Insomnia: It's probably not fatal

If you've never had insomnia, you might never have heard of the illness called fatal familial insomnia. If you have insomnia, however, fatal familial insomnia (FFI) is one of the first things that will come up in your paranoid searches about your condition.

FFI is rare. So rare that it affects less than one in a million people each year, and only those who happen to be carrying the disease's specific, inherited genetic mutation (which is only found in 50-ish families worldwide). However, among the unlucky few who inherit that gene, those who fall ill from it will eventually die. Inevitably. It starts with gradually worsening insomnia, progressing to a complete inability to sleep, concomitant with a whole host of horrifying neurological symptoms, eventually leading to a complete loss of cognitive function and death.

Long before I developed my own case of insomnia, I knew of FFI thanks to voracious reading and a morbid curiosity about exotic diseases. In fact, when I first acknowledged that I was suffering insomnia, I thought to myself, "Well, at least it's not fatal familial insomnia."

Or was it? Once that seed of an idea was planted, I couldn't help but worry. Wasn't there a possibility that FFI existed in my bloodline and it had just gone undetected?

On May 5, I took my third dose of mirtazapine, took 2 hours to fall asleep, and slept for a grand total of 4 hours. On May 7, I began reading all the information I could find on fatal familial insomnia. I didn't really think it ran in my family, but it never hurts to learn more, right? I knew, for example, that the usual progression of FFI meant that insomnia starts off mild but progresses to total sleeplessness by about 4 months. But how mild is mild? Does the amount of sleep per night decrease gradually until it hits zero? Or is it more fitful? Perhaps several nights in a row of no sleep, followed by a night of a little sleep? Did my sleeping patterns align in any way with those of an FFI sufferer?

I could find none of that online (even though I used my credentials as a university employee to get the full text of some scientific papers!). But what I did find was a terrifying tidbit of information. Fatal familial insomnia only runs in families, but there is another form of fatal insomnia (sporadic fatal insomnia, or SFI) that can arise spontaneously and affect anyone! SFI is even more rare than FFI – only 24 cases have been documented in history – but those were 24 people who could just as easily have been me! I know from my browser history that this freaked me the heck out, because on May 10, I visited 15 web pages about SFI before calling it quits.

Here's what I knew. There's this illness characterized by steadily worsening insomnia. Meanwhile, I'd had insomnia that was steadily worsening! This illness is untreatable even by the most powerful sleep drugs available (benzodiazepines); in fact, I'd heard that benzodiazepines have been known to make it worse. Meanwhile, I'd never taken a benzo, but the sleep aids that I had tried were not doing anything!

You know me, I'm an admitted hypochondriac. I've diagnosed myself with labyrinthitis only to realize I just needed to lay off the cough suppressants. I've wheedled my doctor into prescribing me antibiotics on the off-chance that I had whooping cough. So it's not surprising that, when faced with trouble sleeping, I immediately jumped to the worst possible conclusion and assumed I had a rare and deadly prion disease. But in this case, I wasn't alone. It seems that there comes a time in every insomniac's life when they conclude that their case of insomnia is one of the rare fatal ones.

I know this because there is a pinned post at the top of one of the more prominent insomnia forums, admonishing me for drawing that very conclusion. If you think you're the special individual who has fatal insomnia, the post goes in a rather superior tone, guess what! So does everyone else! And not a single one of them has ever come back and said that their suspicions were confirmed.

Oh, so I'm not really that unique after all? That stung a little, but it was also oddly comforting. It was unlikely that I had FFI, but even if I did, I consoled myself with the knowledge that I knew what to expect. FFI takes about 4 months before the patient cannot sleep at all. I was two months in; I only had to wait 2 more before I could either rule it out completely or come out with an I-told-you-so. So I waited. I still harbored a little niggling fear, but I tried to be rational and tamped it down.

And it wasn't long before I admitted to myself that fatal insomnia, of any sort, was probably not what I was facing. When I began to get a little panicky over the prospect, I thought back over the facts and usually found them reassuring. Here's what they were for me.

1. Fatal familial insomnia runs in families. I had no evidence that anyone in my family had ever had any kind of insomnia, let alone died from it.
   
2. Fatal insomnia is kind of a misnomer, because insomnia is just a symptom. The disease is basically your brain eating itself, and consequently comes along with other telltale signs (behavior problems, excessive sweating, jitteriness, extreme weight loss, etc.). I had none of those.
   
3. In the sporadic form of fatal insomnia, sleeplessness actually tends to appear rather late, after other symptoms. My sleeplessness came first.
   
4. Fatal insomnia usually appears without warning; the fact that my insomnia was coincident with a stressful life event was a strong indicator that it was probably just your average, run-of-the-mill, non-fatal kind.
   

If you, or someone you know, has been having trouble sleeping, and that trouble has been getting worse, I urge you to learn the lesson millions of insomniacs have learned before you: you're not going to die of insomnia. The trouble sleeping is probably getting worse because you're worrying about it, so take a few deep breaths! You're not going to die, you're not going to die!

Look at me! I've crossed that pivotal 4-month mark and then some, and my insomnia hasn't deteriorated into dementia. I'm still kicking, still getting at least some sleep, and still writing long-winded essays about my experiences. And I still have more in store, so stick around for another blog post soon!