Old 08-27-2017, 07:48 AM #1
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Default What is your most usual Sleep Disorder?

When it comes to Sleep disorder, I can firmly say that I have already covered almost all of the subject except the Apnae as my dad has, at least not yet. But the weirdest one would be the Circadian Rhythm Disorder that I falling in to the category of the Non 24 Sleep Disorder. (AKA Free-running, Non-entrained, Hypernychthemeral) As you can guess I'm not sight blind since I can be here, but my internal clock aka circadian clock is so out of sync I'm blind to the day/night in the 24 hour rules of light interpretation. While other people get sleepy at night with melatonin secretions and waking up during day with cortisol secretion and feeling awake my doesn't . Every day my day/night isn't in the rule of 24 hours, another word my clock actually has more than 25 hour per day and every few days it chance to even more wider range stretching or even shrunken times. I can't fight the over high dosed of melatonin that decided my time of sleep and my cortisol decide when to wake me up every day which many times can be very different than another . In result I could be awake after 3-4 hours of sleep feeling like it's the next day , yet once in a month i might suddenly going in dead sleep 18-20 hours for no reason, or crazier is not be able to sleep at all for 2 days yet didn't feel that any different than going to sleep everyday. My cycle of sleeps has been in non 24 for so many years I'm used to it and so as my love one and people who knows me well. I adjusted any works or eating schedule around it also ( I imagine that it's kinda like living in out of space ) The legally official diagnose are very difficult do to timing schedules so it has been many years that I haven't yet complete the progresses. Since to be honest I don't actually enjoy the idea of being in a category of a blind person according to the non-24 rules so I don't mind stretching the process a bit longer (perhaps a lot longer) cause I still like being legally not blind.

What's yours weirdest and most usual sleep disorder you've ever experienced it or have?

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Old 08-30-2017, 08:00 AM #2
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Default Re: What is your most usual Sleep Disorder?

Sleep has always been a huge issue for me. I have a hard time falling asleep, but once asleep I cannot wake up. And I always wake up feeling unrefreshed. I am on the waiting list for a sleep test, I am very curious what that will reveal.

But after much research online, for a while I was convinced my problem was Delayed Sleep Phase Syndrome. It is basically when you become to get sleepy much later than most, and therefore cannot keep up with the general population. I've always been the classic night owl, never being able to fall asleep before 1am. But besides that it has always been so hard to wake up early in the morning to go to school, and later to work. True hell. I've tried to talk to doctors, family members and friends about it over the years and with so many things, they'd all tell me it was difficult for everyone to get up in the morning, that it was 'normal'. But my difficulties in the morning were so intense that I'd sometimes be suicidal. I could not get up at 6am in the morning 5 days a week, I simply could not. I often would have a nervous and physical breakdown by Thursday. My body and mind would crash.

I was also a bed wetter till the age of 22. This is the only platform where I have spoken about this openly because it has been a personal problem filled with shame. But I want to break taboo and let the world know that there are sufferers out there. The theory of my urologist at the time was that there were a number of issues happening all at the same time in my body at night which caused my problem. 1) I don't produce the hormone that limits urine production at night and 2) I have an 'abnormal' REM sleep cycle 3) my bladder is not sending the signals to my brain that it is full. All of these make sense, but they have never really been tested. I used lots of medication for more than a decade (am now off meds thanks to a very strong bladder)

I am happy that sleep disorders are becoming more and more recognized. Not everybody is the same, this is also so true when it comes to sleep - the most important part of being able to stay alive. With no sleep, we would not be able to survive.
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Old 08-30-2017, 10:48 AM #3
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Default Re: What is your most usual Sleep Disorder?

I too have always had problems sleeping, as a child my mind would never stop and I could never fall asleep. I worked at a factory for 5 years and my sleep got so screwed up from 16 hour swing shifts 2 weeks on days 2 weeks on nights. I think this is when my circadian rhythm got thrown off majorly. Then my fibro flared terribly and I had to go see a sleep specialist, I was literally staying awake for 2-3 days at a time, needless to say I was a zombie and I felt like I was near death. I had the sleep study done and even on the sleep meds I was not getting REM sleep with slight sleep apnea. The doctor said it wasn't bad enough to need a cpap and he also said my insomnia was most likely caused by how much pain I was in.

The problem is this is a vicious cycle, extremely vicious, What is the primary cause? Sleep, pain and depression all go hand in hand. Was it the pain that makes it so you can't sleep and then you are tired and that causes the pain to be worse then you get depressed because you cant do what you usually do. Was it the lack of sleep that made you depressed and then the pain sets in because no rest, or was it you got down in the dumps and then the pain set in and you couldn't sleep? It could be any combination and its hard to determine which one you should be treating primarily.

I still barely sleep, if i get 4 hours a night I'm lucky and that's only after taking several sleep meds, then I never wake up refreshed either. It only takes one little thing to wake me up and once that happens I'm just up. Supposedly sleeping outside in a tent for awhile with no artificial lights will reset your circadian clock, I haven't tried it because I know I wouldn't be comfortable at all.
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Old 08-30-2017, 12:38 PM #4
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Default Re: What is your most usual Sleep Disorder?

Vickythecat , I did suspected that you might also have heavy sleep disorder. I lately just found out my self that right now my sleep disorder can be accepting as a disability adding with fibromyalgia or ptsd along with many others I already have. I was thinking that if you go through with complete sleep disorder test it might help you secured your disability , cause for a very long time I thought it was nothing worth getting my attention as long as I can sleep I'm happy, so I adapted my lifestyle to it . I Have no idea how bad it is till I get sleep attacks in the middle of the street or restaurant and public places. It's like a huge crash that I have to find a secure place to sleep suddenly or I'll die a dog death . It's like a suddenly nervously sick drunkeness attack and it's scary. I'm forever living with jet lack not knowing what day it is and there's a huge different between fibromyalgia fog and sleep disorder fog. Sleep disorder is a real serious disability.
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Old 08-30-2017, 01:16 PM #5
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Default Re: What is your most usual Sleep Disorder?

I totally feel you Links56 . Before my non24 was completely out of control . I was in a full blown insomnia where I couldn't sleep as ongoing alertness . During the first 2-3 days of each cycle, I was alerted like I was on some kind of drug which I wasn't . Then after that 2-3 days of awaked I was feeling heavy crash yet I couldn't sleep do to heavy sleep disturbances that literally kicking me out of the bed ( many time fallen off of it) every 10 minutes or less. Everytime I closed my eyes I was bomb with terrifying vivid dreams where I actually act out but thank god my fibro kept me from really physically hurting my self with the vivid dream by shocking pains through my spine although it woken me up times and times again still, the worse I've ever got from it was that I kept kneeing my self in the face ( a few bruised and black eyes) or scratched my face and neck bleeding I have to make sure my nails are smoothly trims and sometime wearing protections like mittens just to go to sleep. Adding up I was getting less than 8 hours for the whole week worse of sleep. After that it was too confusing to mapping my sleep disorder my doctor put me in light therapy which I suspected that's how my intense photophobia emerged. Form having my whole room set with sunlight boxes that set on timer to go on and off along with taking melatonin . Yet after I've got photophobia the only safe place was in the darkness, then after that my non-24 clock went completely nuclear level on me.
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Old 08-30-2017, 04:53 PM #6
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Default Re: What is your most usual Sleep Disorder?

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I totally feel you Links56 . Before my non24 was completely out of control . I was in a full blown insomnia where I couldn't sleep as ongoing alertness . During the first 2-3 days of each cycle, I was alerted like I was on some kind of drug which I wasn't . Then after that 2-3 days of awaked I was feeling heavy crash yet I couldn't sleep do to heavy sleep disturbances that literally kicking me out of the bed ( many time fallen off of it) every 10 minutes or less.
That's exactly how I felt at that time. My body was in full blown adrenaline mode all the time. I'm so grateful that i get the little bit of sleep i get now even as un-refreshing as it is.
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Old 08-30-2017, 04:56 PM #7
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Default Re: What is your most usual Sleep Disorder?

vickythecat, Thank you for posting, there is NOTHING shameful about what you said. I can't relate specifically but maybe someone who is struggling with that would be more apt to talk about it or ask for advice.
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Old 08-30-2017, 07:25 PM #8
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Default Re: What is your most usual Sleep Disorder?

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vickythecat, Thank you for posting, there is NOTHING shameful about what you said. I can't relate specifically but maybe someone who is struggling with that would be more apt to talk about it or ask for advice.
I agree , although I maybe not full time on bed wetting but I do get bed wetting as an adult once a while which usually jerked me out of sleep when that happen, so it was mostly half bed wetting process and send me running to bathroom to finish the rest of the other half . It happen a lot during vivid dreams and I learned to accept it . However , I do get liquid discharge randomly when I'm outside walking or going somewhere using any public transportation. I have to wear heavy pads and carry extra just in case. Just traveling outside which I still can't go anywhere on my own yet, I have to packs stuffs in my bag like any gear for protection and emergency supplies like I'm going for a war just to go get some toilet paper or bath salts at the store near by. Cause god forbid if I do get a sleep attack, everything will come crashing all at once Do to fear of a narcoleptic episode, I'll keep on having panic attacks, hyperventilating with fibro shooting up my spine as if my body trying to fight the feeling till I'll get to the place where I can fully sleep without any worry for safety.
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Old 08-30-2017, 08:21 PM #9
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Default Re: What is your most usual Sleep Disorder?

I'm just biologically nocturnal, and have been since birth. I wouldn't call it a sleep disorder, except for the part where the world in general makes living that way hard. Luckily my hubby works night shift so for most of the year I can get up around 5:30 pm and get everything he needs ready for him to go to work. I typically go to bed around 8am or so when he gets home. Some days I get up mid-afternoon to run some errands and those days I get a bit less sleep but otherwise it works well. Unfortunately we have to switch to being up during the day on the weekends to run the big errands like groceries etc. But we manage. The few times of the year I have to stay up days and sleep nights are really hard on me, no way around it though with seasonal work. If I didn't recognize that I am and always was biologically nocturnal and that trying to sleep at night was nearly impossible for me I might think I did have a sleep disorder in the proper sense.
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Old 08-31-2017, 12:27 AM #10
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Default Re: What is your most usual Sleep Disorder?

Skye2313 . I was exactly like you before my conditions change to the uncontrollable multiple clocks. I was naturally a night owl and so as my dad. They said most B personality are often known to be a naturally night person, while most A personality are for the day. I was happily working at night shift simply because my brain work much better than day time and less anxiety. However my brain at that time still understood night and day in my time zone the idea of setting an alarm clock to accommodating my sleep changing schedules was simple . And since I used to travel to many different countries when I was younger , my body at that time could still tell what to do when encountered with jet lack and adjust back and forward according to the day/night . However with circadian sleep disorder, I have no control over my sleep nor awake situations. At first it was just simply a situation of numbers of alarm clock get destroyed lol , but that was just the started for me . I have no idea why I've gotten more and more aggravated and getting harder to wake up, then one day I just stop hearing it . Then the day time sleep attack started , it came with sudden fatigued , light head spinning , pains cramps and muscle weakness, but do to loads amount of pains it kept me from sudden dropping sleep like narcolepsy. After that my normal sleep was a complete history .
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Old 08-31-2017, 03:17 AM #11
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Default Re: What is your most usual Sleep Disorder?

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I'm just biologically nocturnal, and have been since birth. I wouldn't call it a sleep disorder, except for the part where the world in general makes living that way hard.
I am glad you have found the perfect balance in your life. Very lucky as well.

It is often exactly this bit - how the rest of the world operates - that does make most sleep disorders a disability. From the moment you have to go to kindergarten to the day you retire, you are almost always expected to follow the schedule of the 'normal' human being.

Even after you manage to finish school/college and you are lucky to find yourself the 'perfect hour' job and a hubby who accepts you as you are, little things like family meetings, official paperwork appointments, GP appointments, hospital tests, hospital stays (hello? After waking you up to do checks every 3 hours during the night, they turn up all the lights in the room at 6am to fully wake you up! Like a night in hospital is not torturous enough!) remind you how different you are.

Not to mention this social pressure to 'be a morning person'. If you don't get up at 5am, go for a run for an hour, then prepare 10 different breakfast items for the whole family, then go to work etc. and repeat that every morning, there must be something wrong with you.

If you tell someone you wake up at 10am, you are considered 'lazy'.
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