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Author Topic: I think I have Sporadic Fatal Insomnia  (Read 1283 times)

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Offline light

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I think I have Sporadic Fatal Insomnia
« on: March 15, 2014, 07:49:32 PM »
Hi, I am a 17 year old male and have been experiencing troubles with sleep for the last 6 days and I'm pretty sure my symptoms are consistent with SFI and Morvan's syndrome. I've been having trouble getting to sleep mainly, I'd often lie in bed for several hours before finally drifting off, when I lie there awake trying to get to sleep, I find my self in these brief REM like states sometimes, and when I begin sleeping it feels relatively normal
until when I awake and find my self feeling sort of "different", it's not a normal sleep, it's not refreshing and I often have a headache when I awake.  I don't feel super groggy through out the day though I do feel relatively sleep deprived,  it seems as if there may be a disruption in my sleep stages. Also other symptoms to note are muscle twitching( this happens mainly when I try to fall asleep though it does happen during the day too), increased heart rate when I try to fall asleep. I feel slightly disorientated throughout the day, I also have double vision though I've had double vision for as long as I remember, and I think I'm even hallucinating sometimes.

So those are my symptoms, they are very odd and scary. I don't know what to think anymore, I know there's  very low chance I have SFI but I can't help but think I might have it, I've been to the doctor during all this but
he did nothing but give me a sheet with advice on how to sleep, he was not my usual doctor since I was unable to see my normal doctor during all this, but I'll hopefully see a different doctor next week. I haven't had a sleep study done yet though I'm hoping I'll be able to do one soon. I'm very worried and if you have any questions or something to say please do.
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Offline Zeltion

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Re: I think I have Sporadic Fatal Insomnia
« Reply #1 on: March 28, 2014, 04:31:11 AM »
I went through the same phase about two months ago. I started stressing too much about sleep (I am an 18-year-old electrical engineering student) that my sleeping cycle started messing up on me. I started sleeping less and less until I only slept about 4 hours a night. The doctors literally prescribed me everything in the book. Nothing worked because I did not know how to chill out. On top of that, I would experience very broken sleep. There were always vivid, non-stop dreams that left me even more exhausted. My blood pressure and heart rate would be elevated at times. I also started losing my appetite and felt like I could fall over during the day. I want you to know that anxiety/focusing on something so incredibly rare will not help your situation. Your body will put you to sleep eventually. In the back of my mind, I was absolutely certain that something was wrong... well here I am alive still. Although my sleep is better, it is not perfect by any means. Some nights I sleep only 2-4 hours just to end up crashing 11-12 hours the next day, and I still wake up throughout the night quite often. No offense, you are way too young to even be considered for this. Also, you would experience dementia-like/neurological symptoms such as slurred speech, memory loss, confusion, impotence, etc. Also, the muscle twitching when you try to fall asleep is common. The fact that you posted about this incredibly rare prion disease makes me think you have anxiety, not sporadic fatal insomnia. There are plenty of us out there with just regular insomnia. Just relax please. You might need a doctor-prescribed sedative just to help you break out this cycle. Feel better soon. :)
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Offline Blueberry

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Re: I think I have Sporadic Fatal Insomnia
« Reply #2 on: March 28, 2014, 08:47:13 PM »
I doubt it's SFI but then again I don't have a medical degree yet. I had similar problems.

Around a month ago I began waking up earlier than usual and I felt fatigue after waking up, yet I couldn't go back to sleep. My normal was 9, 10, even 11 AM but now I was waking up at 6, 5, even 2 AM
 I had headaches when I woke up and I assumed it was a brain tumor. Somehow I got on Wikipedia's page for SFI and freaked out even worse. I obviously had this extremely rare disorder and I was gonna die, no cure! At least a brain tumor has a chance of treatment..

I started swearing I was waking up earlier each night. One day it was 6:30, then 5:30, then 4:30, then 2:30.. I assumed I'd get worse until I couldn't sleep at all. I would go to sleep normally, sleep like a baby, then randomly wake up all hungry and needing to use the restroom.

Now that I've lowered my stress levels I've noticed I'm sleeping better. No more early morning headaches and today I woke up at 9 AM. I recommend trying to keep yourself as stress free as possible, maybe taking sleeping medicine, and generally just relaxing. See your doctor if you don't get any better within a week or so, just in case. It could be normal insomnia, could be SFI, but no matter what sleep deprivation is bad for your well being.
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