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Author Topic: Sporadic Fatal Insomnia… again  (Read 839 times)

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Offline aardvark

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Sporadic Fatal Insomnia… again
« on: November 30, 2013, 07:01:15 AM »
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!
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Offline Cuchculan

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Re: Sporadic Fatal Insomnia… again
« Reply #1 on: December 04, 2013, 06:40:50 AM »
I have suggested this in a lot of threads. There are such things as sleep clinics. Were they may keep you in for a few days. To study your sleeping, or lack of, in your case. More just a case of finding them. They are not everywhere. But there are some out there. They would be the best places to get answers. With lack of sleep, for me, the worst thing that will happen, would be waken dreams. That is when your dreams happen whilst you are awake. Thus mixing reality with dreams. To keep it simple, you can begin to see things. People have micro naps. They can last only one second or even less. As humans we need to dream. A micro nap can bring on a dream. I have seen this with my own eyes. People going for a world record. Trying to play the longest soccer match ever. After four days one of the players began dreaming. He was awake. But the dreams were creeping into his mind. He began fighting with nobody we could see. To shout and yell. This is when they cancelled the record attempt. For health reasons. He was clearly seeing things. Just watching him, showed me, what happens if you don't sleep and dream. Your sense of reality can get all messed up if things get really bad. That is why a sleep clinic, if you can find one, would be the best place to go.
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Offline Haribol2332

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Re: Sporadic Fatal Insomnia… again
« Reply #2 on: December 06, 2013, 01:14:45 AM »
The raised blood pressure is a natural symptom of any insomnia, with insomniacs being five times as likely to suffer from it.
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Offline aardvark

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Re: Sporadic Fatal Insomnia… again
« Reply #3 on: December 06, 2013, 07:13:55 AM »
My insomnia seems to be improving spontaneously: I got six hours on Monday (uninterrupted), six hours on Tuesday (including a five-hour chunk) and seven hours (in four short bursts, but it did the job) on Wednesday. Last night wasn't so good, with a few snatches of sleep adding up to four hours at the most, but that may have been due to poor sleep hygiene (I went to bed when I was tired but not yet sleepy, and in a room that was too cold).

I live in a small island country of 85,000 people and don't think we have anything as sophisticated as a sleep clinic here — I'd have to visit the UK for that. However, I had an interesting discussion with a doctor over the weekend, who said he thought I was not suffering from insomnia at all but was developing an anxiety disorder related to sleep. Although I still haven't slept brilliantly, I now believe that I can sleep, so things are a lot better than they were a week ago. In addition, my blood pressure was back to normal yesterday, at 120/80, although it's probably up a bit after last night.
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Offline aardvark

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Re: Sporadic Fatal Insomnia… again
« Reply #4 on: December 21, 2013, 08:39:17 AM »
After a fortnight of comparatively good sleep (one bad night of three hours and a couple of four hours, but mostly in the six to seven hours range, with one night of eight and a half hours) my insomnia seems to have relapsed in the last week. Last night was particularly bad: despite going to bed at 12.30am I didn't fall asleep until around 9am, when I got a couple of hours. Inevitably, thoughts of SFI are returning to my mind (despite close study of the symptoms indicating that I don't closely fit the profile). Any bright ideas from anyone before my anxiety makes my sleep even worse or non-existent?
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