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My Experience With The Effects of Sleep Deprivation

by Appleblossom
(UK)

I am 57. Post menopausal. Had severe ME/Chronic Fatigue Syndrome nearly 20 years. Unable to work at all during the whole time.


During my 20 years of ME I have had a whole variety of sleep problems. Sleep Paralysis, Restless Leg Syndrome, waking up hourly, then 2 hourly, then every 15 minutes, then every half hour. Severe restlessness. Not sleeping regularly for 1, 2, 3 days. A whole range of changeable sleeping waking patterns that have been very severe and very unpleasant. Fevers, chills.

Just before my menopause started in my late 40's I began with 1, then 2, then 3 nights straight without any sleep at all, and then maybe 5 or 6 hours sleep during 60 hours (3 days). I felt dreadfully ill, drained, nauseous the whole time, chronic headaches, balance problems, poor concentration, unable to read, watch television. Taking numerous painkiller for chronic headaches every day. Severe irritable bowel syndrome symptoms.

The above symptoms gradually got worse and intensified over the years as my sleeping patterns became entrenched yet changeable in their timings.

Effects of sleep deprivation; balance problems, severe headaches, unable to absorb/understand new information, unable to hold a pen and write, feeling very low, depressed, too weak and unsteady to shower, wash hair. Continual sleepy whilst awake. Feeling wretchedly unwell. Feeling unsteady and sickly and needing to lie down even though unable to sleep. Restless. Restless leg syndrome. Agitated. Bad tempered. Impatient. Irritable. Poor appetite. Also, very hungry at times and continually snacking but only small amounts. Not safe to leave home because balance so bad and too weak and ill to get dressed. Constant, permanent severe headaches lasting days and stomach upsets and severe constipation. Totally being unable to eat anything. Losing control of bladder. Too exhausted to get off the bed to go to the toilet. Dizzy. I drop things, burn myself on the oven, toaster and microwave. I accidently cut myself when trying to chop things. I am prone to falling over and having nasty painful falls. I fell out of my bath losing my balance. I struggle to follow speech and instructions.

Over 20 years I have noticed that during the day and night I get times of overwhelming sleepiness, but also suddenly at set times which do change, I get a sudden spurt of energy and wakefulness. This is I have realised deceptive because I call this 'false energy', If I have not slept for 24 hours then it is unwise to start rushing around doing things because Of this spurt of energy. I make things worse by over over exhausting myself when I am already tired through sleep deprivation. I pace myself and use my mind to make decisions on what I do rather then rely on changeable misleading spurts of energy that cannot be in my best interest. If you have not slept in 30 hours then common sense dictates you should take it easy and be careful. I am more in danger of accidents because of the sleep deprivation/erratic sleeping patterns.

For the last few years I have been unable to sleep through the night every night. The earliest I get to sleep on a good night is 5am.Then I sleep all day till the earliest 4pm and the latest 10pm. I have been sleeping 12-16 hours in the daytime. However, I also get sleepless nights and days. So I will regularly get days each week where I am only getting 2 hours sleep per 24 hour period.

How much is my sleep debt? It must be a hell of a lot. I am now not able to fight the sleepiness and the severe symptoms like I could years ago. I have no choice now but to be lying in a blacked out room most of the time. That is usually 16-20 hours every 24 hour period.

I am now
continuously sleepy and feeling wretchedly ill most of the time. Every day I wake up nauseous, severe headaches, excessively sleepy and weak. I have deteriated since my sleep reversal has stuck.

Since I have totally stopped being able to get sleep at night. I have become in myself much much weaker and have to spend 16-20 hours in bed because I feel; dizzy, unable to stand, walk, nauseous, severe headaches, especially on waking, mentally weary the whole time. Unable to leave my home because I am so unsteady and feeling the need to lie down because I feel I will pass out if I don't. I am severely debiletated. I often cannot shower, wash my hair, get to the toilet because of the severity of feeling weak, dizzy, unsteady. I have difficulty understanding information and get muddled and confused easily. I cannot do 2 things at once. I get flustered easily. I have severe light sensitivity and my blacked out rooms are not dark enough for me. I can't bear noise or chatter.

Most of the time I am not depressed as such but I do get a bit low because I get sick of continuously feeling ill. It is now nearly 20 years. I enjoy being alive and don't want to die. The little things I can do I get great pleasure from. However, I do frequently feel I've had enough and think about dying. I have a guinea pig and he is a great comfort and source of joy to me. My Peanut sleeps in naps, mostly with his eyes open. I've noticed he often seems tired too! As he often yawns!! I think this thinking of dying constantly is my 'get out card' that I know I have if I want to use it. But I don't. I enjoy living so much but suicide still preys on my mind a lot. Especially when I am in a lot of pain or have not been able to sleep for a day or so.

There is no doubt in my mind that since my insomnia has taken root permanently these last few years and I can only sleep in the daytime that my overall condition has deteriated. I regularly, frequently on a weekly basis am not able to sleep for 48 hours, perhaps if things go well, getting just 2-4 hours sleep in 48 hours. The other week after being unable to sleep for 2 days I slept in the daytime for 24 hours!

This is not normal!

My doctor regards sleep as a personal management issue. He seems to regard my only being able to sleep in the daytime as a lifestyle choice! He does not realise or recognize how severely I am suffering with the culminative effects of sleep deprivation and the constant chopping and changing of when I am able to sleep in the daytime. Because he does not know how to treat the symptoms, not even willing to acknowledge them as a disorder of some kind it is dismissed.

Here in UK there is a lot of publicity about sleep apnea because it is treatable but no mention of other sleep disorders and insomnia is just regarded as the common cold; nothing one should bother the doctor with.

I wonder how many people have committed suicide as a result of enduring insomnia for years on end. Often, when I have been awake 30 hours or more suicide by taking an overdose seems very appealing. However, as soon as I have been able to get some sleep, even just 2 or 3 hours I feel much better moodwise and have no desire to die.

If I told a doctor this here in the UK they would think I was anxious or depressed and miss the obvious. I have a severe sleep disorder and its making me sicker and sicker by the months and years.

Comments for My Experience With The Effects of Sleep Deprivation

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May 29, 2016
 How are you feeling now? NEW
by: Anonymous

Thank you for sharing. It's very nice that you are willing to share about your experience. That is the first step :)

I hope though that you are doing g better now. God bless :)

And if it is ok, how are you now?
Jul 08, 2016
 Suggestions NEW
by: Anonymous

I am a 51 year old maLe and have experienced the feeling off balance, weak and unsteady on my feet, confused, feeling ill in general, many of your symptoms. Some suggestions:

First, don't commit suicide, trust that Heavenly Father is aware and will help you.

Second, get rid of the black out curtains. I used to use them. The problem is they take away your circadium rhythm. The body thrives on regularity and routine. From what I've read you've lost that, you have no consistent pattern. The sunrise and sunset along with your natural production of melatonin at sunset has everything to do with your body's natural clock.

Third, examine what is or was your attitude towards sleep. Was or is it something you looked at as a hassle that you wish you didn't have to do? Or was or is it something you used to look forward to? You want to make it something you look forward to such as a time when you can relax and enjoy a book you've always wanted to read. It needs to become your time, when you forget everything else and take a vacation from all worries and concerns. If things worry you tell yourself that no worry is more important than your sleep. Have a little lamp next to your bed so you can enjoy that favorite book, and a notepad to write down any worry if you have to. But remind yourself that thus is your time and the most important thing you can do is sleep rather than any to-do list.

Fourth, if telling yourself that sleep is the most important thing you can do stresses you, I only mean in comparison to any worry list you have. If not sleeping stresses you, don't think of it as a big deal. Minimuze it in ykur mind, which leads to the next suggestion.

Fifth, hide, cover or remove clocks from your sight in your bedroom, that way you won't know and stress over the time if you wake up.

Sixth, determine the amount of sleep you need and plan bedtime accordingly. Going to bed at the same time is important. Establish a routine of what you do before bed and to get ready fur bed. Avoid electronics and their light. Remember you're treating yourself to that favorite book and you're going to fall asleep with it. At some point you'll set it aside and turn off the lamp.

Seventh, if you wake up don't stress, perhaps move to a chair, read a bit, then go back to bed. Tell yourself it doesn't matter you woke up, it's not a big deal.

Above all establish a routine and stick to it till it sticks to you.

As you begin to feel better you can get some exercise which will also help you sleep better.

Lastly, look at all your prescriptions and see if there's side effects that are affecting you and discontinue as much as you safely can.

Don't give up, force the pattern upon your body, you will win because your body already craves and wants a pattern.

Good luck and don't give up!
Jul 09, 2016
 Suggestions NEW
by: Anonymous

I am a 51 year old maLe and have experienced the feeling off balance, weak and unsteady on my feet, confused, feeling ill in general, many of your symptoms. Some suggestions:

First, don't commit suicide, trust that Heavenly Father is aware and will help you.

Second, get rid of the black out curtains. I used to use them. The problem is they take away your circadium rhythm. The body thrives on regularity and routine. From what I've read you've lost that, you have no consistent pattern. The sunrise and sunset along with your natural production of melatonin at sunset has everything to do with your body's natural clock.

Third, examine what is or was your attitude towards sleep. Was or is it something you looked at as a hassle that you wish you didn't have to do? Or was or is it something you used to look forward to? You want to make it something you look forward to such as a time when you can relax and enjoy a book you've always wanted to read. It needs to become your time, when you forget everything else and take a vacation from all worries and concerns. If things worry you tell yourself that no worry is more important than your sleep. Have a little lamp next to your bed so you can enjoy that favorite book, and a notepad to write down any worry if you have to. But remind yourself that thus is your time and the most important thing you can do is sleep rather than any to-do list.

Fourth, if telling yourself that sleep is the most important thing you can do stresses you, I only mean in comparison to any worry list you have. If not sleeping stresses you, don't think of it as a big deal. Minimuze it in ykur mind, which leads to the next suggestion.

Fifth, hide, cover or remove clocks from your sight in your bedroom, that way you won't know and stress over the time if you wake up.

Sixth, determine the amount of sleep you need and plan bedtime accordingly. Going to bed at the same time is important. Establish a routine of what you do before bed and to get ready fur bed. Avoid electronics and their light. Remember you're treating yourself to that favorite book and you're going to fall asleep with it. At some point you'll set it aside and turn off the lamp.

Seventh, if you wake up don't stress, perhaps move to a chair, read a bit, then go back to bed. Tell yourself it doesn't matter you woke up, it's not a big deal.

Above all establish a routine and stick to it till it sticks to you.

As you begin to feel better you can get some exercise which will also help you sleep better.

Lastly, look at all your prescriptions and see if there's side effects that are affecting you and discontinue as much as you safely can.

Don't give up, force the pattern upon your body, you will win because your body already craves and wants a pattern.

Good luck and don't give up!
Oct 07, 2016
 :( NEW
by: Anonymous

hi sweetie,i can honestly say i truley feel your pain, its been 9 nights of no sleep now for me, i also suffer from axiety, my mind does not want to fall asleep, and then when i get so runin down i develep cronic fatuigu for 6 months ever year, my bodys way of catching up on sleep dept. you need to get a new doctor if no one listens to you i sugest you buy valuim over the balck market, in places like india and bali its eevrywhere. also i know it sounds stupid but melitonin is amazing. you can order online.
Mar 02, 2017
 Feeling your pain NEW
by: Anonymous

I'm 23 and the same thing happens to me. Desperate to sleep but just laying there. Afterwards I feel weak, shakey, and dizzy. I need to spend the next day laying down because I cannot lift things and I shake so badly others point it out. I've also had sleep paralysis, it's terrifying. You certainly aren't alone here.
Aug 09, 2017
 No sleep NEW
by: Clay

I have been dealing with progressively worsening insomnia since the end of April 2017. I was struggling mentally with some health issues that I was having when this insomnia began. I started waking up because of violent kicks and arm thrashing and couldn't go back to sleep. I've seen several doctors been prescribed many sleeping meds Lunesta I can't take Ambien Ambien CR and bell Sombra which I won't take and Ativan which I'm trying to wean myself off of because I missed a dose one night and was having with drawl symptoms ,i was taking 3 mg of Ativan to help me sleep at night though my sleep was not very deep or restful as I have very deep circles under my eyes since all this began. I've added melatonin at bedtime and relaxation techniques and even pressure point areas to help induce relaxation and sleep but all has come with no success. VA ordered a sleep study three months ago and I have yet to have that completed. Noncontrast brain MRI was normal. I have begun to have very impaired memory, balance and leg weakness balance challenges and leg weakness, very heat sensitive and photosensitivity anytime I sit out in the sun even if it's at the pool with The family. I have no support from my wife that she thinks it's all depression and anxiety , however there is no way anyone could persist for four months with one hour of sleep at night at best, many nights without any sleep at all and even with meds barely any sleep. I am very scared that this is SFI and have even spoken to Dr. Mastroianni in Chicago who found the first case of it. He was waiting to hear back for me on the sleep study and that's been over two months ago. My emotions are all over the place I get angry I cry like I am now very scared and feel all alone. I have a wonderful six-year-old son that I want to see grow up and I want to be with so much. But because of all this I am unable to do much physically with him and also having occasional double vision.and headaches makes focusing very difficult. I'm just so lost and feel hopeless as I have felt no answer yet and it had no relief of my lack of sleep. SFI is a terrible way to die and I guess thats my curse
Aug 09, 2017
 Response to Clay NEW
by: Appleblossom

I don't know where you live in the world and your financial situation, but it seems to me common sense suggests you need to see some Specialist of some kind who can eliminate things and try to get to the bottom of what is the matter. An ME/CFS specialist or a Neurology consultant might be a start.

It is interesting that you think you might have a very rare disorder. I suspect, and I could be wrong here, but I do not think that is the case. I think it is your sleep deprivation and isolation that is causing you to think your illness could be of the worst case scenario.
Sleep deprivation IS very depressing. Even healthy people deprived of one night's sleep claim to be feeling low and out of sorts the next day.

If your General Practioner is unhelpful then change practioner. There are some Specialists who will see people without a referral from their General Practicioner.

I am sorry your wife is unsympathetic and unsupportive. The sooner you get yourself a diagnosis the better. When you do, give your wife leaflets explaining the illness you are suffering from.

Research a way of being able to see a recognised Specialist of some sort.

I have had severe ME/CFS over 22 years and many of my symptoms I found over the years odd and puzzling.

You might benefit from going to some self-help group. For instance for ME/CFS, or an MS group. There you will probably find like minded people with like minded symptoms. I am certain one of these people will be able to point you in the right direction.

Also going online and joining these groups online can be useful. In the chatrooms you will be able to hear what other people are going through. Again, it is likely that you will eventually find someone who says, "yes, I have that too".

Some people find keeping a journal when they are going through a crisis useful. Jotting down your thoughts and feeling can be a relief and also strangely unlock your mind and give you ideas how to tackle these unsurmountable problems!

Although you do not feel well enough to play with your child, your child is still benefiting from your prescence. Also, strangely you are teaching indirectly to be kind, supportive and understanding to sick people. Your child will probably grow up a more kinder, considerate person as a result of learning to be considerate of your weakness.

My late mother had health problems, but I do remember as a child how she stood by the side of the ice rink walking slowly round and round the rink while I nervously tried to skate on the ice. It would have been physically impossible for my mother to go on the ice.

I hope very much you can get some clarification as to what is at the root of all your symptoms. But even so you need a supportive doctor who you can see regularly to keep an eye on you and give the support you need.
Sep 14, 2017
 Insomnia for nearly 2 years NEW
by: Anonymous

My insomnia started in October 2015 and still continues however has changed. I spent 10 days at the start on 1 hour broken sleep each night which subsequently caused me to enter psychosis. Since then it was waking every hour or 2 hours now I can get about 2 nights in a row where I will sleep 5 solid hours before waking every hour happens.

I am constantly dizzy off balance vertigo. Feel sick and hungry at the same time. Horrendous headaches sore body.

I also suffer from an anxiety disorder and ptsd so the lack of sleep makes this worse. I have also been diagnosed with depersonilization and derelization (disocative disorders) one of the systems is deja vu which I have nearly 24/7 depsning on how good or solid my sleep has been.

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