Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Why are mornings so awful when in a crash?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by sueami, Feb 6, 2015.

  1. sueami

    sueami Senior Member

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    I feel dramatically better once its early afternoon, and wonder if there's anything I could do/take to make that improvement happen earlier in the day.

    Anyone know/have theories about what makes mornings so exhausted/jittery/anxious?
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I'm like that. It's pretty common problem with us.

    I've found nothing that helps. Just part of the loveliness that is ME.
     
  3. ukxmrv

    ukxmrv Senior Member

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    Have you had your cortisol and DHEA levels tested?

    I've been worse every morning since ME stuck as an acute viral onset illness. Then again my family are all night owls. The ME "just" made something much worse possibly.

    What happens before these crashes you have?
     
    Mij and CantThink like this.
  4. shahida

    shahida Senior Member

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    i'm really like that- i don't really know why but maybe it's something to do with the sleep mechanism is damaged so if i wake at say 7am it's the equivalent of a 'normal' person waking up at 3am. So i need to go back to bed again.
    But it's made me feel like a lazy cow for most of my time with ME !!
     
  5. sueami

    sueami Senior Member

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    @ukxmrv, no, i haven't had cortisol tested since fatigue became steady and permanent. i should. i haven't gone to my gp b/c he seemed clueless about CFS. If I can get out of this crash a bit more and not risk another crash by going to an appt, I may go see him and see if I can get a referral to a cardiologist.

    I had fatigue fairly steadily but I could do a lot through it most of last year. I crashed at solstice with heavier fatigue, started resting per kimsie's 30 hours a day 15-20 min max at a time activity level day after christmas. each time i felt better, I upped my activity level almost without realizing what i was doing and triggered a bad crash where being up is casing elevated HR. 95-115+ depending on whether I'm sitting or walking.
     
  6. picante

    picante Senior Member

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    Ditto on testing cortisol -- with a 24-hour saliva test.

    The second time I did this, I really wanted to know what my level was around 2-4:00 am, when I tend to wake up and stay awake. So instead of doing the last spit sample before bed, I did it around 2:00 am. It was elevated.

    As for morning cortisol, mine's been low. Sometimes I can change that by taking my T3 60-90 minutes before I get up.

    And once I did the test on a day after X-C skiing when I had a post-exertional migraine & nausea. The morning level was "normal" and the rest of the day -- it was in the stratosphere. My ND said "Your adrenals think someone's trying to kill you."
     
    Last edited: Feb 7, 2015
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  7. gregh286

    gregh286 Senior Member

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    hi,
    it is totally bizarre, sometimes a long sleep can be more detrimental than a short one. Something is seriously awry during sleep cycle.
    When you "confuse" your body with overnight flight or something like that, you are more normal energetically, opposite to a real human :).
    My cortisol is very high in morning, so i think my body is exhausted from over production and then gradual improvement comes during day as cortisol drops.
    Our body in constant high state of alert for some reason during sleep.
     
    soxfan likes this.
  8. soxfan

    soxfan Senior Member

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    @greghh286- If I have a longer sleep I feel terrible! I know my sleep cycles are very screwed up and even though I "sleep" quite well I never wake feeling fully rested. My sleep seems to be somehow disturbed even though I sleep.

    If I wake even 30 min later than normal which is about 7am for me I will feel very off the entire day. Almost like I woke in the middle of a cycle and can't full wake up. I even feel better if I have 4 or 5 hours sleep rather than if I wake up later than normal.

    @sueami- I was on cortef for years and it didn't help with the morning fatigue. I was up to 20mg daily at one point. I would strongly suggest that along with the saliva test which really isn't all that accurate since at any moment the body can shoot out cortisol due to stress...anxiety...etc. I had 4 tests done in the span of 7 years and off cortef or on cortef there was basically NO difference in the readings.

    My doctor had me do the ACTH stim test and that showed that my adrenals did work properly and started the process of weaning me off cortef.
    I think most of us feel awful in the mornings...I know it takes me a few hours to feel okay.

    Like greg I believe my cortisol is running high all night long which exhausts me by morning and I also agree that the body...at least mine is in a high state of alert during sleep.
     
    sueami likes this.
  9. gregh286

    gregh286 Senior Member

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    @soxfan how long have you had CFS.
    Does cortef resemble prednislone?
    Strange thing my body awakes at like a normal person at 7am/730, like its time to get up yet I am totally unrefreshed, nearly have to roll out of bed.
    When you are really tired if you missed a night sleep cos of a flight etc, your body will sleep on till 11am/noon. Somehow our body thinks its refreshed and time to awake, yet its far from truth.
    Prehaps something herbal that you smoke might reduce overnight high cortisol production. Unfortunetly with CFS we have to try things we would'nt normally. I take seriphos but its hard to determine dosage.

    Big puffy eyes on top of all that, look like i've done a 12 rounder with iron mike, combined with a thirst like Im stuck in the Gobi desert. I think the excess cortisol is affecting other hormones and mineral levels.

    I too feel better with 4-5 hours sleep then a nap around noon, but in reality its hard to operate like that. Would rather sleep a normal pattern.
     
  10. Alea Ishikawa

    Alea Ishikawa

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    Though this is not for everyone, I've found that taking caffeine seems to help with the "hit by a truck" feeling in the morning. I can actually take caffeine just before bed and still fall asleep (!). Per Myhill, caffeine helps with AMP. Combined with D-ribose for ATP, it can potentially assist with energy levels.

    For some, caffeine can have unfortunate side effects. The same with d-ribose, which I would recommend taking after eating carbohydrates to avoid hypoglycemia - and I'd be careful if diabetic.



    Previously, I was also taking pseudoephedrine, which I found is actually a potential medicine for POTS. I would not recommend it for anyone with higher blood pressure, or even normal blood pressure, perhaps. It can cause hypertension (high blood pressure), tachycardia (fast heartrate), and anxiety. It can help via vasoconstriction. For me, I found it about doubled what I could do in a day, perhaps by addressing blood volume/brain oxygen level issues.

    If you are drinking a lot of water and taking lots of salt, it can make you feel awful and keep you awake for the entire run of the medication. So, something to be used in very select circumstances!



    If the body is attempting to repair itself and archive memories from the day during sleep, then maybe that is more energy-intensive than being awake? Just a theory.
     
  11. soxfan

    soxfan Senior Member

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    @gregh286 - I actually think I started off with Lyme....which wasn't treated for 2 years. I got well on Rocephin IV but then relapsed when I had to come off. Over the years I believe is when I developed CFS. I believe this to be true because my symptoms now are different than when I was first sick (November 2004) so over 10 years ago.

    I have been treated on and off in the past but nothing seems to help. My main problems are poor quality/unrefreshing sleep, nerve pain and muscle twitching in my calves and feet (pain is bad), severe mental fatigue with social interactions or anything that has to do with using my brain intensely which can include shopping, socializing, stress.

    I can do just about anything physically to a point....with no repercussions. I snorkel...walk 5 miles daily...hike...ride my bike...etc

    I am not sure about cortef only that it did not help me at all even though I showed low levels during the day. I at one point showed high at 10pm and they tried me on Seriphos but it made me feel "dead" the next day even on the lowest dose.

    I am totally unrefreshed in the morning and feel horrible when I get up. It lasts a few hours and then I start to feel my normal bad....I have had several sleep studies done but unfortunately I only sleep a few hours so they really can never get a good look at my sleep cycles. My sleep is never restful as my body feels like it is on a roller coaster all night and never feels calm....
     
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  12. gregh286

    gregh286 Senior Member

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    hi,
    thats strange you have good physical limits, my god i couldnt walk one mile, i would go to jelly.
    Yet I can concentrate all day and do mental work at a breeze. social interactions and talking is very draining.
    I get the twitching too, but pretty insignificant overall.
     
    picante likes this.
  13. Mij

    Mij Senior Member

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    Alea, I'm still conflicted whether caffeine is helpful but I think in tiny amounts it's helpful. I recall Dr.Myhill suggesting adding d-ribose to coffee, not sure. Is it because of the d-ribose added that makes it different? From what I've read is that caffeine doesn't create energy, it brings out the energy that we already have stored (which isn't much) and uses it up. I feel this is true for me because I can not do any light exercise the day I drink coffee. I absolutely can not take caffeine during a crash- this would put me lying down for 2 days.
     
  14. lnester7

    lnester7 Seven

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    I was told by the dysautonomia Doctor to take 16oz of water before I left the bed, it is suppose to release a chemical in the brain (sorry all I remember of the explanation).

    If you wake up feeling bad, try to have a sleep study done (they only pay attention to the apnea) so make sure you ask to pay attention to your stages of sleep and make sure you are getting into stage 4.
     
  15. Alea Ishikawa

    Alea Ishikawa

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    I think you might be right on that! I still need my regular rest periods and without them both caffeine and pseudoephedrine won't really do anything for me and might actually hinder me. But with rest, they can extend what I can do.



    Caffeine helps with AMP, d-ribose with ATP. You are correct on Myhill's statement:
    Study here:
     
    Mij likes this.
  16. soxfan

    soxfan Senior Member

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    I still don't know why I can do physical activities...I use to run before illness and that is the one thing I can't do anymore. I feel my brain is much more affected as I get severe mental fatigue which leads to overall total exhaustion.

    Plus my sleep is totally dysfunctional...my body can never be in a total relaxed and restful state no matter what...I have tried everything.

    D-ribose did nothing for me...

    I was working part time up until my move to NC and had no problems with concentration or being able to do the job but when I got home I would totally crash and burn and then do it all over again the next day...
     
  17. sueami

    sueami Senior Member

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    I know that the biggest reason am is hard for me at the moment is I wake up and within a minute I am instrong anxiety, which can last well into the afternoon, depending on how bad the crash is. I notice a lot of muscle twitches, and magnesium oil spray and epsom salt footbaths seem to help, so I wonder how much of it is mg depletion from the nighttime healing you mention @Alea Ishikawa.

    Im going to try Hip's n acetyl glucosamine to see if that helps. the anxiety feels so draining i am sure it has to be delaying heali ng.

    actually i wont be taking it after all. just looked it up and realized it comes from shellfish. i have had allergic reax to shrimp before. dammit. i was hoping i miht have a fix.
     
    Last edited: Feb 9, 2015
  18. gregh286

    gregh286 Senior Member

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    yea, i think the muscle twitches are a clue, they seem to worsen during crashes.
    Im not sure if its potassium or magnesium or a mixture of others.
    epsom salt bath appear to help marginally.
     
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  19. picante

    picante Senior Member

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    How horrible! Are you taking LCF or ALcar? Freddd talks about those in connection with anxiety.
     
  20. sueami

    sueami Senior Member

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    @picante yes, i have been taking 1 lcf tab mornings for 8 mos. in last week or two i have also tried adding in 1 alcar for mitos. do these cause or alleviate anx?
     

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