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ME/CFS: In Free Fall Through the Looking Glass
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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)
    69.3%
  2. Multiple Waking

    247 vote(s)
    70.8%
  3. Early Waking

    196 vote(s)
    56.2%
  4. Sleep Apnea

    55 vote(s)
    15.8%
  5. Restless Leg Syndrome

    88 vote(s)
    25.2%
  6. Unrefreshing Sleep

    310 vote(s)
    88.8%
  7. Alpha-Delta Sleep Abnormalities

    83 vote(s)
    23.8%
  8. Daytime Sleepiness

    189 vote(s)
    54.2%
  9. Wild Dreams

    125 vote(s)
    35.8%
  10. Sleep problems (yawn) I don't have any sleep problems

    18 vote(s)
    5.2%
Multiple votes are allowed.
  1. Cort

    Cort Phoenix Rising Founder

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    Sleep has been called 'The First Symptom' in CFS. If you can start to repair your sleep you've got a chance; if you can't then you're in real trouble. For some people who have a sleep disorder sleep is it - fix it and they're cured; for others sleep is just one part of the puzzle.

    So how is your sleep? Take the Basic Sleep Poll and let's find out more about the sleep issues in ME/CFS.
  2. Jody

    Jody Senior Member

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    This has been a VERY interesting poll for me. It caused me to do a re-evaluation about my current sleep situation and realized something rather amazing, at least to me. I even checked with my husband just now, to be sure I was on the money.

    I don't have any sleep issues. I used to. I have probably been through every type and combination of sleep problem out there at one time or another in the last 17 yrs. But somewhere in the last 2 years, ... they've all gone away.

    I will say I need a nap sometimes during the day. And my sleep could be more refreshing when I wake. But all in all, I sleep as well as your average 53 yr old without CFS, and maybe better than some of them.

    Huh. Nice to know. :)
  3. Cort

    Cort Phoenix Rising Founder

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    in part that shows I suppose how much you recovered but it also reflects the fact that sleep problems are not necessarily synonymous with CFS - despite the general consensus that that's true. You can cure someone's sleep problems without curing their CFS.

    There are some people who appear to have CFS who actually have a undiagnosed sleep disorder. One guy I meet was about to go on disability when he took an overnight sleep test which indicated he had X. problem. The doctor put him on sleep meds and three weeks later he was back to normal! if you can get a sleep test done - do it! - but make sure you get the right kind of sleep test done. The Phoenix rising website has a page on that.
  4. Jody

    Jody Senior Member

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    I agree that despite the common assumption about CFS and sleep / fatigue, the correlation is not as rock solid as many think.

    One more reason that CFS is a stupid name. Because though I had terrible sleep issues for a number of years, for the past couple of years tiredness or an abnormal need for sleep, or insomnia, have not been part of my package.

    My main problems have been neurological, brain fog and parasthesia (the psychedelic swirling, buzzing, woozy sensations) and vertigo. I would also run out of energy faster than the norm, and post-exertional malaise was ongoing. But none of that really is what most people thing of when they hear the word "fatigue". My problem was not being sleepy, at all.

    A sleep test would probably be informative but I, like alot of us, do not have the means (financial or the ability to get to one of these places) to have something like that done. It as likely as going to the moon, I'm afraid.

    The whole subject of human beings and sleep, the more I study it the more it appears that we just don't know very much about causes and effects. The human body is one big mystery. :)
  5. Cort

    Cort Phoenix Rising Founder

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    That's such a great point about the symptoms. Fatigue is of course important that there are all these other symptoms that people with ordinary fatigue just don't have. Vertigo, for instance, Lauren Hillenbrand has terrible terrible vertigo. You've had bad vertigo, I've had vertigo problems on freeways in the past. I couldn't drive outside of the slow lane for years yet you never hear about vertigo associated with chronic fatigue syndrome in the general sense.

    Another reason to learn how to do databases and build a big database on symptoms in CFS on the website and see what kind of groups show up.
  6. Jody

    Jody Senior Member

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    It's true you just don't hear about vertigo and CFS.

    Yet it has been the one main debilitating symptom for me for the past couple of years. And at its onset in 2004, it hit me so hard I thought I was having a stroke. Doctor patronized me till he took my blood pressure and found it to be something like 160 over 110 (or more? can't remember specifics) Dangerous high, anyway. He sent me straight to the hospital for tests on my heart which -- natch! as all my tests do -- found nothing wrong.

    But SOMETHING had been wrong. During that 24 hr period I could hardly speak nor comprehend what was said to me. It took months to get fairly functional after that. And it's just been this past 6 months that vertigo is not a major problem

    Some people get so flattened, they can't stand up, they vomit, can't eat ...

    Vertigo is a vicious symptom.
  7. Rosalie

    Rosalie

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    vertigo

    I love the point you make about Vertigo, I'm one of those that get bedridden, vomit, spin and cry. I go to an ENT on a regular basis, she once did a head tilt test that set my vertigo off and she actually watched my eyes spin. She was pleased that she actually got concrete confirmation of my condition. I was torn between being happy about the findings and trying to stay on the table. I would be curious to find out how many people with CFS suffer from vertigo at some level.
  8. Jody

    Jody Senior Member

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    Rosalie,

    Those are terrible symptoms! I have only a couple of times felt like I might throw up and a couple of times was plenty.

    Congratulations on getting concrete confirmation at least. :D With the exception of one occasion where my blood pressure was found to be abnormally high any tests I've had done all agree I am in perfect health.

    I went to a chiropractor once who has a fancy table that he can make rise up, lower down, and tilt, with use of a remote control. For me it was torture. It caused the vertigo to flare up so bad I could hardly see and had to hold on to the sides of the table for dear life.

    I asked him if I could just ... climb on and off the thing, rather than go for the ride. :)

    I realized, after I had an onset of vertigo that caused me to think I was having a stroke that I had had a (much) milder version of vertigo most of the time I've been sick. Didn't recognize it though until I had the full-blown version.

    Because there'd been no dizziness with it, I didn't recognize it. I realize now that vertigo and dizziness are only partly related. The sense of disorientation, of feeling half-drunk, or stoned, ... a type of vertigo.

    I'd had it for years and didn't recognize it.
  9. Angel

    Angel

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    an island in Florida
    ?Burning Eyes?

    I often have burning eyes in the afternoon or evening. When I close them they burn. does anyone else have this?
    I am wondering if it is just from being tired, or if it is because of a low grade viral infection going on.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Cort, I have had a sleep study done, not sure if it was the "correct" one?! Please advise/inform.

    Thanks!
  11. Cort

    Cort Phoenix Rising Founder

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  12. Angel

    Angel

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    sleep studies

    My sleep study was the test that got the disability through. It was concrete evidence that I was exhausted all of the time. It showed that I had 51% awake time during the night, and 6% REM.

    I was initially happy, thinking that now that the Doc knew what was wront he could fix it. Not so. He said my brain was not giving me the message to sleep. Even though I was exhausted and yawning, and could hardly keep my eyes open, if I laid down, I became alert. He said there was no medicine that could force me into REM.

    Through the years things have improved, but are still far from normal. I protect my sleep. I do not go to bed before midnight no matter how tired I am, because if I do, I will wake up 90 min later and be awake all night long.

    When I go to bed I turn off the home and cell phones. Even though my family understands not to call in the morning, I have had Doctors offices call at 7 a.m. to notify me of an appointment the next day, that I had just made the day before. Also, many wrong numbers early in the morning.

    When I wake up, I plug my phone in.

    My digital alarm clock has a heavy towel over it to keep my closed eyes from seeing the light. The fire/smoke alarm has a small piece of a recipe card taped over the little green light to keep me from seeing that. There is no ticking clock... I do not get up until I am rested - if possible. I try to aim for 8 hours a night.

    I keep a tablet of paper and pen on the counter, and every night I enter the time I go to bed, when I wake up each time, etc so that when I have 8 hours, I see it. I protect my sleep as I see it as the most important part of good health.

    If I don't get my 8 hours all of my symptoms start to explode. I also notice that when I am really tired I can hardly stand straight without wobbling. I look a bit tipsy, and when I walk I bump into the furniture and doorways.

    Can anyone stand straight and close their eyes, and not lose their balance?
    I
  13. Warbler512

    Warbler512

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    Yes, Angela - common in FM, probably in CFS/ME too - but for me they're a real mystery. I've had docs say I have dry eyes, but my burning and tearing typically comes at night upon taking Klonopin and right before turning out the lights. Doesn't always happen, but it can sometimes be pretty nasty and last a few minutes.
  14. Warbler512

    Warbler512

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    My Sleep and Studies

    It's reflexive to see the poll results and insist sleep problems are near-universal with CFS/ME and FM. I think they are; anecdotally, it's rare to find a patient without any. I also think what Cort especially is saying is certainly valid, that some obstructive apnea folks are in the mix. (A Toronto doctor showed a couple of decades ago that sustained sleep deprivation for a few days could bring on pain and FM-like symptoms. Then again, some folks live on 5 hours per night, including Eisenhower while planning D-Day for two years - talk about being under stress.)

    I suspect, though, that for the majority of us sleep is impaired more from within the brain, in part because of HPA-axis malfunctioning, pituitary or pineal issues; and possibly from without via viral/cytoking factors. Like Dr. Peterson said in Sweden, our brain sleep mechanism just doesn't work right, and this really no-**** has to become better understood. I may be partial because it was months of decreasing sleep quality that preceded my anxiety attacks and rapid fall into illness.

    Initially I had more trouble waking refreshed than getting to sleep. On benzodiazapines and/or naturally, I developed both. Angel and I have much in common. For me, Klonopin is still a knock-out drug, but it used to quickly cause a pre-sleep "brain blink" (microsiezure?) that meant I'd be out soon, and the blink rarely happens now. I might try relax in bed, or get up and do something else for a while, but my first tactic is prayer in the sleep position, perhaps because of whatever neural centers it activates. Even that doesn't always work, but whether it does is irrelevant to reverence. (I've grown quite the opposite, 'headed to purgatory at least.) Before onset, prayer was done on the knees, and imagining sex helped put me to sleep; that only delays sleep now. The light from a computer screen does even worse, unless I'm up into the weeee hours - not healthy. It's interesting that Japanese studies mention computers, but frankly, they weren't an excitatory problem before the anxiety was, and I think some Japanese are also caught up in societal factors at this stage, especially since they're normally more regimented.

    For me, Klonopin also seems to have a noticeable 9-hour clock from when sleep finally starts. If I'm going to be interrupted, it had better happen at about the 5-hour mark, when I can much more easily get up and do stuff, though I might feel sleepy later. If I let myself go back to sleep immediately, all alpha-hell breaks loose with nightmares. From that point 'til the ninth hour, it'll take something pretty urgent for me to get up. Anyone calling me can kiss off. (I used to unplug the phone too, but would too often forget to plug it back in!)

    I believe my routine one-day sleep study was done incorrectly for me, and it wouldn't have helped my disability case; my SPECT did. The sleep docs were looking for apnea, poor oxygenation, etc. and found nothing, so they blamed Klonopin, though my sleep issues long predated the drugs. Of course, they allowed me first to take the drug, and second, to wake me up after five hours and kick me out of the hospital so they could go home. I'd asked if anyone could stick around to see happens when I tried to fall asleep again; 'wasn't gonna' happen. I understand sleep research for us is getting more comprehensive, like the bike exercise tests.

    Lastly, I also feel a distinct difference between "brain-tired" or sleepy, and body "fatigue" - that energy-sucking feeling. Sometimes they occur together, and sometimes resting because of one brings on the other. I'll go into a dreamy or half-awake phase where the body seems too tired to do anything but breathe, almost like a living corpse; 2-3 hours later, I'm up and ready to go, to whatever extent. I think what's going on in us during these "drainings" is finally being studies too; if not, that's why centers like WPI can be an enormous help.
  15. Freddd

    Freddd Senior Member

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    Hi Angel,

    You exhibit many many symptoms of methylb12, adb12 and methylfolate deficiencies.

    Can anyone stand straight and close their eyes, and not lose their balance?

    I can NOW but not for decades prior. My buring eyes cleared up in one day with adequate methylfolate and methylb12 with other cofactors. Increased methylfolate was the immediate key.

    Sleep disorders of many kinds are directly caused by methylb12 and folate deficiencies.

    I don't see anything at all in your posts that are not mb12, adb12 or methylfolate deficiency syptoms.

    Most of these symptoms can clear in days to weeks with the right brands of the right kind of supplements taken in the right way.
    Aerose91 likes this.
  16. jenbooks

    jenbooks Guest

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  17. Freddd

    Freddd Senior Member

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    Hi Jenbooks,

    That is a howl. It all to much reminds me of an utterly miserable night in a too hot room with 14 foot ceilings and many mosquitos. I spent the night trying to smash the mosquitos against the ceiling with paperback books thrown up from below. I got one just often enough to keep me at it for hours until I had destroyed them all.
  18. Angel

    Angel

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    an island in Florida
    methylb12, methylfolate, sleep, burning eyes

    Hi Freddd:

    Is that just vit B12? Right now the computer that I am on has no information on the methylb12, etc. I'll have to research it later tonight.

    I have had the burning eyes a lot. Not at the moment, but for months I was very aware that my eyes were so hot. I had wondered if my ph was too acidic.

    I hear your frustration with the sleep studies. For my first one in Florida, they put me on Ambien. I woke up with my uvela the size of my thumb. They said I had apnea. I say I had a reaction to the ambien. Why do a sleep test while on drugs. If I wasn't taking drugs to sleep, what exactly is that going to show them?

    They also made me go to sleep at 10 pm. That will ensure a bad night of sleep. My circadium rhythms are different, and at that time I was going to sleep at 3 of 4 A.M. Then as you say, they wake you up at 5 in the morning and tell you to go home. Not safe, or realistic. I would think that the last few hours of sleep in the morning would have a story to tell medically, just as the first few hours would.

    I have always said that I get the best sleep from 5 A.M. to 9.

    I would love to do a sleep study where they allowed you to go to sleep at your normal time and get up at your normal time without taking any medications to help the sleep so they knew exactly what was going on.

    I do have sleep apnea, so I am not allowed to take any sleep medication such as Ambien, because I might not wake up.

    Klonopin was prescribed 15 years ago for restless leg syndrome. It made me sick for a month, and when the Doc weaned me off of it, I became suicidal. A psychologist told me it was the medication and that the Dr should have weaned me off 1/2 of a pill every 6 weeks, not every 4 days.

    It is my belief that the Klonopin and Topamax (almost made me go blind) and other medications designed to calm the restless leg syndrome are merely covering the problem up. They are not looking for the source of the problem.

    I rarely have the problem now. When I do it is usually from a toxic substance such as MSG, the viral building up in the blood or something. I take Alpha Lipoic Acid, GABA, minerals, Vit C and do some cleansing at the Drs. One thing that really works is the Photolume, or the Ultra Violet Light which is inserted into a vein and kills all of the viruses and bacteria that flow by it for one hour.

    That is followed up by a very potent Vit C IV to cleanse the blood of all the debris or perhaps a Serrapeptase IV. A few treatments of this, and taking those supplements for awhile calms my body down and the restless legs are history.

    If I had continued taking the Klonopin, or other meds to sleep, my body would never heal itself, but would become dependent upon the meds for sleep.

    It's a very difficult situation - - to take, or not to take. When that is the only answer or hope you are given, that is usually what people do. I'm just not convinced it is the best thing long term.

    Thanks for your info Freddd. I'll do more research tonight.
  19. Freddd

    Freddd Senior Member

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    Hi Angel,

    Is that just vit B12?

    Emphatically NO! There are lot's of reasons "just b12" doesn't work. http://forums.aboutmecfs.org/showthread.php?t=188. Here are a series of posts I made that has all the basic information about specific type, brand and technique and necessary cofactors.

    Methylfolate is absolutely essential to normalize sleep. B-complex, calcium, magnesium, vit C, E are all needed for proper muscle response, immune response, cell reproduction and all that. There are some more all detailed on the pages I referred you to there. The body is a system, leave out certain important factors and it doesn't work right or heal right.

    These factors have the potential to heal CFS/FMS/ME/CFIDS as I have been healed. Sleep disorders are a small part of it if you look aty the symptoms list.

    Before mb12 I slept 5 hours of poor sleep a night. I closed my eyes and that was sleep. I opened them for the day. I took Provigil to keep from falling asleep each time I blinked. I was exhausted all the time. Sleep disorders may be foundational to fms/cfs. Mb12 taken in the morning promotes melatonin in the evening. Everything changed within weeks of starting. I was actually awake during the day. I got genuinely tired and sleepy in the evening for the first time in decades. I started sleeping 8 hours a night and having restful restorative sleep. It took adding methylfolate to restore dreaming. My sleep now is very good and normal.

    I used to have 185 symptoms on that list on those other pages, I have 27 left, mostly damage from a car wreck and neurological damage from prolonged deficiency. I no longer have CFS/ME/FMS. I don't have the symptoms to be diagnosable. I have recovered energy and capacity and rebuilt muscles and my neurology is mostly normal now.

    Klonopin is brutal to quit too fast. It has to be tapered very slowly.

    My burning eyes resulted from a glutathione precursor trial which threw me into what is described as a "detox" reaction that was absolutely brutal and in 6 weeks returned me to a pre mb12 condition in many ways. I was able to fully recover only by increasing my methylfolate a great extent. My burning eyes became normal in less than 24 hours. The trial induced a severe methylfolate deficiency and severe methylb12 deficiency and severe adenosylb12 deficiency as well as throwing my electrolytes off requiring an increase in calcium and potassium to recover.
  20. Angel

    Angel

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    Neuropathy & methylB12 deficiency

    Well Freddd, you've kept me busy with research on the B deficiencies and I'm not done yet. It's all quite interesting.

    I was reading on www.Mcvitamins.com/neuropathy and found vital info. Just a bit of what was written.


    What to take to reverse nerve damage? Vit B1, but not oral unless it is benfoliamine.

    Vit B12, but not cyanacobalamine as taking it results in absorbtion of as little as 1/2 of 1% of the amount taken. Methylcobalamine or Methyl B12 can be taken and absorbed orally.

    Neruropathy is a condition where the nerves have sustained enough damage that there is noticeable numbness, pain or tingling.

    Although mainly diabetics have this nerve pain from high sugar levels, other causes of Neuropathy are:

    Vitamin deficiencies. (pernicious anemia)
    infectious disease (Lyme disease)
    Medications such as (LYRICA, CYMBALTA, DULOXETINE HYDROCHLORIDE, PREGABALIN AND MORE)

    This is an acquired disease.

    The medications cover up feeling the nerve damage, but they don't heal it or reverse it, or even slow it down.

    I felt that this happened to me when I was on a pain medication following a car accident. When I went off of it, I was aware of my nerves in my legs going absolutely nuts, and in other areas of my body also.

    I did take a lot of Vit B to heal that problem, but I have slacked off on taking it every day.

    I seem to have a bit of a nausea problem sometimes with the B's, even though I try to stick with the methyl B12's.

    Thank you for the info!

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