Ongoing insomnia, convinced it's fatal

I don't think this is an extreme post....I understand totally.  And I think you explained what is happening to you very well.  It is very hard to put this into words.

I start to fall asleep and then something jolts me like...a panic that it is "wrong" to fall asleep.  I also have trouble with the strongest drugs...getting and staying asleep.

So I have resorted to the internet to find a cure.  

I started exercising a week ago.  I go to a gym (because for some reason I can not take a walk without legs aching...locking up...etc).  I do light weights on resistence machines.

I do take Ramelton and 1/2 of doxy (over the counter sleep aide) and I have been falling asleep within 20 minutes.  And I still wake after the first hour because I do believe my brain is trained to wake.  But, the last 2 nights...after that first hour I am sleeping more than 2 hours at a time and this a.m. I slept from 5:30 a.m. to 9:30 and I was shocked.

Exercise I truly believe is a big component to this change in my pattern.

Can you exercise (at least) give it a try?

Hi Helena,

First of all - you're not going to die. People don't die from lack of sleep.

On the other hand, the exhaustion from prolonged sleeplessness is so awful, it makes you feel as if you're going to die. I know all about that, as I was a very poor sleeper for most of my life, starting in early childhood and continuing till I retired at 66. I still have the occasional problem now, particularly on the night before a journey or an important meeting.

From your description it's immediately clear that you're sleeping a bit, even though it doesn't feel as if it's enough for you.

You've clearly got yourself into a bind where you're so anxious when you go to bed that you can't get to sleep, and the lack of sleep makes you even more anxious the next night. I know all about that one from personal experience too! It's nothing to do with the hypothalamus.

You seem to have seen a doctor if you've been taking zopiclone and mirtazapine. (At least I hope you have and didn't get the pills off the internet.) Have you asked to be referred to the sleep clinic? This would be a way of establishing just how much sleep you are getting, and in which phases.

A very interesting character called bemmeh (I think) has recently started posting on these boards, and I hope he'll come in on this one, as I think he could give you some useful advice. He too has had a lifelong sleep problem but has learned how to manage it. He's already authorised me by private message to quote him wherever necessary, so here goes:

Partial quote from bemmeh:

...The moment I stopped struggling against insomnia it simply started going away, though not suddenly. It took quite a while. But the improvement was real from the start. Insomnia is not a thing in itself. The ability to sleep is so strong among us, humans or animals in general, that it is almost impossible to seriously alter it. Insomnia in us humans appears when we TRY (and therefore struggle) to sleep. You just need to stop doing all the things you are doing FOR sleeping and let your body and mind do whatever they want - if you sleep it's OK but if you don't, that's OK too (everybody has bad sleep for all kinds of reasons once in a while). When sleep time comes just go to bed, close your eyes, and rest. Don't TRY to sleep, as you are used to do. Just rest! If sleep comes that's OK, if it doesn't that's OK too, you haven't been very successful in getting the amount and quality of sleep you have desired anyway - that's why you call yourself an insomniac. So why keep on trying/desiring? Just let it go. Accept your reality and move on to the things in life you can control over. Sleep is not something we can control. You just need to trust your body and mind for it and stop trying to do anything whatsoever for it. Good luck!

End quote.

I'm experiencing similar symptoms. It takes me three hours to fall asleep. During that time period I'm jolted out of bed

and have panic like attacks. The above comment about letting go is critical. We have to stop caring so much about perfect sleep.

Did you have a traumatic event that triggered your sleep issues? I know I did and it didn't help. Definitely check your cortisol levels and other hormones.

If you have chronic insomnia, your cortisol will be up by default.

I believe there is some classical conditioning involved. We psyche ourselves out.

Exercise in the morning definitely helps, but nothing too strenuou

s. Maybe hiking, or biking.

Getting up earlier too helps to reset your circadian rhythms.

From my experience my fear of not sleeping was initially caused by stress. I had a high pressure job and I had to be on my A game every moment. I couldn't afford a bad night.

I recommend meeting with a sleep specialist before a sleep clinic. The sleep clinic is not going to be that useful if you don't sleep. Also google psycho physiological insomnia.

That is what I am diagnosed with along hormonal imbalances. Be easy on the sleep meds if you can. A few days without them might help surprisingly.

Thank you everybody for your speedy replies. Misssy2, I'm glad you can understand where I'm coming from. I've been exercising quite a lot - my parents are making me do a long walk with them daily in the hope that it will help a bit. I also swim weekly. Lily, thank you so much for the reassurance. It's definitely a state I've got myself into whereby I subconsciously associate anything to do with sleeping, drowsiness or 'drifting off' with the need to stay awake, if that makes sense. Yes I've seen a couple of Doctors who prescribed the drugs. I haven't yet asked to be referred to a sleep clinic, I'm guessing they'll be reluctant to do so since the nearest ones to me only deal with sleep apnoea and not insomnia. Bemmeh's advice is useful, I will concentrate on just resting rather than sleeping. It's just so horrible as I used to love sleeping so much, I'd sleep round the clock if my parents would let me. Now I'm awake all night with what feels like two parts of my brain fighting with one another - one part that's desperate to sleep and the other that I've trained to keep me awake. In my head I've just got it that I'm a unique case - 'the girl who trained her brain not to sleep and died as a result.' I sincerely hope it's not possible to actually do this, but night after night of being jolted back to conciousness convinces me that it is.

Hi Helena, I feel for you because I have similar problems. I've read all the posts and have decided on a 10 step plan: 1. Exercise every day, even when you don't feel up to it. 2. cut caffeine 3. Be active (someone mentioned that) -see friends, do things you like doing - you'll feel horrible but still go and do them 4. Have a calm down routine at night including cut out all devices after 9 pm, dim the lights, read a book under 1 light at same time each night  5. go to bed when tired, not according to time 6. Listen to soft music/meditation in bed when you relax your body (especailly your tense face) 7. at the first sign of sleepiness, turn if off (some kindle audible books you can set to turn off by itself after an hour or so. 8. 'rest ' to fall asleep - not try to sleep (according to someone on this forum) 9. If after 1/2 hour to 40 minutes you can't fall asleep or the self-waking mechanism wakes you up, get up and go out of your room. 10 Repeat step 4 to 8 .

Repeat these steps until you finally sleep - then get up at same time every morning. Don't sleep in. Do things in the day - don't lull around at home even though you feel tired. Keep this rythmn. Soon you'll break the bad experience from your conscious and subconscious mind and will be able to sleep and function like a 'normal' human being. Try the above.

Oh I've forgotten to say: cut all medicines. They will only ruin your own body to learn to sleep again.