Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Discussion in 'Sleep' started by The Chronicals, Sep 6, 2017.

  1. The Chronicals

    The Chronicals The '59 Sound

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    I haven't slept for a good ten years...not past 3am when I have the usual heart pounding wake up panic attack.

    I have been through the plethora of medications and refuse to take potions these days.

    Was doing well with theanine and melatonin, and the most I ever take these days is the occasional low dose Vistiril/Atarax, so wanted to find something new.

    Im very sensitive to supplements, and I generally avoid an 'all in one', but gave it a go, and boy its really good stuff. Much improved sleeping and it definitely puts you out.

    Had to half it at first, but within a week was ok with a full pill. No tolerance buildup either which is really good.

    Pain to have to import to the UK, but definitely worth it

    https://www.supplementclinic.com/Adrenal_Stay_Asleep_by_Dr_Lam_p/700443614078.htm
     
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  2. gettinbetter

    gettinbetter Senior Member

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    Keep us posted
     
  3. The Chronicals

    The Chronicals The '59 Sound

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    Been working fantastic for close to a month, Im fairly confident it will continue too :) One of the best Ive ever tried to be honest...
     
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  4. gettinbetter

    gettinbetter Senior Member

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    They have a return policy 30 days so you can try it
    If you get PEM does it work under those conditions
     
  5. The Chronicals

    The Chronicals The '59 Sound

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    I dont get PEM, my body goes into panic model after any physical activity such as walking, or noise, or overt stimulation not ultra fatigue. Exhaustion is constant, but flooded with adrenaline. The rare times I do get PEM, I welcome it, its calming.

    For this, it still works.
     
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  6. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    @The Chronicals, I get a similar sensation. A feeling of my heart rushing and thumping, which comes on in the middle of the night and wakes me up.

    Its not accompanied by the emotions that are characteristic of panic though, and for that reason, I've never thought of it as a panic attack. Just something that mimics the physiological sensations of a panic attack.

    I've managed it through a combination of sleeping meds, paracetamol and cooling my body right down (usually throwing off all blankets except a sheet). But I'm always interested in learning about other things that have worked for people.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I've never heard PEM described as calming! In my experience (and I've had ME about 22 years) is that it is extremely unpleasant - tension, muscle pain, brain fog, exhaustion but inability to sleep, nausea and appetite loss, etc. Are you sure you are talking about PEM?
     
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  8. The Chronicals

    The Chronicals The '59 Sound

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    If you are on Psych meds like Amitryptiline, SSRIs, pregablin etc, you may find if you remove those, those feelings intensify to become mental and the physical attributes of an atypical panic attack. Although not actually being 'panicked'. So very hard to explain! but the getting cold does work a treat! Many a time Ive opened my window fully and stood in front of it (in the UK we are never far away from cold air!).


    Yes definitely . before I went into hyperdysfunction I suffered PEM for many years with basic CFS, now I long for those days again.
     
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  9. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    You probably already know this, but its worth saying out loud for everyone's benefit. If you're planning on coming off any of these, its crucial to taper down really gradually. SSRIs especially. Whatever plan your doctor has for weaning you off, consider going even slower than that (and see what the doc thinks).

    A lot of the crap associated with coming off SSRIs in particular seems to be withdrawal effects, and it can lead people to believe they need the drug permanently to be mentally ok.
     
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  10. The Chronicals

    The Chronicals The '59 Sound

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    God yes, I was abused for many years by my Doctors chopping and changing and withdrawing. Ive never recovered from a cold turkey benzo withdrawal five years ago to be honest. Its what caused a huge amount of damage.

    I wont ever take anything like that again - I was asking you if you where :)
     
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  11. echobravo

    echobravo Keep searching, the answer is out there

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    @Woolie, I have had this same symptom increasingly over the last 1-2 years. Wake up around 3-4 with heartbeat, also in the morning, usually accompanied with increased anxiety and feeling heavy, unrested and brain fogged. Interestingly it also happens after dinner nap (get very tired from eating, and fall asleep 1-2 hours).

    Starting to wonder if these symptoms are related to ortostatic intolerance. I have had low blood pressure for years, standing up makes me dizzy, headaches, coat hanger pain, anxiety (lower back!), fatigue, chest pain, lightheaded.

    Now, last week, a doctor said that during sleep my already low blood pressure will decrease even further, causing insufficient blood supply to the brain, hence releasing adrenalin which constricts vessels and increases pulse. Resulting in waking up with heartbeat, anxiety and feeling dizzy / sick.

    Does this explanation sound plausible? @Murph..others?

    Anyone else experienced similar symptoms?

    PS! Tested myself for POTS last week and pulse increased by 40bpm after 10 minutes of standing still. Resting pulse (lying down) was 58.
     
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  12. The Chronicals

    The Chronicals The '59 Sound

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    My awakenings are due to low cortisol, and therefore not being able to maintain a baseline, cortisol drops, liver needs more cortisol to do its job (nromally around 3am) , blood sugar drops - adrenaline is thrown out in a crude way to keep it all going.

    Low Cortisol does come with low blood pressure often...and definitely contributes to POTS
     
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  13. sb4

    sb4 Senior Member

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    I have recently found niacin to be very helpful for getting back to sleep. I notice it is included in the sup you posted.

    I am a week into cold turkey from 7.5mg mirtazapine. Barely noticed anything then BAM massive insomnia last night. Employed all my usual tricks but no good. My body felt tired and my brain did, yet my thoughts were racing and heart pounding despite normal ish bpm + bp.

    I suspect its mirtazapine withdrawl but cant be sure. Will take anti histamines instead to see how it works.
     
  14. The Chronicals

    The Chronicals The '59 Sound

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    Niacin is nice if you can tolerate it. Its affinity with Gaba receptors, has a similar action to how Benzos work - hence why it can help you sleep and become calm...plus if you tolerate the flush, can be brilliant at nuked some free radicals.

    Ive done Mirtz withdrawal - wasnt pleasant - but it definitely wasnt the worst out of all of those pills!
     
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  15. echobravo

    echobravo Keep searching, the answer is out there

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    Thanks for the input @The Chronicals , new to me that low cortisol can be linked to low BP..

    However, my cortisol levels (at least from morning and daytime measurements) have been found to be too high...
     
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  16. The Chronicals

    The Chronicals The '59 Sound

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    Probably may not sound like it, but high cortisol is a good signs regarding adrenal health! It means they are still able to product and you are in the adaption stage - much easier to come back from
     
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  17. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Oh, sorry, missed that. No. I was taking low doses of amitriptyline to help with sleep for a while. But found they weren't really all that effective and weaned off slowly. The thumping heart stuff was the same both before and after amitriptyline.
    That's interesting, @echobravo. I don't have low blood pressure myself. But the idea that our hearts might be trying to compensate for something else is an interesting one.
     
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  18. echobravo

    echobravo Keep searching, the answer is out there

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    @Woolie, yes I have been wondering about this strange kind of anxiety that has developed in the lower back & buttocks over the last 10 years or so. Often it is worse when I wake up. Have tried GABA, Relora, Theanine, Tyrosine, 5-HTP etc, but nothing helps.

    It wasnt until @Murph (thanks!) sent a lecture by Dr. Chris O'Callaghan (AU),
    , that I realized that increased adrenalin (from low blood pressure) will cause an anxiety-like feeling.

    He also makes the connection btwn connective tissue disorders and ortostatic intolerance, POTS, heartbeat etc. So, now I have started to wear compression garments, to prevent "venous pooling" in feet and guts - and it makes it easier to sit and stand more during the day, less dizziness, headaches, shoulder/neck pain, brain fog, nausea. Also drinking a lot of water and getting 10g or so of salt seems to improve circulation - getting more blood to head and arms.

    Anyways, the lecture above is highly recommended!

    The bigger question, though, is how on earth did my circulation become so compromised..?
     
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  19. ahimsa

    ahimsa no longer active on this forum

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