Having a panic attack. Pls assure me I don't have fatal fami

Two and a half months ago, I randomly contracted insomnia. I'd never experienced it in my life before. It just spontaneously happened. I recently graduated from college, but I wasn't feeling any conscious stress or anything. Suddenly I got insomnia, and couldn't go to sleep for 3 nights in a row. So I'm assuming something biological happened?

The only thing...is that I've had really bad sinuses for the past 4 years (i've been suffering from eustachian tube dysfunction like symptoms, where my ears are blocked, and it feels like ur on an airplane). my ears haven't "popped" in 4 years, so idk if that contributed to my current insomnia.

So I went to the doctor, and he gave me Zolpdiem/Ambien. Now that helped me go to sleep, and now I can go to sleep on my own. The problem is, I'm having a weird condition: whenever I'm sleeping, I'm going directly into REM sleep, and am having very vivid dreams. I experience sleep paralysis, and am conscious while my body freezes, etc. But I'm not getting much deep sleep, because whenever I wake up, my body is feeling extremely tired. Then I started using Ambien again almost every day, which makes my body feel okay the next ok, but idk if that's because Ambien also acts a muscle relaxant, or if it's actually helping me get deep sleep.

So basically, when I wake up: mind + eyes feel fresh, but my body feels tired (unless i also take ambien)

I tried chammomile tea, melatonin, etc, and while that helped me go to sleep, it still hasn't solved m problem of a lack of deep sleep.

Fast forward to this week, and my vision has gotten a bit weird: sometimes when I blink, I'm seeing flashing lights, my vision has got a bit worse, I'm sometimes seeing dots on the corners of my eyes. I'm freaked out. ARE THESE HALLUCINATIONS? If so, that means they could be a side effect of my ambien OR it could mean that the ambien's potency is wearing off, and these are examples of sleep deprived behavior?

I'm freaking out, and I have no idea what to do. I can't get a job b/c I'm so tired.

Should I look into cognitive sleep therapy or something? A doctor suggest I do that to "retrain" myself how to go to sleep ro something.

Anyway, please please assure me that I do not have this:
http://en.wikipedia.org/wiki/Fatal_familial_insomnia[1]

I'm exhibiting some of the symptoms: I spontaneously contracted this (but can also develop
spontaneously in patients with a non-inherited mutation variant called sporadic fatal insomnia). Moreover, sometimes my body twitches while I'm awake. And i'm having the flashing lights + shapes on the corner of my eyes, and lowered vision, which COULD be hallucinations?? (but at least they aren't severe or anything)

and my eyes are moving more slowly

Moreover, the mechanism seems similar: i'm not getting past light sleep into deep sleep (although I am getting REM sleep, which is different from the symptoms on this page...it appears that people who suffer this DON'T GET REM SLEEP). but im not getting the deeper stages of sleep, which is troubling, b/c that means my body will become weaker with every day i hope it gets better
However reasons why I might not have it: i'm not delusional, and i've had this condition for 3 months already, like i'm not having phobia or panic attacks randomly (except for now, but that's b/c this article freaked me out).

Also it looks like in the vast majority of cases, this is inherited: "Fatal familial insomnia (FFI) is a very rare autosomal dominant inherited prion disease of the brain. It is almost always caused by a mutation to the protein PrPC." It's also extremely rare. I don't have any family history of this
I don't have a complete inability to sleep: I'm getting REM sleep. Moreover, with the exception of the small shapes i'm seeing my eyes (possibly hallucinations), I'm feeling okay, content, happy, relaxed, in control, etc.

Also the sleeping pills are helping me somewhat, which this article says they can't do (this article says for ppl with fatal familial insomnia, it makes them feel worse)

So who the hell do i go to see to get my conditioned check up? Is there someone who can do a full body scan of me, maybe look at my brain and my brainwaves or electric patterns, or something, to make sure that I'm overall ok and I don't have this fatal disease? What type of doctor/therapist should I go see?

I can think ok, but my body is really tired and exhuasted (and it's nearly completely exhausted w/o the sleeping piills). Given my situation, do you think it's serious enough that i need to go the emergency room, or be hospitalized, or something? idk who the hell to see to get my condition checked: the general physician or whatever definitely wouldn't be qualified (my last general doctor just gave me ambien and told me it would go away in a week or so, but it didn't)

But...it's extremely extremely extremely unlikely that based on what I described to you, I have this disease right? That i'm just having other problems with insomnia? That it will be eventually cured? That I will be able to eventually somehow in the forseeable future get to experience deep sleep and the flashing lights + the shapes at the corner of my eyes will go away?

I can't take this anymore

Considering there are less than 40 families world wide who have it, and there are roughly 7 billion people on this earth.


The chances of you having it are impossible. You have a better chance of winning the lottery multiple times than having this disease.


I know what you're going through, you start reading stuff online and you start making your mind thinking you have it, thus becoming a hypochondriac.


You just have regular insomnia like the rest of us here.

If you are able to enter REM sleep, then you don't have it.


People who have this disease cannot even get past stage 1 of sleep.


You just have horrible anxiety, they may still there be subconsciously.

The lack of sleep sets it off every time, it's a viscous cycle, trust me, I know.

I was slowly improving on my sleep, but then I had another anxiety attack, and now I'm back to 2-3 hours of sleep every night, unable to fall asleep again.

*mod edit*

So who the hell do i go to see to get my conditioned check up? Is there someone who can do a full body scan of me, maybe look at my brain and my brainwaves or electric patterns, or something, to make sure that I'm overall ok and I don't have this fatal disease? What type of doctor/therapist should I go see?

Just see a psychiatrist, my friend. Your brain is fine.

I think my suggestion would be to ask your GP whether they recommend seeing a psychiatrist or a neurologist. Dr Google can indeed point you to the strangest diagnoses -- a friend of mine, suffering from headaches, became convinced she had brain cancer, guess what -- she didn't. It would be good for you to see a specialist if only to assure you that you don't have a fatal illness.

Big hugs!

By now this is an older post - but since "I think I have FFI" is so common on these insomnia forums, let's look intelligently at the horrible disease.
If you google for a case study, you will find one for a young man who rather recently died of the sporadic variant. It's a depressing look into a awful condition, but here's the kicker - it was not diagnosed until after he was dead. In fact, his family never heard him say he was having trouble sleeping.
This is because, despite the shock value of the disease, you DO sleep for most of it. You do NOT enter deep, restorative sleep. Only stage one.
But even that would not kill you like the disease does. FFI/SFI turns your brain into Swiss cheese. Early symptoms are increasing insomnia, but it quickly becomes obvious you have a major neurological disease. The misdiagnosis in the case study was chetzfield-Jacobs. No one is mistaking that for insomnia, and "I have a minor twitch" or whatever minor nothing you swear is a symptom that matches FFI, is entirely that, a minor nothing.
Prion diseases do not cause minor symptoms. FFI does not appear overnight as complete insomnia, and the physical manifestations of it mimic other MAJOR neurological disorders.
The reason you think you have FFI (SFI) is because you have run of the mill insomnia and you googled insomnia and found a wildly rare, wildly horrible disease that has insomnia amongst it's many horrible symptoms.
Now what sounds more likely - you have a astoundingly rare disease and show almost no symptoms of the Swiss cheesing of your brain .. Or you can't sleep because by now you've worked yourself up to panic attacks over your insomnia and googling nightmare diseases that you've convinced yourself you have despite your best evidence being "I am suffering from insomnia", like 40 million others will this year too. It sucks.

P.S. The hallucinations caused by FFI(SFI) are massive and involve losing all touch with reality. Seeing flickering lights when you shut your eyes is famous with stress and anxiety - both of which cause insomnia.

I pray the next poor soul thinking they have FFI will read this. Read the case studies, it isn't just "you can't sleep and that kills you" . It's a very complex disease with a lot of severe symptoms that quickly make it clearly not insomnia.