3 weeks Exiled from Sleep. Is there hope?

Signs and symptoms
1

I want to feel like I could get better. I really do. But when you take 7-8 hours on average just to fall asleep, and when you often don't sleep at all, you tend to infer that something is very wrong; and that it is not going to get better any time soon. Doom is a word that I hadn't fully understood, until recently.

For me, the sensation of not being able to sleep isn't necessarily anxiety-ridden. As a matter of fact, I often feel calm and relaxed in my bed as I wait for sleep. But despite this, my brain will just not allow me to doze off. You know how falling asleep is a sinking feeling? Well my brain won't allow me to sink: I float above sleep in spite of sleep hygiene, severe fatigue, sleeping pills, and a warm, comfortable bed.

It feels like a brain thing. Like it feels like my brain is not functioning properly for whatever reason. In other words, I strongly suspect there is an underlying medical problem. But I have had a full-panel blood test done (although it was 2 weeks ago) and everything came out normal, including my thyroid related tests.

Everyone is trying to convince me that I have developed a sudden and severe insomnia because of some underlying psychological problem; however, before this bout of insomnia I had never had insomnia once in my life (unless you count not being able to sleep for a couple of hours every blue moon). Furthermore, nothing very stressful in my life can be identified as having caused this.

Before this I was fine. Although, curiously enough, I had had the opposite problem right before the onset of this insomnia, I had been sleeping too much. I fell asleep easily. I had been waking up feeling fatigued and unrefreshed. Somehow I feel like these earlier symptoms share the same underlying cause as my current insomnia symptoms.

Ok so but yeah. Before 9 hours of sleep was my norm, but now I consider 4 hours a good night's rest. 

Honestly I don't know what to do. Everything else in my life was going great, which is rare as you might know. I had (and still do have) a kind and loving girlfriend. I had a good job (which I had to quit because of the insomnia thing). And I had a purpose (to earn money so that I could live together with my girlfriend). More than anything, I want to get better so I could get back to living my life and being who I am. 

But I'm at a loss. Ambien doesn't work. Xanax doesn't work. Trazodone doesn't work. Meditation doesn't work. Restricting time in bed doesn't work. Not looking at screens before bed doesn't work. Going to bed at the same time and getting out of bed at the same time every day/night doesn't work.

I've began to fear the worst. I've done my research and SFI is the only thing that fits: I have muscle twitches, extreme insomnia which doesn't get better w drugs, and muscle weakness. That being said, I'm more than willing to accept a different diagnosis if anyone could come up w one. 

My other symptoms: muscle weakness, balance issues, extreme fatigue (worsens considerably when I don't eat for a couple of hours), panic attacks, and, most curious of all, an inability to feel tired. I feel fatigued but not tired, in other words. Like I can't remember the last time I felt tired. I feel like I have no energy, but my body doesn't feel like sleeping.

 

2

I have had this problem on going since august. All doctors tell me is its anxiety, yet im not anxious. Bloods also csme back fine. I feel floaty, have 0 concerntration, strange sensations in my head and memory is terrible. Im lucky to get 2 hours a night. my vision has also decreased majorly, i look exhausted but i just can not drop

3

Shane, I'm wondering who made this post for you? I'm a former neuro nu rse and can confirm that: a) the disease you mention is vanishingly rare, with only a few hundred cases being recorded in the entire world; and b) the insomnia phase only sets in after severe neurological damage. If you had it, and had reached the insomnia stage, you would no longer be able to type and probably not speak either.

The symptoms you describe all fit perfectly with extreme tiredness - which your body will feel even if you don't - and anxiety. Panic attacks are a symptom of anxiety. Perfectly understandable anxiety in your case, but anxiety nonetheless. You don't need to add to that by looking for obscure diagnoses that don't really even fit your symptoms. You say you're not at all anxious, but I can't help feeling that the very fact you've started researching this illness while managing not to notice how rare it is and at what stage insomnia sets in, does indicate some underlying anxiety in you.

I feel desperately sorry for you, but can also confirm that you're wrong. Insomnia can suddenly come out of the blue in someone who's never suffered from it before. A few years ago, one of my friends suddenly started being unable to fall asleep in her mid-50s. This went on for several months, while she tried every possible remedy, like you. What finally appeared to work for her was acupuncture. However, I have to say I suspect it was just that the thing had run its course, and she probably would have started sleeping again anyway.

This isn't in any way an attack. In fact I can totally sympathise. I was always a poor sleeper myself, even from childhood, and a year or so of working an impossible shift system in my mid-20s just about wrecked my already poor sleep pattern for the rest of my working life.

I can't suggest a magic bullet to make you start sleeping again. As I'm sure you know, the Xanax and Trazodone may have made things worse if you took them for more than a few weeks (especially the Xanax).

I'm afraid you may just have to wait this one out.

4

Wow. Finally someone with the same exact issue. I swear this is my writing. I can't for the life of me figure out what happened to my sleep. I have been to several doctors now and they don't even understand what I'm trying to explain to them. Even a sleep specialist looked at me and said that's impossible everybody sleeps. They want to say it's a sleep hygeine issue. What does sleep hygeine have to do with a brain that is beyond exhausted while lying in a nice comfortable bed in a relaxed state.....but sleep will not come? I feel as if something broke in my brain. How can such a natural human action just vanish away? This does not feel like the insomnia I read about. I walk around feeling like complete garbage so tired my brain hurts. I have everything going for me but everyone is treating me like I'm weak and want to lose my family and job. Believe me if I had any control over it why would I chose not to sleep.

5

Rey, we none of us have control over the unconscious mind. That might be a more fruitful topic to research. And I'm glad to hear that you posted all of this. Really, you couldn't possibly have the disease you dread if you can put together coherent posts like yours.

I don't want to insult your intelligence, but have you googled sleep state misperception? This was probably what was in the sleep specialist's mind. I mention this because in my own insomniac days (which incidentally ended as soon as I retired from paid employment) I would often think I'd only slept for an hour or so, while others who observed me confirmed I was getting quite a bit more.

This isn't me saying I don't believe a word of your story. You clearly are quite seriously sleep-deprived. However, the situation might not be as desperate as you think.

6

I feel you and my heart goes out to you. That is awful. I hope you and I receive some miracle and soon.

7

It's such a relief to hear that someone else is going through this unnamed thing. At the same time, I wouldn't have wished this upon anyone, so it's also hard to hear that someone else has to go through this pain. 

"I have been to several doctors now and they don't even understand what I'm trying to explain to them."

Yeah, right? doctors just dismiss it as anxiety. But here's the thing--and I saw that you noted something to this effect--while this does make me anxious, it just is unfeasible to say that I always go to bed anxious; in fact most of the time I go to bed with an exhausted body and cannot help but feel relaxed. And yet when I go to bed relaxed I still cannot sleep. I enter a half-dream state at times, but just when I'm about to sink past that I come back up into wakefulness. Sometimes this coming-back-up is attended by a muscle twitch. This happens several times and before you know it is hours later. This in turn makes me anxious. So but then when I express this anxiety people assume my anxiety actually caused all this! It was merely a symptom; however, as you know. There is a difference.

"I have everything going for me but everyone is treating me like I'm weak and want to lose my family and job. Believe me if I had any control over it why would I chose not to sleep."

Too relatable. It hurts how relatable this is. I had to quit my job because of this thing. Oftentimes, it feels as though my family members blame me, as if it is in my control. "If you just stopped worrying you would sleep. If you thought more positively you would sleep." But the thing is that worry and negative thinking are an absolutely natural reaction to such severe insomnia.

This thing is ugly, Rey, I have to say. In a way I feel weaker than ever considering that I can't do much; but then again I also feel stronger for being able even to endure this. How long has this thing been affecting you?

 

8

First of all thank you for taking an interest in me and trying to help. I've seen you post in sleep problems before and you seem like a kind caring person. I respect you. Here are some thoughts on your reply:

"the insomnia phase only sets in after severe neurological damage."

From what I have read this is not true. In some cases it is true, but I read about a couple of cases in which the insomnia came first. Indeed on most websites which mention FFI or SFI they note that the insomnia stage comes before the dementia.

"You say you're not at all anxious, but I can't help feeling that the very fact you've started researching this illness while managing not to notice how rare it is and at what stage insomnia sets in, does indicate some underlying anxiety in you."

True. I am anxious. But I'm not anxious enough to be up every night w/o fail for at least 6 hours. Oftentimes I go to bed relaxed and still cannot sleep--sometimes for the whole night. This in turn makes me anxious. But it is a symptom and not a cause. 

"A few years ago, one of my friends suddenly started being unable to fall asleep in her mid-50s. This went on for several months, while she tried every possible remedy, like you. What finally appeared to work for her was acupuncture"

I could sympathize with your friend then and am sorry she had to go through that. I'm glad she got better. Even though you don't think the acupuncture was the cause of her recovery I am nonetheless willing to try it.

"This isn't in any way an attack. In fact I can totally sympathise. I was always a poor sleeper myself, even from childhood, and a year or so of working an impossible shift system in my mid-20s just about wrecked my already poor sleep pattern for the rest of my working life."

I could tell your intentions are good and you strike me as a kind person. It sounds like you have known the pain of insomnia for a long time. My heart goes out to you.

Thank you for this thoughtful reply smile

9

Hi Shane,

I realise I had a "senior moment" and mentioned sleep state misperception in a post addressed to rey instead of you - although it's applicable to both.

I'd strongly urge you to consider this possibility. When I was going through what felt like prolonged periods of insomnia I actually found it reassuring to hear that I'd been sleeping more than I thought I had. I'm not trying to suggest you're actually getting seven hours' sleep, just that you're possibly getting a bit more than you thought, as was the case for me.

Concerning acupuncture, I should add that it was only towards the end of a six-month course of regular treatments that my friend started sleeping normally again. There is another caveat. I don't know which country you're in, but in some countries (including the UK last time I looked) there's not much regulation of acupuncturists. The main danger of this is that you'll pay through the nose for useless treatments, but there have been accounts of UK acupuncturists using unsterilised needles or even going too deep and causing nerve damage. Like my friend, I live in a country where only fully-qualified doctors are allowed to practise acupuncture. You might want to check the current situation in your country.

I know exactly what you mean about the anxiety only being around your ability to sleep, but this is exactly the problem! However calm a state you get yourself into before you go to bed, your unconscious will inevitably start playing with the fear of insomnia, regardless of what you want. The unconscious mind is a powerful force, and not always a benevolent one, I'm afraid.

As to your conviction about your possible diagnosis, I can only say hang in there. This may sound harsh, but if you've researched it sufficiently you will know that if this is indeed what you have, then you'll know you don't have much time left. Most authorities insist that insomnia has to be preceded, or at least accompanied, by ataxia and severe cognitive decline, so once again I can't see how you can possibly have it. However, they are broadly in agreement as to the speed of progress. I can only say that if you haven't experienced any significant decline after three months - apart from the inevitable, and reversible, brain-fog brought on by lack of sleep - then you can be reassured that you don't have it.

10

Thanks for your comment.  Honestly, I could care less how much I slept. I judge by how I feel during the day....and well its horrible. I do not know how I can live like this. There has to be better research out there or more scientific knowledge out there. So far not even sleep specialists know anything about it. I would think that by 2018 somebody would have studied how sleep works in the brain etc. my poor kids. I am so desperate right now and feeling so sick and tired from this. everyday is like a nightmare that wont end.  I cant even crack a smile anymore.

11

shane5r130

I came along this post on another sleepless night and I am glad I found it. I am going through the exact hell at this very moment. I've had very little to no sleep now for about two weeks. Most nights I'm lucky to get at least 2. I agree that it feels like something is broken in my brain as I too just can't sink into sleep no matter how tired I am. Sleeping pills only worked the first few days. Also believe I might have SFI as I have pretty much all the symptoms including muscle twitches and small pupils. It will be hard to get this checked out because most doctors will think I am a hypochondriac because the disease is so rare. Has your situation improved. I do hope so. This thing that we are living through is horrible and the misery can only be understood by those who have gone through it.

12

How are u doing now

13

Hey has your condition improved?