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Recovering from Long Term Sleep Deprivation and DSPS

by Lauren
(Lafayette, LA)

Aphasia-like symptoms felt in long-term sleep dep recovery

Aphasia-like symptoms felt in long-term sleep dep recovery

Aphasia-like symptoms felt in long-term sleep dep recovery Me :)

I am a 28 year old female, American. I am currently on Day 19 of trying Sleep Deprivation Therapy in a last ditch effort to balance my sleep. I've been struggling with DSPS for about 3 years now. It has negatively altered my life in every way.


Before I began having sleep problems, I more or less slept well, usually 7-8.5 hours a night at a socially acceptable time. I would wake up anywhere from 5 to 35 times in a night, but would always go right back to sleep and felt refreshed as long as I slept a little longer on the nights when I woke up more often. (Sleep apnea runs in my family. My Dad has it, and his Dad had it. I've never undergone the testing to be diagnosed, but I assume I have mild sleep apnea as well.) I've been this way ever since I can remember, my body adapted, and I never really considered it a problem. An annoyance, perhaps, but nothing that detracted from my overall sleep quality or ability to function. Also noteworthy is that I had night terrors as a small child, from about 3-6 years old. I have only few and vague memories of this, but my parents have told me stories.

My insomnia problems began when I was going through a divorce in 2008. My anxiety levels were so high, and I had adrenaline pumping through my body all the time, I was lucky to get 2-3 hours of sleep a night. This pattern lasted for about 6-8 months, through the duration of the crisis. I was like the walking dead. I moved in with my best friend, and it was all I could do to hold down a simple job waiting tables to pay the bills. I'd be up all night worrying, finally fall asleep around 6-8am, then have to wake up at 9am to be at work for 10am. When working a split shift (which I did several days a week) I'd force myself to get to work for 10am, pass out from 2:30pm to 4:30pm, work again from 5pm-11pm, and be awake til 6am-ish, repeat.

Once my crisis passed, I began being able to sleep a little bit earlier, but never earlier than 2am, and most often naturally falling asleep between 3am and 5am. Left to myself, (no alarms) I'd sleep a full 7-9 hours, fairly soundly (waking sometimes, as was "normal" for me, but falling right back asleep). Unfortunately, I then got a "real" job that required me to roll into the office sometimes as early as 7am (at least once a week) and usually between 8:30am and 9am. This is where I believe my condition became chronic.

It became normal for me to only get about 3-6 hours of sleep on a regular basis, and then I'd crash hard on the weekends (getting 8-12 hours of sleep Saturday and Sunday) to compensate. That's when I started doing sleep research and really got good sleep habits (dark room, using bed only for sleep and sex, monitoring caffeine and alcohol in relation to bedtime, all that jazz). I've had excellent exercising habits since 2006 (exercising 3-6 times a week for at least 30 minutes a day).

Then I was let go from my job (downsizing, economy) and decided to go back to school to earn my Masters degree. (Fall 2010) THIS is where things REALLY began to become unbalanced. I got the crazy notion that trying a poly-phasic or bi-phasic sleep schedule was the greatest idea in the world. Poly-phasic didn't really work, but I really enjoyed the bi-phasic schedule. It felt really natural to go to sleep from about 4am and sleep til 9am (sometimes 5-10am, or 6-11am), then take a nap from about 2pm-5pm, 3-6pm or 4-7pm. This schedule really felt natural, I fell asleep fairly easily at these times and felt rested upon awakening. Unfortunately, it is NOT socially acceptable to say, "Gee, sorry Dr. Professor, I can't meet you at this time/attend class cause I have to take a nap." So, on days when I had obligations during the mid-afternoon (about half the week) I would just be sleep deprived. Unfortunately, this did not result in my falling asleep any earlier at night. I generally had to be at school for 11am, and had a class one night from 6-9pm. These class hours are not going to change much for me for the duration of my graduate school program (I have 1.5 to 2 years left).

I began to accrue, little by little, a massive sleep debt. I questioned what was different from this time as opposed to when I was sleep deprived in 2008-09, and realized that back then I had crisis-related, adrenaline/survival hormones pumping through my body. Now I was just living real life.

I began to compensate by, once again, sleeping ridiculous amounts of hours on the days when I did not have to be somewhere (usually Friday, Saturday, and Tuesday evening/mornings), and obscenely small hours on class days (Sunday, Monday, Wednesday and Thursday evening/mornings). Typical of this time (August 2010 to May 2011) would be to sleep 3-4 hours a night 4-5 nights a week, nap any time I could (upwards of 2-3 thirty minute to two hour naps a day) and then CRASH HARD whenever I could, sometimes sleeping 12-18 hours in a single session. I adopted the "OMG MUST MAKE A's, MUST SLEEP WHEN I CAN AND DO WORK SLEEP IS FOR THE WEAK." mode of thinking. (I'm sure the reader can identify with this thinking, as you are all graduate students, or professors.)

Being a student, I am/was broke, and could not afford to see a sleep specialist, but thankfully, a sleep center here in town offers a free, bi-annual sleep seminar and consultation. I was able to talk to the sleep doctor, and showed him my sleep journal charts I kept (I use the program Sleep Chart, available here: http://www.supermemo.com/articles/sleepchart.htm).

Naturally, he couldn't give me an official diagnosis without my going in overnight for observation/monitoring, but he agreed with me that my history and sleep patterns suggested that I had developed DSPS. We went over various methods, etc, commonly used to overcome DSPS and get on a regular sleep schedule and I replied to all, "Tried that, and that, THAT didn't work at all, that one worked for a week or so..." and etcetera. Then he said, "Well, there's only one thing it seems that you haven't tried." I cringed when he said this, and thought to myself, "Not Sleep Deprivation Therapy, anything but Sleep Deprivation Therapy..." Of course he said Sleep Restriction Therapy (which is the same thing). You can view the document he sent me here: https://docs.google.com/document/pub?id=1nNocnqee2Rcxj52AV1FNyL0ib2dY6YyCXDUZDeNAuj8

He warned me that I should attempt to implement this program when I didn't have a ton of stuff going on (ex.: not during finals). This was March 2011, so I just struggled through the rest of the semester (I am lucky that my professors are amazing and very understanding), and am now on day 19 of waking up at 8am everyday, no naps. I am keeping a daily blog of my journey through Sleep Deprivation Therapy here: http://recoveringinsomniac.tumblr.com/

Whew! THAT was a ton of background information. If you made it through all that, my question is this: Where can I find information on what happens to a person's brain when recovering from long-term sleep deprivation? Because the progress and changes I see and feel going on in myself are pretty amazing. I would love to read about other people's journeys through similar processes, so that I can anticipate what to expect.

The first two weeks I was pretty much a "normal" sleep deprived zombie, and exhibited the usual symptoms (inability to focus, moodiness, depression, lack of energy, mild hallucinations, etc). Then, on Day 14, I noticed a marked change: I slept for 8 hours, at a normal time (12am-8am), didn't feel foggy when I woke up, and was energetic for a good part of the day. WOW.

Since then (has it really only been five days??? Time and space seem to blend together in the strangest of ways recently...) I seem to be able to function "normally" (as in, how I functioned pre-sleep problems), but only for a limited time each day. The amount of time I am able to function normally appears to lengthen from 30-60 minutes each day since I made it to day 14 of the Sleep Deprivation Therapy.

HOWEVER, the strange thing is that I _know_ that this is still not me at 100%. The strangest thing is that I experience a sort of aphasia (but it does not fit any variation of definition of aphasia that I have found).

The phenomena is this: I seem to have problems concretely connecting words to their definition. It’s the strangest thing, and not normal for me at all. It’s like, I know the word, or a word that is spelled/pronounced very close to the right word (e.g. I want to say "proactive" but I immediately dismiss that word and cycle through a list of similar sounding words like "precursor", "premonition", "preamble", etc.) and I have a definition that I know is connected somehow to that word (it always ends up actually being the definition of the word), but my brain doesn’t make that final, solid connection to let me use it. I guess it’s like something being on the tip of your tongue, but it’s different somehow. I can literally feel something happening in my brain when this happens, and can identify and physically point to the area of my brain when it happens.

The area of the brain I "feel" working is on both sides of my brain, although more often on the left side, directly in-between my temple and my ear, and up about 1/4-1/2 an inch. While I like, and am fascinated by neuroscience, I am by no means an expert. Google tells me that this area of the brain is the pre-motor cortex, and seems more specifically to be Broca's Area, which is related to speech and language. I drew a picture of what it feels like. (see uploaded picture). In addition, I notice that when I am struggling to make this connection, my eyes look directly upwards, not to the left or right. (I know that there have been some studies done on eye movements and direction and memory recall.)

Does this make any sense, or is it just another sleep deprivation crazy feeling? I am thankful for any and all insight you can give me!

Thanks in advance,

Lauren

Comments for Recovering from Long Term Sleep Deprivation and DSPS

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Sep 04, 2011
This is quite curious
by: billwcox@gmail.com

I have had two forms of sleeping disorders for 15 years. I am currently up again at an unusual hour unable to sleep. I felt something happening in my brain so I decided to do a internet search when I came across your blog. I too have troubles searching through my mind for words. This is unusual because I have a pretty deep vocabulary. I often have blamed this problem on my being to right brained. I am an artist.The sleep disorders I have are sleep apnea,and non-r.e.m. parasomnia. I have also gone to a psychologist who tells me that my major depressive disorder is linked to my non-r.e.m. sleep. He has told me that without the rapid eye I do not process traumatic events properly.He has used a technique that causes me to have rapid eye movement and this has given me some relief of my depression. He is the only psychologist that has ever been able to help me. I bring this up because you mentioned something about eye movement.
I also have noticed that florescent light makes my thinking foggy.I think there may be a link between this phenomena and dyslexia. I have had the form of dyslexia where letters and words appear to avalanche off the page.I have read that different colored optical lenses have been known to help. I'm not sure if any of this is helpful but I thought I would throw it out there. I can't sleep any way.

Sep 04, 2011
which clinic
by: Anonymous

HI Lauren,

I, too, live in Lafayette. Which is the sleep clinic you refer to that offers a free, bi-annual sleep seminar and consultation?

I would really like to find out more also, but it's more than the budget can handle right now.

Thanks.

Nov 04, 2011
Just some praise
by: Lena

Wow I loved your post. It was so descriptive and helpful. I'm sitting here wide awake at 5 in the morning, googling sleeping disorders and im 99% sure I have this. You've given me hope by talking about your normal "100%" , if I have this I've had it for a very long time so I don't really remember what mine is. The specific memory things you talked about are really interesting. I will check out your blog. Thank you :)

Mar 27, 2014
sleep debt due to medication and surgery NEW
by: Anonymous

thanks for the blog

almost a month ago i had kidney transplant surgery. docs gave me massive doses of the steriod prednisone which for me acted as stimulant - could not sleep more than 2-3 hours at a time. this drug also made me manic, euphoric and amped my moods. after 2 weeks they reduced the med and then finally nearly 3 wks post surgery eliminated the med altogether. This med also turned me into a temporary diabetic.

Prior to surgery I had a weird sleep schedule - sleep at midnight often up 2 hours middle of the night and sleep until 10 am or noon. much of this was related to caffiene and indigestion which have now been largely resolved due 2 my new kidney.

Any one have any idea on how long it will take me to recover a natural sleep rythym post surgery and 3 weeks of med induced sleep medication ???

Nov 07, 2014
Sleep Apnea NEW
by: Jackie

I would strongly recommend that you are tested for sleep apnea. You said in your post that it runs in your family. You need a CPAP machine if you have sleep apnea. I would wake up a lot and now can sleep continuously throughout the night wearing my mask.

Mar 26, 2015
Sleep disordered breathing NEW
by: Anonymous

Also wouldnt hurt to check for SBD (sleep disordered breathing) sleep apnea, upper airway resistence syndrome (UARS). I have UARS and i would have terrible sleep-onset insomnia/unrefreshing sleep and fatigue. Using an oral appliance resolved it. That was until I changed schedules and my insomnia came back because of it; im finally sleeping again but still tired. How long after your insomnia resolved did you find that you werent fatigued anymore during the day?

Dec 05, 2015
DSPS female in her 20's NEW
by: Anonymous

It's like every body else is turbo charged and I only have half of a battery. It's like time just moves differently for me then it does for every one else

I was diagnosed with DSPS about a year ago. I really associate with that brain stuff that you were talking about. Upon an initial google search I thought that my doctor must have been an idiot. This wasn't some teen crazed nighttime obsession. But as I started to find more informed posts, and personal confessions I realized that this is probably a correct diagnosis.

I feel as though everything is uncertain. I find it hard to make decisions due to this inherent uncertainty. I often feel as though there is a pungent hint of madness in everything that I do, and have had to come to embrace it just to get by in my day to day life. Like when a normal person hasn't slept for days, and you know that your decisions are impaired due to your lack of sleep, but you are forced to make decisions anyway, I feel this every day. I try to explain it to people as having "brain fog". But in the end I can come to a reasonable decision and I am also quite smart and am able to complete difficult tasks, it just takes me much, much longer than it does other people.

Often, when I am too tired, there is quite literally a PAIN associated with just how tired I am. At its worst I will often compare it to a gaping, untreated, bloody hole in my side. I'm so tired it hurts, despite sleeping every night for eight hours.

My DSPS has been particularly bad recently. I am taking one class, and it is in fact a time consuming class. But it is only one class. Here is what my DSPS does at it's worst: When I wake up I am useless to the world. I have to take a few hours to shake off the dizziness, inability to focus and general "being asleep qualities" associated with being extremely groggy. After these few hours it's almost like a calm before the storm. I am be productive, such as writing this post. Then mid day I will plummet into an inability to concentrate again. The time for this can vary and I can often "treat" it with proper meals and doing things that help me hone my attention such as watching a show i am really engaged in. Around 5 pm I am wide awake and ready to take on the world. I ALWAYS start my homework by this time but TRY very hard to start earlier, often resulting in me staring at a blank piece of paper for hours, struggling to pay attention to a sentence or keep enough information in my head to work with it. From 5pm until 3 or 4 I can often chug straight through, working with very limited to no breaks. Unfortunately, going to sleep this late only exacerbates my condition and so I often try to cut it off around 1 and lay down for bedtime.

With that being said, I hope that it makes some sense that I feel as though I just don't have the time that other people have in a day. MY mother, my counceler, and my friends can't seem to understand why I can't keep up with my life. I literally have to put off cooking myself food and eat junk because I just don't have enough time to get all of my work done, and take care of personal tasks like cleaning, paying bills and taking care of medical appointments. Between this and my school work I am just back to back booked between waking up and sleeping. It's quite depressing because from my perspective, it feels like i'm being worked to until my hands are bloody, sort of a schedule. To the outside world, I am a lazy SOB who can't get her life together and wastes it away probably by indulging in some activity. This couldn't be further from the truth however, as I rarely get to do what I want and often when I do get the time to do what I want i'm simply too sick and tired to even be able to engage in it. examples: zoning out during a movie because it's finally a time when I can take a break or trying to play a game on my computer and ending up just staring at the screen and not doing anything because I just feel too exhausted to interact with anything.

Thank you for reading my long and unorganized post. I am not currently being treated for this condition. I had a doctor who wanted to treat me with PILLS: such as anxiety meds and light depression meds. But I lost my insurance. My new doctors feel as though I should get NO treatment for my DSPS and perhaps my psychiatrist can pick it up for me. She, sadly, has never heard of DSPS and has no intentions of learning about it. So tough luck there, huh. As a bit of a precursor on this information. I diagnosed myself as having crohn's disease after years of my doctor REFUSING to test me for it due to my young age. When I finally confronted her she ran the test and I tested positively for having it. I was able to devise my own health plan to eliminate all of the symptoms regarding it despite the fact that I have no medical training and the related information was quite sparce and "iffy". I feel entirely incapable of combating my DSPS, in contrast. I hope that I can find the time and energy, and luck upon some one who has successfully treated their DSPS.

Good luck to all of you out there who actually suffer from this issue. It is very hard on your life.

Dec 05, 2015
DSPS girl NEW
by: Anonymous

Sorry if double post I didn't see my first post anywhere.

It's like every body else is turbo charged and I only have half of a battery. It's like time just moves differently for me then it does for every one else

I was diagnosed with DSPS about a year ago. I really associate with that brain stuff that you were talking about. Upon an initial google search I thought that my doctor must have been an idiot. This wasn't some teen crazed nighttime obsession. But as I started to find more informed posts, and personal confessions I realized that this is probably a correct diagnosis.

I feel as though everything is uncertain. I find it hard to make decisions due to this inherent uncertainty. I often feel as though there is a pungent hint of madness in everything that I do, and have had to come to embrace it just to get by in my day to day life. Like when a normal person hasn't slept for days, and you know that your decisions are impaired due to your lack of sleep, but you are forced to make decisions anyway, I feel this every day. I try to explain it to people as having "brain fog". But in the end I can come to a reasonable decision and I am also quite smart and am able to complete difficult tasks, it just takes me much, much longer than it does other people.

Often, when I am too tired, there is quite literally a PAIN associated with just how tired I am. At its worst I will often compare it to a gaping, untreated, bloody hole in my side. I'm so tired it hurts, despite sleeping every night for eight hours.

My DSPS has been particularly bad recently. I am taking one class, and it is in fact a time consuming class. But it is only one class. Here is what my DSPS does at it's worst: When I wake up I am useless to the world. I have to take a few hours to shake off the dizziness, inability to focus and general "being asleep qualities" associated with being extremely groggy. After these few hours it's almost like a calm before the storm. I am be productive, such as writing this post. Then mid day I will plummet into an inability to concentrate again. The time for this can vary and I can often "treat" it with proper meals and doing things that help me hone my attention such as watching a show i am really engaged in. Around 5 pm I am wide awake and ready to take on the world. I ALWAYS start my homework by this time but TRY very hard to start earlier, often resulting in me staring at a blank piece of paper for hours, struggling to pay attention to a sentence or keep enough information in my head to work with it. From 5pm until 3 or 4 I can often chug straight through, working with very limited to no breaks. Unfortunately, going to sleep this late only exacerbates my condition and so I often try to cut it off around 1 and lay down for bedtime.

With that being said, I hope that it makes some sense that I feel as though I just don't have the time that other people have in a day. MY mother, my counceler, and my friends can't seem to understand why I can't keep up with my life. I literally have to put off cooking myself food and eat junk because I just don't have enough time to get all of my work done, and take care of personal tasks like cleaning, paying bills and taking care of medical appointments. Between this and my school work I am just back to back booked between waking up and sleeping. It's quite depressing because from my perspective, it feels like i'm being worked to until my hands are bloody, sort of a schedule. To the outside world, I am a lazy SOB who can't get her life together and wastes it away probably by indulging in some activity. This couldn't be further from the truth however, as I rarely get to do what I want and often when I do get the time to do what I want i'm simply too sick and tired to even be able to engage in it. examples: zoning out during a movie because it's finally a time when I can take a break or trying to play a game on my computer and ending up just staring at the screen and not doing anything because I just feel too exhausted to interact with anything.

Thank you for reading my long and unorganized post. I am not currently being treated for this condition. I had a doctor who wanted to treat me with PILLS: such as anxiety meds and light depression meds. But I lost my insurance. My new doctors feel as though I should get NO treatment for my DSPS and perhaps my psychiatrist can pick it up for me. She, sadly, has never heard of DSPS and has no intentions of learning about it. So tough luck there, huh. As a bit of a precursor on this information. I diagnosed myself as having crohn's disease after years of my doctor REFUSING to test me for it due to my young age. When I finally confronted her she ran the test and I tested positively for having it. I was able to devise my own health plan to eliminate all of the symptoms regarding it despite the fact that I have no medical training and the related information was quite sparce and "iffy". I feel entirely incapable of combating my DSPS, in contrast. Lastly, I have personally been tested for sleep apnea and other issues and I DO NOT have them. I just have DSPS, with an issue where my brain produces abnormal behavior while asleep causing my sleep to not be very beneficial.

I hope that I can find the time and energy, and luck upon some one who has successfully treated their DSPS.

Good luck to all of you out there who actually suffer from this issue. It is very hard on your life.

Jan 24, 2016
Unable to speak properly due to lack of sleep NEW
by: Amila

Hi Lauren I'm a person who research quite a lot on sleep deprecation and its causes, symptoms etc but do not post comments normally. However after reading your observation on sleep deprivation and its relevance to speaking I thought i need to share my experience as well. I have been having sleeping problems for about 7 years now. I don't remember how it all started. I think it happened during my university times when i started to experience stress and anxiety for the first time in my life specially due to some unhealthy relationships that i was in. However this lead me to live my life in hell for years. I can remember being shit scared when the night comes because sleep is basically has started to seem like the most impossible thing in my life. I remember tears, blood, sweat and agony for years of sleepless nights. Needless to say my performance dropped like nothing during day times I was emotionally unstable started forgetting things and was unable to feel good about life. Without notice sleep deprivation has messed up with my logical thinking, reasoning and decision making as well and i only figure it out recently because it has messed up my ability to figure out what's going on in me and around me, the situational awareness. Now I have somehow managed to adjust myself to this pathetic life style and still found ways to beat the average people in the society. I am an engieering graduate with a good job and financially secured amidst all that shit happened to me. However now im noticing that whenever I can't get a proper sleep the next day i an unable to engage in effective conversations with people because it seems i cannot find the excat word i want to speak. My slow paced incorrectly composed sentenced often get me into humiliation which i of course i don't care about. However I'm little bit worried that sleep deprivation has permanently impaired my linguistic skills, and i'm constantly looking for a way to recover if it has impaired.

I think people like us should actively engage in a forum or something to talk about new findings and to share knowledge to overcome these obstacles. Add me on facebook or kit via email amilawickyuom@gmail.com

Jan 27, 2016
What 10 years of severe sleep deprivation can do to you NEW
by: Anonymous

I actually suffered from this more or less VOLUNTARILY because I held down multiple jobs (some requiring overtime) and did all the household chores and raised 4 kids. I averaged 2-4 hours of sleep per day, very rarely in one session. It was usually split into half hour increments whenever I could squeeze it in.

At first, I was a little sleepy, but got used to it. I have a mentally demanding job which requires a lot of creativity, problem solving and computer work. It is also very deadline oriented. After about ten years or so of this, some very strange things started to happen.

I developed an autoimmune disease (which, while it's not something you want, may be why I no longer suffer from colds or flu - I can trace back to that onset the last time I had one). Maybe the body's way of protecting me and helping counter the sleep deficit effects? Who knows.

Next, I started getting "twitches" (if you can call them that), in my face that were so severe it looked like I was making faces on purpose. Docs put me on various mess - nothing stopped them. Then things got worse. The uncontrollable muscle movements spread throughout my body. Sometimes they were more of the "tense and hold" variety that contorted hands and fingers, preventing normal use. I learned to mouse with my wrist and type with a knuckle or finger tip, whatever was protruding at the time. Sometimes my eyes wouldn't open, so I taped them open. Sometimes I was cross eyed.

At this point, mentally, I kept forging ahead as best I could and still outperformed many of my peers (I think by sheer willpower), but the second I wasn't busy, I would fall asleep, if only for 15-30 min. Driving sleepy was the norm. I had a host of ways to combat that. But I was definitely less tolerant and would get angry occasionally over things others viewed as minor.

By now, growing concern over worsening symptoms led me to the hospital. No one had a clue as to what was causing my symptoms. I spent three days there enduring every possible neurological test. Everything came back normal. I was considered legally handicapped and issued a sticker.

Coworkers were so concerned over my lack of muscle control, they started arranging to take me to and from work. I started finding parents that could take me and my kids to their various practices and events. I could usually only get 5-10 minutes of physical activity in before muscles no longer responded. But I still kept this grueling pace.

Finally, I lost one of my jobs. I decided to stick with just the one, since my kids were now in college or on their own. I saw some gradual improvements in the next three months, but the real breakthrough came when I decided to do a fast. (By then, I had most of the classic problems the lesser sleep deprived suffer - diabetes, high blood pressure, obesity). One week into the fast - all muscle problems stopped abruptly. Very strange. This leads me to believe that sleep's role in eliminating toxic substances found in our over-processed GMO foods should be considered. How else can one explain the sudden reversal? I've been eating organic ever since.

It's now 5 years since the fast. I sleep usually 7-10 hours per night (in one session!). I've lost a considerable amount of weight (still have some to go) and control my blood sugar with diet only. some things will still trigger mild muscle problems, mostly in the face. Eating processed foods, a headache, under 6 hours sleep are the usual culprits.

I don't think I'll ever completely reverse the effects, but I'm a much more functional person today no doubt.

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