The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Non Restorative Sleep

Discussion in 'General ME/CFS Discussion' started by Cubbies2016, Aug 9, 2016.

  1. Cubbies2016

    Cubbies2016

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    Hello,
    I'm new to the forum. I've been diagnosed with CFS/ME recently. My situation might be a little different as I was a victim of a severe adverse reaction to Lexapro last December. The severe anxiety left but the severe fatigue, cognitive impairment, head pain, boat feeling remain. But the worst symptom by far is the non restorative sleep. I can sleep 4 hours or 8 it's the same. I'm more tired when I wake up then when I go to bed. I live in a constant lethargic state. Just curious if anyone else is in a similar position. I read through many threads. It seems it's sleep deprivation might be more of a challenge than how restorative the sleep is. I would be ok with sleep deprivation. That might be able to be corrected by meds possibly. Nothing can be done for non restorative sleep from what I've discovered
     
  2. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I find that staying awake makes matters worse, I start seeing spiders, and just feel horrible. I avoid sleep meds because they have terrible side-effects, like for me, falling asleep but continually snapping awake each time. It seems while my sleep my not be restorative, it is still much much better than not sleeping at all. I so dread insomnia and medications that make me drowsy.

    I have a friend that took sleep meds and faced the situation where the meds didn't work for her anymore. While in a sleep deprived state, she kept taking more and more of the meds, and ultimately ended up in the hospital ER. Took her weeks to regain some semblance of normalcy after that.

    It is kind of the luck of the draw, meds might work for you, or against you. There are certainly many natural remedies you can try as you will find by exploring these forums.

    http://phoenixrising.me/treating-cf...mecfs-and-fibromyalgia-alternative-sleep-aids
     
  3. CCC

    CCC Senior Member

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    Non-restorative sleep along with hypersomnia was one of our first symptoms.

    It has improved with a high-dose B12 + B2 regime (along the lines of the Freddd approach). It's complicated to do, but things a less bad for us.
     
  4. Cubbies2016

    Cubbies2016

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    Thanks CCC. Who is "us"? The forum?
     
  5. svetoslav80

    svetoslav80 Senior Member

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    I have non restorative sleep due to prostate pain issues, but not every night. I sleep well some nights. Maybe you could help your condition if you are able to exercise a little. I don't mean to run or something, but just half an hour of walking (maybe more if you're able to). It should make you tired enough to have a good restorative sleep after that.
     
  6. Antares in NYC

    Antares in NYC Senior Member

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    Hello Cubbies2016,

    Unfortunately I have to report that non-restorative sleep has been one of my main symptoms since day one. It's also one of the worse symptoms I experience, in addition to neuro-cognitive, memory, and fatigue issues.
    All that you explained matches my sleep patterns: more energy before bed than waking up, the sensation that no matter how much or how little you sleep, you always wake up like were hit by a train, in a constant lethargic and brain-foggy state during the day.

    I do take a number of prescription sleep medications that I rotate to avoid habit (lunesta, klonopin, etc). They help somewhat with the process of falling sleep, but they do nothing about waking up unrested, unrefreshed, and frankly exhausted.
     
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  7. Cubbies2016

    Cubbies2016

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    Antares,
    May I ask what brought your CFS on? How long? Are you on disability? Part of me wonders if the meds keep us from entering into the deep sleep. But I saw on my sleep study results I do get deep sleep. They said though my sleep was poor my results were better than most that go in there. My sleep cycles were ok. I have read where some people get zero slow wave or zero REM sleep and are fine. And here's me with all the phases intact and I can't even walk or read. I am seeing a different sleep doctor who also is a neurologist so hopefully he has some answers. I doubt it though
     
  8. CCC

    CCC Senior Member

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    My son. He takes the royal 'we' when i'm talking about him on PR.
     
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  9. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    All of our situations are a little different, but it is not unusual for someone with ME/CFS to react badly to anti-depressants. It sounds like your reaction worse than some.

    I too have unrefreshing sleep. I sleep quite ’soundly’, but when I wake up I sometimes feel worse than when I went to bed. Sometimes laying in bed awake, resting while listening to the radio helps a little.

    I am glad that your next sleep doctor is a neurologist.
     
  10. Cubbies2016

    Cubbies2016

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    I did see that neurologist. Incredibly, he suggested I go back on an anti depressant after I explained I got CFS from an adverse reaction from one. When I asked him how a anti depressant is going to help me head pain, fatigue, severe cog fog, etc he had no response. It seems we are written off to depression which means to me that they aren't listening and suggesting these symtoms are all in our head.
     
  11. perchance dreamer

    perchance dreamer Senior Member

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    I've written of this before, but I always like to tell people that if they have both insomnia and nasal breathing problems to do what it takes to get their noses working better. The sympathetic nervous system is kept overactive if you can't breathe well through your nose. If you can't breathe well you can't sleep well.

    My sleep improved quite a bit after I had sinus and nasal surgery to improve my breathing. Of course, only a subset of insomniacs have nasal breathing problems.
     
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    I am so sorry. :aghhh:
     
  13. caledonia

    caledonia

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    I suggest checking your adrenals with a 24 hour saliva cortisol test.

    I've also had the misfortune of a reaction to an SSRI (aka SSRI withdrawal or discontinuation syndrome). This syndrome can happen any time you start, stop or change the dose of a psych med. By far the worst symptom is a horrible form of anxiety/agitation called akathisia.

    I got my adrenals tested while this was going on. My adrenals had gone from a severe adrenal fatigue state (nearly zero) to five times higher than normal. It was literally going off the top of the chart.

    It's possible you could have adrenal fatigue from the aftermath of this. Therefore, treatment for adrenal fatigue could be helpful. Make sure you do the testing to confirm this first before attempting to take things like adrenal cortex extract (a hormone).

    If you have adrenal fatigue, you will also be losing electrolytes like crazy, causing things like muscle twitches or restless legs that will screw up your sleep. You may be having this and not even realize it unless you get a sleep study. If you have this, supplementation with magnesium and/or potassium and/or sodium should help various symptoms.

    The other thing that could be happening is psych meds mess with your neurotransmitters. It can take quite awhile for your neurotransmitters to readjust back to normal. Sleep is regulated by two neurotransmitters - serotonin and melatonin.

    So my other suggestion would be to see what your neurotransmitters look like, then supplement accordingly with 5htp, melatonin or whatever else might be required.

    There is an all one one test that does both cortisol and neurotransmitters called a neuroadrenal profile. I've used this test and site before. http://www.integrativepsychiatry.net/neuroadrenal_profile.html

    The other possibility is the Lexapro may have caused mitochondrial issues. This seems to be more rare for Lexapro than for some of the other SSRI's, but not totally out of the realm of possibility.

    My other suggestion would be to check in with the Survivingantidepressants.org forum. See if you can find other people with similar issues and what worked for them.
     
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  14. PennyIA

    PennyIA Senior Member

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    My own sleep study was 'textbook perfect'. :cool:

    I'm assuming that (not unlike a lot of other things) whatever it is that makes my sleep unrefreshing isn't something that shows up on typical tests, or they see it, but don't recognize it as being meaningful.
     
  15. lnester7

    lnester7 Seven

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    you should have a sleep study. Pay attention to sleep stages, they ignore those but you will find that a lot of cfs patients do not have good stage 4 (restorative sleep stage), I use trazadone a sleep 4 inducer drug, there are many stage 4 inducers drugs. Is not habit forming. I have been on sleep inducers but I wake up every 2 hours unless I use medications. I ended up w sleep apnea too (develop post cfs). So between the CPAP and the trazadone I feel rested now when I wake up.

    Without repairing sleep one never will never get better and new things will pop up.
     
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    This can happen if your sleep specialist is not a neurologist. As Inester7 noted, they ignore sleep stages.
     
  17. Beyond

    Beyond Juice Me Up, Scotty!!!

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    Have been really considering exploring this. I think you brought forth a good point.

    Arent those surgeries very painful? Some people have even reported no improvement after them.

    What were your issues in medical terms? Deviated septum? I think I have that one.
     
  18. Beyond

    Beyond Juice Me Up, Scotty!!!

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    When you have true unrefreshing sleep from autoimmunity or some other fiendish disorder walking is, quite frankly, a joke. It helps a bit with the feeling of being caged in your own house though, if you feel not-so-hideous that day and can drag your decaying body outside.
     
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  19. perchance dreamer

    perchance dreamer Senior Member

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    @Beyond, I've had several nasal and sinus surgeries and haven't found them painful. However, you wake with packing in your nose, and that is fiendishly uncomfortable not because of the packing itself, but because you can't breathe at all through your nose while it's in place, and we have such strong instincts for nasal rather than mouth breathing.

    It varies how long you have to leave it in. When I had sinus and nasal surgery last year, I only had to have the packing in place 24 hours. I removed it at home, as instructed. Nasal packing is kind of like a tampon for your nose.

    The other thing that is uncomfortable is that you have to go for a period of time without blowing your nose or doing sinus rinses. That is really hard to do because there's so much clotting and gunk post surgery that you long to flush it out. It's important not to disturb all the gross stuff so you can heal. But it's not that long before you can blow your nose gently and resume sinus rinses.

    I wrote about my experience last year after I had the surgery in November. Here's a link:

    http://forums.phoenixrising.me/inde...us-congestion-and-insomnia.41873/#post-676872

    So if you don't breathe freely through your nose, I'd see the best ENT you can find to evaluate your breathing. If he or she suggests a sinus CT, ask to see the swell body view when you go over the results.
     
    Beyond likes this.
  20. invisiblejungle

    invisiblejungle Senior Member

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    Hi Inester7,

    What other stage 4 sleep inducers do you know of besides trazadone? Thanks!
     

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