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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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insomnia

Discussion in 'Sleep' started by hurtingallthetimet, Feb 3, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

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    havent really slept all night...hate these cycles of no sleep...little sleep...then a few hours when so exhuasted..i know today will be horrible already hurt so bad everywhere and feel like throwing up...i dont understand why i dont lose weight i cant eat because of stomach issues...at least i took medications hopefully they will help soon.....i hate this..i miss being "normal"...no human should live like this..so tired of the pain and fatigue...tired of it all..

    just needed to vent think the insomnia is getting to me...just so much pain and exhuasted...just feel like crying...
  2. Ocean

    Ocean Senior Member

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    Didn't you say you were on a medicine that causes weight gain? I can't remember the name now, maybe Seroquel? From my personal experience when weight issues have been medication related nothing I did helped until I was able to go off the medicine. Sorry about your sleep. I'm struggling with it too much more than usual because of some other health problems I'm having and some medication I've had to take the past few months and it's horrible. I hope you can get some sleep soon, it's one of the worst things after a while, going without sleep.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    oh insomnia, i hate it too. It never seems to settle and is inconsistent patterns of amount and timing. Vent away i feel for you. I have seroquel for these occassions, so use it once a week or fortnight, but like every other med if i use consistently it just stops working so i just use it as my last resort med. Sometimes it can give me achy legs when i sleep and wake up stiff and sore but all this is hit and miss. Sleep problems for some of us is a real issue, not one thing will work all the time, its like trying to hit a moving target. Hope u hit the target soon.

    cheers!!!
  4. dannybex

    dannybex Senior Member

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    That wired but (extremely) tired thing can sometimes be due to high copper. Or heavy metals. Or high cortisol... or..... ???
  5. hurtingallthetimet

    hurtingallthetimet Senior Member

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    thanks for the replies and listening to me vent....my stomach is still extremely upset...i have ibs also though could be it i guess..i hadnt heard about the high copper heavy meatals...

    im weaning off generic seroquel had horrible withdrawls when went cold turkey...first medication id had withdrawl from like that it was weird i didnt know someone could have withdrawl from it...but not being able to eat much for a few days and throwing up and stuff one would think id lose some weight i feel like im the only person in the world that could go without food and never lose and ounce..

    ive been nodding off and on all day...it helps some to get the little sleeps...but dannybex it is that crazy wired but extrememly exhuasted to where your eyes are burning and you feel crazy tired...youd think one could just lay down and sleep for days when that tired...i miss the days of no insomnia id get up early jog, get kids to school, work, jog, take care of kids and house after work, jog more..yes i did exercise that much...and then sleep oh so good...seems like that was another person : (
  6. mellster

    mellster Marco

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    Have you ever started/tried an LDN (low dose naltrexone) regimen? It doesn't work for everybody but for quite a few people to better sleep and stomach/bowel disturbances, esp. when taken over a period of months. It is fairly inexpensive.
  7. Ocean

    Ocean Senior Member

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    I've had the same thing with not eating much at all and not losing weight and it was medication related. Maybe once you're done weaning off it, it will be a lot easier. I hope so.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I wasn't thinking LDN for sleep, but an antidepressant perhaps? I used Trazadone for a few years until it quit working, now I am on something else,(and oxygen with my CPAP) and feel much better.

    GG
  9. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello thanks for the info and advice id not heard of ldn until herer...wiil have to look it up...

    ggingues if you dont mind my asking waht are you on for sleep that helps besides the oxygen? its weird how medications will work then stop i guess your body builds up tolerance ive heard..its hard though when your sensitive to so much and have reaction to almost everything

    thanks again
  10. Ocean

    Ocean Senior Member

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    Hurtingallthe time, I was just thinking, do you think weaning off Seroquel is worsening your sleep? Usually when you start lowering a dose of medicine that helps with sleep, there will be a rebound or withdrawal effect where sleep gets much worse for a while. Could that be why your sleep was so bad maybe? If it is then hopefully once you're totally of it for a while, it will become much better.
  11. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello ocean thanks for the reply im pretty sure the weaning off isnt helping my sleep but ive gain like 70 lbs from teh medication....really need to get off it for health reasons of that..but when on full dose i still had wierd sleeping...bouts of insomnia...so we will see how it goes..im happy to be weaning off and hope i can get off of it completely...

    i was just so shocked to have such bad withdrawls from it..never heard of anyone withdrawing from it...but i gues anyone can withdraw from anytihng..
    take care have a great weekend
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I used to take Trazadone, but that quit working for me, was at highest dosage for sleep. I tried Doxepin and that did no work at all. Now I am on Mirtrazapine (Remero), only 30mgs or so per night. I also take 3mg of Melatonin and my 4.5mg of LDN every night, and a muscle relaxant.

    GG
  13. runner64

    runner64

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    O lord, my sleep is so so broken and short. It's the strangest feeling of "no sleep" I've ever imagined. I'm not on meds. I won't, I got really sick from one and now I'm like, "I'll deal as best I can and pop the occasional benadryl or gravol" which don't help 2 nights in a row anyway.

    I have trouble falling asleep though beat. I wake after an hour. Lay awake, it's cycles me back to sleep. That goes 3-5 times in a 3-4 hour period. Sometimes less than that. It actually feels like I'm twilight only sometimes. And my brain starts to travel in thought like it's almost in sleep, but it's like a "pulse" inside, wakes it right back up. I lay awake. Brain trying to shut down around this "pulse". Terrible.

    I have this "rush" in my head. Grainey vision, tinnitis and way more stuff. Very neurological. Does it go? Not psychological at all. I'm not an anxiety person, nothing. It's all neuro. I'm doing antibiotic therapy from Dr. Nicolsons CFS research. That's where I am in this. Just needed to vent about sleep. Sorry guys..............you too huh?
  14. LilacGardenia

    LilacGardenia

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    Two things:

    Do you have caffeine after noon time or close to your bedtime? Sometimes it can keep you up even if you drink your coffee or tea hours before you try to sleep.

    Also, light can suppress your Melatonin from being released... so it helps to get away from the TV, computer, etc as you unwind to go to bed.

    Best of luck, I hope you get a nice rest! <3
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yeah, I remember not sleeping well all the time, and waking up feeling dog tired and brain fogged...and lousy!

    I am so much better now, much better in the mornings with regards to fatigue and brain fog.

    Not sure what your issue is with meds(sensiitivity, over dose or ??), but you might want to reconsider, it's not ideal to take meds for sleep, but I think a lack of sleep, and the implications of poor rest are more cetain to kill you much sooner!!

    GG

    PS I asked my Dr about the long term repercussions of taking remeron for years and years, and I don't think he mentioned anything? Forgot if I researched it?
  16. Athene

    Athene Never give up

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    How about trying Citicoline? Made by Jarrow, it's nutrient rather than a drug, which I always prefer trying first. My insomnia was terrible but after only one week I am already sleeping most of the night.

    I started a thread about it here:

    http://forums.phoenixrising.me/showthread.php?16044-Anyone-else-taking-Citicoline

    Based on the (lack of) reaction to the thread, apparently nobody else IS taking citicoline!!!
  17. runner64

    runner64

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    Hi LilacGardenia, I don't drink caffeine or any of that. My neuro was targeted and it's really strong. Thanks for the luck! I sure need it. :) Sheesh.

    Hey Athene, I typically stay away from pharmecueticals period now. Unfortunately I have to take one for this though so trying the antibiotic. I won't take a prescription sleep aid again. I did once and got sick, now I'm healing my brain as much as I can. I researched a lot. My personal views on this are for myself only though. The cytocoline sounds interesting though so I'll look that up! Interesting. Thanks for this. :) -did you try it?
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im pro sleep meds for insomnia from me/cfs but thats my opinion. I dont think i would be functioning anywhere near like i do now if i didnt use sleep meds. For me i think lack of sleep would just cause more damage. I know there are different views on sleep and im not trying to convince anyone either way, some have said that once they have stopped sleep meds that their ability to sleep has gone, im just not convinced totally that its the sleep meds thats done this for everyone or neurological damage done from whatever has caused me/cfs in the first place. One reason why im not convinced is that there are quite a few me/cfsers who have never used sleep meds but still have an aweful time trying to get sleep. I also think those of us who use sleep meds can still go through bad periods of sleep, partly because of medication tolerance(this is not addiction) and partly because of exacerbation of me/cfs. I think sleep is very valuable in our ability to function to the degree we are or arent. Without sleep it wouldnt matter what treatments(antiviral, b-cell depletion, ampligen etc) we used we would still be a wreck. Some sleep meds we are told disrupt our sleep quality, all i can say to that is any sleep is better then no sleep. I think its a smart move to try all the non medication treatments but when these dont work and medications can help us to function, i say why not.

    Everyone has to make their own informed decision on it and everyone has different experiences with sleep meds but i wouldnt rule it out, without looking into it. I dont think we should look at medications as being bad, used for the right purposes they are very useful, reduce suffering and life saving. Without sleep meds i would be bed bound and wouldnt be able to work. I think for many of us that insomnia is caused by some type of neurological injury from ME/cfs?? mmm sleep.

    cheers!!!
  19. Athene

    Athene Never give up

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    Hi, sorry if I wasn't clear, yes I am taking Citicoline. I am sure that's the reason I am sleeping now. I haven't changed anything else.

    BTW this web page has interesting info on normal sleep, and abnormal sleep in illness (insomnia, unrefreshing sleep and why it's unrefreshing). It talks about natural remedies for sleep problems and discusses prescription drugs. It's from a book about Lyme disease but the info is relevant to all ill people:
    http://www.lymebook.com/lyme-disease-sleep-insomnia
  20. hurtingallthetimet

    hurtingallthetimet Senior Member

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    thanks for the info... i dont drink caffine.. just water sometimes juice...rarely a soda...i hadnt heard of citicoline i will look into it....im dead tired...hopeing tongith i will sleep good
    thanks again

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