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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
SEVERE INSOMNIA
I've had severe insomnia for 6 months now and can only sleep every other day via Mirazapine for 6-10 hours. My advice is just don't stress yourself out over it. As an Insomiac there will be many nights where you don't feel like you slept at all and it is important to understand you are probably getting primarily light sleep which means it is very difficult to tell if you slept or how many hours you've slept. There have been sleep studies where many of people reported they did not sleep but the doctors report they got rest and entered stage 2 sleep.my insomnia started with intense anxiety over the first few months and I had a period where I felt I didn't sleep for the month which is false because you would be hallucinating after a few days.since then I'm a lot calmer and my sleep is a lot better than it was starting out although I still have sleepless nights I suspect Mirazapine has made me dependent on it.
request
Hay im harishta my problems many days i didnont sleep i have shortbreething pls help me without pill i sleep well normal no shortbreathing pls help me. thanks
My chronic insomnia story, waiting to see neurologist May 2015!
Hello.
I am female 29 years old from the UK. Use to be very active work long hours and everything was fine until last year September 2014.
I began to notice problems with my sleep from September 2014. I didn't think anything of it other then I was stressed, and working 11 hour shifts always on my feet.
My sleep wasn't very bad at this point in time I could sleep on and off and found I started to notice small changes and on the odd occasion I would have problems sleeping but nothing to unpleasant.
So I ignored this and just put it down to stress and working long hours 6 days a week.
Then in November 2014 I started having a lot of problems and notice a change in me all I know is that I did not feel like my energetic self and felt very odd.
I started having insomnia my sleep really started to go all over the place, I also felt I had a personality change as if I was on an extreme high, like nothing mattered, anything negative in my life happened this high made me seem like it did not matter (very unlike me I've always been very alert aware and focused I wouldn't say I wasn't miserable but I wasn't happy go lucky either).
I felt like I was going through an "episode" that's what I call this - during this horrible episode I could not sleep at all between 7 and 9 days at all and when I say at all I mean at all. I also began to get tingling like electrical tingling in my brain and neck area, muscle weakness in my arms particularly left arm and odd warm sensations over my body like I could feel the blood moving around (impossible I know) but that's what it felt like and I began to sweat a lot during the night and always felt hot, I also began to lose my taste and smell nothing as I knew it tasted or smelt the same and nothing felt the same either.
Everything felt different in my brain and in me.
I could not understand what was happening to me I thought this ''episode'' would be a one off but it happened again and ill get to that part in a bit.
After going through this I went to the GP pretty much every week as I wasn't getting anywhere to begin with and it was hard to pinpoint exactly what was going on with me so the GP kept sending me away and did blood tests they came back normal. Then I finally was put on sleeping tablets this worked to begin with from November 2014 till January 2015. And I was still in this high like fog state of mind and my alertness and focus had completely gone. But i was able to sleep on and off with the help of sleeping tablets.
But I started getting abdominal pain from taking the sleeping tablets so decided to stop them off my own accord and tried to get myself into the natural way of sleeping. And I could sleep which was good for me on and off but I was able to which was good enough for me.
Then I released this wasn't going to go away and just tried to adjust to this what ever it is, I kept going back and forth to the GP and A & E on a few occasions as I was becoming desperate. My GP finally referred me to a Neurologist (and I am waiting to be seen currently) so I was just dealing with whatever is happening to me until April 2015 where I had another major second ''episode'' same thing started to happen and I noted my symptoms down while going through this.
It starts off with not being able to sleep at all this lasted this time between 8 and 11 days no sleep at all during this I felt very weak I lost weight, I also started to feel the electrical tingling in my head and neck it was very severe during this second episode.
My lymph nodes in my neck felt very sore so did my throat and I have a tearing sensation over my chest left side of my face felt numb, muscle weakness in my arms, sweating a lot and feeling very hot I also have become forgetful and had problems with my speech at times and memory problems on and off, i had some clumsiness walking into thing and dropping things
My fog like state of mind went and my alertness came back and since April 2015 I have had to take time off work.
These symptoms were very severe during this ''second episode'' they have subsided but they are still very much there everyday but the main symptom is NO SLEEP and feeling very weak.
I can't fall asleep at all. I was prescribed by my GP more sleeping tablets tried them all no effect its like my body will not let it take affect when I do take the sleeping pills after trying 4 different ones my brain just feels like its having no affect which is odd as they worked back in November 2014.
Despite not sleeping I am extremely alert which I can't understand how am I alert and focused, if I am not sleeping. Very strange all I know this is affecting my life in a huge way and I can't seem to adjust to this, this time round.
I can't return back to work as I am so weak when up on my feet and because I can't sleep. I can't stand living like this I don't know whats happening to me but it's absolutely awful.
I have done everything from my end to help myself gave up caffeine started to meditate eating healthier and I started this back in January 2015, nothing is working.
Nothing is the same everything is different and feels different even my other half can't stand to see me so unhappy and so lifeless this isn't me but I can't do anything about it, I've been waiting to see a neurologist for a while and been chasing that up with the GP recently I was put on the urgent list on the 11th May 2015.
I know something is happening to me what I cannot tell you, I am not depressed or upset what is extremely odd is that I am very calm this isn't like me at all.
Any valid information of advice you can give me would be greatly appreciated.
I await your responses.
Thanks
chronic insomnia
Hi candi
i wondered how you were feeling and if you ever got to the bottom of this. I haven't slept for 20 months and it is strange but I am still alert. A sleep study showed me sleeping for 61/4 hours but I was definitely awake during this as I cant sleep at all. If i take 4 zopiclones sometimes that knocks me out for about 3 - 4 hours but i cant get enough from my doctors. The worse thing is nobody believes me and because i am stressed out all of the time my husband is on the verge of leaving me. I just wished he would believe me as i want him to know the truth.
let me know how you are
kind regards
johanne
Relate
Hello Candi. I came across your post and couldn't get over how much our symptoms are alike. I have lost the ability to sleep, I don't feel anything which is weird because I'm usually very alert and cautious. I'm very concerned with this. I can't even sleep, when I close my eyes it's like I'm awake. Please email me if possible!
how are you
Hi,
just came accross your email as going through internet for some help.I have been suffering terribly with symptoms you have described and wanted to know how are you now presuming you had neurology investigations.
kind regards
Vicky
Insomnia
So far, much better-
I still have insomnia, I've been taking Cymbalta on a daily basis for awhile now and I'm still not sleeping anywhere like I used to but I am sleeping at least 3-6 hours most every night now.
I was sleeping maybe 30 minutes or at max 1 hour for the entire day for months, so yes, it's improved dramatically.
Believe it or not I take 2 Extra Strength Tylenol or Advil and that also helps me sleep decently better, so try it.
Do I still occasionally have sleepless night, yes but I'm not stressing nearly as much.
One thing that has helped me was when I was only getting 30 minutes to 60 minutes a sleep a day I would be online searching everything, that was what had lead me to this site. So my stress, anxiety levels were already high due to panic attacks etc BUT when you think you might have a deadly disease those anxiety levels had just sky rocketed, so when Cymbalta did seem to help after a few months that sky high anxiety also faded a lot.
Good Luck yourself- try to stay positive & seek professional help, when something helps your sky high anxiety might also come down quite a bit & both will aid at healing and improving your sleep.
Are you still living with this
I have been battling insomnia for almost nine months now. I have been on almost every kind of sleeping pill they make. Mine started after taking flaygl for ten days. I have been to 4 neurologist and they do not help you so you need to find a brain center like Cerebrum helath center in Dallas TX they may be able to help you. I am trying to get the money up to go myself.
My experience is the same as
My experience is the same as yours. Please let me know what your experience has been like subsequently.
I hope your well
Candi did you manage to get any help with this , I really hope you did, can you please let me know
My experience is identical to yours
Dan
Did you ever find an answer
Did you ever find an answer
insomnis
hi i used to sleep like a baby no problems at all, then I got addicted to late night shopping channel and it broke my sleep pattern. I had just started a day centre for older people and I loved it, one morning I awoke looked in the mirror and I had changed, looked much older. I don't know whether there had been subtle changes that I hadn't seen but I couldn't understand what had happened, anyway I end up at the doctors who in turn got me an sppt with a phychiatrist any way from that day approx five weeks ago I have not slept one minute, my family think I have gone crazy my mind is a fog. I feel like I am in s dream no more of a nightmare. Just existing really had to give up the job I loved. At the moment I am on holiday with my husband in Spain just going through the motions really. Waiting for another night to come hoping I can sleep my lymph nodes are up and I sweat every night. I just want to be me again. Please reply if you feel like this. I feel very low at the moment x
Hello i have the exact same thing as you
if i already message you this im sorry for the spam, im typing this again because i think my previous message didnt get to you.
i dont have any tips for you sorry, but i want you to atleast hear me out.currently im been having insomnia for 2 months and your conditions sound exactly like mine. now im scared that i might have this Sporadic fatal insomnia disease. Before all of this happen i was sleeping and functioning normally like a average person would my entire life then all of a sudden insomnia hit me for no reason ( well on that day i did drink coffee and a big can of energy drink but after that i never drank caffeine), Coffee can cause insomnia however it shouldnt last longer than a few nights. During my insomnia i would only sleep about 5 hours with multiple awakenings throughout each night, i think it is only light sleep as well because it doesnt feel like i slept but i knew i did because i was particularly dreaming. I have muscles twitches that felt like electrical shocks that would run throughout my body which is really bothersome, i notice as well that i feel werid sensations of being hot even during really COLD nights not only that but i lost the perception of being warm. Despite not being able to sleep i would never feel truly tired and always feel alert. The first month of insomnia i was calm at first, even during my sleepless nights my mind doesnt race, i was calm because i knew its going to resolve itself soon and i thought it must have link to anxiety or stress although im pretty sure it ISNT the direct cause for my insomnia, but now that its been 2 months my Insomnia still persist, at this point i started to panic, ever since i read about Fatal insomnia disease i became paranoid 24/7 and so became depressed. Now i would only sleep 2-3 hours and i would wake in the middle of the night not able to go back to sleep. i dont think i have this disease as it is EXTREMELY rare ( even more rare than being struck by lighting after winning a lottery) but i still couldnt abandon the thought of it. Im wondering if you could please update me on how it went with the neurologist. thank you
also i already did went to a doctor but he only explained it as anxiety plus my blood work is normal, im currently taking no pills and been thinking to go to a sleep study soon
SFI
I don't know the exact current situation you're in so I can't diagnose you but it sounds like you most likely don't have SFI. Have you lost any of your senses? I don't know if you're male or female but most people who have this rare, awful disease experience early menopause and if male, the inability to ejaculate and feel any need for that type of pleasure because as a result of this illness, you lose the ability to FEEL anything. In addition, your thoughts start to become extremely scrambled and aren't based in reality. It's not that you're hallucinating things that aren't there. It's just that the prions eat away your brain, causing small holes throughout various parts of your brain, particularly the thalamus which is responsible for emotion, sleep and various senses. Are you experiencing any type of dementia where you don't sense time. You could be looking at a spot on the wall for what you believe was 5 minutes but it was actually an hour or two. That's just some of the symptoms I've experienced. Have you lost the ability to see colors and light as you should see them? Is your hearing skewed as if you can't separate background noise from other noise? Does your body detect changes in temperature as it should? Are you able to communicate and express yourself at all with others? Do you feel love toward anybody or anything? Can you still experience pleasure at all? Do you still have the ability to emote? I'd love to help you in any way I can? I recommend you first try to get a sleep study to accurately detect how much sleep you're getting and what type of sleep it is and if it's normal and healthy. I would also suggest you get a PET scan and MRI if you can. Many times, nothing shows up but it's worth a shot to try to diagnose this illness as it's so hard to detect...practically impossible. It's also very important that you contact the National Prion Surveillance Center in Ohio and ask about the Nasal Swab Test. It's a new and accurate way to at least detect this illness other than autopsy. There is a blood test but it only tells you your blood type and you can get it regardless of your blood type. MM (homozygous) is mostly associated with this illness but that's mainly if your of American descent. I have MV (heterozygous) and had it but I don't have it anymore because Jesus truly and miraculously healed me last November. I am so thankful to be healthy and alive. I will pray for you. Unfortunately, I don't have a phone but if you really need to talk, we can either type or you could leave your number and I'll borrow a phone and contact you when I can. I hope you feel better very soon.
Sfi
Hi are you available to talk at all? Please email
Me at brendan.grimm@gmail.com
help
Plrse call me 267 968 1913
?
What eventually healed you from this
I have the same thing too!
Sorry i dont have any tips to offer but i want you to atleast hear me out, the conditions you listed are exactly like mine and to be honest i am panicking because i think i have sporadic fatal insomnia, currently im been having my insomnia for 2 months. before this, my entire life i was sleeping normally then all of sudden this insomnia hit me, i did remember on that very day i drink a big can of energy drink and coffee ( i stopped drinking after). During this period each night i would sleep only estimated 5 hours with multiple awakenings ( Sometimes it doesnt even feel like i slept, but i knew i did anyways because i was particularly dreaming) despite not getting enough sleep, i never felt truly tired and always alert. i would have muscle twitches in my arms and legs that felt like electrical shocks running throughout my body to my brain, wasnt pleasant, i notice also im been feeling werid sensations of being hot even during really cold nights at the same time i lost the perception of being specifically warm.The first month of my insomnia i was calm at most even during nights my mind doesn't race because i knew its going to resolve itself soon, now ever since its been 2 months im starting to become paranoid 24/7 because it hasn't resolved itself yet despite me being calm the first month. recently I read about sporadic fatal insomnia and ever since then i start to become even more paranoid also becoming depressed. now i would be sleeping only 2-3 hours waking up middle of night and not able to go back to sleep at all. i dont think i have this fatal insomnia disease as it is EXTREMELY rare especially the non- inherited one, yet i still wouldn't abandon the thought of it. im really scared but knowing that someone out there with as the same symptoms as mine puts my worries at ease, if you dont mind, can you please update me what you had learn from your neurologist. Thank you
I had insomnia for about a
I had insomnia for about a month and after I had gotten a biofeedback done it went away. I also stopped eating gluten and was on sonne 7 detoxification.
i have seriours problem i
i have seriours problem i cant sleep anymore please help
To all worrying
I can not stress enough how rare this is. Consider this 2 types of FFI(SFI Is same except not genetic)
(What you would think you have)Homozygous average life 10 months patients report fever, excessive tearing, pinpoint pupils,hypertension a few weeks after onset. Total insomnia occurs 3 months into the disease.In reality I think it is obvious past the first month you have this.patients will report insomnia as a initial symptom.
Heterozygous average life 30 months. insomnia does not appear until later months in. Patients will complain of ataxia, rapidly depleting balance,double vision slurred speech on onset.a lot of patients die without even having insomnia a symptom. (0 chance you have this if you are months in and your only symptom is insomnia.)
Additional facts less than 10 patients under 30 have had this
Sporadic fatal insomnia may just be the rarest disease in the world less than 10
30s onset is still considered very uncommon
Severe sleep disorders happen all the time it is significantly more likely you have contracted one that enables an average of 2-3 hours of sleep per night than some disease that's rare even among rare diseases
If your initial insomnia was severe(suddenly 2-3 hours or sleepless nights) there is no chance you have it. All FFI cases are mild at first
If you are really worried check into a sleep clinic if you can reach stage 2 of sleep read by Polysomnography you do not have the disease. FFI OR SFI patients will have no sleep spindles or remarkably low sleep spindles. Insomniacs or sleep deprived patients will have more sleep spindles than an average person. Even if you fail I would still say it's more likely you don't have it. PET scan is the only 100% you have it tool although Polysomnography can tell you if you don't have it.
Thanks man
I was really worried that i have FFI but i stumbled upon your comment and i was no longer much paranoid, i would like to thank you
I know I have this. Can u
I know I have this. Can u email me
Sfi
Do you have it? Call me.
SFI
Hi. I would really like to help you. I can only give you advice and listen to your symptoms as I had the illness but no longer do because Jesus honestly healed me. First, aim to get a sleep study and call the National Prion Surveillance Center in Ohio and ask about the Nasal Swab test and if it's available because all other testing is mostly inconclusive and inaccurate. PET
Scans and MRIs may help to diagnose the illness but usually it does not. If you leave your number, I can give you a call and discuss this with you. When you call the National Prion Surveillance Center, remind them that the blood test only diagnoses FFI. That's the hereditary form of this illness. Your blood type is irrelevant. What are you exact symptoms? I hope I can help you and I'll pray for you as I know how awful and lonely this illness is because you also lose the ability to have normal communication with people as your brain dies. It's scary and I do hope I can help you.
JESUS IS OUR ONLY HOPE..
MY PRAYERS GO OUT TO EVERYONE ON THIS FORUM SUFFERING FROM THIS HORRIBLE DEMONIC DISEASE, IT IS TRULY FROM THE PIT OF HELL.
I HAVE SUFFERED WITH THIS DISEASE FOR CLOSE TO A YEAR NOW AND MY SYMPTOMS BEGAN JUST LIKE MANY OTHERS: IT BEGAN WITH A BURNING STABBING SENSATION IN MY HEAD AND ALL OVER MY BODY.
EXTREME INSOMNIA -- NO SLEEP AT ALL FOR DAYS SOMETIMES WEEKS ON END, IF I DO DOSE OFF IT WOULD BE FOR ONLY 10 TO 15 MINUTES THEN I AM JERKED BACK AWAKE BY A BURNING SENSATION ALL OVER MY BODY FOLLOWED BY A MIX OF EXTREME ANXIETY , DEPRESSION , CONFUSION AND HALLUCINATIONS.
LOSS OF SENSATION AND EXTREME TEMPERATURE SENSITIVITY. ALWAYS FREEZING COLD . BURNING SENSATION ALL OVER MY BODY LIKE A CHEMICAL BURN.
LOSS OF ALL EMOTION EXCEPT FEAR SADNESS AND DOOM.
DOUBLE VISION, DRY EYES AND NO TEARS WHEN I CRY.
SLOWLY LOSING MY ABILITY TO WALK AND KEEP BALANCE
BLOOD PRESSURE AND HEART RATE SPIKES
INABILITY TO SPEAK AT TIMES AND TROUBLE READING AND WRITING
PERHAPS THE MOST BIZARRE ASPECT WOULD BE THE DECLINE INTO MANIC PSYCHOSIS, AFTER MANY DAYS OF SLEEP DEPRIVATION I BEGIN TO WALK AROUND THE HOUSE AIMLESSLY MUMBLING , HALLUCINATING IN A MANIC DREAM LIKE STATE HAVING EPISODES OF PARANOID DILUSIONS AND WIMPERING AND CRYING.
EXTREME APETTITE DISTURBANCES -- I AM EITHER CONSTANTLY HUNGRY WITH NO SENSATION OF FULLNESS AFTER I EAT OR I WILL GO DAYS ON END WITH NO APPETITE AT ALL.
NAUSEA , DRY HEAVES AND CONSTIPATION
ALL OF THESE OCCUR ON A DAILY BASIS.
I SYMPATHIZE WITH EVERYONE WHEN THEY TELL YOU THAT NO-ONE BELIEVES YOU. THE HOSPITAL ER DEPT. WILL ONLY TREAT THE SYMPTOMS , LOAD YOU UP ON MEDS AND SEND YOU ON YOUR WAY. SPECIALISTS LIKE NEUROLOGISTS, PSYCHIATRISTS ETC.. TELL YOU THAT YOU HAVE ANXIETY, DEPRESSION BI-POLAR AND GIVE YOU USELESS ANTI-PSYCOTIC MEDS , BENZOS WHATEVER THEY CAN PRESCRIBE.
YOUR ONLY HOPE FOR HEALING AND COMPLETE RESTORATION IS IN JESUS CHRIST OUR LORD AND SAVIOR , I PRAY EVERYDAY TO BE HEALED AND I AM STILL CLINGING TO THE HEM OF HIS GARMENT AWAITING THAT DAY , BECAUSE BELIEVE ME MODERN MEDICINE HAS NO CURE, NO TREATMENT, OR NO MANAGEMENT FOR THIS DISEASE!!!! EVERY AVENUE IS A DEAD END AND YOU END UP GOING THRU MONTHS OF ENDLESS TORTURE HOPING FOR SOME RELIEF THAT NEVER COMES.
KEEP THE FAITH AND PUT YOUR TRUST IN JESUS.
Hi
Hi. Can we please talk? I believe in Jesus and his healing ppowers but i lost my sleep 6 months ago. Im so tired. Desperate. Need help. Please answer me
Fatal Insomnia
I hope I don't have this sporadic insomnia it started eight months ago and I have been popping sleeping pills and benadryl and that helped me sleep but gave me anxiety lunesta worked great for a week but made me depressed I now take mirtazapine 7.5 and sleep most nights real well,but I can't nap like I used to before the insomnia,my question is if I had this all those meds I was on probly wouldn't have worked,I took tamazapam,ambiance,trazadone,didn't like how they made me feel
Same
Hi! You sound EXACTLY like me. I lost my ability to fall asleep 5 months ago. Like at all. Not even one minute at any time without an aid.
I take 5mg of Mirtazapine every night and that gives me like 3-5 hours of bad quality sleep. The worst days are The ones where I need a nap cuz Im really tired and I cant take it. I suffer soo much.
Did you heal? PLEASE answer me. Im desperate and feel so alone. Thank you
Jesus healed me from severe insomnia
I suffered with severe insomnia for 5 months. It was horrible. I was full of fear, had panic attacks. I tried going to doctors and they gave me meds but I always stopped taking them because I didnt want to be on medications. After the 5 months, I went to a psychiatrist and was put on medication to go to sleep and began to sleep but was miserable. I didn't want to be on meds and didn't know how I was going to be a mom while I was on meds. I believed Jesus could heal me while I was going through the insomnia but I didn't know how. A man contacted me while I was on meds and talked to me about Jesus and obedience to Him and then another man told me how to wean off the medications. I began to repent and turn from all willful sin and weaned off the meds. In a little over 2 weeks I was off all my meds and sleeping. My psychiatrist said if I ever got off my meds then all the symptoms would come back but I was able to get off them in a little over 2 weeks. Jesus healed me and He can heal you too. There is nothing He can't heal.
Please contact me at my email address above, . I know how horrible not sleeping cen be. Jesus can give you rest and peace. Please contact me. I am living proof that Jesus can heal you too. Be blessed.
Cant sleep
I need your help to sleep , i see jesus healed you . Im a christian as well and i hope he can heal me too and give me some rest
HI
Hi, im very happy for you that your able to regain your sleeping patterns with the help of faith, Im wondering if you can update me on how your doing currently, thank you
Insomnia
Pls help I feel like I have lost the ability to sleep not slept in 2 months really worried I may have sfi
Insomnia
Erm that's all good and all but Jesus isn't real... I'd appreciate some real advice for dealing with my insomnia. Thanks
healing
He exists only for those who have their eyes open
Wow are you serious?
This a place for real advice for real problems, what you had was simply either stress related and the "belief" in jesus helped release that stress and thus you were able to fucking sleep everyone is different don't go spamming your religious bs everywhere, I once could sleep for an entire week in the end Meditation and some herbal tea helped me but I repeat! its not the same for everyone. I hope everyone can get some sleep positive vibes to all suffering peace out.
Help
Please talk to me about fatal insomnia
This is prion disease
Hi,
i lost ability to sleep in april 2013, i tried all types of pill but nothing works also in same time i lost sense of pain than in juny i lost all emotions ( i cant laugh, cry, feel happy or be sad...) and lost all humans senses like sense of smell and taste , feel hot or cold im, my thinking its only part of brain that works. i was very nice boy, but this disease changed me tottaly im not like earlier my character has changed and i only know that im alive nothing more...this is mistery in medicine and mistery of whole world. wish i was dead than living like this i have group on faa c e buk called fatal insomnia cjd so all people with similair problem can join...
familial insomnia awareness newbie
I chanced across this page whilst looking for something else...I had heard about this condition before but did not realise what a debilitating and frightening illness this is, my heart goes out to you my friend.
Its one most truly tragic aspect might be its saving grace, the support group you have formed may lead to better understanding and treatment of the condition if one is to be found.
but to see your comment here?
right under a vivid description of the condition.
Iwould hope to be so brave in the circumstances and i really couldnt blow more smoke up your ass if i tried.
Good on you Mensur.
however selfishly it may sound
You just made my world a better place by proving that us humans?
we are pretty amazing creatures in any circumstances should we choose to be.
and i, for one am glad we still have you.
And take a look out the window at the world...its still beautiful to you i hope!
Thank you for having the strength still to try to help others in the same position.
I shall certainly visit the group to learn more...
take care Mensur.
sincerely.
Joe
My friend's mother was
My friend's mother was genetically linked to this disease. She passed away two years ago in April. God has nothing to do with it.. You must understand that there is no God that can stop this disease. She believed in God and prayed but she knew that she was going to die. There's no use in clinging onto idols who'll only drag you down like anchors..
Ffl
Im suffering with it
Sfi
Pray
to the preacher
I believe in Jesus Christ, in the name of the Lord and the Holy Spirit. But I had a head injury in 02. I know I don't have FFI. But it feels like it. I don't sleep without meds. Trust me I have prayed with all my friends. Don't criticize.
Sorry about your head injury
Sorry about your head injury :( do you obey Jesus?
gluten intolerance and gmos
i think gmos are to blame for this disorder. it only happens in genetically susceptible individuals, but it also can affect one member of a family but not others. i believe this is because of varying factors. personally my parents have no food allergies but i suffer debilitated by them now. they began several years ago at around age 28. i am sure i am going to die. everytime i have a cramping constipating diarea flare up, i get insomnia that lasts days. it makes you just want to die.
parasites caused from gmos and bacterial imbalances and all that also contribute to debilitating insomnia. i do not realy believe in this 'genetic insomnia' ala fatal familial insomnia. there are simpler explanations and we are potentially all susceptible. it is a screwd up era we live in. when ive gone to the hospital in these kinds of states they just send me home. they wont do crap for insomnia even if its life threatening. i hate doctors. i have lost all hope. i wish i was rich enough to afford alternative medicine, but theres just no way. if you are rich, i highly recommend seeking out alternative medical help. there is alot that can be done.
good luck. i hope i make it through this flare up. :( heh.
I'd suggest the hitchhikers
I'd suggest the hitchhikers guide. don't panic.
and the lost chapters/alt
and the lost chapters/alt versions they are going to release this month....
just saying...
Brain Disease
Months ago I stopped eating properly and spent day after day sleeping continuously. I lost the ability to function properly and my brain seemed to stop working. My thinking was not affected, but I am unable to perform normal everyday tasks such as washing myself or using the washing machine . I was sent home from work last july because I could no longer perform tasks I have been doing for over 40 years. I am sure that the part of my brain that gives me direction on everyday tasks has been destroyed. I have not slept at all in months and my brain won't let me enter the sleep mode and I just lay in bed with eyes shut but remain conscious and awake throughout the night. I have lost loads of weight and have noticed both my sense of smell and taste have deminished considerably to the point that I can no longer appreciate the taste of food chocolate or cigarettes. I just wish someone would take my symptoms seriously and not consider this to be a mental problem. I have seen the psychiatrist and given the drugs a go but the problem keeps getting worse. I know that parts of my brain have been damaged and can never recover. I can't function as a person anymore and just wish I was dead.
Are you still alive men? You
Are you still alive men? You sound a lot like me
chocolate-
chocolate- stimulant
cigarettes- stimulant
and no doubt coffee too?
if you were to remove these then you might find some respite.
just dropping the coffee first might help...i can tell you drink it from your writing style...but watch for the crippling headache of withdrawal---ease back and then stop...
the headache will still hit you but not as hard as just stopping.
no cigarettes after six...and a chocolate addiction will kill your kidneys.
its toxic.
8lb of dark chocolate will send your average human into toxic shock that will and has killed.
1lb for a dog...and they cant get enough of the stuff- it gets them higher than it does us.
sexy chocolate? christmas and birthdays only- i really cant believe they give it to kids.
in south american culutres it was adults only i seem to have read.