1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

The Basic Sleep Poll

Discussion in 'Sleep' started by Cort, Jul 1, 2009.

?

My (yawn) sleep issues include

  1. Insomnia

    242 vote(s)
    68.9%
  2. Multiple Waking

    248 vote(s)
    70.7%
  3. Early Waking

    197 vote(s)
    56.1%
  4. Sleep Apnea

    55 vote(s)
    15.7%
  5. Restless Leg Syndrome

    88 vote(s)
    25.1%
  6. Unrefreshing Sleep

    312 vote(s)
    88.9%
  7. Alpha-Delta Sleep Abnormalities

    83 vote(s)
    23.6%
  8. Daytime Sleepiness

    190 vote(s)
    54.1%
  9. Wild Dreams

    126 vote(s)
    35.9%
  10. Sleep problems (yawn) I don't have any sleep problems

    19 vote(s)
    5.4%
Multiple votes are allowed.
  1. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    My biggest problem is getting to sleep.
    However, I've at least learned how to rest all night when actual sleep eludes me.

    I've been through months and months of getting no more than 2-3 hours total in one night. The worst part of that is having to endure living for 21 hours out of 24.
    Misfit Toy and rosie26 like this.
  2. leela

    leela Slow But Hopeful

    Messages:
    2,376
    Likes:
    2,751
    Couchland, USA
    (((((peggy-sue)))))
    :hug:
  3. SunnyInside

    SunnyInside

    Messages:
    51
    Likes:
    22
    NORTHAMPTONSHIRE, UK
    When it gets dark outside my body wants to switch off, it usually gives me an hour and a half to switch off and in that time it gives me reminders, if I havent stopped by then, my body does it for me. So, right now its 8.30pm and I know I'm on borrowed time.
    My head wakes up when its light outside but takes me about 2hrs for my body to wake up after my eyes have opened.
  4. CallieAndToby

    CallieAndToby Senior Member

    Messages:
    131
    Likes:
    75
    florida
    Surprised the daytime sleepiness isn't higher. I have very severe daytime sleepiness but yet I can't nap, dang it.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,410
    Likes:
    1,741
    Midwest, USA
    Yes, I would expect the daytime sleepiness to be close to the unrefreshing sleep. I can nap during the day.

    I assume that it takes a sleep study to detect Alpha-Delta Sleep Abnormalities and that they
    would be higher if everyone had a sleep study.

    Dang, every time I see the word yawn, I yawn.
  6. Banksy

    Banksy

    Messages:
    19
    Likes:
    7
    Dubrovnik/Croatia
    bad sleep was reason of my relaps after 12 years...ok its not i was recover but i was 50-60%...now im back on 20-30%. it started with wakeing and feeling of having stroke and dizzynest. that just killed my sleep...i dont have stroke feelings anymore but ill need time to recover damage, at least i hope.
  7. Wifi123

    Wifi123 Senior Member

    Messages:
    144
    Likes:
    29
    I have had a number of major surgical procedures and since then I've found it extremelyy hard to sleep. I use to go to bed at 9PM and sleep through to 8-9AM. Now I stay awake up to 11PM, because if I go to bed at 9PM, I will be awake at 1AM, and will toss and turn.

    I began to take Melatonin and I believe that it will help me as time goes on, and I am hoping that it will help my brain fog that drives me up the wall as well.

    When I am bad, I do take a 1/4 of a tablet (Stilnox), and it does give me a sound five hours without any side affects. But, I will only take it once a week or two weeks.
  8. szenn

    szenn

    Messages:
    92
    Likes:
    57
    London

    What helped you Jody? How did you sleep problems resolve themselves?
  9. CFS_for_19_years

    CFS_for_19_years Senior Member

    Messages:
    237
    Likes:
    205
    Washington State
    Obstructive sleep apnea treated with CPAP (improves with weight loss)
    Delayed phase sleep disorder (get sleepy around 2 am)
    Early morning waking due to beta-blocker atenolol (trying other blood pressure meds now).
    I use melatonin every night. Just so y'all know, most beta-blockers suppress melatonin production and throw a wrench into things:
    Influence of beta-blockers on melatonin release:

    http://www.ncbi.nlm.nih.gov/pubmed/10335905

    My unrefreshing sleep is NOT fixed with CPAP therapy and I need about 10 hours of sleep to feel my best.
  10. Jody

    Jody Senior Member

    Messages:
    4,014
    Likes:
    512
    Canada

    Hi szenn,

    I'm not sure how they resolved. It was a really gradual process. I slept whenever I needed to sleep, no matter when it was. I spent a lot of time resting. But I think that is something most of us do, so probably not the main factor.

    I think sleep issues improved as general health improved. I credit the supplements I was taking, the low carb diet I was on, and acupuncture once a month, over a period of several years.

    Lots of different supplements but main ones were and are vitamin B12, vitamin D, omega 3 oil, and a tincture from my naturopath. I avoid food that I have sensitivities for, like grains and sugar.

    I have used sleep aids off and on, but no sleeping pills or drugs. Valerian, melatonin and Bach's Rescue Remedy have all helped me sleep when I was having problems.

    There may have been other factors, these are the ones I know of.
    leela, Valentijn and Little Bluestem like this.
  11. seaflower

    seaflower

    Messages:
    38
    Likes:
    18
    After decades of insomnia due to CFS, I found something that will at least help get me into a deep sleep (along with the usual Klonopin that I have to take.) It is the amino acid L-Glycine. There is a Japanese study about it and it has been proven to get people into the deep mode of sleep.

    An added surprise for me, as I had experienced a virus about 2 years previously and it had left me with fibro. AGAIN, was that after three nights taking L-Glycine, the fibro was gone. Completely gone. Amino acids are a big factor in CFS for most of us and I'm getting very interested in what other ones I am deficient in. Just telling you this in case it helps someone.
  12. MichelleD

    MichelleD

    Messages:
    3
    Likes:
    2
    Las Vegas, Nevada
    Hi, I'm new to this forum/PhoenixRising. Found it through searching on MTHFR after finding out I'm homozygous. I haven't slept well my whole life. The only thing that gives me anything remotely close to sleep is klonapin. It's not completely restful and still wake up in the middle of the night, BUT I don't wander my house in the middle of the night wide awake or lay in bed waiting to fall asleep. Just start methyl B-12 and methylfolate this week. I have to say that my "morning depression" is almost gone and I feel calm, not wired and tired. I haven't been properly diagnosed for CFS or Fibro, but have the signs of both. Doctor's can be expensive and useless for this stuff, so I became my own doctor along with help from naturopaths about 7 years ago. Ironically I'm healthier now than when I saw doctors.

    I know there is a forum somewhere on here about MTHFR and will go read those posts. I just signed up here and came over to this subject, since it's been a life long battle. In fact, nobody in my family sleeps. It's crazy, but after genetic testing totally makes sense.

    Good luck everyone!
    peggy-sue and ggingues like this.
  13. Griffin

    Griffin

    Messages:
    40
    Likes:
    46
    London, UK
    I have three sleep disorders. I sleep walk. I have "periodic limb movement in sleep" known as PLMS, where my legs jerk and brings me out of deep sleep to almost waking, therefore poor quality sleep, and actually the worse one is sleep reversal (an extreme form of Delayed Sleep disorder. I cannot sleep at night at all, I can only sleep during the day. I've tried everything, as you might imagine, nothing works, or if something does then only for one or two nights and then never again. Sleep tablets have no effect on me at all. Oh yes, and of course I have, unrefreshing sleep.
  14. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    Taking magnesium citrate (and calcium to balance the magnesium and protect bones) helped me a lot with muscle cramps and twitches and accidentally throwing myself out of bed, @Griffin
    Griffin likes this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    7,020
    Likes:
    10,804
    Logan, Queensland, Australia
    Stop it! Its contagious! ;)
  16. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    :p

    "A yawn is quite catching, you know, like a cough... "

    Dr. Seuss. Over 110 years ago.:)
    alex3619 likes this.
  17. Cheesus

    Cheesus Senior Member

    Messages:
    216
    Likes:
    252
    I am voting all over wild dreams! If anyone could ever see into my head on a nighttime I am almost certain I would be committed to a psychiatric hospital. I'm not usually creative during the day so I have no idea where I come up with a troupe of wales vibrating to tribal music, only to pause lined up along the seashore and open up their tails in the manner of a carrier plane to reveal a infant school cloakroom guarded by roman legionnaires.

    If that sounds weird, the level of detail in the dream made it a whole lot weirder.

    EDIT: I'm not sure that even makes sense (or ever could) as I am very foggy. Describing it would be difficult at the best of times,
  18. Griffin

    Griffin

    Messages:
    40
    Likes:
    46
    London, UK
    Thanks. I did take magnesium citrate for a while (2 years), but for some other reason (low magnesium) but it didn't seem to make any difference to anything. I was supposed to have it injected but I passed out at the doctors when they did the first one (I don't normally pass out!) so they insisted I take it orally, which is not as effective. But thankss, it ought to work. Just nothing ever seems to work for me. <sigh> @peggy_sue
  19. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    Did they still inject you Griffin?
    They're not supposed to.

    (Doesn't make any sense to me - I wouldn't mind if they did it while I was out cold. :thumbsup:I do mind being stuck with needles while awake.:()

    I just take the tablets every day. They do help a lot, I don't get the cramps and crawly feelings of RLS nearly so often.

    And only the cat fell off her bed recently.
    (We struggled not to laugh, poor Pippin, as she carefully got up and pretended she'd done it on purpose:cat: )
  20. Griffin

    Griffin

    Messages:
    40
    Likes:
    46
    London, UK
    It was the injection that caused me to pass out. The most incredible pain shot up my thigh and just caused me to conk out. The pain lasted a few days and it was hard to walk. I discovered some time later, as I injected myself with B12 every night, that there is a spot on my thigh which if a needle goes in the precise point, the horrendous pain shoots up my leg. Injecting myself, I know exactly where it is and avoid it. The nurse must have hit the spot!

    I've fallen out of bed a couple of times. The last time I hit my eye on a sharp corner of the bedside cabinet and looked like I'd been in a fight for a week.

    I take codeine (on prescription) for RLS. Works for me oddly!

See more popular forum discussions.

Share This Page