1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Reducing sleep aids experiment

Discussion in 'Sleep' started by xchocoholic, Oct 5, 2013.

  1. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    lol. yeh some of those automatic toilets
    are possessed. I hate getting a booty shower while I'm still on the pot.

    I didn't realize trains weren't as exciting as the ones I've seen on tv. You're description fits some of the public transportation / buses over here.
    Actually the few times I've been on subways they were clean or at least cleaner than buses.

    Congrats on getting some housework done. I truely hate doing any of it.
    I'm trying to clear a path in my lr/dr area.
    Aaagh ! Most of it's going to thrift stores.

    I decided it's not a good time to access my mental capabilities. I haven't rested in at least a week now. Moving makes me hyper.

    Back to the grind. x
    Valentijn and peggy-sue like this.
  2. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    Housework was the only thing in which I practised minimalism, before I got ill.:)

    The pots and pans and chopping boards will just get dirty again.:(
    Half of them already are.....:cry:

    And it was hard work getting them dirty again. :mad:

    My shower may get left until tomorrow....:cautious:


    Maybe if moving makes you hyper,
    you are moving too much.... all at once... and getting an adrenlin surge going?

    Have you tried limiting how long you spend moving to say, 20 minutes, before shifting to doing something else, eg sitting at the pc, then 20 minutes of resting, before going back to 20 minutes of moving?

    That was how I first saw pacing being described... strictly, with a timer.
  3. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    I'm outta control here. lol. I'm in massive re-organization mode so I can't stop thinking about what stays and what goes.
    Most of it's going. My kids will be relieved they didn't have to unload all this stuff.
    I just decided that I could part with my size 4 shorts and pants that haven't fit in a long time. Haha .. I bet I had enough clothes for 4 people. : )

    I'm forced to lay down regularly due to OI but I haven't had a day of rest in awhile.
    I'm usually planning my next box of stuff when down tho.

    I'm totally with you on minimizing housework.
    I'm trying to figure out how to minimize
    how much dust I accumulate and not have to dust. : )

    Back to the grind again.
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    I'm still working on this. Still at 25mg 5http, 1/4 tap benadryl and .1-.125 mg klonopin. I added 1/4 tsp liquid guafenasin and am surprised at how much phlegm I had stored away. I'll have to check the dose.

    Still waking up in the middle of the night but sometimes it's digestive related. I'm getting cramps and gas everynite and I don't know why.

    heading back to sleep. tc .. x

    ps. Rain on my head woke me up yesterday morning ; )
  5. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    I couldn't wake up yesterday so last night I only had 10 mg 5htp, 1/2 .125mg klonopin, 1/4 tsp benadryl, 1/2 tsp natural calm. This combo made me too drowsy to stay awake so I need to keep reducing it.

    I'm not sure why but I've become more sensitive to smells lately. I suspect I'm more sensitive to drugs now too.

    It's a real pita being a pwc with mcs.
  6. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    I was a bad girl yesterday - with the fireworks display going on in the local park, I was going out to watch them - it's a highlight of my year, I adore fireworks and I was jolly well going to enjoy them fully.

    So I had 6 painkillers in total. I started early on in the evening - I knew I'd be standing in a muddy field and would probably end up jumping up and down a bit in excitement.

    In truth, I more fell over backwards trying to see everything that was happening overhead, so I still had to hang on to the pigtails on my hat. I nearly lost it a couple of times.

    But the fireworks were good.:thumbsup:

    Back to 5 today.... and another whole year to wait for the fireworks again. :cry:

    I was wondering if charcoal tablets or biscuits might help with your night-time gas?
    But you do have to be careful with charcoal that it won't absorb other things you are taking.

    It's not Michael, but me that gets bothered by his night time "emissions".
    I am usually treated to a great trumpetting "welcome" when I go up to bed....:aghhh:

    He sleeps through it all.:sleep:
    Last edited: Nov 6, 2013
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,278
    Likes:
    8,957
    Amersfoort, Netherlands
    He's not asleep ... he's been gassed and is unconscious :D
  8. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    I'm thinking it's h pylori again but I'm just taking pepto this time to see if it works. So far my initial black tongue reaction to the pepto has reduced by 90%. I'm going to start taking it during the day and see if that helps.

    I'll take more Albenza too in case it's more parasites.

    Emissions would be a blessing : )

    Glad you got to enjoy the fireworks. Don't beat yourself up for taking meds necessary to enjoy life. I'm sure you'll be happier once you start working on the root cause.

    What holiday was it ? I'm not into fireworks anymore. I'm sure these would be better for me from a supine position. So if i could be in front laying on a comfy bed, I'd enjoy it. haha

    I only took 1/2 of the .125 mg klonipin, 1/4 tsp benadryl, 1/4 tsp natural calm and pepto. I slept from 10-4:30 and woke up to cigarette smoke fumes. My downstairs neighbor freaks out regularly and drinks and smokes at night. It's sad to watch but what can you do ? Other than move.
    Last edited: Nov 7, 2013
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    Charcoal makes me feel bad more often than it helps.

    My best remedy for digestive pain is only eating blended or liquid food for a few days. I've had to do this off and on since getting cfs but moreso lately.

    I'm hoping the meds will work. It's been over 2 weeks since my last Albenza so there's a good chance my buddies are back. fun fun
  10. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    Have you ever tried Manuka honey for h.pylori?
    Michael tried it once - but it upset his tummy really badly. :ill:

    He's been given the full antibiotic treatment for his H.pylori, but we are clueless about whether or not it comes back.
    He still gets IBS, it didn't fix that.

    The only thing that helps that full time is a daily dose of isphagula or psyllium husk. Soluble fibre.

    The fireworks were for Guy Fawkes night. It's not a holiday, just a traditional excuse for having fireworks displays.
    It's based on an historical attempt to blow up the houses of parliament.

    It was what we used to have in the UK akin to your Hallowe'en celebrations in the US.
    However, the hallowe'en stuff is over here now, it's all getting very mixed up.
    Hallowe'en doesn't have fireworks. I'm not interested in it.:p
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    Blowing up the houses of Parliament. wow.
    I never realized how volatile government
    control has been.

    H pylori can come back. It's just a bacteria and properly fed will multiply. I did the whole antib routine 2 years ago and tested neg right afterwards. This feels the same. Pain in my stomach.

    Manuka honey costs a small fortune over here so I never tried it. I've heard good things about it from others tho.

    I can handle fiber sometimes but not usually. It typically makes my constipation
    and gas worse. Flax and most veggies nail me too.

    My energy level is good so far today. : )
    Definitely feel more awake. I'm embarrassed to admit I spent so many years on those sleep aids just because I thought I had to get my 9 hours each nite.
    duh ! The real test will be whether I relapse. Digestive problems aside, this is going well.

    Have a great day. X
    madietodd likes this.
  12. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    When we are travelling, Michael's tum can go haywire a bit - we take Buscopan with us for that.
    It's an OTC thing.

    It might help you through this - it's for cramps and bloating.

    Guy Fawkes lived a long time ago!

    The "plot" was in 1605.

    I only discovered this week that it had a religious aspect to it. It's never been used, to my knowledge, as any form of religious discrimmination, although some folk (apparently) take it to be an anti-catholic celebration.

    It could just as easily be interpreted as pro-catholic - given it was an attempt to put a catholic on the throne.
  13. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    I've been back to my 5 for the last couple of nights, doing ok.
    I'll just have to see how it goes for the next few days, I'm off to stay with my friend for the Glass Fair.:balloons:

    Good luck with your continued sleep aids reductions and I hope your tum settles quickly.:love::thumbsup:
    xchocoholic likes this.
  14. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    Hope you have fun a the glass fair. I'm assuming this is blown glass, etc. I stopped trying to go to fairs or events with a lot of standing or people. Even in a motorized cart it's overwhelming. My oi
    makes me too dizzy to navigate the chaos.

    So, I'm an idiot. I feel so much better without meds or supplements that make me drowsy. My obsession with getting sleep wasted several years. On the upside my body certainly had time to heal if it was going to. I'm grasping at straws to find an upside to my ignorance. ; )

    I'm skipping all allergy meds now since all of them affect my ability to think.
    I took .125 mg klonopin, 1/4 tsp natural calm ( this relaxes me better than a muscle relaxer but I started having watery stools last week on 1 tsp - tmi )

    Still needing pepto, candidase and virastop. I've been more physically active in the last couple of weeks than I've been all year so maybe I'm just detoxing. Or clearing out junk from my intestines. Sounds plausible.

    Heading back to sleep hopefully. I took 1/2 of a .125 mg klonopin an hour ago. I was working hard until about 10 pm so I couldn't fall asleep. Tc .. x
    madietodd likes this.
  15. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    Only getting 6 hours of sleep at night is taking some getting used to. On the upside, I'm definitely thinking more clearly without so many sleep aids. Looking back, that seems like a no brainer and yet I completely missed it.

    I'm still taking appr 10 mg 5htp, 1/4 tsp natural calm, pepto and .1 mg klonopin.

    I Google buscopan and may want something like that at some point. tx.

    Tc ... x
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    I had PEM yesterday and one of my symptoms is that I can't stay awake for more than a couple of hours at a time. For the most part my day was spent on the couch trying to watch tv but I kept dozing off. Not sure what to make of my body's ability to fall asleep so easily when I have PEM. I don't even have nocturnal myoclonus

    My pem lasts 2-3 days with day one being the least productive. Caffeine doesn't do anything at all for me.

    Day 2 I feel drained easily but am more productive. Day 3 is spent mostly productive but I feel weak easier. The upside is that I know this now.

    Still at .1 mg klonopin, 10 mg 5htp, 1/4 tsp
    Natural calm and 2 tbsp pepto at bedtime.

    My stomach didn't hurt last night but I woke up at 5:30 am needing to go. Obviously my digestion is playing a role in my ability to sleep. I'm not eating anything past 6 pm now.

    Btw, I was spending a lot of energy fighting to stay awake so I'm not bothered by that as much. I need to reduce the 5htp and klonopin because they're knocking me out at night. Getting knocked out at night isn't good for feeling awake the next day.

    tc ... x
    Last edited: Nov 12, 2013
  17. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    So I've finally adjusted to getting less sleep. I found out that if I wake up before 3 am I can take more sleep meds and feel ok the next day. But any later and I can't shake the effect of the med or supplement.

    Taking virastop and candidase after 4 am helps tho and doesn't leave me feeling drowsy. Evidently digestive problems are interfering with my sleep even if I feel ok.

    I ran myself into the ground trying ti move so today I slept about 5 hours off and on during the day.

    I also learned that 1/4 of a caffeine pill, Leader brand for now, completely wakes me up if I need it. The effects aren't the same from caffeine food sources.

    Can't wait to get moved : )

    tc ... x
  18. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    Just a quick update. I've been off melatonin and 5htp for several weeks now. : )

    I'm still taking natural calm and klonopin every night but I need these for digestion and myoclonus respectively.

    I'm not using benadryl as often but still need some allergy meds regularly. I'm super sensitive to meds so .1-.125 klonopin and 1/4-1/2 tsp childrens liquid benadryl are sufficient.

    Improvement is impossible to gauge right now because I'm moving and downsizing.
    I'm needing caffeine, etc to keep me going on days where I really just need to rest. Of course my digestion is hosed from eating too fast, etc.

    Also, PEM makes me sleepy and so did melatonin and 5htp. I'll be able to tell more once I'm settled into a new home.

    For sure I can say that I'm not missing feeling drugged out like I did on these.
    And being physically active, even an hours worth each day, is helping me sleep.

    tc .. x
    madietodd likes this.
  19. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    I'm down to a week before moving so my anxiety is through the roof. I just can't sleep because of all the little tasks running through my head.

    Taking 1 mg melatonin, 100 mg 5htp and .25 mg klonipin is working. I'm needing hydrocodone for pain nowadays too.

    Yesterday was very productive and I'm hoping to get further down the list today.

    I'm still unloading things I haven't used in the last few years or never. The people at the thrift stores are happy.
  20. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,792
    Likes:
    1,455
    Florida
    As far as feeling drowsy from the extra sleep aids so far so good. But I'm too busy to notice. So far I'm understanding most of what I'm hearing. kow.

    It's 3 am here but I fell asleep t 9. I got about 6 hours of sleep.

    This is the second night I used these again. I won't stay on these any longer than necessary.

    tc .. x

See more popular forum discussions.

Share This Page