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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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The Basic Sleep Poll

Discussion in 'Sleep' started by Cort, Jul 1, 2009.

?

My (yawn) sleep issues include

  1. Insomnia

    242 vote(s)
    68.8%
  2. Multiple Waking

    248 vote(s)
    70.5%
  3. Early Waking

    197 vote(s)
    56.0%
  4. Sleep Apnea

    55 vote(s)
    15.6%
  5. Restless Leg Syndrome

    88 vote(s)
    25.0%
  6. Unrefreshing Sleep

    313 vote(s)
    88.9%
  7. Alpha-Delta Sleep Abnormalities

    83 vote(s)
    23.6%
  8. Daytime Sleepiness

    191 vote(s)
    54.3%
  9. Wild Dreams

    127 vote(s)
    36.1%
  10. Sleep problems (yawn) I don't have any sleep problems

    19 vote(s)
    5.4%
Multiple votes are allowed.
  1. Angel

    Angel

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    an island in Florida
    when to take the B's

    Freddd:

    If you have a Vit B 12 shot in the evening, will it keep you awake, or help you sleep?

    Is there a methyl B12 inj? I've only been given the cyanocobalum.
  2. Freddd

    Freddd Senior Member

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    Salt Lake City

    Hi Angel,

    First, I strongly suggest sublingual mb12 rather than oral as it is 15-30 times more effective than oral. I also suggest sublingual instead of injection during the startup period specifcally so that startup reactions are more controllable. Mb12 injectiions are available from compounding pharmacies. I can give the the name of one that ships to most states in the USA cold in styrofoam in 2 days. The price can actually vary by 100x.

    A b12 injection or sublingual in the evening at first may keep you awake. During startup it can seem stimulating as it does increase metabolism. Taken in the morning it generates evening melatonin and promotes normal sleep.

    Mb12 is 100 to 10,000 as potent as cyanob12 in having b12 effects.

    I had been diagnosed with "idiopathic neuropathies" as I don't have diabetes. There were all b12 deficiency neyuropathies and are almost all healed.

    B12 in research promotes healing of nerves no magtter what the apparant original cause is. B12 all by itself doesn' t much as it quickly exhausts cofactors. It is important to take BOTH kinds of active b12 and methylfolate as well as b-complex twice a day and other vitamins and minerals. I put all the details down on those other pages. Please take me seriously when I say potassium is needed for when healing starts up. Let's discuss what you want to do before you do it so you can be aware of anything you missed.

    B-Right is pretty good at avoiding the nausea as ther inositol is microencapsulagted and doesn't release untiol the intestine. I find I have to take the vitamins with a mix of foods including carbs to avoid nausea when taking vitamins. A tender stomach is very characteristic of b12 deficiencies, of which there are 4.
  3. Angel

    Angel

    Messages:
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    an island in Florida
    Methyl B12

    Thanks for the info Freddd.

    Personally I wouldn't be a beginner with the B's as in the last two years I've had quite a bit of it. Sometimes an oral liquid containing Methyl B12, sometimes a sublingual Methyl B12 tablet, a few cyanacobalamine injections and a few Vit B IV's that started out small and then increased in size.

    From your info I can see that although I probably absorbed some of the oral liquid, obviously not enough. I used the Methyl B12 sublingual tabs, but never for more than 5 minutes. I have a hard time keeping the daily discipline.

    The Doctor that gave the IV's to me was dealing with these neuropathy issues with other symptoms, but I am not able to see him anymore due to insurance changes. His treatment plan for me was not finished.

    I have had enough to know that I have seen improvements. I just didn't understand a lot of it. When my whole body went nuts with the raw nerve irritability, I was hardly able to sit still, and I certainly wasn't sleeping well, so I don't think I really understood or remembered much of what he probably said to me. I was barely out of the crisis when the insurance change happened, and just tried to take the B's on my own.

    I slack off when my stomach gets queasy. When that happens, it is always in the morning (11 A.M.) right after waking up and taking my supplements. Twenty years ago I had a terrible time taking supplements without getting sick. Sometimes I'd just have to quit for a month or two and let my stomach settle down and then try again.

    I actually hadn't had much quesiness for a couple of years, but I've been having more of it lately. It could be that I need to sit down with the supplements and see if there is some cyanacobalamine in one or two of them that is setting me off. Otherwise, add food as you suggested, or maybe take them just a bit later in the day.

    I tend to purchase single ingredient supplements to prevent finding the addition of the cyanacobalamine in whatever it is that I am taking. I have returned several bottles of supplements to different companies because they made me nauseated.

    I have noticed that in the last year two of those companies have switched their formulas to methyl B12. However, if possible, I stay away from the supplements that have a little of this and a little of that as usually they are the ones that cause me problems.

    It could be that in giving myself too long of a Vitamin B12 vacation, without realizing I was doing it, I have slid back into the stage of queasiness as a symptom of not enough B's, along with a bit of numbness, a decline in sleep quality, balance problems and increase in anxiety.

    I will get the injections switched to Methyl B12 and try to concentrate on using the Methyl B12 sublingual tabs correctly under the tongue for 45 min, twice a day.

    (Just checked on the local compounding pharmacy, and it costs $120 for 3ml. Too expensive for my budget) Is the injection dose of MethylB12 smaller than cyanacobalamine?

    I did read your other post in the other thread on this forum and printed the list of which supplements to take for this problem, and I will concentrate on being sure I take the ones I have, and get the ones I don't.

    I will also concentrate on eating something before those B's and I recognize that you are right in saying that carbs help the nausea. I take Sodium Chlorite in the evening, and initially couldn't get it down with out something like potato chips. Had a lot of guilt about that, but the alternative was everything came back up which did me no good at all. Now I add Pomegranite juice to the medication and I don't need the chips to get it down. I am assuming it is because I have healed to a level where that isn't necessary any more.

    I hope you feel at least a little bit blessed, knowing that your tough experiences in life have enabled you to help so many people heal when they read what you now know.

    Thanks and Blessings!
  4. Freddd

    Freddd Senior Member

    Messages:
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    Salt Lake City

    Hi Angel,

    I'll respond more completely later. I just want you to know that University Pharmacy in Salt Lake city supplies methylb12 injectable with 20mg/ml with a months supply at 5mg/day at about $100. They ship to most states with prescription. With the 5 star sublinguals most don't need injections and they are far less expensive.
  5. klutzo

    klutzo Senior Member

    Messages:
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    Likes:
    10
    Florida
    Vertigo and sleep hours

    I have FMS/CFS/MCS/LYME.

    To Cort and Jody -
    In case anyone is still interested, Dr. Xavier Caro long ago did a study on vertigo in FMS patients and found 70% of us have nystagmus. This is a type of vertigo that pulses in time with your heartbeat. I have a "great left beating nystagmus" that threw me over so often at the start of my illness, that my first diagnosis was MS.

    Also, for Angel:
    Getting your best sleep between 5-9 am is a big clue that you have weak adrenals. Pick up Dr. John Wilson's book on Adrenal Fatigue or check out Dr. Gerald Poesnecker's web site or Dr. Rand's site for info on how to improve the problem. I have this also. In fact, almost every alternative practitioner I've ever been to, and I've been to seven of them at last count, said this was my biggest problem. One said my slow metabolism of toxins was the biggest problem, but the others all picked adrenals as the worst. There are lots of treatments for this, most of them things you can easily get with no prescription. An excellent test for it is called ASI (Adrenal Salivary Index) and you can get the kit online and send it in for about $175, I think. You must have a doctor who is willing to receive the results. They are so easy to understand and so well explained, you can easily interpret them yourself.

    For Cort: I agree that sleep is "IT", at least for me. Every once in a while I wake up to a day where I feel almost totally normal and am suddenly able to drive again, after months of not doing so. In every case, an unusually good night of sleep preceded this, but I've never been able to detect a pattern of what is causing this unusual blessing, so I could repeat it, though mild exercise like gardening in the fresh air is often connected to it.

    I've had 3 sleep lab tests, and all were mostly paid for by insurance. The first showed severe alpha-delta sleep anomaly and I was told I had the sleep pattern of a 95 yr. old. I was 36 at the time. The last two were even worse and also showed moderate to severe obstructive sleep apnea. I've been using CPAP for over 2 yrs. now and other than falling asleep much faster, it's done zilch for me. Very disappointing after being promised the moon by the sleep specialist.

    I've read posts by several people on LymeNet whose apnea disappeared instantly when they got the right combo of antibiotics.

    I think many more have apnea than realize it. I saw a study where they sleep tested people who were about to have surgery, which can be dangerous if they don't know about your apnea and make sure you have your CPAP in the recovery room, and they found 23% of the preoperative patients had apnea!

    klutzo
  6. Angel

    Angel

    Messages:
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    an island in Florida
    Hi Klutzo:

    Yes, I have started to read that book which was given to me by Dr Karim in Florida.

    Now I just need to finish reading it and follow the information. Thanks!
  7. Martlet

    Martlet Senior Member

    Messages:
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    Near St Louis, MO
    My doctor has had me on Temazepam to put me to sleep, and Doxepin to keep me asleep for the last - oh, must be fourteen years. Sometimes, it fails and I suffer for it, but if I can sleep the whole night through, I feel so much better. This combo works for me.
  8. aly4atp

    aly4atp Guest

    Sleepless

    Of course you hear about vertigo and CFS!! You're probably dealing with POTS or Neurasthenia...this means when you stand up, your BP drops, and your pulse increases-this is a "classic" CFS/ME symptom that landed me in the hospital for 2 weeks last year! Make sure your MD takes your BP lying, standing and sitting. There is really no good "cure" for this, except, in my opinion, to cure whatever infection is the cause. I was tortured for 2 weeks- DO NOT let them put you on a tilt table!!!-and when I finally left the hospital, I ran my own labs, started Doxy IV, and BINGO -no more "POTS"! Since so many of us can get sick w/o appropriate symptoms, (WBC,sed rate, fever,etc.), extreme things sometimes have to happen before the Doctor takes our extreme headache and feelings of light-headedness seriously!
  9. aly4atp

    aly4atp Guest

    Sleepless

    HELP...I take Seditol(natural drug),20mg. Elavil, and, either Ambien 10mg. or Restoril 30 mg. I also take raw Adrenal
    and a million other helpful items during the day. Nothing stimulating at night...and I know my stuff! I nonetheless cannot sleep for shit. Can't fall asleep, or stay asleep...end up putting .25 of xanax under my tongue in desparation- 2-3x just to get through...Ambien CR works better but I can't afford it! Any ideas people?!
  10. flybro

    flybro Senior Member

    Messages:
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    pluto
    With-out help re meds I would be ticking all but two.

    But with meds, my main prob is jumpiness, not just legs, any part of my body can just either twitch or act likes it out clubbing.

    I sometimes can get bed phobic. If I've been rough for a while and then I have a good day, I don't want to go to bed, incase I wake up feeling like crap again.

    Pain can sometimes keep me awake, again when I'm rough.

    However by far the worst feature for me is sweating. It seems the minute I lay down I start sweating. It used to be just my chest, but now my face sweats as well. I wake up freezing cold with wet pillows, hair, t-shirt and bed covers this can happen up to 6 times more commonly 4 times in a night.

    Antibitoics such as kephlaxin used to stop this but not anymore. Microdantin worked a couple of times. I'm hoping the Clarithromycin (I think its called). I am feeling really well at the moment so fingers crossed. Last time I had these I felt well for about three weeks.
  11. flybro

    flybro Senior Member

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    pluto
    I have a huge fear of hitting the deck.

    I fell into a few hedges of ladders before I stopped work, I was dizzy at the time and thought it was caused by allergies.

    It is possibly made worse by MCS.

    I was sat in the wheel chair at the hosp waiting for blood to be taken, and I got the dizzy feeling as well as a numbness around my mouth a nd nose. It has sometimes reminded me of having gas and air to knock me out at the dentist when I was a kid.

    When I get a dizzy turns at home, if I can hold on to soemthing and close my eyes its a real headrush, so I relax into it and treat it like a free fairground ride. Was once a thrill seeker, and I love spinning, so a silver lining if I stay indoors.
  12. Lily

    Lily *Believe*

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    Sleep, in my case.....

    Problems with sleep was the first symptom that followed the flu that I had....I experienced an upper respiratory infection non unlike an other in my life with the exception that this one lasted longer. I assumed I had a secondary sinsu infection so finally went to the doctor - which was something I usually avoided if at all possible. I assumed I'd get an antibiotic to clear the infection and that would be that. The infection cleared but my sleep NEVER EVER went back to normal - it was eerily strange too for months. I remember I remained fatigued as if I had the flu and started having this unusual type of sleep where I'd wake during the night practically doing a backbend - stretching my diaphragm as if I couldn't get enough air. I let this go on for 8 months before going to the doctor - had a sleep study - abnormal of course, but negative for sleep apnea. No stage 3 or 4 sleep and periodic limb movement disorder - everything went to hell in a hand basket pretty fast after that - a gradual decent into FM, then MS, then CFS - although I really don't think I have MS. I am disabled, but from CFS not MS. It all started with the flu though - no doubt in my mind. I do think if we could have gotten the sleep under control that I would not be as sick as I am now though ......oh how I would love to wake up feeling refreshed - just once......it's been more than 10 years since a good night of restful refreshing sleep.
  13. I had two sleep studies done. I tested 'normal'. augh But I should add that I suffer terrible
    insomnia, waking events plague me and I feel as tired when I wake up as I did before
    I slept. This tired is not the same thing that healthy people call tired, imho.
  14. Marylib

    Marylib Senior Member

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    New Zealand
    Sleep studies "ca-ching!"

    I am so happy about one thing in relation to sleep studies.

    When I lived in Los Angeles, they would play ads for clinical trials for insomnia on all night radio shows.. clever...

    So in those days I was doing much better than now, so I drove myself over to get tested to be in a trial. Well, I got in. So all I had to do was go to the sleep clinic once a week for about a month. They were running trials for the timed-release Ambien -- I think they sell it now.

    Well, I know I did not get the placebo because that stuff was awful, I mean awful.. Took me all day to wake up when they gave it to me. That stuff was the devil.

    BUT! I made $800 not sleeping! Can you believe it? If only I could make that much money not sleeping every night! :p

    Just shows you how much money those companies have to throw around.
  15. George

    George Guest

    I have the opposite problem. I sleep 12 hours straight through and nothing wakes me up, not sunshine, cold water, alarm clocks or sirens. The good news is that for the first hour of everyday I feel normal. My brain is awake and able to process, I feel strong. But each hour after that goes down, down, down until about 7 pm I'm zoned out staring at the walls and by 10pm I'm out.

    Then I wake up at 10 am on the dot and do it all over again.

    The first year I kept trying to exercise during that morning hour however every time I did any form of exercise, from Yoga to walking, that was it for me for the day. I was unable to do anything else.

    So now I do mental stuff and light work in the morning, then rest 30 min out of each hour between 11am and 7 pm. Then from 7pm till 10 pm I meditate, it's a purely restful state.

    We all work with what we got. It's interesting to here how others have deal with their day. For me; Pacing really works:)
  16. Alesh

    Alesh Senior Member

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    Czech Republic, EU
    During approximately the first five years of my illness I suffered from severe hypersomnia. I slept for about 14 hours a day. I believe it was similar to a healthy man having an ordinary flu and sleeping much more than usually so that the immune system can fight the infection. During the last 6 years I have had problems with falling asleep but I think it is because I cannot do any sport so that the body cannot get healthy fatigued. Perhaps it sounds funny but during the whole course of my Chronic Fatigue Syndrome I was never "fatigued", if by "fatigued" I mean the quite pleasant feeling I had after I had run some 50 miles or so.

    I find quetiapine (Seroquel) to be the strongest non habit forming hypnotic agent I know of. There are stronger sedatives like the extreme one levomepromazine (Tisercine) but because of its short half-life of about 6 hours Seroquel seems to me the best option for the long term use. My experience is that If I take, say, 50-100 mg of Seroquel just before sleep, any significant tolerance to it doesn't ensue.
  17. Freddd

    Freddd Senior Member

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    Salt Lake City

    Hi Alesh,

    I find the idea of using a major atypical antipsychotic as a sleep aid scary. Seroquel is accomodating and people need to taper it to avoid potentialy severe rebound problems. It also as potentially severe side effects such as permanent movement disorders and other problems, especially as people age. At a serum halflife of 6 hours it takes 60 hours, about 3 days, to reach equilibrium. Basically a 6 hour halflife means that the amount in your blood decreases to 1/16 by the end of 24 hours. The equilibrium level is then 1 1/8 of the single daily dose. The carryover each day is sufficient that you will become accomodated over time, though at a relatively low level.

    I found full relief and normalization of sleep after decades of sleep disorders by treating the deficiencies underlying the problem, methylb12, adenosylb12 and methylfolate, instead of forcing it with a bigger hammer. Perhaps you would find it helpful to come over to http://forums.aboutmecfs.org/showthread.php?p=20946#post20946 and learn about these hidden deficiencies quite possibly underlying CFS/FMS.
  18. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
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    East Coast
    Sleep

    Hi Fredd,

    Thanks for posting this information regarding the deficiencies, I will check that out.

    FWIW, I have posted on a couple of other threads that I have gotten sleep help from simply taking magnesium glycinate at bedtime. It has made all the difference in the world in my sleep. I would love to say that it has made all my CFS symptoms go away, but of course, it doesn't do such a thing.

    I have had improvement in muscle cramps/pain (especially in the legs), eye twitching, sleep (have been able to reduce meds from 30 mg to 5 mg), fluttering in the chest area, and a decrease in blood pressure.

    If you are considering taking magnesium and have never done so before, please do your own research to make sure that you don't have other conditions that make it contraindicated. And make sure that it doesn't interfere with any allopathic meds that you are taking.

    The Magnesium Factor by Dr. Mildred Seelig is an excellent reference.

    Take care,

    Maxine
  19. Alesh

    Alesh Senior Member

    Messages:
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    Czech Republic, EU
    Hi Freddd,

    I believe you are quite wrong as to the pharmacokintetics of Seroquel. Suppose the half life of Seroquel is 6 hours and its content in the body decreases exponentially. If I take 60mg of it always in the evening at the same time than at the n-th day just before I take my dose I will have in my body 60 (1/16+1/16^2+1/16^3+1/16^4+...)=60/15=4mg of Seroquel if n is large. So after few days of using Seroquel this way at the instant of taking Seroquel the amount of Seroquel in my body increases abruptly from 4mg to 64mg and it is what induces the sleep by some antihistamine effects or something. Than the initial 64mg decreases exponentially to end up with 64/16=4mg of Seroquel again at the bedtime before I take the next dose. So there is nothing like an "equilibrium" in this simplest pharmacokinetic model. What is in equilibrium is the 4mg each evening.
  20. Freddd

    Freddd Senior Member

    Messages:
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    Salt Lake City

    Eaxactly, I did not explain it as clearly as you have. It has the peak an hour or so after taking it plus the converging series of all the other halflife remnants to what ever the total is which I mistated. It does not clear entirely in 24 hours and hence reaches a minimum to which your body then accomodates. People quitting suddenly, even from one dose a day can have disturbed sleep and a multitude of other neurological and neurpopsychiatric disturbances that can occur. 4mg quit suddenly is quite sufficient to cause many but not all folks significant problems. Seroquel is not an innocuous sleep aid. It is a major atypical antipsychotic that can cause permanent problems though perhaps, and that is only perhaps, not as often as older drugs. I appologize for a small math error. That changes virtually nothing however in the risk of accomodation. The equilibrium I referred to was the steadystate including the daily Cmax and daily Cmin. They both increase for about 3 days, about 10 serum halflifes until approxiomate steady Cmax and Cmin are reached.

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