2017-11-27 07:40:51

I know there are a lot of totally blind people who have sleep problems, specifically Non 24 sleep disorder.
I'm starting this topic in hopes that we might be able to share any suggestions for things that have helped us sleep better, longer, or at normal times.

For myself, I feel like I have tried everything under the sun at this point, from exercise, to relaxation and white noise apps, to lamps, to Hetlioz which is the only medication specifically for this issue.
Many things have worked temporarily, and the Hetlioz worked well for quite a while.
But even that has stopped helping me.

Right now, EmergenC ZZZ is the only thing that seems to work.

So, use this thread to ask questions, give advice, rage against insomnia, whatever you wish.

2017-11-27 08:07:09

I don't know if I have non-24 or whatever, I'm just sleepy all of the time tongue
I'm not completely blind though ...

Is it possible for you to schedule your life around your sleep rather than your sleep around your schedule? I know I couldn't tell my body to sleep no matter how much I wanted to. It comes and goes. Sometimes I'll go to bed around 8 PM and wake up at like 1 in the morning, other times reverse that. There was a period of insanity before this semester where I would go to bed around 8 or 9 in the morning and wake up at like 4 or 5 in the afternoon.

For example, if you have a job could you ask for the nightshift instead perhaps? Is your schedule completely random or is there some order to it like mine is?
For example, I know I'll probably sit up to like midnight today but nothing extreme. If you can figure out when you're going to sleep ahead of time you can plan accordingly.
If you're going to sleep at 5 in the afternoon and you have some homework to do (granted I don't know if you attend some educational facility or have a job) - you could say ok I'll go to bed and set an alarm for 3 in the morning and go up and do what I need to do.

That's the only advice I have. Well actually - if you need to sleep at a certain point it's better to rest rather than say screw it I'll just go up and do shit to preserve energy. It's frustrating, sure, but if you tell your body to rest at a particular time maybe you'll gain some semblence of normalcy?

Other than that, have you tried to smoke some weed to relax before you hit the hay? Like I said you may not fall asleep but at least you're preserving energy.
Honestly on second thought I don't think weed is good for preserving energy since it gets your metabolism going. It's still pretty nice though undeniably big_smile

Hope this helped.

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2017-11-27 09:03:26

Have you tried Melatonin? I grant that it's terrible for a shortened cycle, but if you have a lengthened cycle, or are in the college-student-sleeping-til-noon phase, it might be helpful. It's tricky to get the timing and dosage right, though.
Staying up is slightly more manageable with something like Modafinil. Unfortunately, in the US (I don't remember about Canada but want to think it's similar?), it's a controlled substance prescribed for Narcalepsy[sic] and people who need to control their wakefulness for their job. Also it's expensive, legally. However, Adrafinil is metabolized into Modafinil, is not controlled, and you can get it online for cheap. The only downside is "heightened liver inzymes," whatever that means, and that is mitigated by avoiding using it on a daily basis. Sleep deprivation will still catch up to you on -afinils, so absolutely do not use them (or any more common stimulants like caffeine) as a replacement for sleep.
But yeah, I found that the best way to fight non24 is to fill up your day so that you can't afford to sleep any time other than night. It still doesn't work perfectly, but it seems to help. A combination of all of these might be best, but I haven't had the opportunity to try them all at the same time.

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"If you want utopia but reality gives you Lovecraft, you don't give up, you carve your utopia out of the corpses of dead gods."
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2017-11-27 12:49:28

Currently typing this at 5:30 in the morning. As you can probably tell from that, I have sleep problems too. I'm often tired durring the day but then I either find it hard to fall asleep at night or hard to stay asleep and wake up at random times in the night, usually 5 or 5:30 but sometimes as early as 4, and most of the time I never get back to sleep so I often just brouse the forum or twitter or watch youtube or anything really. It kind of sucks though and I would kinda wanna be done with this, though in recent years i've just gotten used to it. I haven't really tried too much to help it other than meditation witch sort of works, but not always. Or maybe I just don't do it enough...

I am the blind jedi, I use the force to see. I am the only blind jedi.

2017-11-27 12:57:30

LordLundin,

I have been forced to schedule my life around the sleep disorder, because I also have epilepsy. If I don't get enough sleep, I have seizures.
So those two things combine to keep me unemployed, except when I can get work as a writer.

When this trouble started, I was finishing my undergraduate degree in Psychology, and my plans were either to get a PHD in Psychology or go to law school. The non 24 derailed every bit of that though.
I am so fortunate, because I do have family around to help me, and they are very understanding of the insanity that is my sleep schedule.

The cycle is about a month, and during that month, it circles halfway around the 24 hour clock. So at the start of the month, I might be going to sleep at midnight. By mid month, it might be six A.M. By the end of the month, it may be noon. It's crazy!

You are right though. There is no way to turn off your brain if it doesn't want to shut down.

LOL, smoking weed may be the only thing I haven't tried!

Cae-Jones,
I haven't heard of Modafinil. I'll have to ask my neurologist what he thinks about it. That's another hangup with medications. We always have to be on guard of seizures as a side effect.

I tried forcing my body to stay awake all day when I was trying to get a job. During three and a half months, I went from getting five hours of sleep, down to four, down to three, and I finally had to leave the training program when it got down to two.

2017-11-27 13:13:36

AIUI, Modafinil's only dangerous side-effect is a super rare skin condition that almost never happens. I've taken Adrafinil while on Buproprion (the latter already increasing seizure risk) with no negative side-effects, so I am pretty sure there shouldn't be any problems there, but I am not a doctor and I do not know enough about how epilepsy interacts with drugs other than Buproprion, so don't take my word for it.

看過來!
"If you want utopia but reality gives you Lovecraft, you don't give up, you carve your utopia out of the corpses of dead gods."
MaxAngor wrote:
    George... Don't do that.

2017-11-27 14:42:45

While I have a minimal amount of vision left, mostly just detection of light sources, I know that I will eventually lose that too and be totally blind. But even so, I've had sleep problems for a while now and nothing seems to help.

The last time I smoked some weed, almost 15 years ago, it did make me very sleepy, so there might be some hope there. I've avoided it so far because I used to smoke, I quit nine years ago, and I'm afraid that smoking weed might start me smoking again, or at the least give me cravings.

2017-11-27 16:23:36

Mrs. Dark suffers pretty badly from none-24. She's been on ambian for years, which does help, but has the unfortunate side affect of making her rather dopy the next morning, indeed I think both she and I probably never got out of the Colidge students sleeping till noon phase Cae mentioned (as shows the fact I'm sitting here at just after two in the afternoon in a dressing gown and fluffy pajamas having just got up at about half past twelve).

My lady is trying to get off the ambian, or at least reduce it down to a point of taking every couple of nights rather than every night, though this does mean a rather bad night awake the first night off (like last night).

The major problem is that when my lady is awake  can get into a pretty bad fit of anxiety, which isnt' good.

For me, i do have a sleep issue but it's not quite as serious, or at least usually after it's messed around for a couple of days it stabelizes, also I am fortunate in that I don't tend to worry if I don't sleep, mostly if I go to sleep and then wake up I just say "bugger it" and get up and get stuff done at whatever o.clock in the morning, this is because I remember when I had really! bad nights, and simply not being able to sleep is quite a relief compared to that big_smile.

Some tablets I'm recently taking  for other reasons have been pretty good, though I have had the odd side effect  crashing at about nine pm then waking about three or four and grabbing some coffee, still at least I can spend some time doing stuff, indeed a lot of my phd thesis was written at about that time, since even when on a semi normal schedule I'm more likely to get up and work (especially on writing), in the morning than later in the day. Fortunately, both myself and Mrs. Dark are pretty much on our own schedule, so it really doesn't matter what we do when, albeit we try! at least to go to bed at a semi logical time if we can, since when we are! required to do  it is inconvenient if we're completely shattered.

As to things that help, Cannabis I'd avoid, since every time I've had some, it's left me with what my friend refers to as a "stoned over" the next day.
this is like a hangover, but basically involves 24 hours of feeling torpid and knocked out, which has it's own crazy affect on the sleep shedule.

Ambian for me is a bit too! strong, or at least when I've taken it I've been smashed out for about fourteen hours, so usually it's wiser for me to take a less serious sleeping tablet and hopefully wake up correctly (this doesn't always work).

coco and extensive cuddling before sleep both actually do! help believe it or not big_smile.

With our dreaming and singing, Ceaseless and sorrowless we! The glory about us clinging Of the glorious futures we see,
Our souls with high music ringing; O men! It must ever be
That we dwell in our dreaming and singing, A little apart from ye. (Arthur O'Shaughnessy 1873.)

2017-11-27 17:40:57

Marijuana works really well, but you may break laws using it, I get 8 hours solid every day using that before I sleep. I tried Melatonin  but I couldn't get over the sleepy feelings in the morning part. I mean why would you choose that medication when you have another one that doesn't make you feel like a drone for 45 minutes when you get up? I guess because of laws and you not wanting to break any.

2017-11-27 17:58:04

I used to suffer from this sort of thing, but not so much any more. The irony is I suffered from ever-changing sleep patterns when I had some sight, and now I'm pretty much total and I sleep fine. I heard somewhere that teens and those in their early twenties are predisposed to staying up late, that was certainly true in my case. All through school/college  I would stay up half the night, then have a couple of hours sleep in the early evening if needed. My sleep pattern continued to be at odds with the normal cycle of day and night until I stopped the caffeine and nicoteine. After quitting stimulantts, I sleep like a log. The only exception to this is if something naturally stimulates me at night such as being deeply involved in something like music or a PC problem or a good game, then I can slip into a late night routine quite easily. So my advice would be: no artificial stimulants at all, and try to avoid natural stimulants a couple of hours before bedtime.

2017-11-27 18:18:56

When I first started having sleep problems, it was while I still could see but was losing my vision, my doctor prescribed an anti anxiety medication that helped, but has since stopped working, and nothing else I've tried, both over the counter and prescribed hasn't had any effect on me. Very frustrating.

@Dark

Have you tried cutting the Ambien tablets in half to see if half a dose might work but not knock you out for so long?

Me? I'd be in hog heaven if Ambien knocked me out for that long, at this point I'd take sleeping longer hours over having difficulty getting any sleep at all.

2017-11-27 18:19:10

Well Dark just as you don't chug a bottle of vodka to loosen up the nerves before a date neither do you smoke 4 joints before bed either. Both of these things have their opposite effect. Well the extra vodka might loosen you up a bit more which probably is a really really bad thing for a date, but the 4 joints are going to get you high as a kite which isn't really good for sleeping.

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2017-11-27 18:24:20 (edited by musicalman 2017-11-27 18:27:38)

I have sleep issues too. Mine are kinda predictable to a point. I can normally keep a good 24 hour schedule for a while, but either one or two things will inevitably happen: First, I'll either gradually start drifting as the weeks go by and stay up later and later, or second, something will excite me and I will stay up super late one night, and that will kick-start my sleep schedule a few hours later than it was previously, and before long I'm nocturnal. The only way I've successfully been able to fix this is letting it wrap around an entire 24-hour cycle. I haven't found any effective methods for forcing myself to stick to a consistent bedtime, because I would be so anxious over it that I wouldn't have any fun at night, and probably wouldn't get as much sleep as I would if I let myself relax. Lol

Sometimes my sleep patterns will actually get stuck on a 24 hour schedule for anywhere from a few weeks to a few months. This is good if it happens to be at decent times, but other times it gets stuck in this really broken routine. Go to bed at 8 in the morning and wake up at 4 in the evening, for example. I'm just coming off of a few weeks of that, actually. So I have to fight with that too.

Occasionally I'll think my sleep schedule is on the mend, but I'll unexpectedly either get tired too quickly, or not sleep long enough or whatever, and before I know it my schedule is close to where it was before, meaning I have to basically try again. It gets annoying, and I won't lye, in college I didn't cope with it well and would record lectures simply because I could not stay awake in class.

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2017-11-27 18:56:29

@Orco, unfortunately my lady's ambian aren't really possible to cut in half owing to them being fairly small to begin with, but I've found a common sleeping tablet called sleep eeze that works on the occasions I need it, which I try to minimize, hell most of the time if I'm stuck on the 9-4 schedule it's not a major problem anyway.

@Lord Lundin, firstly I do not and will never smoke Cannabis, as a singer it is too risky for my throat and lungs.  always taken it desolved in cream or butter with friends in either coffee or coco, and generally because I do it fairly rarely, the affect is pretty large even if I only use a small amount.
it's a nice affect and something I enjoy when I've had it, and likely will again (my last indulgence was in 15), but probably wouldn't do on a regular, or even semi regular basis because of the stoned over affect I mentioned.

With our dreaming and singing, Ceaseless and sorrowless we! The glory about us clinging Of the glorious futures we see,
Our souls with high music ringing; O men! It must ever be
That we dwell in our dreaming and singing, A little apart from ye. (Arthur O'Shaughnessy 1873.)

2017-11-27 23:20:39

Oh yeah. Most of us struggle with this stuff.
Of course it's the best thing to go to bed at 11-12 in the evening and actually sleep untill 7-8 in the morning and while it works, I totally enjoy this. Unfortunately there are some factors completely and quite fast capable of messing the structure up.
First as light is no boss for me, so it has 0 effect.
Second is weather sinsitivity, so rain turns me into a zombie - no really, it's basically almost impossible to stay focused and even keep the body in the upwards position at times. Bigger overall changes in weather do about the same, so yeah, weather sensitivity isn't just some kind of bullshit, but a real phenomenon.
Third factor is excitement and agitation when prepairing and waiting for something. For example I had to deal with it this very month. While waiting for my Roland Tr-08 drum machine to arrive, I had some troubles with its user manual - fortunately now solved - and so quite usually for sutch situations, my mind gets kind of stuck on the subject in question and it's not all that easy to get away from it. So mostly the thing in question is the accessibility of some new machine. Of course, when the thing is in my hands, it doesn't turn out to be all that dreadful, but still the anxiety persists. Probably here the main factor is the intensity of it. So at some point it crosses over from simply buggering the mind to influensing the whole body and when it happens, it gets almost impossible to sleep or to fall asleep more exactly. So I can put my body to bed and try to give it an order to sleep, but as the mind is buzzing with the topic in question, it simply doesn't work out. And so I stay in bed getting more and more angry at myself for not being able to control this untill at some point exaustion just takes over and shuts the restless mind and body down for some time and of course any kind of schedule has gone to space at that point.
So yeah, a bit longwinded explanation, but probably people in here can get most of it.

2017-11-27 23:28:08

Oh ... yeah ... ugg. As anyone living in northern Europe knows we live in near the constant state of autumn. Minters are usually very mild here these days. It just rains and rains and rains and it's bitter wet and cold and the only thing I want to do is to pull the blanket over my head and go back to sleep.

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2017-11-28 01:03:06

I'm, Nocturnus!  I'm the nightmare of all things sleep!  It eludes and evades me because I have nothing good to offer in return! During the night, at least.
No, really!  I know you've heard all humans are day time creatures!  Not I!  I've tried, and tried, and tried again!  Alcohol?  Keeps me up at night.  Melatonin?  Makes me fuzzy and depressed.  Weed?  Gave me the munchies and made me eat like a goat and a pig and a half.  Benadryl?  Put me into a semiconscious state in which I had nightmares about audio games that haven't even been made. No, that's not a joke...  I know you're laughing, but that's not a joke.
Warm milk before bed time?  Hot drinks in general?  Heating pads? Fans?  Air conditioning!  Soothing sounds!  Reading books!  Getting bored!  So bored you're skull is hurting because of the depth of it!  None of them work!  At night.  I can easily, easily fall asleep by the dawn's early light.  So, what do I recommend?  The sun, of course.  It'll threaten to bake you so sensless all you'll want to do is sleep until its ultraviolet rays have come and gone!  By the light of the moon you'll do much better and be overall more productive, except if you have a job, a wife, children, life, in general, which revolves around normal people, in a normal world... I think I'll try and go to bed now.  It's 6 in the evening; what do you think will happen?

When life gives you oranges, demand lemons since everyone else is obviously getting them.

2017-11-28 02:07:58

Although I don't sing like Dark does, his reason for avoiding smoking weed is a good one and another reason why I avoid it now. But unlike dark, I can't eat it, or more accurately, eating it has no effect on me.

Years ago my brother and I were coming home from a fishing trip. We had a bud with us that we were going to smoke, but it got wet, so I was holding it in front of the car's air conditioning to dry it out. Then my brother tells me I have to get rid of the bud because we are being pulled over. I grabbed my Coke, popped the bud in my mouth and swallowed it like a big pill, stems, seeds, and all. When I told my brother how I got rid of it so he wouldn't worry about it while we were dealing with the cops, he said that that would get me very high, but it never did. As far as I could tell, it had zero effect on me. But smoking it does get me high, strange.

2017-11-28 06:00:59

i haven't tried weed so far, although as of canada day 2018 it will be legal here in canada, and summer's usually when my sleep problems really get bad. Who knows what'll happen though with this new legality... Having said that though i haven't even tried melitonin yet, that may work, as my problems are usually some form of going to bed at a reasonable time (durring the school year) and waking up some time durring the night, getting bored and not being able to fall asleep. And isn't melitonin supposed to help with staying asleep?

I am the blind jedi, I use the force to see. I am the only blind jedi.

2017-11-28 09:28:21

Melatonin is not actually a sleeping pill; it's a chemical your body produces on its own throughout the day as necessary as the result of different environmental lighting, mostly sun light or lack there of.  It doesn't actually help your body stay asleep but rather tells it that it's time to get to sleep.
the greatest misconception with melatonin is that you can up the dose and get greater results.  While that might work for a time, it may also cause harmful side effects along the way; most common and least harmful I'd say is the possibility of it changing the color of your urine.  If you have issues with melatonin regulation then it certainly does make for a good substitution provided you take it within reasonable moderation; otherwise it's just a waste of money and you're better off consulting a sleep therapist.

When life gives you oranges, demand lemons since everyone else is obviously getting them.

2017-11-28 10:21:44

Yeah. I wouldn't go over 10mg of melatonin / night, tops. I found that less than 10 hardly does anything for me, and it doesn't do much for maintaining sleep, just messing with the internal start time. If my body is just that determined to be awake, Melatonin is more a depressant. So, again, I only recommend it for getting to sleep earlier, and stress that it's difficult to predict exactly how long it will take to act. For me, 2-3 hours before bed seems to work best, but my problem is usually a shortened cycle, so I only use it when I can't get to sleep before midnight or so.

看過來!
"If you want utopia but reality gives you Lovecraft, you don't give up, you carve your utopia out of the corpses of dead gods."
MaxAngor wrote:
    George... Don't do that.

2017-11-28 14:02:45

My lady has tried melatonin and it doesn't exactly work for her, also since the sun in the northern parts of Britain is  about as regular an influence on everyday life as it is on Mars, it's less of a deal for me, particularly given cold and a desire to highbernate.
Still having a wife  probably is on a more messed up schedule than me is sort of nice, at one point we  about two nights up reading through the entire hunger games trilogy together and drinking interesting coco big_smile.

Ironically for me the anti depressants I've been taking recently which boost seratonine levels have helped at least with sleeping a regular amount, even if not at a regular time.

As to Cannabis, you can't just munch it to get the affect because the tcp, the  chemical that produces the high won't be released by basic stomach acid. You need to use a lipid substance to filter the tcp from the weed itself if you want to eat it, hence the logic behind the hole hash brownies thing.

Usually my friend and I use cream or butter and add it to coffee, which is sort of amusing given that he's a huge Dune fan and so we can have our own coffee with melange, indeed we've tended to refer to cannabis as melange ourselves in conversation big_smile.

I like the affects far more than those of alcohol, which I never do much, but as I said it's not something I'd do regularly, or when I am not in a sufficiently good mental state to take the slight tendency to anxiety that often follows.

i particularly like Cannabis for it's affect on the senses, it's lovely to listen  to complex, baroque music such as Bach's brandenburg concerto while under the influence.

Unfortunately, that sensory input stimulation also has the rather bad affect of causing the munchies, especially with any food thad has  lot of taste or texture to it.
The worst experience I had of this was after myself and several friends all handed in  our undergraduate disertations together, and after being awake for probably a solid 24 hours we all endulged in the coffee with melange. Unfortunately, I bought along as a treat several bags of  chocolate covered coffee beans, which were absolutely lethal in terms of the munchies owing to the massive sensory hit, also really bad given that then you had  completely exhausted, highly over cafinated students sitting around in a  haze for about twelve solid hours, having a very slow conversation about why pink is a more evil colour than yellow, and who could win in a fight between Samas Aran of the Metroid  and Ripley from the Alien films big_smile.

With our dreaming and singing, Ceaseless and sorrowless we! The glory about us clinging Of the glorious futures we see,
Our souls with high music ringing; O men! It must ever be
That we dwell in our dreaming and singing, A little apart from ye. (Arthur O'Shaughnessy 1873.)

2017-11-28 14:10:34

Oh Dark that sounds like a very ... ahem ... interesting debate. Not even when done with your assignments could you stop arguing.
The only good thing with alcohol is that it's like you get the biggest adult candyshop. You're young and you have all these softdrinks and fizzy drinks and whatnot then you turn 18, or 21 depending on where you live, and you realize holy shit ... I've been missing out.

As for the discussion about Melatonin, as people already have pointed out it's a natural substance your body produces. If your body doesn't want to go to sleep, Melatonin won't help you what so ever. In order for it to be effective you should take it a while before bed then just wind down. If your brain is going 100 miles per hour it won't work.

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2017-11-28 14:51:57

Well in Britain at least people are a little less nuts about "enforcing the strict no alcohol before your eighteen!" it's even legal for a 16 year old to order a single measure of alcohol with their meal in a restaurant.

My parents regularly gave me a glass of wine or something on special occasions, and  think I was  fourteen when my mum bought me a bottle of  balies cream licure as a present, albeit  I only had a measure of it on special occasions.
I remember this because shortly after that I went to disney in the states and wasn't allowed to drink none alcoholic wine big_smile.

That being said I've never been quite as nuts on the hole alcohol thing, indeed my lady, who likes a glass of  of an evening probably drinks slightly more than I do.

i tend to find I get to a cutoff point when I physically don't want anymore to drink, which is why i've never had a hang over, though I will admit I do like a  glass of good dark rum or a decent wisky on occasion, and I am partial to the odd cocktail, albeit not too often, indeede when in 2009 I had to do a close to 18 month abstenance from alcohol (and indeed cannabis as well), I honestly didn't miss it.

Now giving up coffee, that! would be hard big_smile.

Btw, one awesome game to play while stoned (or indeed when not stoned if you have random enough friends), is word unassociation.

You've heard of the old word association game where you have to say a word, then the next person says a  that leads on from yours with a common theme? (if not check out This explanation on wikipedia well unassociation is like that accept the opposite.
Your words have to have nothing in common with each other. If you say something that is blatantly a commonality, your instantly out, eg, if player one said iron and player two said steel.

if however someone spots a pattern in your answers, eg, two many animals, too many food types, too many political or medical terms, you get a penalty, three penalties and your also out, which also  necessitates players  remember what answer's you've given in the past.

It's a game that sort of came about by chance when I was 18 or so, then my friends and I finalised the rules somewhat later, and it's really! awesome to play while stoned, and pretty good fun when your not stoned if you have three or four sufficiently random friends.

With our dreaming and singing, Ceaseless and sorrowless we! The glory about us clinging Of the glorious futures we see,
Our souls with high music ringing; O men! It must ever be
That we dwell in our dreaming and singing, A little apart from ye. (Arthur O'Shaughnessy 1873.)

2017-11-29 02:34:01

I don't get hangovers because water!  Lots and lots and lots of water!  Water water all the time!  I drink water more than any other substance; maybe this is why I can't sleep... Everything just goes right through me!  :d

When life gives you oranges, demand lemons since everyone else is obviously getting them.