate me, I have done nothing to make him hate me, except sex outside of marriage, but seriously, if God is concentrating on that wouldn't the earth have exploded or something like that by now? Satan isnt the one making me ill, seriously, why concentrate on me? Oh, that one chick is pregnant again, I think I shall screw with her more? Hell no.
Anyways, this article is interesting, and does gave me home that one day that SCIENCE will catch up to my fertility issues, I just hope it is before I am too old to have children.
response
"I tell you what, next time I get pregnant I will pray the entire pregnancy instead of going to a doctor, then I may not lose my child..."
You may not lose your child is an absolute possibility. All things are possible through God, even the breath you might take after reading this response. God created you and loves you, the question is, do you love him?
If your argument is "if you
If your argument is "if you pray and it doesn't happen then God didn't will it and you should accept that, but if you pray and it does happen then you should give thanks to God," then it's impossible for you to ever be wrong.
That's a pretty nice way to structure your argument, but it doesn't have much bearing on the real world.
Tranzodone
Has anyone had any luck on this med? I'm also on Lexapro...I haven't slept good since I was laid off from my job on Dec 30th...
trazadone
I was on trazadone for a while, I wouldn't reccomend it. I stayed up, then got exhausted and couldn't sleep. I felt hungry and naseous. I literally passed out, not slept. I was in such a deep sleep I couldn't even wake up to go to the bathroom. When I woke up in the morning, which was a struggle, I was still as tired as before. I suggest melatonin, which I'm on now. It's a natural substance your brain makes and requires no prescription. It works wonders for me
Insomnia Sufferer
I don't know that I have FFI but I have suffered from insomnia all of my life. My mother told stories about me when I was a baby where I would only sleep for 1 hour out of 24 hours and as adult it hasn't gotten any better. I have been to many doctors and I have taken many drugs without relief and I am going on 45 years of age this January. This is what is bothering me I have gone for days before without any sleep at all.. the longest being 14 days but never experienced the memory loss or loss of speech (where I literally cannot think of the correct words I need or if I do I cannot use my voice express them). I had four grandparents all who had Alzheimer's but my brain scan didn't really show anything and there is no real test for the Alzheimer's so I was put on a low dose of medication for Alzheimer's type dementia but I still have had no relief to the symptoms. I don't know where to go from here. I see a new neurologist this week. I don't even know what to ask him or discuss with him. I am just so frustrated and beating my head against a wall. Any help or ideas would be greatly appreciated.. thank you.
Gosh if you can go on one
Gosh if you can go on one hour of sleep for 24hours you got a lot of freakin extra time on your hands.....what I would do in your situation is get a hobbie or something that you can do with all that time......like learn an instrument or something......i am deffinetly not the smartest or wisest kid that has posted on this thing, but I can tell you that if I had all that time I would be a master at something....I personally don't like sleep sometimes it gets in the way of things that I need to do, but I know if i dont sleep I will suffer the consequences of not sleeping such as being tired in class,ect....but in your case you don't have those consequences you can sleep for one hour and be fine......soo stop waistin that time u got....do some shit with it!!!!!!
i dont think you really
i dont think you really understand, to the person who said I should find a hobby... i go for days at a time unABLE to sleep. I've discovered that the point where you are completely exhausted/tired eventually passes and then you, (or I at least) can't sleep at all. I do plenty of things throughout the day and I am a musician+college student. I also excersize all day and skateboard. No matter what I do my body will not rest more than 3-4 hours a day.
And that is with taking melatonin. I think parasites may be a possibility for me as I have other symptoms including food allergies and digestive distress... but i had to reply to your post because you don't seem to understand that.... also, when you cannot get enough rest, you simply cannot *do* much of anything.. because your brain/body just feels completely exhausted and you simply don't have the energy to do anything. Yet when I reach these states and lay down to sleep, it doesn't happen.
It's the worst hell imaginable. I feel like i'm at the end of my life and I just wish i knew why and could find out before i do actually die from something and I won't even know what it was -_-
lack of sleep
I have had this same problem for ten years. Many nights I sleep only 2 hours and wish I could get 3-4 hours every night that I could count on. I always too tired to do much. I take a stimulant maybe once or twice a week to get things done.
Re:
No, you do not have Fatal Familial Insomnia. FFI presents itself at middle-age and is fatal within a year of symptom onset. Any other form of insomnia is completely unrelated and doesn't have to do with brain damage.
Hold on Jesus of Nazareth.
Hold on Jesus of Nazareth. This is our tribulation; never give up on Jesus of Nazareth. Accept Him as your only SAVIOR, after you recognize you are a sinner like me and that you repent from all your sins. Ask Him to come into your heart, and never surrender again to Satan. Hey! This is the way it is. I am sorry if I sound religious; I am not; I am Jesus Christ child.
Stop it Kitty
Wow, seriously? This has NOTHING to do with the article.
Alheimers and FFI same gene=Medicine that helps
Without Medical crudentials it's nearly impossible to get anyone to listen to you. But Alheimers desease and sleep deprevation runs in my family. Grandfather had it, mother had it, sister has it. My other two sisters don't have dementia yet, but they never sleep. I take heavy medication and it does give me some sleep. Without it I would never sleep and it does lead to memory loss. I was in a study at the Medical college of ga, in augusta, ga well over 20 years ago.Took a Miracle drug called Ipsatirone.It gave me and my mom, the deepest rest of our lives.It never went on the market.Hope someone will take it from here. Miles lab made the drug but never put it out for anxiety. Put my mom out and she actually became coherent after 3 days. I sneaked it to her because of the miracle it gave me. I'm a voice in the wilderness on trying to get someone to listen to me. This is not a cure. It just gives you a normal life.
Thanks Serendip
Next week they are checking my sleep receptors. My doctor says he thinks that I may have a problem there. So we will see. What I don't know is what they will do about it. What do people who have FFI do for normalcy. I really can't stand this much longer. This is not living. My other body functions are also shutting down. Believe me I won't go out grasping for something that just isnt there. Last week a woman jumped from a bridge here and landed in front of a bus that also ran over the body. She had received some bad medical news. I wonder if I have her guts.
u OK?
Just want to check that you are ok. Stumbled onto the site looking for insomnia stuff as I do now and then. It is frustrating that all of us just want sleep and a rested body but it is amazing to see that there so many of us out there. It is like the invisible diseases...you may not look that bad, etc, so people treat you normally, while you are just trying to hang on. I am 55 and my mom is clueless, and my brother, the doctor, just totally ignores me. Any way, sometimes it is nice to actually have someone to listen to you as most people will never get it. I have a new grandson and my husband retired so he can help me as I am too exhuasted to do it by myself. I see a doctor regulary. I told him I now understand why people want to commit suicide as I am severe facial pain 24/7 and this is 20 years after working on trying to sleep better.. Then, I see others I know that are suffering so much, and I think how stupid of me. Try to find someone where you live and tell them they are your designated "ear" for you so you can talk about things. Everybody hates to complain, but I feel compelled to always talk about how bad I feel. Maybe I do that as I don't want him or others to think I am making it up. My grandson is the most important thing now, so I must try and take better care of myself so I can take great care of him. You are a very valuable person and I am here if you need to vent.
Sandy
My friend in Jesus of
My friend in Jesus of Nazareth:
If you don't have FFI but still suffering from the same symptoms, then you have to talk to God Jehovah and Jesus of Nazareth directly. I am not kidding. I remember that I said that I got this condition after a nasty trauma I suffered. The trauma was SPIRITUAL. Nasty! Ugly! Horrendous! I didn't believe in God, Jesus of Nazareth, the Holy Spirit, the Bible or the enemy. I was going to hell, but God SAVED my life; I knew Jesus of Nazareth for the first time in my life. What kind of father would you be if you don't discipline your children for doing something wrong? A bad one I guess. I was going to hell, but my Father Jesus of Nazareth told me about it and rescued me. I was a sinner but I didn't know anything about it since I didn't believe in anything and had the wrong beliefs. This has anything to do with religion but a strong relationship with your Father Jesus of Nazareth. It doesn't matter who you are...Jesus of Nazareth suffered all that punishment and died so we could go to HEAVEN. The condition that we have is one small sample of what hell is all about it. The Father want us to experience a little bit of this hell so we might recognize who rebellious and arrogant and sinful we were in the past. If you do not have FFI, then you have a spiritual illness put there by the enemy. Hey! Nowadays psychiatrist would have put Jesus of Nazareth in confinement and under strong medication.
Please, listen to me...buy a Christian Bible, King James version only; find a Christian, Pentecostal church that performs healing, prayers and something else. Do not become a fanatic . Please, stay away from Catholic church....they would send you to see a psychiatrist. They don't believe (priests) in what they preach. Do not try to destroy what God has given you..."your body, God's Temple". You won't understand now,but you will. Repent right now, with all your mind, your body, your heart, your soul and your spirit. Ask God for forgiveness and ask Jesus of Nazareth, not just Jesus, but Jesus of Nazareth to come into your heart, but before you do that, you have to accept Jesus of Nazareth as your only SAVIOR, the ONLY WAY to the FATHER. Accept His free gift of SALVATION. The fight will be hard from now on, but you will prevail if you TRUST GOD JEHOVAH. Do not be confused...stay away from Jehovah's Witnesses. Find the church I told you to find. Then, read the data I sent you. You might have damage neurotransmitters; check your brain and then follow up. If God wants to heal you thru any of these companies, HE WILL. If not, you will strengthen your FAITH thru some tribulation. Is not that God hates you...HE LOVES US...the enemy HATES us and he came to steal, to kill and to destroy. You said: Next week they are checking my sleep receptors. My doctor says he thinks that I may have a problem there. So we will see. What I don't know is what they will do about it." Maybe nothing. You said: " What do people who have FFI do for normalcy." Nothing. You also said: "I really can't stand this much longer. This is not living. My other body functions are also shutting down. " I know! I was there! But NOW I know that I have the same condition but not for long. I know God Jesus of Nazareth loves me so much that He gave His own life, while I was still a sinner, so I could go to Heaven.
I will keep praying for you my friend, in Jesus of Nazareth's Name. Please, watch the movie, The Passion of Christ, from Mel Gibson. Watch it many times and start reading the Bible...New Testament first; then the Old Testament. At first it won't make any sense, but little by little you will catch up.
Resign to the old and embrace the NEW. Strip your house of those things, items, books, etc that you know are forbidden and sacrilegious to God...for example Buddha statues, other religions' stuff, stop reading the horoscope and stop visiting psychic witches, etc, etc, etc.....
In God's name....
a New friend in Jesus of Nazareth's Name.
******************************************************************************************************************************
http://www.alleviahealth.com/ces.htm (talk to your doctor about this) (after you have checked your
neurotransmitters with this people: https://www.neurorelief.com/files/LaySleep2009.pdf or
https://www.neurorelief.com/index.php?option=com_content&task=section&id=7&Itemid=49 or
https://www.neurorelief.com
You should educate yourself about the system:
http://www.anxiety-depression-alternatives.com/tag/cranial-electrical-stimulation
http://www.thetatools.com/CES/CES-Ultra.htm
http://www.sleepnow.com/UltraCES.html
stop
you can't prove that God exists. I can't prove that he doesn't, but why rely so heavily on some being that has never shown himself to be? If I succeed at a task it isn't because "God" helped me, it's because I succeeded. If I fail at a task, it's because I failed not because "God" didn't want it to happen. If an ugly man approaches a very attractive woman and is rejected it isn't because "God" didn't think it was "his time", it's because the woman thinks he's ugly and would rather eat dung than be with him. Give up the God crap.
It's so painful.....
I'm crying even as I begin to write my story. I remember as a child of 7 or 8 yrs old. I would stay awake fighting sleep as my stepfather would come home drunk and they would fight all night long. I would wonder how my brother and sister could sleep through all the noise, screaming and the fear it built up in me. I would try to stay awake to be able to run to my mothers aid incase he would hurt her. A few years went by with this as a nightly occurrence. Then he started coming into my room at night and touching me. I was scared to death. Being just a child of myself in the 7th grade I finally got the courage to tell my mother. Eventually, I was asked to leave my brother and sister behind and move to my grandparent’s home. (Yes, of course years later I found out he also got to my brother and sister and I still live with this guilt.) Why couldn't I have changed things for them?????
While I lived with my grandparents, they placed a clock on my headboard; I was responsible for getting myself up in the mornings. That is when I really noticed that every hour I would turn over and looked at the clock while I changed positions. I never told anyone one. I also never thought anything about it either. I thought everyone did that.
So all through my working years that was how I slept, or didn’t. At one point in my mid 20's, I worked 3 jobs. I would try to sleep a few hours between jobs and sometimes would wake up with my body being so numb.
When I married at age 32 I was still waking up hourly, practically to the minute. Still I thought it was normal that all people rolled over at night and would wake up briefly. NOT SO. THAT IS NOT NORMAL.
At age 59 a doctor said I was diabetic, high blood pressure and I was so stressed out they experimented with a number of medicines, including Zoloft. Then a sleep study was recommended. SEVERE SLEEP APNEA. OK. NOW WHAT? Many antidepressants, Cpap and Bipap machines, sleep aids etc. etc. etc. What was worse, not being able to sleep, or all the experimental drugs for the right cocktail?
I'm 63 now and still not sleeping. My eyes are closed but my mind as always is spinning away. I control my dreams. Talk in my sleep. Toss and turn. I have chronic pain from accidents and injuries that started in '79.
I have had to drug myself every night with ambien (brand name), muscle relaxers and recently included medical marijuana. I NEVER GO INTO A REM sleep. I know this goes beyond sleep apnea. I think I have runined my sleep receptors. I now think I have a form of FFI.
Things are much worse now. I hate being drugged, tired everyday. I can never plan on being anywhere at any certain time. If I have to have an appointment before noon I forego the meds at night and stay awake. I've gone as long as 5 days without sleep if I don’t knock myself out. I never take a nap. I cant afford to even try to sleep during the day, out of fear I wont sleep at night. Sometimes, it scares me when I try to over medicate to sleep. I don’t smoke or drink alcohol.
I'm tired of living this way. I haven’t had a relationship in 25 years. I only have my 3 dogs. I don’t have any friends. I have no family. I moved to a new state and its so hard to make friends. So I stay home, only going out for groceries and things once a month. My quality of life is none with this absence of sleep. I barely wake up and its time to drug myself again and try to beat the monster.
God help me. I'm tired. And honestly, I'm just about through. I don't have any health insurance. If anyone knows of anything that will help me Please email me at ........These days and at this age, the fight is becoming almost to much to bare. God Bless
Valerian, hops, and kava kava.
You have indeed gone through some very dark valleys in your life, and I hope you will some day be able to think about and relay this painful past with out the pain. I will pray for you. I too have been victimized by sexual abuse. As for trying to protect your mother , I've been there too. Have you heard about Bentonite clay for this? You may have too many toxins or the wrong kind of combination of toxins due to all the medications over the years that may exacerbate the problem. Bentonite clay rids the system of poisons, toxins, heavy metals, etc. Bentonite has a strong negative ionic charge, while all the undesirables, i.e. Toxins, heavy metals, poisons etc have a strong positive ionic charge. The Bentonite works like fly paper, or more accurately, like a magnet, and pulls this stuff out of the body. Children with autism have been healed from Hot baths with Bentonite clay in them., as well as a host of other serious medical conditions. You may want to take some MSM before the baths. It can also be found at Walmart in the supplement aisle. It causes the cell walls to become more permeable, this in turn lets good things in and bad things out. Use 1 or2 cups of Bentonite, (preferably sodium Bentonite rather than calcium Bentonite, but either one will due) in a hot bath. Fully submerge, or as much as possible for at least 20 minutes. Do this every day for about a month, longer if necessary. An effective all natural sleeping pill that works very well,as well as traditional sleeping pills with most people, is valerian. It is an herbal that can be found in the supplement aisle at Walmart. If they are out, try a health food store. A stronger sleeping aid is hops, this you will need to get at a health food store. If they are out, they can usually order it for you. Kava kava is extremely strong, be careful with this, although herbal, it can cause you to sleep for a month. Strong reactions are seen in most People. Hope this helps. E mail me any time, I'd enjoy knowing what happens and having some company too. I don't seem to get out much either. I'll start praying for you! Love, Sherry
Sleep
Layce,
I know it's been a year since you posted your condition but I was so concerned about you and just wondered how you are doing. My heart breaks for you. To have no friends and be faced with this problem would be horrific. I have leukemia myself but have suffered nothing like you are. Hopefully you have found some help. I know their not human friendships, but coming from experience, you do have 3 small creatures that depend totally on you and love you without demands. That is enough to fight for in itself.
Please let me know how you are doing. We could be friends through e-mail. At least that's something.
Sincerely,
Julie Ball
i hope you are doing better
It sounds tough what you are going through. I just want to say that I really feel bad for you and I know that there is so much suffering that goes on in the world today that makes one really question things. I have had some issues with sleep in the past also and it is easy to wonder why there is so much insomnia, depression, and anxiety that we often experience. However, Jesus Christ did come to die for our sins and all of the suffering that we experience in this world will one day be understood. I just hope you are doing ok and wanted you to know that it made me sad when I read your story and I hope you are doing better and finding some hobbies to get involved in to help you meet more people.
Your story
Layce,
I would really like to hear more of your story, I suffer from insomnia as well. Please feel free to write me back or email me at .