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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Sleep and wakefulness??

Discussion in 'General Treatment' started by heapsreal, Oct 11, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://web.mit.edu/zakf/www/drugchart/drugchart11.html
    The above link shows all the inhibatory and excitory affects of neurotransmitters as well as blocking these effects can cause the opposite reaction.

    A normal person wakes up in the morning and most of those excitary neuros kick in, in a balanced way and over the course of the day they dwindle down and at night the inhibatory neuros kick in and we go to sleep. Also mixed in to confuse the whole matter is of cause our hormones especially cortisol, dhea and sex hormones. We better not forget cytokines from infections and inflammation.

    In cfs/me these are totally out of whack and is a major part of the reason its seen also as a neurological illness as well as immune illness. Trying to control them is almost impossible but we try with sleep meds , stimulants any other drug that effects the brain etc

    Especially with us i think, when we change a certain function with a drug the body compensates by trying to correct this or over compensates when the drug affects are gone, which i think happens alot with benzo sleep meds and also rebound insomnia when one doesnt take a sleep med. Also some meds affect several neuros eg alot of tricyclic meds also have antihistamine effects as well as effect serotonin, noradrenaline and dopamine. Some of these neuros are also broken down further eg serotonin has several different serotonin receptors, bloking the effects of 5htp2a and 5htp2c has sedative effects and is what drugs like trazadone and mirtazapine do where some ssri's dont block these receptors so they help impove mood and energy but then continuing working and worsening sleep for some. This is why many of us are sensitive to antidepressants.

    How all these neuros work is sort of my plan on how i use my sleep stack med protocol, generally a benzo as its the main inhibitory neuro, then i will add something that effects the histamine receptors and then maybe something that blocks 5htp2a/c. There are other neuro's etc like melatonin that i could use but its apart of rotating things to help prevent tolerance etc.

    Of late i have also been experimenting with increasing acetylcholine to help improve cognition and general energy levels which it has. Also noradrenaline with acetly tyrosine.

    Every so often even when using these meds i will have a night out of the blue where i just cant sleep, which is why i posted an insomnia rant. I think what happens is that the body wants to get back to its dysfunctional homeostasis or its normal crappy self. No matter what u do it will do the opposite. Even if we didnt try to control these bloody neuro's, this dam ME still dose a good job of mixing everything up anyway, so dammed if we do and dammed if we dont.

    At the end of the day i have probably confused everyone like i have myself, lol. Shows how complicated this stuff is and i dont think anyone really has a grasp of it including neurologists and psychiatrist. We can control these functions with meds and supps to a certain degree and this can help us to function in a normal world, but its no cure, its treating symptoms on a deeper level. In ME/cfs our body doesnt like to be normal so if we try to correct things its always pushing against us. This is one reason why i think with any med or supplement that we need to take breaks, chop and change to keep our dysfunctional brain off guard. Also retry things u might have used in the past that didnt help, our body might be in a different dysfunctional state that may respond to something that we once didnt respond too.

    We have to be our own doctors because we are the only ones who know whats going on in this brain/body of ours which needs constant changing. I think we will forever be experimenting with different things and have a cupboard full of half used meds and supps that we will dip into for short periods, tinkering all the time. I wish i didnt have to but it does give me more functional days then i would if i didnt. We are a complicated mess, might be why alot of docs dont like treating us. It would be much easier if we had an off/on switch, probably how the saying uppers and downers came about as they tried to control their bodily functions but its not that simple :rofl::confused::cry::ill::thumbdown:

    Enough of my rant,
    cheers!!!
     
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  2. beaverfury

    beaverfury beaverfury

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    Hi heaps

    Ive never had too many problems with insomnia but i just tried deprenyl and i can see sleep is going to be an issue.
    Thats a shame because i liked the motivating effect it has. I could try moclobemide instead,as another option.

    Leaving aside issues of whether one should be taking one drug/supplement to offset the side effects of another drug/supplement- What are your top 3 sleep aids??

    I would prefer to try supplements first. Maybe melatonin or tryptophan just before bed.

    Cheers, beaverfury
     
  3. xks201

    xks201 Senior Member

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    Ahh yes another nerd like myself. I love it. I find that when I am hypovolemic and not holding enough fluid (when I do not take my desmopressin before bed .2mg) I do not sleep well.

    I like you had a horrible time sleeping. It was like my brain was so neurotransmitter deficient that it could not even process when to go to sleep and when to wake up. I started taking pregnenolone cream (100mg/ml) and pramipexole before bed and I'll be damned if I don't need xanax to sleep anymore. I actually want to go to sleep too at regular hours. Whereas before I would just stay up until I had enough xanax in me (granted which was just 1 pill) to make me tired enough not to be able to stand up.

    I don't know what benzo you are using but I found xanax to be the perfect sleep med due to the short half life. Klonopin was a disaster due to the long half life...as was trazadone. I'd wake up and be asleep half the day.

    But yeah if you can try some pregnenolone cream and take it before bed and upon waking it might help. Preg=main neurosteroid. Do you have OI too?
     
  4. vli

    vli

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    If I didn't remember wrongly, I think heapsreal's favourite sleep aid is also mine, zopiclone.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Vli got it. zopiclone. But i alternate different sleep meds like zopiclone, zolpidem and valium, one of those to initiatte sleep and then i use an antihistamine like phenergan or atarax to help keep me asleep or i will use an antidepressant like trazadone or mirtazapine. ALternating them all helps me to avoid tolereance. Occassionally when in a real bad sleep/insomnia spell when sleep is almost impossible to come by i use seroquel in a low dose.

    I do use melatonin but mainly because its a good antioxidant and sometimes i use tryptophan in doses of 3000mg on an empty stomach which works good for natural supp. Of late phosphatidylserine seems to be helping alot possibly through lowering high night time cortisol, dose seems to be important with PS which im using 250-500mg.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yeah im abit of a nerd but only since doctors havent been able to help me, it was time to fix myself. I have researched sleep pretty heavily since its my worst symptom and can bring me to my knees very quickly.

    xks201 is that sergio oliver in your avatar, that might help correct my nerd level and push it abit more towards the jock side of things. Maybe im a nerdy jock or was lol.

    cheers!!!
     
  7. Rand56

    Rand56 Senior Member

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    hi Heaps

    You know I've been sleeping like chit lately because of the Wellbutrin. On another thread, nanonug..who also takes Wellbutrin, says he takes 10mg's of Lithium Orotate at dinner and he has no sleep problems whatsoever. So last night, I didn't want to try the 10 and I was thinking the 2.5mg's<which I have taken in the past> might not be enough, so I took 5mg's. It definitely took away a good bit of that wiredness in my brain and last night I slept for 5 hours. Yeah not great still, but still a lot better than the 3 hours I was averaging per night the previous 5 nights. So FWIW, maybe you can toss in LO into your mix of rotating supps and meds.

    Rand
     
  8. merylg

    merylg Senior Member

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    Hi heaps, I just had severe systemic reaction to one capsule of Celebrex prescribed for me. It gave me the worst restlessness & I was awake until 3 am :eek:
    Today my blood vessels in arms & neck/head felt inflamed & I cannot breathe properly. Sigh I knew it was a risk LOL. At least I have proved a point that I do have "vascular issues". (I already knew from my history of migraines & one seizure when had pneumonia & high temp)

    Hopeful that Colchicine will help reduce vascular inflammation & muscle /tendon inflammation. Have read it helped cure someone's Primary Biliary Cirrhosis (Autoimmune) in 3 weeks...sounds too good to be true. it can cause myopathy so I am supposed to wait til I have discussed it with Neurogeneticist about mito diseases etc....sigh...It is looking like I have this PBC so I am impatient to try Colchicine. Got to get over this allergic rxn first...sigh...using Telfast fwiw.

    Also want to ask Rheumy (but forgot) & Neurogeneticist about EDS Type 6, Marfan's & Mast Cell Activation Disease testing. 23andMe put me at risk of Restless Leg Syndrome ...think I proved that one in last few days...and Parkinson's. So lot's to discuss. It's only a guide but it helps work out the puzzle.
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tried to order lithium oratate to try but its another supp band in australia. Thats good it helps you, the more things the better like you mentioned to rotate between etc.
     
  10. GhostGum

    GhostGum Senior Member

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    I wouldnt let that stop you, a high percentage of packages will never be checked, have even had one checked one time with two unmarked vials for injectables, unmarked baggies filled with capsules and they forwarded it lol

    Check iherb as well, some reviews from Australians getting the product saying they had no probs.
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Iherb wouldnt even send it as they said too many of them getting picked up by customs.
     
  12. Rand56

    Rand56 Senior Member

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    Heaps why don't you try ordering it from amazon.com. Atleast the outside of the shipping carton isn't going to scream "supplement company" that is more prone to being checked out by customs. Just a thought.
     
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