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Insomnia and hydrocortisone. Anyone have positive results?

Discussion in 'Adrenal Dysfunction' started by andrie, Jan 5, 2016.

  1. andrie

    andrie

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    Hey all.

    I'm suffering some adrenal dysfunction. Total cortisol output is too low and is low during the day. But is too high during the night.

    So I sleep poorly and wake up too early. Kenny De Meirleir, my ME specialist advises that I'd try hydrocortisone.

    Has anyone had positive effects on their sleep by taking it?

    Thanks
     
  2. slysaint

    slysaint Senior Member

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    Read somewhere on this site that ME sufferers shouldn't be treated with corticosteroids.
     
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Plenty of people use it. Just search around.
     
  4. Valentijn

    Valentijn Senior Member

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    It was shown to be effective in low doses in ME patients, in one or two trials. But the trials were run by psychobabblers, so they concluded that ME patients should never use it :rolleyes:
     
    minkeygirl likes this.
  5. Blue

    Blue

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    Hi andrie,
    I haven't tried hydrocortisone. But I had high night time cortisol as well (but not overall too low cortisol like you). I got recommended Seriphos to lower night time cortisol (and to somewhat shift the cortisol output back to normal rhythm - in theory a least). I haven't tried it at that time because back then my sleep wasn't that bad.

    But I don't know what's best in your case, I hope you find a solution!
     
  6. roadkill

    roadkill

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    I had a similar cortisol profile. Too low morning and midday, and then normal in the afternoon and at night, so there wasn't enough of a drop from early day to late day to help me transition in and out of sleep. I starting taking hydrocortisone at 5 mg/day and it definitely helped my insomnia. Licorice extract has been good addition for improving my energy level though I don't think it's improved my insomnia any further.

    I tried phosphatidylserine one night since it's supposed to lower cortisol, and it did help me sleep a little but the next morning was rough. I think I felt that way because since my morning cortisol was low this stuff probably worsened that problem. If your cortisol at night is actually too high then maybe taking something like this in the evening could be helpful, but I'd watch out for the extra low cortisol morning possibility.

    And not to state the obvious, but since you're too low in the day and too high at night then maybe you should focus on things that might help push your body to a more natural rhythm, like getting up earlier in the day and getting lots of natural light exposure, and then reducing light at night, especially blue light (I type at 2 AM on a computer... Did I mention my sleep schedule is bad?)
     
    andrie likes this.
  7. andrie

    andrie

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    That's great to hear that it helped you. How much improvement did you see after you started taking hydrocortisone? Yeah, I've also tried phosphatdylserine and I slept worse and felt terrible the next day. My sleep hygiene is pretty okay, but it doesn't deliver any massive changes. Thanks for your response, appreciate it
     
  8. roadkill

    roadkill

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    It's hard to quantify how much improvement I saw after I started taking hydrocortisone, but it was a lot. Not only do I have an easier time sleeping overall but I also feel a lot less crappy when I get too little sleep, and my energy is better overall. Before taking hydrocortisone, when I got less than 7 hours or so of sleep I would feel so awful. I would tell my girlfriend "I'm dead to the world." I started taking it about 3 years ago.
     
    WoolPippi likes this.
  9. Sing

    Sing Senior Member

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    Hydrocortisone lasts 6 hours in the body, so it would be important to have it all out before bedtime. Avoid any time released versions of it, if such exist, as you'd have no idea when they would affect you. I have always found the brand name version of it much better than the generic, if that is ok to write.
     
  10. roadkill

    roadkill

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    Are you talking about different doses of hydrocortisone, or just speaking about brand vs generics in a general sense of medications? Since I'm taking a 5 mg pill each day, just a big enough dose to get me up to normal levels (bioidentical hormone replacement, or something like that they call it) it's had to be custom made at a compounding pharmacy for me. So there was no choice of a brand name or generic.
     
  11. Sing

    Sing Senior Member

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    I wasn't talking about different doses of hydrocortisone during the day, but rather my understanding that it is important to have your level down again before bed for the best chance of sleeping ok. It acts something like coffee if you take it too late in the day.

    Didn't know you could get hydrocortisone compounded. You could ask the pharmacy if it is time release or not, but I would guess not, as you need it when your level is down and not sometime maybe later.
     
  12. andrie

    andrie

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    That's great. Do you know what kind of effects it has on your own cortisol production? Is there any risk of the natural production levels to drop on 5mg? Also do you sleep for a longer period of time after you started taking the hydrocortisone? For me an extra 30-60 min of sleep would be a miracle.

    Thanks
     
  13. Sing

    Sing Senior Member

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    I take 5 mg twice a day and it has helped a lot with my energy balance. It hasn't reduced my own cortisol production according to tests at two different points. Normally a person is supposed to make between 30 and 40 mg a day. That would be a full replacement dose if you had no other source. The bad side effects of hydrocortisone (which is the same as cortisol) happen when a person is given a higher than physiological dose--something done in emergency situations to save lives. These high doses are usually quickly tapered off.

    There is an older but excellent book called Safe Uses of Cortisol by Dr. Wiillam Mackenzie Jeffrys (possibly spelled slightly wrong) where you can get the whole lowdown. It is very readable.

    I want to add that it is very important to have any hydrocortisone a person takes to be prescribed and monitored by a doctor. Even though it can be safe and helpful, it is not anything to take on someone's own. It is a master hormone which can do a lot of good, but also do harm if not taken appropriately.
     
    Last edited: Feb 13, 2016
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  14. roadkill

    roadkill

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    So do you take mass-produced 5 mg pills? If so, can you tell me more, like the brand or if there's anything special required to get them? As you can tell, I've been under the impression that such a product isn't available and that compounding is required.
     
  15. Mesurfer

    Mesurfer

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    I took it (Cortef) about 10 yrs ago and was convinced I was being cured. I entered my first and only remission in the 15 yrs I've been sick. I started sleeping more and my circadian rhythm was corrected, my mood was elevated, I had more energy ect... But it was short lived... Only a couple of months. I kept trying it for about a year in varying dosages and dosing schedules. It was amazing though.. for a short time to actually feel like I was going to have my life back. I actually cried tears of joy on more than one occasion but unfortunately it never panned out to be my magic bullet I had thought it might me. I don't take it anymore bc it stopped working completely for me. Good luck though. Hopefully it will help you.
     
  16. Sing

    Sing Senior Member

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    I take Cortef made by Pfizer. It works a lot better than the generic form which seems to be time released. I have used it for 16 years to good effect, though lately it doesn't seem to be making the same sort of difference. I am getting old, so maybe that is it!
     
  17. WoolPippi

    WoolPippi Senior Member

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    TL;DR
    I take 20 mg hydrocortisone daily and lately have been taking it before bed too. This helps me sleep through the night as (I think) it calms down my body and keeps it out of stress due to too low cortisol during the night. This helps (only) with my particular kind of insomnia: wake up in the middle of the night and lie wide awake for an hour and a half.

    My usual insomnia goes like this:

    - go to bed and fall asleep right away (my MAO A enzym is faulty so my melatonin doesn't get broken down. Instant :sleep:)
    - wake up 5 hours later, clear mind, very alert. Can't relax, mind racing.
    - wait 1,5 hours and things settle down and I can get two more hours of crappy sleep and wake up groggy.
    - have had this sleeping pattern all my life. My brother and mother have the same (MAO A connection I think)

    having done research and a sleeping study I now act under the theory that those first 5 hours consist of the first few sleep cycles and it's the amount of sleep that will keep me alive.
    When the brain goes from Deep Sleep stage to REM stage there's a surge in neurotransmitters of the excitatory kind that my MAO A doesn't break down. In a later sleep cycle, say the 3rd, this causes me to wake up.
    If I had to describe the kind of insomnia I have it'd be a noradrenaline/norepinephrine rush. Dopamine or a cortisol rush. This ties in with MAO A and a bodily stress response.

    If I can stop that surge of neurotransmitters rising too high I sleep through the night and have a glorious 7,5 hours of sleep and wake up rested. And healing from my illness fast!

    Lately I've been experimenting with taking hydrocortisone at night and thus far it helps prevent the rise. Perhaps because it lowers the stress by body experiences by overall low cortisol?

    On nights that I don't take it and wake up and have to sit out my insomnia I take a little bit HC before I fall asleep again, to keep my body calm. And to get a jump on the early dosis, where I have to wait 45 minutes in my bed before it's metabolized and I can get up.

    disclaimers: I have full adrenal problems and try to replace all cortisol needed. It's not just an aid for me.
    I take a generic pill of 20 mg that I break into any pieces during the day. Cortef didn't agree with me much. I'm in Europe, a doctor prescribes me. I get a lot from the site of this lady who has full blown Addison's Disease and is running marathons. She's liberal with her incidental dosage but she knows what she's doing. Liberal and sensible.
     
    Sing likes this.
  18. erin

    erin Senior Member

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    I'm glad I found this thread. This thread t is not exactly about corticosteroids which I am interested in after I was given by an orthopediatric specialist.

    I was diagnosed with a herniated neck on C4,5 and 6 last December. I was in agony. He gave me a lot of medication. First a costicosteroid injection (diprospan 1 ml) and daily injections of anti-inflammatory medicine for 14 days (Oksamanel I 20) together with a huge dose of oral anti-inflammatory tablets and a muscle relaxant.

    The first medicine was the costicosteroid injection (diprospan 1 ml). It was a one off medicine. After I got this I felt so well. As I was back to my normal, non-m.e. self. It felt great.

    My itch had gone and itchy area had a lichentification has healed in a day. My stomach felt great. I felt I was reduced a dress size overnight. Felt really light in every way, not physically but my mood was very light. More energy. I also noticed my leg shape was different. My legs especially ankles must have been swollen gradually in years that I thought I had chunky legs. I mean they are chunky alright but with corticosteroid injection they were really thin and light.

    A weight lift off me. It was so good.

    And the neck pain is relieved a lot. I was able to move my neck a little. I had to take all the other medicine which I hesitated and didn't at first. I thought this was too much medicine. Too many chemicals. But in the end pain came back and I did.

    But I've never felt as good since I had m.e. Even after B12 injections I didn't feel this good.

    And it wore off. I am back to my normal misery now. It gradually came back, started to swell, fatigue slowly crept in, less energy, itch is back, heaviness, brain fog and lastly a terrible ibs attack.

    It is even more upsetting. It's like being the best present given to you and taken back from you.

    Does anybody know why this injection made me feel so good? Actually totally normal with a person who has a normal health I guess?

    I read in many articles that cortisone is bad for long term use.People who used it had horrible side effects. I didn't. I had got better.

    It's so tiring, I don't understand. I want to try it again. I want another shot of diprospan. Is it really bad for me? If it is why did I feel so great in the first place?
     
  19. perrier

    perrier Senior Member

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    My daughter was put on 5 mg hydrocortisone, because she was unable to get up for months after falling sick with this demonic illness. Over the years it's gone up. Now she's on 18 mg daily for the adrenals.

    She wants to wean down,and is having trouble. Can one permanently damage the adrenals on these doses?

    A CFS doctor prescribed this initial hydrocortisone.
     
  20. Sing

    Sing Senior Member

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    I think you folks wondering about using cortisol would do yourself a favor by ordering and reading Safe Uses of Cortisol by Dr. William McK. Jefferies.

    With ME, circulating cortisol is often too low. This is not because of a defect in the adrenals but because they are not being appropriately signalled by the HPA axis. To supplement cortisol to bring up the circulating level to a normal, balanced level is not harmful at all according to Dr. Jeffries. What would be harmful is taking more cortisol regularly than the normal level would be. A normal level is considered 30 or 40 mg a day, according to Jefferies and others. So a supplement would be only what is needed to bring up your circulating level to that. This might mean only 5 or 10 mg a day. The only way you would need the full amount is either if you had no adrenal gland or on a very temporary basis to deal with surgery or some other serious medical issue. That is my understanding. Permanent damage of the adrenal gland is not supposed to happen when the supplementation is low and only brings up the overall level to normal.

    The reason cortisol got a bad rap years ago was because far too much was given on a steady basis. Imagine being overdosed with any hormone, but especially this master hormone. Then a second reason came into play. The patent ran out and the drug companies had no more incentive to do research so the bad rap sheet was not corrected.

    You might see if you can persuade a doctor to allow you to try a very low dose of cortisol to see how you do. The blood test as usually done, once a day in the morning, is not useful. If blood tests or saliva tests can be d one several times during the day, then the actual circulating level could be seen.

    I know I have written essentially this same post a number of times throughout my years at PR! One more thing is that different forms of cortisol have different strengths. For instance, Prednisone is 4X stronger. I don't know about other forms. Again, you do not want to be overdosing on a steady basis but only bringing up your level to normal, if you can persuade a doctor to do so. Dr. Jefferies book is a big help!
     
    Last edited: May 17, 2016
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