Like a number of people on here, I'm suffering from severe acute (though rapidly becoming chronic) insomnia and find myself concerned at the possibility of Sporadic Fatal Insomnia. There are several reasons for this:
1 My insomnia is getting steadily worse, which is the hallmark of the disease. Last week I was averaging five hours' sleep. This week I got about four. The last couple of nights, I was down to about 90 minutes and last night's 90 minutes was a sort of twilight sleep with dreams but also some level of consciousness (again a classic symptom of advancing SFI).
2 I also have raised blood pressure, which is another early symptom: normally about 125/80, it was up to 139/92 a few weeks ago and then 150/100 yesterday. As a result, I am having an ECG at the hospital on Monday.
3 I also have a chronic stiff neck, which is another SFI marker.
4 SFI and the closely-related Fatal Familial Insomnia usually kick in in a person's late forties, with 48 being the mean age for onset. I will be 47 next month.
On the other hand, my conscious mind tells me that it cannot possibly be SFI, for a number of reasons:
1 My insomnia has a clear external trigger: where I live is very noisy. I switched from the front bedroom (facing a road where noise can continue until the early hours) to the back bedroom in mid-August, and my insomnia improved drastically. However, a hotel is being refurbished at the back of me, with loud building work beginning at 8am each day. Anticipation of being woken up by the noise has brought my insomnia back with a vengeance, and now I can sleep properly in neither bedroom. This is a classic case of learned insomnia, whereas with SFI a person who has been sleeping normally suddenly starts experiencing sleep disturbance for no obvious reason.
2 SFI is one of the rarest diseases in the world, with 16 cases reported in a population of 7,000 million. In other words, my odds of contracting it are 437,500,000-to-one against. In contrast, the odds of winning the big multi-million pound jackpot on the UK National Lottery are a mere 14,000,000-to-one. I probably have more chance of being killed by falling space debris.
3 The raised blood pressure is a natural symptom of any insomnia, with insomniacs being five times as likely to suffer from it.
4 My stiff neck dates back years, and I was receiving physiotherapy for it at the beginning of July. This isn't at all consistent with the timescale for SFI, and nor is my long-term tendency towards light and easily disturbed sleep.
5 I don't have any of the other early symptoms of SFI — I have a normal pulse rate, no palpitations and I can urinate, lacrimate, ejaculate and defecate perfectly normally.
6 SFI is a steady degenerative disease and doesn't respond to changes in environment. In other words, my changing bedroom could not have resulted in a drastic (but sadly short-term) improvement in my sleep quality. Nor could I still have the occasional good night, like eight days ago when I managed six and a half hours.
In short, what I have is simply a very bad case of learned insomnia that has got completely out of control, with my fears about SFI being the icing on a complicated cake involving overreaction to minor noises, anger at not being able to sleep on demand and frustration about past life events. But right now, I have no idea how I am going to cure it, and SFI is just another worry and frustration when I am lying awake in the dark or in fitful twilight sleep.
If anyone has any bright ideas or reassuring comments, I'm all ears!