The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Wake up several times a night

Discussion in 'Sleep' started by overtheedge, May 10, 2017.

  1. overtheedge

    overtheedge

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    First off my sleep phase is way off, I can't keep it constant, for 3 months i woke up everyday between 7-8 AM but only got worse and worse because I only start to feel sleepy after I've been up a full 16 hours and then it takes a while to get to sleep so I would become more and more deficient in sleep. That's just the background

    Anymore I just sleep whenever, feel terrible if i sleep less than 8 hours a night. I wake up several times each night and have to use the restroom, usually two or more times.

    That itself isn't much of a problem but I'm wondering if it could have something to do with the nature of the CFS that I have, do these symptoms mean anything to anyone?
     
  2. hellytheelephant

    hellytheelephant Senior Member

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    If you are a female anywhere between 35-55 , it could be part of peri/menopause- disturbed sleep is a classic symptom.

    P.s you have my sympathies- having disturbed sleep night after night is like a form of torture.
     
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  3. Old Bones

    Old Bones Senior Member

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    @overtheedge The symptoms you've described don't "mean anything" to me in the context of my being able to medically explain why you are experiencing them. But, they are very familiar. For the most part during my almost 30 years with ME/CFS, I've rarely felt "sleepy" according to my definition -- feeling inclined to fall asleep. But, I've often felt fatigued, and even exhausted -- more the "tired but wired" situation that is common in this illness. Paradoxically, the only times I've experienced feeling sleepy were while following the sleep restriction protocols recommended by sleep specialists in an attempt to improve the quality of my sleep. Then, it was almost impossible to keep my eyes open (similar to being severely jet lagged).

    Perhaps this comparison of "sleepy vs tired" applies in your case as well:

    "It may not seem this way on the surface, but to a sleep doctor there's a big difference between someone feeling "tired" and someone feeling "sleepy." Tired means you lack energy, have trouble focusing, and feel "out of it" all the time. Sleepy means you're yawning, nodding off, and can't keep your eyes open."

    I feel terrible on awakening no matter how many hours I sleep at night, and it usually takes me a few hours to feel awake. I typically feel better throughout the day if I slept solidly for at least 10 hours the night before. By solidly, I mean no more than one short-duration awakening during the night.

    I can also relate to your waking up several times each night, having to use the restroom. Although in my case, up to three times per hour, or more than a dozen times per night, was the norm in the early years. These days this is less of a problem, but it does worsen during periods I am less successful at pacing my activities.

    Regrettably, you may be correct that the sleep pattern you're experiencing is part of the nature of CFS. Although, no doubt, there are other possible explanations.
     
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  4. caledonia

    caledonia

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    I'm going through this (again) myself, so I commiserate.

    #1 are you getting off all screens (computer, tablet, phone, possibly tv) several hours before bedtime?

    The reason is they emit blue light which tells your body to wake up. The body expects blue light in the morning to wake up and amber light in the evening to fall asleep.

    I have to get off the computer no later than 8pm or my sleep cycle starts to move forward. It's a little tricky to recognize because if I'm on the computer late Monday, it won't affect my sleep until Tuesday. Other people might be more or less sensitive and might have a different time they need to get off.

    #2 are you taking any medications that deplete serotonin, melatonin, B vitamins, magnesium, etc. You can find out by googling the name of your medication and "depletes" or checking a book like Drug Muggers. The B vitamins help make neurotransmitters (like serotonin and melatonin which are used for waking and sleep).

    In general, if you're having trouble getting to sleep, you can try some melatonin. Magnesium may also be helpful for sleep, especially if you have restless legs/periodic limb movement disorder. Clues of deficiency are muscle cramps or twitches and heart palpitations. If you have this and CFS you may also have adrenal fatigue, which causes electrolyte depletion.

    If you're having trouble staying asleep, it could be caused by napping in the daytime, twitching feet or legs, snoring or sleep apnea, the room isn't dark enough, quiet enough, cool enough, etc.

    There are some phone apps that can somewhat help determine what might be going on during sleep (they record snoring, movement, etc.) Or it might take working with a sleep doc and a sleep study to sort it all out.
     
  5. ahmo

    ahmo Senior Member

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    My long-term sleeping difficulties stopped once I had adequate B12 levels. And before that, when I was unable to use any other sleeping med, I found pituitary glandular very helpful. Hope you get to the root of your problems.:sleep:
     
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  6. Mesurfer

    Mesurfer

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    I have sleep problems too. I feel like crap all morning and day and then nighttime is when I feel like half of a human being and that's when I'm supposed to take my meds to fall asleep. So at 2 am when I'm feeling good and alert I take ambien ect.. then I wake up a couple times as in WIDE awake then doze off for an hour and the back up again.... I usually accumulate 6 hours per night.. no wonder I feel disgusting in the morning, and then I get to do it all over amgain every day... I would imagine many here know this routine all too well.... your not alone on this one..
     
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  7. caledonia

    caledonia

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    That's a typical adrenal fatigue pattern. Your cortisol could be low in the morning when it's supposed to be high, and a bit higher at night when it's supposed to be low.
     
  8. caledonia

    caledonia

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    What was the name of the glandular you used? I think my adrenal issues are more hypothalamus/pituitary signaling issues, than an actual adrenal issue. But the downstream adrenal issues are still affecting sleep.
     
  9. Kati

    Kati Patient in training

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    Hello @overtheedge, a few comments here.
    1) how long have you been sick for?
    2) are you taking any sleep meds?
    3) do you have conditions or factors involved in getting up to pee at nght? (Ageing, diabetes, gyne issues, prostate issues? Have other conditions been ruled out? Do you drink a lot at night?
    4) perhaps considering a formal sleep study would be helpful as we know patients with ME have more arousal time, less deep sleep, and it can also detect sleep apnea. There are also sleeping tracking devices that can help in

    Just a few questions which could explain your sleeping difficulties. You don't need to answer them here if you don't want to.
     
  10. Mary

    Mary Senior Member

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    i'm interested too in the name of the pituitary glandular you took -
     
  11. overtheedge

    overtheedge

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    I don't have much trouble with getting to sleep in the first place usually so I suppose computer screens and whatnot aren't my issue

    not on any prescription meds and this has been going on since before any of the supplements Im currently taking

    could be sleep apnea, don't have a smart phone, what would be the easiest way to test for it, not that I wouldn't do a sleep study if i thought it would help it just sounds like a hassle

    been sick with CFS on and off for something like 15 years but the past 7 years or so it has been decently consistent although I've had two times where ive gotten back to health and then immediately started working only to have my health crash again
    I'm not aging, don't have prostate/gyne issues, no diabetes, don't drink too much at night
    What sleep devices do you speak of, i'm interested

    just sent out some tests for B12 levels and other things that indicate B12 levels, I do take a decent bit of it each night, have been considering B12 shots as a lot of doctors I respect seem to advocate them for CFS but haven't gotten round to it
     
  12. Mesurfer

    Mesurfer

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    Yes, I have been told this in the past, I once tried Cortef and thought I was cured but it only lasted a few months. I'm thinking about giving it another try but naturally this time, adrenal extract, licorice root ect...
     
  13. Mary

    Mary Senior Member

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    I've used adrenal glandulars for many years and do well with them. Over 10 years ago I had severe middle of the night insomnia and the adrenal stress index test indicated my cortisol was high at night. I was given Seriphos (phosphorylated serine) which helped almost immediately. I found that it worked best when taken I the morning, taking it at night caused crazy insomnia. It didn't make me tired during the day, but I did feel better able to handle stress. I found the right dose by titrating up to it, and after some months found I was getting extra tired and realized I needed to cut my dose. If you do decide to try Seriphos, make sure you get the one that says "original formula" - they changed the formula for about a year, it did not work nearly as well and they finally went back to the original one (phosphorylated serine)
     
  14. lnester7

    lnester7 Seven

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    I do not have adrenal fatigue but I have a stage 4 issues (Prevalent in CFS). I have to use a stage 4 inducer (to stay sleep); in this cases nothing works that is a sleep inducer: Most pills and natural remedies are inducers not sustain the sleep type.
    I use trazadone.
     
  15. Mary

    Mary Senior Member

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    I think it can be related to ME/CFS. It seems that most of us on the board have adrenal issues of varying kinds, lots of us have trouble sleeping. I'm not saying that all sleep issues are related to the adrenals, but many are. Here are some things that have helped me sleep for the past many years. I suggest trying only one thing at a time, so that you can know what is doing what to you.

    Niacin (the kind that makes you flush)
    l-theanine
    melatonin
    inositol
    l-glycine
    5-htp

    Most recently I've been trying calcium pyruvate and reseveratrol. I've been dealing with severe insomnia related to a lorazepam taper (low-dose, but long-term) and the calcium pyruvate and resveratrol are glutamate scavengers. I am having mixed results - taking them together was too much, left me tired and drugged, so am now playing with dosing etc. It's a work in progress! :eek: Good luck ---
     
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  16. Basilico

    Basilico Florida

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    My husband and I have both had this issue off and on for years. We've followed every sleep hygiene recommendation to the letter and it never made a difference.

    Overall, my sleep is pretty good, but I've had periods of time where for 1-2 months out of the year I was living in a remote mountainous area on a property (60+ acres) my family owned...no internet, computer, tv or really any blue light in the evening, and I was outside in the sun during the day...and every time I was up there, my sleep quality would suffer tremendously, I'd get terrible insomnia. As soon as I would return home to my apartment where I'd be on the computer/watching TV until bedtime, my sleep would get dramatically better. So try any sleep hygiene recommendations you haven't already tried, but if they don't work, don't stress about it, they don't work for everyone.

    I fall asleep really well if I have a tv show playing on my computer in bed that I can fall asleep to (though I usually don't need this). Have you ever fallen asleep with the TV on? When I can't sleep, if I put the tv on, I often fall asleep quicker. I know this doesn't work for everyone, but might be worth a try.

    As far as the waking up multiple times throughout the night, that seems to happen to us when we are in a period of feeling worse. In the past, we've linked this issue to specific supplements. The last time I tried taking vitamin D, it made me wake up all night long to pee a bunch of times, and the same thing happened when my husband and I were taking a multivitamin sold by Yasko during our methylation protocol.

    You said this has been happening since before you started any of your current supplements. Did you stop taking any vitamin, supplement, or medicine shortly before this issue started? Did this sleep issue change at all after you started any of your current supplements?

    Certain foods/drinks might be having an effect on your sleep. My husband suspects that eating cheese with dinner causes him to have crappy sleep, and he's done a bunch of experiments to see if it was the cheese, but the results were often inconclusive. At this point, we're thinking there might be a cumulative effect, perhaps he can eat a certain amount if he takes breaks. Did you start/stop eating or drinking anything when this started? Do you notice this issue being particularly bad after consuming certain things? Have you tried keeping a food/drink diary to see if you can find a pattern? Sometimes it's hard to see a pattern unless you have things written down.

    You mentioned that you don't have diabetes. Have you tried having a high protein/fat snack before bedtime? This sometimes helps my husband. He doesn't have diabetes, but he noticed that by having a low carb snack before bedtime often helps him to sleep through the night without waking up a bunch of times. The constant waking up could be related to drops in blood sugar, even if you don't have diabetes.

    Do you consume any alcohol or caffeine? Alcohol, even in small quantities, destroys my quality of sleep - I have to consume it before dinner, otherwise I will either wake up constantly, not fall asleep at all, or wake up at like 3am and not fall back asleep. Other people have similar issues with caffeine, though I am immune to caffeine, so it doesn't affect me at all. Some people are so sensitive that even tea or a soda in the afternoon will ruin their sleep.

    If you've exhausted all of these possible causes, it might just be something you have to wait out...which I know sucks. In the meantime, have you tried taking something temporarily to help you sleep (even something like benedryl or baclofen)? Perhaps if you can get a few good nights of sleep, your body will eventually stop doing this. I know for us, even when it's bad for a few weeks, the problem disappears just as mysteriously as it starts, so there is a very good chance that it is a temporary issue.
     
  17. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello. Not wanting to be irritating here but wanted to make a small suggestion here to help you out in the future and then expand if I may:

    Firstly, cortisol should not be high in the morning. High morning cortisol is a sign of low blood sugar (stress on the body) or some other abnormal process that needs to be ruled out. Cortisol levels (in the absence of a stressor) should be within range in the morning. Perhaps you meant, cortisol levels are highest in the morning Vs at night? As this would be the case.

    Secondly, I would advise anyone with ME CFS trying to get help for their adrenal function that is 'off' to try to avoid using the term 'Adrenal Fatigue' as doctors will treat you negatively. In medicine, cortisol is either low normal or high. Doctors usually raise eye-brows if they hear patients say things like 'Adrenal Fatigue' as naturally, they want evidence of the claim which is understandable. As is stands, there is no direct evidence of 'Adrenal Fatigue' per se (without extensive testing of things like Thyroid and nutrients that help support adrenal function), but, these are rarely performed and indirect. Due to this, the medical profession will largely be hostile to patients who use this term, so be careful who you share the concept of 'Adrenal Fatigue' with.

    Lastly. In ME CFS the universal problem (there are always exceptions) isn't with our adrenal glands, it's in our brains. The brain in ME CFS unfortunately allows us to be become overwhelmed by stress and does not 'fire' cortisol in time to protect us from it. This makes us think we have pathalogically low cortisol at times of stress, when we largely don't, we have a triggering and management problem from HPA axis dysfunction, probably due some kind of inflammation. In hospital based testing (Short Synacthen test) we tend to have low normal cortisol but still sufficient. It does rise (after an injection of synthetic ACTH), but produces a classical 'blunted' response in ME CFS patients. In itself, doctors will ignore this finding as largely insignificant and give you a clean bill of adrenal health as technically they are right if limiting the investigation to the adrenal glands alone.

    Where they are mistaken, is they don't then don't advance onto other ways to measure cortisol brain utilization such as stressing your pituitary gland (Glucagon stimulation test) and then measure cortisol production this way, instead of activating your adrenal glands via an ACTH test only as mentioned above. If one had this additional test, you could get them to measure Growth Hormone (GH). In adult GH deficiency, cortisol production is impaired, as is utilization of glucose. What I'm suggesting is PWME CFS can erroneously put their 'low cortisol' and 'low blood sugar' issues down to ME CFS when in some patients, it's actually down to adult GH deficiency, and even worse patients have no idea because they get blocked from the test because their IGF-1 comes back normal. Then they are incorrectly told they don't have GH deficiency. This is incorrect though and we can have GH deficiency with normal IGF-1. In addition to IGF-1 there is also a marker called IGF-BP2 and IGF-BP3 to look at which is rarely investigated due to cost. A single GH blood test by the amateur ME CFS patient forced to play doctor is useless to asses GH deficiency unless trying to rule out high GH. What is more useful is a 24hr urine GH test, available from ELN lab in Holland (Europe) or via their American Lab. With this test, you must get some sleep to maximise GH as GH is produced in certain stages of sleep in bursts (don't drink at night or a few hours before bed), as if you don't sleep the test won't be as accurate if you're up all night peeing, it will be falsely low. Getting a result back of low 24hr urine GH may explain odd cortisol symptoms that aren't true deficiencies that endocrinologists demand. What it doesn't do is prove you have GH deficiency, and you may instead have a sleep disorder. Still, with low 24Hr Urine GH you may then be able to progress onto a Pituitary Stimulation (Glucagon Stimulation test, or similar) and at least see how much GH your produce. If it's really low, then you might feel a lot better on GF injections, if deemed suitable.

    In addition if you wanted to investigate cortisol issues fully when you've thought of everything else 'conventional', I would do the following tests most people don't think of:

    Adrenal CT scan
    Adrenal Cortex Antibodies

    I'm sure they will be normal, but if they aren't, then having something like atrophy of the adrenal glands (found in some ME CFS) might be interesting as well as having sub clinical low cortisol via the presence of adrenal cortex antibodies.

    Hope that wasn't too much like preaching to the choir, and apologies if it was.
     
    Last edited: May 11, 2017
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  18. caledonia

    caledonia

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    I was taking this multi too at one point. I read the ingredients carefully and found out it contained small amounts of adrenal stuff which could be stimulating for those who are sensitive (sorry I can't think of the exact word I want). Astragulus and ginseng. It also contains phosphatidylserine, which could do the opposite.

    Edited to add: adaptogens was the word I wanted o_O
     
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  19. santi

    santi

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    Did you check that there isn't high electromagnetic radiation where you sleep?
     
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  20. Orla

    Orla Senior Member

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    Hi Over, I have been having similar problems for a year and a half now and it is doing my head in. I can cope with a degree of sleep reversal, and actually function better if my sleep pattern is a bit "off", but the waking up thing, and sleep-deprivation, is head-wrecking.

    My problem was that I would wake up after about 4 hours sleep (sometimes a bit longer) and either not get to sleep again at all, or it would take me hours to get to sleep again and by the time I woke up a lot of the day was gone, and I generally wouldn't feel right for the rest of the day. If I didn't fall asleep again it was even worse, as I just was like a zombie for the rest of the day, and it didn't help get me to sleep earlier the next night.

    I was on Prothiaden for sleep when the issue started, and had been for years and had found it good. I was on a low enough dose so increased it a few times over a year and a bit. This would help slightly for a while but eventually the problem would re-emerge and get worse and worse until I increased the dose again, and then it would improve for a while but never go away.

    Finally a few months ago I switched to Amitriptyline. This was a lot better initially for sleep, but on the third week the same thing started happening. I was on a low dose at this stage (10mg) but I didn't go for an increase in dosage, as I put up a lot of weight in the short time I was on it (8 pounds in 3 weeks :eek:, most of that in the last 2 weeks), and I was ravenously hungry on it. I decided to come off it to try something else. I had put up a lot of weight on amitriptyline a few years ago, but was never 100% sure it was the drug as my diet was not the healthiest at the time. This time I had a really good diet and fairly stable weight. It took me over 3 years to lose the weight I had put up on amitriptyline before and I couldn't face going through that again.

    So now I am on Mirap but it is not going well so I'll see. Initially I thought it was going to be great but I've had more bad than good nights on it the last few days. I've only been on it 9 nights. I am gradually increasing the dose I am on, but I feel like I habituate to the higher dose really quickly. Mirap is notorious for increased appetite and weight-gain (it is actually prescribed for people with appetite loss, or who need to increase weight) which I am not keen on. I don't have an increased appetite yet though.

    I seem to feel either over-medicated or under-medicated on Mirap without much in-between. I haven't given up on it yet. I am not sure whether to increase my dosage again tonight as I slept badly last night, or to stick with the dose from last night (that was the first night I had gone up to that dose). I have a radio interview tomorrow (ME awareness stuff) so don't want to be either over-medicated or sleep deprived for it. Luckily the interview is in the evening so some time to recover from a bad nights sleep.

    Anyway that was a very long ramble, but that is my experience at the moment. I wish I had given up on the Prothiaden earlier as I really put up with the problem too long, and now I am running this experiment at my busiest, and most pressurised, time of the year with ME stuff. Hopefully I will find something to help in the next few months.
     

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