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The Basic Sleep Poll

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

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My (yawn) sleep issues include

  1. Insomnia

    244 vote(s)
    68.7%
  2. Multiple Waking

    249 vote(s)
    70.1%
  3. Early Waking

    199 vote(s)
    56.1%
  4. Sleep Apnea

    55 vote(s)
    15.5%
  5. Restless Leg Syndrome

    88 vote(s)
    24.8%
  6. Unrefreshing Sleep

    314 vote(s)
    88.5%
  7. Alpha-Delta Sleep Abnormalities

    83 vote(s)
    23.4%
  8. Daytime Sleepiness

    192 vote(s)
    54.1%
  9. Wild Dreams

    128 vote(s)
    36.1%
  10. Sleep problems (yawn) I don't have any sleep problems

    19 vote(s)
    5.4%
Multiple votes are allowed.
  1. markmc20001

    markmc20001 Guest

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    not dreaming

    anybody else have a problem where he/she doesn't remember dreaming at all during the night? I can't really rememeber waking up feeling like I have drempt for years. On a rare occasion that I do feel Like I have drempt the previous night, I feel pretty rested and especially in a good mood the next day.

    Thanks
    Mark
     
  2. Freddd

    Freddd Senior Member

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    Hi Mark,

    That was me for decades. I started dreaming immediately the first night after I started methylfolate. Several others have mentioned that too.
     
  3. markmc20001

    markmc20001 Guest

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    ok

    thanks! time to try up the methylfolate then.
     
  4. faith.hope.love

    faith.hope.love Senior Member

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    This has been one thing that makes me question if I really have CFIDS or something else. (But nothing else really fits.) I sleep like a baby. I'm asleep within 5 minutes of hitting the pillow, I sleep soundly for 8 hours every night. I may wake up often due to frequent urination, but I fall back to sleep easily. I wake up without an alarm clock, feeling refreshed and alert. However, I'm tired again within 2-4 hours, and rely on caffeine throughout the day to keep me going. If I don't get enough sleep, I will have a flare by the end of the day. (Flares to me are flu-like symptoms, fevers, canker sores, sore throat, swollen glands, etc.) The more I sleep, the better I feel. If I overexert myself or stay up past my bedtime, I'll get blisters and/or ulcers in my mouth, but they disappear after a full night's sleep. So I consider that "restorative sleep." I'm not sure if that could be explained by CFIDS or not.
     
  5. spit

    spit Senior Member

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    faith.hope.love -- it's possible to have multiple things going on, too, of course. I don't generally have non-restorative sleep, either; I'm usually good for about an hour or two after I wake up. Then it's all downhill. Without my medication, I wind up needing 2 or 3 short naps over the course of the day just to function at all, and still need to go to bed by 9 or 10. I am sleepier than I can express, for much of the day.

    I'm actually being checked for narcolepsy (another diagnostic mess, by the way), which supposedly tends to have a pattern more like that than the "non-restorative" pattern in CFS, though of course real life patients have different experiences with it, too. And I certainly have some of the other symptoms, also, so it's certainly worth a good look for me.

    Remember that 8 hours of sleep isn't necessarily all quality sleep. One of the features of both narcolepsy and CFS is that overall sleep structure -- the time spent in various stages of sleep -- is messed up. Neither get enough deep sleep. That has major consequences for daytime sleepiness, immunity, metabolism, all sorts of things.

    My personal opinion is that if you're making sure you're getting plenty of sleep and you're still really sleepy all the time, it's probably worth talking to a sleep doctor if you can. Lots of sleep disorders are way underdiagnosed. And don't let them just check for apnea and send you on your way, either -- try to have a real life conversation with a real life sleep doctor.
     
  6. faith.hope.love

    faith.hope.love Senior Member

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    Well, in my case, I suspect that it's more fatigue than daytime sleepiness. I may feel like I've been hit by a train, yet if I lay down to take a nap, I wouldn't fall asleep easily, and it really wouldn't help matters. I'd just get a "sleep hangover" headache because I threw off my routine. I'm really deconditioned from so much bedrest. It's hard to stay active when staying active makes you sicker. Stimulants are the only thing that can give me enough "charge" to push through the day. I just try not to take anything close to bedtime.
     
  7. xlynx

    xlynx Senior Member

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    London, UK
    Hiya,

    I am so glad I saw this post. One reason I never belived that I had cfs was because I didnt typical associate myself with fatigue, sure I am tired but it is a wired tired and most of my main problems are over excited nervous system, vertigo and palpitations and strange hot sensations all over my body and I could never sleep no matter how much I knew I needed it I just felt liked I was plugged in to the electricity. Also PEM of course.

    My first symptom was terrible vertigo that I had for months before getting ill and have never seen anyone else mention that!

    So good to know others have similar sensations just makes me feel more normal :) I love this forum !!! (and everyone on it of course, it would be kind of lonely here otherwise :) )
     
  8. spit

    spit Senior Member

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    Yeah, I hear you -- sleepiness, fatigue, etc. can all be puzzling to work out. My experience with napping back before I got sick sounds a lot like yours -- taking a nap, if I even managed to sleep at all, would just throw me off into zombie-land for the rest of the day. Now, I really need them -- short ones, usually no more than 45 minutes. But again, my illness has a lot of features of narcolepsy, so that may be at least a chunk of my story.

    I am on provigil currently, which helps some with the sleepiness, but leaves me still feeling really physically fatigued and -- more mentally alert, but still physically half-asleep, if that makes any sense. It's of limited use for me -- I can take 200 mg and still need a nap an hour later. But it helps some, and it makes it clear to me that there are distinctions, at least for me, between various kinds of sleepiness and fatigue -- I'm still sleepy as hell, but at least I can read a book, which simply wasn't possible before the med. So I guess for me that it's really improving the attention span, but leaving other aspects of the sleepiness. Or something.

    It does interest me quite a bit that narcolepsy supposedly involves at least some feeling of refreshment upon waking, while CFS supposedly involves non-refreshing sleep, yet both diseases supposedly involve too little slow wave sleep. I suspect realistically that there's probably quite a bit of variation in both, but I don't know that I've seen any specific studies or anything on that.
     
  9. Jody

    Jody Senior Member

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    Canada
    xlynx,

    Boy, you are SO not alone in this one. :rolleyes:

    In my initial onset of CFS, as I look back now, I would say one of the major things happening was vertigo. But I wasn't dizzy so I never thought of vertigo.

    But I have heard vertigo defined as a "hallucination of the inner ear", meaning some of the bijillion little sensors are sending the right information to the brain about where we are, what we're doing, what position we are in,etc. -- and some are not. Brain and body get very mixed up.

    Before I realized this was vertigo, I'd have said I felt like I was peaking on an acid trip. Almost hallucinatory at times, and definitely psychedelic.

    It hasn't been my only symptom. I've had a million of them it seems, some for a time and then disappear, some reappear from time to time.

    But as I get a fuller understanding of just what vertigo covers and how it can manifest itself ... vertigo is probably THE symptom I've had longest, most consistently, almost non-stop for years, and I think it contributes big time to the brain fog stuff. And I'd say that along with brain fog, it has been THE symptom that has barred me from a normal life, more than any other.

    Vertigo.:eek:
     
  10. faith.hope.love

    faith.hope.love Senior Member

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    I take Provigil too, but only half a tab with a full meal, otherwise I get nauseated. And I have the same effect -- my MIND is alert, motivated, ready to go, but my BODY knows I'm tired. When the drug wears off, I always feel worse than before I took it. I try to just use it when I really need to stay alert, like long drives. Otherwise, coffee does the trick! :)
     
  11. Freddd

    Freddd Senior Member

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    I was on Provigil for several years. I found that 50mg in the morning was quite sufficient to keep me from falling asleep inappropriately, such as driving or at the dinner table and was antidepressant in effect. Anything more and I was totally wired. After starting methylb12 and my sleep normalized and I no longer needed Provigil I found I had to taper it slowly to avoid a severe rebound depression. Several years later methylfolate completed the job of normalizing my sleep.
     
  12. spit

    spit Senior Member

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    yeah, 50 mg for me does nothing. 300 mg/day -- split into two doses, one in the morning and one in the afternoon -- kept me from unexpectedly dozing off during the day, but I also started having anxiety issues. I was never anywhere near what you'd call "wired" from it, but my mind got started on this thought path of doom and terror over nothing for a bit, so I cut the dose back down to 200/day. Now, I often have to nap to minimize the chances of unexpected dozing, but that's better than the anxiety.

    I've been doing B12 injections for quite a while, FWIW, as I had a serious deficiency. It's never had an effect on my sleep or energy one way or the other, though correcting the deficiency did clear up a few of my early strange symptoms (weird vibrating sensations, that sort of thing).
     
  13. Freddd

    Freddd Senior Member

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    Hi Spit,

    The different forms of b12 have radically different effects. If you had cyanob12 or hydroxyb12 the effects are 1% or less of what some methylb12 does. However, methylb12 injections are variable based on differrences between mb12 batches that don't show up in lab tests. Sublingual mb12 of one of the two 5 star brands is a good 100x more effective than either of the two inactive forms, cb12 or hb12. Many people need the methylfolate for any b12 to be totally effective, or is some cases, effective at all.
     
  14. spit

    spit Senior Member

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    That stuff gets a bit complicated for me. I have enough strange reactions to my current b12 dosage that I'd rather not mess with it unless I have very good reason.

    I know you interpret those reactions as the systems essentially "kicking in", but I also interpret them as theoretically potentially arising from increased acetylcholine triggering lots of different cholinergic pathways both in the brain and in the peripheral nervous system. I bring this up because there are some signs that cataplexy can be worsened, at least in dogs, by increasing acetylcholine in the brain -- ACh is involved in the pathways that inhibit movement during REM, for example, and seems to play other roles in wakefulness as well. These are systems that are likely poorly regulated in narcolepsy.

    Now, I don't know that I have narcolepsy, but if I do, and if my muscle weakness is arising entirely or in part from cataplexy, doing stuff to trigger cholinergic pathways in my brain isn't something I want to do a lot of unnecessarily.

    This is also all my own conjecture, to be clear, and none of it is anywhere near shown to be true. But I came to this set of guesses after consistently strange paralysis reactions from my current b12, none of which, sadly, are accompanied by any increase to my overall energy or improvement to my sleep. The point is, without knowing more about exactly what I'm triggering that might be giving me these reactions, I don't personally want to mess with it more than I have to in order to keep myself from suffering from deficiency.
     
  15. faith.hope.love

    faith.hope.love Senior Member

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    Has anyone noticed Provigil causing fevers? I never know if it's the DRUG causing my fever, or if it's my CFIDS flaring because I'm running on false energy.
     
  16. spit

    spit Senior Member

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    I always have a hard time with that, too, actually. I thought I was getting a cold a while back, so I checked my temp, and I had a very mild 99.5-ish fever. Cold never really materialized, but the fever was on and off. I went on the provigil a week or so later, and I've had a recurring 99-something fever on and off ever since. But I don't know whether it's the provigil and I just was fighting a cold or something before that, or whether it's part of my underlying illness.

    Fever is listed as a potential side effect, FWIW.

    I have had my blood pressure and resting heart rate go up considerably on the provigil, it's worth noting. Sadly, some of us seem to just do that with pretty much any stimulant. I hope it doesn't rise enough to have to go off the med, because without it, my life is hell right now, even if the effects are relatively modest.
     
  17. Freddd

    Freddd Senior Member

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    Hi Spit,

    That's just the thing. Your strange reactions may be due to it being an inactive b12 in the first place. Also a person can be taking buckets of inactive b12s and still have hundreds of b12 deficiency symptoms. There is no assurance that the inactive b12 you take are actually doing what b12 does. Same with any folate except methylfolate.
     
  18. spit

    spit Senior Member

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    I just have no reason to think so. Serum B12, Methylmalonate, and homocysteine levels have all normalized, indicating that my b12 metabolism is doing just fine. I'll likely be having a spinal tap at some point anyway to check my hypocretin levels, and can maybe get them to check for signs of other CSF deficiencies then, but otherwise, I really have no reason that would personally lead me to mess with my current b12 regimen. Not without a far better understanding of what systems I'm actually messing with.

    I'm glad methylb12 supplementation has worked so well for some. I'm not comfortable fiddling with it at this time and given my particular circumstances.
     
  19. Freddd

    Freddd Senior Member

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    Hi Spit,

    Serum B12, Methylmalonate, and homocysteine levels have all normalized,
    I just have no reason to think so.

    Except for your many symptoms that could be b12 deficiency symptoms. These tests can only tell you how bad the train wreck is, not that there is any sufficiency. A person can have active b12 deficiency symptoms that respond to active b12s at over 1500pg/ml serum level, above the top end of the usual range in which they might say that anything over 200 is normal. uMMA and Hcy tell you if your system is crashed and burned in 2 specifc ways but not 600 other ones. And not one of them can tell you that you don't have a cerebral spinal fluid level deficiency. However, as you are having a spinal draw possibly you could have that checked. Unfortunately there are no standards set and they might be as meaningless as the other ones are if they were set. All those test results can not predict whether you will have responsive symptoms, or not responsive, to active b12s. That does have to be your choice. I certainly don't have any faith in the test numbers becasue they are so non predictive. Good luck.
     
  20. OurDayWillCome

    OurDayWillCome

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    I definitely have Apnea, and have been treating it for about 4 1/2 years. Treatment has helped, but has not 'fixed' me. When I had my study, I had no Stage 3 or 4 sleep (deep sleep) at all and very little REM. We need deep, restorative sleep!
     

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