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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Weird Paradoxical Sleep Pattern

Discussion in 'Sleep' started by FreudianSlip, Apr 9, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,150
    Likes:
    4,408
    australia (brisbane)
    A drug called cycloset which is a dopamine agonist is being used by some docs to resynchronise circadian rhthyms. It apparently stimulates cortisol release when taken in the morning and it works through the hypothalamus. Its action is supposedly to help reset our brains sleep/wake cycle??
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,150
    Likes:
    4,408
    australia (brisbane)
    Also i was using phosphatidyleserine(PS) to help lower night time cortisol and it greatly improved my sleep for a few months. But it did stop working, so i have taken a break from it and may restart it again soon. I think it has helped my sleep issues in a sort of permanent way in that once i get to sleep if i wake up i can generally go back to sleep. pre PS this wouldnt happen, so it seems to have helped me with maintaining sleep but i still have issues with initiating sleep.
  3. Ruthie24

    Ruthie24 Senior Member

    Messages:
    147
    Likes:
    261
    New Mexico, USA
    Funny that you said this because I was just thinking today that it seems like my nervous system/stress response modulation ability has been severely impaired. It seems like it's either full ON or full OFF but doesn't seem like there is much fine tuning in between those two states any more.
    FreudianSlip and soxfan like this.
  4. Ruthie24

    Ruthie24 Senior Member

    Messages:
    147
    Likes:
    261
    New Mexico, USA
    I find it one of the ultimate ironies that before I got sick with this "lovely" disease, I had a very regular yoga practice for 15 years and practiced "pranyama" (breathing exercises) regularly. When I had the infection that started all of this, I couldn't even tolerate a totally restorative yoga practice (where you are just propped up on bolsters/blocks/various supports, etc) without it putting me back in bed for a week. And, trying any of the breathing exercises immediately makes me lightheaded and feeling like I'm going to pass out- especially the slow deep breathing ones.
    Plum likes this.
  5. Asklipia

    Asklipia Senior Member

    Messages:
    596
    Likes:
    448
    The slow deep breathing is about the PNS.
    I found that all the practices that helped me were STRICTLY those of balance of PNS and SNS.
    That is, all practices that induce the middle response, which is what happens when the two nostrils flow together.
    This happens :
    - with cold exposure, CT as Dr Kruse advocates (http://www.jackkruse.com/cold-thermogenesis-easy-start-guide/)
    or Bains Derivatifs that I have used (http://forums.phoenixrising.me/index.php?threads/bains-dérivatifs.15574/)
    - with alternate breathing like Nadi Shoddhana. When you exactly stimulate one nostril after the other for about 15 minutes, you induce balance and you start getting a flow in both nostrils.
    - in all kind of activities like making love, concentrating like crazy, being terrified, being about to die, some drugs etc. And more.

    When you are breathing with both nostrils, this is considered as "useless" in yoga. Meaning that this is neither the time for action, nor the time for rest. Active and also restorative yoga do not go there. I found that they did not help me either when I was very sick. But practicing reaching that two nostril breathing state is what saved me.

    Lots of good wishes!
    Be well!
    Asklipia
    :devil: FFP :devil:
  6. Ruthie24

    Ruthie24 Senior Member

    Messages:
    147
    Likes:
    261
    New Mexico, USA
    Asklipia -Nadi Shoddhana is the one pattern I can still do, if I can get thru the initial 10 minutes or so that makes me feel awful.

    I think all the POTS, autonomic neuropathy etc I have are a clear illustration of how imbalanced the PNS/SNS are in my body. Still haven't given up on trying to find a way to balance them, but I'm having to explore paths I never imagined in my "former" version of this life.

    Thanks for the good wishes. Back at you!
    Be well!
    Ruthie24
    FreudianSlip and soxfan like this.
  7. Ruthie24

    Ruthie24 Senior Member

    Messages:
    147
    Likes:
    261
    New Mexico, USA
    Heaps- thanks for the names of those meds. May have to look into them. Need to get something like a normal circadian cycle restored since this last relapse totally reset it in a BAD way.
    heapsreal and soxfan like this.
  8. soxfan

    soxfan Senior Member

    Messages:
    663
    Likes:
    222
    North Carolina
    I go to bed feeling human too and wake up like you do....I am trying to figure out if it is adrenaline surges or high cortisol I am having at night. Is there a way to tell which is the problem or are they connected somehow.
    When I was first sick way back....my doctor had me take 5mg of cortef at bedtime because he said that would help replenish my adrenals overnight.
    I would do that again but if too much cortisol at night is the problem then I don't want to do that. I am not sure that is the case since I wake up extremely tired every day...

    Seeing my doc today and will report back what he has to say.
    ukxmrv likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,150
    Likes:
    4,408
    australia (brisbane)
    Im going to speak to my doc about it on monday. Im thinking a combination of cycloset in the morning and at night phos serine, melatonin, 5htp and if one needs meds then take them. Once feel like one is in a good sleep cycle then look at dropping the sleep meds. SOmething else i think that may help me is im looking at testosterone replacement therapy and using transdermal cream to help mimick our natural secretions which is suppose to be high in the morning and low at night. So i think if we can control as many of these cycles and resynchronize them so they are all on and off at the right time then maybe we can get somewhere.:sleep: just a theory at this stage.
    Ruthie24 and FreudianSlip like this.
  10. soxfan

    soxfan Senior Member

    Messages:
    663
    Likes:
    222
    North Carolina
    Had my doctor appt...he is repeating all the saliva cortisol testing and urine neurotransmitters. When I wake up at night with the "adrenaline" pumping I am to do the urine test. I have to stop all supplements prior to doing the testing. I have no idea what the point of all this is but will do it anyway. He is sending me to another doctor that specializes in these types of adrenal issues.
    ukxmrv, Plum, Ruthie24 and 2 others like this.
  11. Plum

    Plum Senior Member

    Messages:
    356
    Likes:
    189
    UK
    Hi Ruthie24 - the thing that springs to mind is this issue of making sure your exhalation is longer than inhalation. And maybe don't breathe so deep. If I inhale now lets say I count to 7 and then I make sure that I exhale for a count of 11. If we inhale too much this can make us lightheaded. Look into the whole Bohr argument for this as it explains how increasing carbon dioxide actually helps push oxygen into our cells. I find Pranayama can be too slow and deep for our bodies to handle. Try out various counts if inhale/exhale and see what works for you without making you worse.
  12. Ruthie24

    Ruthie24 Senior Member

    Messages:
    147
    Likes:
    261
    New Mexico, USA
    Plum-Thanks for the reminder! I played with it in the past, but have to admit I have kind of given up in frustration after 3 years of not seeming to see improvement with it. But, I loved how it all used to make me feel, so I will try again. Thanks for the inspiration.

    FreudianSlip- sorry! Didn't mean to hijack your thread into a discussion of yoga breathing techniques. My apologies!
    Plum likes this.
  13. No Problem...I find all the information very interesting.
    ukxmrv likes this.
  14. DanielBR

    DanielBR Senior Member

    Messages:
    152
    Likes:
    435
    Germany
    Hi...back to the paradoxical sleep pattern. I noticed the exactly same thing. The better I sleep the more awful I feel the next morning and vice versa. I have no idea why this is the case. But sometimes after a bad night with a lot of insomnia I have a real good morning and I feel like a normal person for a couple of hours. The better I sleep the more it feels like being hit by a Truck. All my muscles and my joints feel quite achy and numb and my brain is really foggy. I have to walk around for nearly an hour to loose that horrible feeling. I also noticed that I sleep very bad after I crashed. My sleep then is very shallow and I have a lot of crazy, confusing and weird dreams, which are connected to everything what is going on around me. It feels like my brain is stuck between awake and sleep. A lot of times I have to go to the toilet at night, because my bladder feels full, but eventually is not. The last unusual thing I noticed is that it seems to be my body wants me to sleep until noon and don't want me to fall asleep till three or four at night. Everytime I tried to push myself to a normal rhythm I got worse. In my opinion the ANS is completely out of control or does't function properly and the body has huge problems to maintain the circadian rhythm. It is a nightmare in every sense. ​
  15. soxfan

    soxfan Senior Member

    Messages:
    663
    Likes:
    222
    North Carolina
    There are also times when I wake up in the morning and feel as though I have woken in the middle of a sleep cycle and I feel horrible. It makes me feel very out of it and wierd and it lasts all day long. It is hard to explain but when it happens it makes for a very uncomfortable day. I usually give in and lay down for a couple hours to try and get rid of the feeling. I am not sure why this happens sometimes and not others because I take the same sleep meds every night. I agree that it is ANS dysfunction when I sleep. I feel as though I have no control over my body at all and just never know how I am going to feel in the mornings even if I think I have sleep fairly well.
  16. vli

    vli

    Messages:
    1,733
    Likes:
    1,788
    CA
    [quote="ukxmrv, post: 347222, member: 539"Feel relaxed at night but still get the broken sleep and wretched mornings.

    Does anyone know what it the physical sytem overnight that rests the cortisol? I go to bed feeling almost human but have that cortisol slump over night that results in my "living death" mornings.[/quote]
    Gosh this sounds like me exactly... from your many posts ukxmrv i feel our problems are quite similar :-|
    ukxmrv likes this.
  17. Bradford

    Bradford

    Messages:
    18
    Likes:
    3
    Yep. Same here. More sleep (with or without meds) makes me a non-functional zombie the next day.

    I hate that I have such broken sleep. I feel bad the next day, but I feel freaking awful if I do have a great night sleep (which is almost never now).
    ukxmrv likes this.
  18. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    225
    Likes:
    5
    has anyone found anything that helps sleep, exhaustion? I tried cpap but it failed to treat my central apneas I think so I switched to asv. I was able to get some progesterone cream and diamox but I don't think it cures me and diamox reduces cereberal/spinal fluid. the sleep apnea really destroys your endocrine system and brain and gives you fog and memory problems

See more popular forum discussions.

Share This Page