Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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anti cortisol medications

Discussion in 'General ME/CFS Discussion' started by knackers323, Nov 22, 2016.

  1. knackers323

    knackers323 Senior Member

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    There are theorys that cfs nervous system is locked into a high stress state and over producing cortisol.

    Has anyone tried an anti cortisol medication?
     
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    From the cortisol tests that patients have posted about (tested 4 times per day), most of us seem to have low morning cortisol that rises toward evening--opposite from the normal curve.
    I took a drug for a year that had a side-effect of lowering cortisol. That year was the worst I've ever felt and my cortisol tested very, very low.
     
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  3. Woolie

    Woolie Senior Member

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    Yea, I was actually put on corticosteriods (cortisol elevating drugs) during a bad crash, and I felt a whole lot better. (you can only take it in short bursts, though).

    I think it pretty unlikely that we're "locked into a high stress state". More likely, we're locked into some state of immune hyperresponsivity. But that's an entirely different thing. And increasing cortisol actually helps dampen a lot of immune activity, so more is better.

    So you don't want to lower your cortisol levels - if anything, you want to do the opposite.
     
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  4. A.B.

    A.B. Senior Member

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    The scientific literature does not support the idea that patients with CFS are over producing cortisol. The topic of CFS is a bit of a mental playground where all sorts of ideas circulate. Many of these are just bad ideas.
     
  5. knackers323

    knackers323 Senior Member

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    @A.B. what ideas/theory does the scientific literature support?
     
  6. WoolPippi

    WoolPippi Senior Member

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    Interesting question. Lowering cortisol levels seems like treating the symptom, though.

    I had succes treating the causes of permanent high cortisol response by:
    1. eliminating all bodily stressors. (Ranging from noise, heavy metals, hot showers, raw foods to unfriendly inlaws)
    2. calming the nervous system with EMDR, Gupta Amygdala Retraining and Reverse Therapy. Meditation and Mindfulness will work too, for others.
    3. assisting adrenals with amino acids, minerals, vit C, lots of salt and corticosteroids.

    I'm out of that high stress state. Cortisol is now normal.
     
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  7. edawg81

    edawg81

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    My cortisol was the correct daily profile curve just the peaks that started while I slept were through the roof. So my ND told me to take PhosphatidylSerine ~500mg at night. I have to note that this was during the onset (within a month of viral onset) of my worst episode. I bet its much lower as this episode progressed and the fatigue and PEM has worsened. I've been also taking l-theanine but switched to klonopin/doxepin and wonder if that has also helped over time.

    13782068_1341448809201984_1530474926958218488_n.jpg
     
  8. PeterPositive

    PeterPositive Senior Member

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    @knackers323
    It's not a medication but I've found that Rhodiola is quite a powerfule reducer of cortisol spikes.
    Taken at doses of 500-1000mg / day it can work wonders, just be careful not to overdo it or it will make you super drowsy/sleepy.

    If you feel sleepy just reduce the dose or stop it for a while.
     
  9. WoolPippi

    WoolPippi Senior Member

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    how interesting!

    I was advised to start taking PhosphatidylSerine after I tolerated mB12 and Metafolin a bit, to help lower the homocysteine which the mB12 spikes. (related to my homozygous DNA results, MTR/MTRR for one)
     
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  10. caledonia

    caledonia

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    Like the others have said, most of us have adrenal fatigue instead of high cortisol. I've managed to have both at different times. The high cortisol was due to a horrendous withdrawal syndrome from an SSRI. My normal state is low cortisol (adrenal fatigue).

    If you did have high cortisol, either Seriphos or Relora for about 4-8 weeks will lower it.

    Note that Seriphos changed their formula earlier this year and it doesn't work as well. I just heard they are changing it back. So if you get Seriphos, make sure it's the newest stuff with the old formula and not the changed stuff.

    http://www.everywomanover29.com/blog/seriphos-reformulated-high-cortisol/#comment-15189
     
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  11. knackers323

    knackers323 Senior Member

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    Does long term adrenal fatugue lead ti low cortisol levels even though the body/brain is still trying to pump it out?

    I was thinking that these meducatiins might be able to take the pressure if the system and 'reset' it.

    If it be right or wrong for all or any pwcfs I dont know but thete seem to be theory s and person experiences that suggest it may be a factor for at least some and seems as good a treatment as any to try.

    Unlike gupta etc. Suggest I personally dont think its likely to be the root cause for most but might help while we are endlessly waiting for the scientists and their literature to come up with something that actually helps someone in the near future instead if a whole heap of announcements that seem to fizzle out and go nowhere
     
  12. caledonia

    caledonia

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    There seem to be two types of adrenal fatigue.

    I'll call the first one type 1. This is the usual kind you hear about. The adrenals are fatigued and don't put out enough cortisol. Cortisol replacing hormones like adrenal cortex extract are helpful.

    The other kind is type 2. The adrenals themselves are fine, but they're not receiving signals from the hypothalamus and pituitary to put out cortisol. If you take traditional treatments like adrenal cortex extract, you won't be able to tolerate them - they will be too overstimulating. This is the kind I have.

    You can't tell which type you have by looking at a cortisol saliva test - they both look the same.

    So that should answer your first question - if you have type 2 adrenal fatigue, the answer is yes, and if you have type 1, yes at a low level, otherwise you would be dead.

    There is no medication that takes the pressure off and resets it that I'm aware of. I've heard of people who take adrenal cortex extract or cortisol and they can't stop. This is because they haven't gotten to the root cause.

    For both types, you can replace the electrolytes which are leaking out. That would be magnesium definitely, potassium maybe, and sodium if you're craving salt or salty foods like potato chips.

    For type 2, if I'm under a lot of prolonged extra stress, I've found Dr. Wilson's Adrenal Rebuilder to be helpful. It's less stimulating than adrenal cortex extract because the hormones are removed. I can only tolerate a small piece of it.

    It was Rich Van Konynenburg's hypothesis that the hypothalamus and pituitary weren't signaling correctly because they were depleted of glutathione. So if you were able to raise glutathione (via methylation supplements) then they should start working again.

    I don't think that has worked for me. I think the gains I've made in this area are actually due to removing my last mercury filling. I've gone from flatlined adrenals near zero, to about 50% of normal (but still adrenal fatigue).

    I'm currently working on Andrew Cutler frequent dose chelation protocol to remove mercury. The mercury will cause adrenal fatigue, glutathione depletion and a bunch of other bad stuff, with symptoms extremely similar to ME/CFS.

    I've heard many reports of people on the Cutler forums having their adrenals improve, so I expect mine to also eventually - it might take a couple of years. I've already had my thyroid recover from autoimmune thyroiditis after I got my last mercury filling out.
     
  13. knackers323

    knackers323 Senior Member

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    Medications I was thinking of were

    Metopirone
    Ketoconazole
    Aminoglutethimide
    Octreotide
    Bromocriptine
    Cyproheptadine etc.
     

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