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Anyone else dread bedtime?

Discussion in 'Sleep' started by Misfit Toy, May 4, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

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    It's 1 AM here and after 2 weeks of limited sleep, I'm scared to go to bed.

    What will this night bring? Sleep brings horror into my life. I have pain, can't sleep, or I wake up with IC and frequent urination. Or, all of it.

    It's suddenly hot here. From 60 degrees to 85 degrees. Too early for this, which just messes me up.

    Will I sweat, wake up cold?...covers on, covers off. Nightmares.

    I hate bedtime. A night of horror.

    If you asked me what is the one thing (and there are more) that I need to make this illness tolerable...it's sleep. #1.

    Without it my pain skyrockets, I can't breathe right and mentally I'm a mess.

    I dread tonight...I am just going to assume I won't sleep. Hope makes it worse.
     
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  2. Eeyore

    Eeyore Senior Member

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    I don't think I really dread sleep, but I definitely have a hard time getting any. It's 2:20 am right now and I'm still wired. I will try to go to sleep soon. I've always been a night person anyways, even before I got ME, but now my sleep is always light and restless, with lots of tossing and turning. I rarely get up in the middle of the night and get out of bed, but I seem to half wake up every 15-30 minutes. I don't get much deep sleep.

    I saw Dr. Klimas speak once at a conference, and when asked to choose a single thing to try to accomplish for her patients, she responded that the single most important thing she could do for them was to get them a good night's sleep. I have tried so many meds for this over the years, and had some success, but ultimately the restful night's sleep remains elusive.
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    Ditto.
     
    oceiv likes this.
  4. L'engle

    L'engle moogle

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    Yes, that's why I'm still on here right now :)

    Also because I have to stick my feet in a bucket of epsom salts in order to get enough magnesium to attain sleep. My sleep actually wasn't too bad until I developed this vitamin d/calcium/magnesium problem. It's a weird side issue and If I do everything right within the shifting parameters of the mineral balance I can sleep, but if I get it wrong I can potentially lie awake till late into morning and have plenty of time to figure out 'what I did to mess things up this time'.

    Also I have to get the temperature right and not drink too much liquid and sometimes have to go to the washroom several times anyway, and my feet itch unless I coat them with coconut oil at least once, sometime more, and if I didn't have any thyroid triggers, coconut products or traces of caffeine I can sleep. So yeah, not too bad by ME/CFs standards but it would drive a healthy person crazy.

    And I still can't function much even on 9 hours sleep but less than that and it just deteriorates more.
     
    Last edited: May 4, 2015
  5. Misfit Toy

    Misfit Toy Senior Member

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    The rituals @L'engle. I know them well. I wish I could get Epsom salts to work. I give myself magnesium shots. Epsom salts do nothing for me. I wish that worked.

    I have to get my covers and sheets right, pillow propping up my pinched nerve arm, earplugs and Restasis in eyes.

    I also have to have protein before bed.

    Sometimes, like a child due to fear, I have to have a light on in my room. Fear. :cautious:

    No sleeping with another person, no sharing a bed. No noise. I used to love white noise. Now, I can't tolerate ANY noise. If I sleep with someone and they turn over, I wake right up.
     
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  6. dannybex

    dannybex Senior Member

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    Surprisingly, folinic (not folic) acid helps me sleep big time. I take 1 Folacal w/dinner (at about 9:45 or so) and then empty 1/2 a capsule under my tongue and hold it for about 15 minutes, then a 1/2 hour later I can actually sleep for about 6-7 hours, and sleep deeply. Don't wake up refreshed, but it's a start...
     
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  7. xptriado

    xptriado Senior Member

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    hey, have you tested salivary cortisol?
    years ago I was just like you! it got a bit better but never returned to normal. i was also afraid to go to bed for many months. as soon as i hit the pillow my heart started pumping.

    Have you taken something with hormonal impact, like birth control pill, finasteride, accutane...?
     
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  8. ahmo

    ahmo Senior Member

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    pituitary glandular was a big help for me. During the years when sleep was impossible, accompanied by a highly overactive nervous system, marijuana helped me to just lie there, even if I wasn't sleeping.
     
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  9. xptriado

    xptriado Senior Member

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    did it lower your prolactin? which brand did you take? i'm looking for such a supplemnet...
     
  10. Mel9

    Mel9 Senior Member

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    Yes I know that feeling. Sometimes antihistamines help. I hope you can get a good night's sleep soon
     
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  11. Eeyore

    Eeyore Senior Member

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    @xptriado

    I also experience something where as soon as I lie down to go to sleep, my heart starts racing, beating fast and hard. That happens whenever I lie down initially. When I as somewhat younger, I had to lie down for a carotid test, which didn't show any plaque, but showed abnormally high (2x normal) peak flows through the carotids, which was interpreted to be "due to cardiac cause" by the doctors at the time.
     
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  12. xptriado

    xptriado Senior Member

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    Interesting. Did u ever test for cortisol, angiotensin, renin, ecg?
     
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  13. Eeyore

    Eeyore Senior Member

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    @xptriado -

    Yes, my 24h urinary cortisol is very normal, am cortisol is also normal and has been tested many times by my endocrinologist. Angiotensin 2 was recently tested and was normal, as was angiotensinogen. Argenine vasopressin is very low as is aldosterone (both undetectable), so my endocrinologist has me on florinef.

    Echocardiograms (both resting and stress) for me are generally interpreted as normal by the cardiologists, although sort of in the "normal variant" category. I don't ever show diastolic dysfunction, arrhythmia, abnormal wall motion, clinically significant valve leakage, etc. The only abnormality that I get is a hyperdynamic left ventricle (my EF is over 80%) and mild left ventricular concentric remodeling. Essentially, it means my heart is pumping very hard, and the muscle cells have grown in response to this. My suspicion is that it is due to either abnormalities in fluid volume (which I do have, it was tested - probably resulting from the abnormalities in ADH and aldosterone) or vasodilation and venous pooling, which are thought to underlie many POTS cases. Serum serotonin, which is a vasopressor, is low.
     
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  14. *GG*

    *GG* Senior Member

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    I did not sleep well last night. Fell asleep on the couch a couple times, got up to go to bed. Figured I would turn on TV and it would help me sleep, seemed to do the opposite. Next time just going to turn on my sound machine and hit the bed. If I cannot sleep then, I will turn on the TV.

    I have been on Remeron since 2009, so I wake up feeling more refreshed than before, on Trazadone.

    GG
     
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  15. A zombie

    A zombie

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    i take folininc acid too. But i take in the beginning of the day, you think this helps you sleep?I take seeking health brand.
     
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  16. A zombie

    A zombie

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    i too hate bedtime as i can't sleep! :(
     
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  17. xptriado

    xptriado Senior Member

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    Have u tested mitral valve prolapse?

    http://www.mitralvalveprolapse.com/anxietypanicdisorder.html

    Have u tested nightime and morning salivary cortisol, as well as 17 OH Progesterone, progesterone, salivary dhea, dhea s, and deoxycorticosterone?
     
  18. Eeyore

    Eeyore Senior Member

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    I don't have mitral valve prolapse. That would long since have been diagnosed with a number of tests I've had.

    I'm normal on all the sex hormones (male). I've never tested progesterone or estrogen, but ACTH, DHEA, deoxycorticosterone, and testosterone are normal range. Never tested salivary cortisol, but 24h urinary cortisol gives you a very good idea of how well your adrenals are functioning, and mine seem to be doing just fine at producing cortisol.
     
  19. nandixon

    nandixon Senior Member

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    I can have a tachycardia thing that happens when I lie down, identified through 24-hr Holter monitoring as supra ventricular tachycardias (SVTs). It sounds very similar to what you're describing. It's uncomfortable enough that it would make it very difficult to go to sleep.

    In my case, I found that taking a sufficient amount of CoQ10 almost entirely prevents it. When my ME/CFS first started about 17 years ago, I only needed 100mg per day. (My CoQ10 blood level measured at 1/2 lowest normal, but whether that might be a direct cause of the SVTs is another matter.)

    Now I need 300mg (divided doses work best for me; too much CoQ10 is uncomfortably "wiring").

    We're all so individual, so who knows whether this might work for someone else.
     
  20. Misfit Toy

    Misfit Toy Senior Member

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    @ggingues -Remeron put a lot of weight on me. I think you said that you put weight on. I wonder if that could be the reason. That's the major side effect of Remeron. It never helped me to sleep.
     

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