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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)
    68.9%
  2. Multiple Waking

    248 vote(s)
    70.7%
  3. Early Waking

    197 vote(s)
    56.1%
  4. Sleep Apnea

    55 vote(s)
    15.7%
  5. Restless Leg Syndrome

    88 vote(s)
    25.1%
  6. Unrefreshing Sleep

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

    83 vote(s)
    23.6%
  8. Daytime Sleepiness

    190 vote(s)
    54.1%
  9. Wild Dreams

    126 vote(s)
    35.9%
  10. Sleep problems (yawn) I don't have any sleep problems

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

    Julia Rachel

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    California
    Hi Jody:
    I have CFIDS as does my son Blake. I have learned ALOT about Vertigo, Dizzinness and imbalance by watching Blake suffer with these issues over the past 6+ years. I used to hear a "Kaboom" in the shower....After about a year of that...I asked Blake "What the heck are you dropping everytime you shower".....I was horrified when he said "thats me sliding down the wall of the shower Mom." Blake had to sit in the shower as he was too dizzy to stand. At 6'2"...it was a tight squeeze in the small bathroom. I was sick to my stomach watching him get dizzy when trying to stand up, clutching the hallway of our Farm Cottage when he walked, etc....Orthostatic Intolerance is a part of CFIDS I later Learned....as well as blood sugar issues....etc....a change in diet helped with the symptoms....adding the vitamins he needed boosted another 10% in improvement.....he is now 65% better after the Valcyte therapy.....(still ongoing).....I do not think people realize how debilitating these symptoms are....
    Blessings,
    Julia
  2. Jody

    Jody Senior Member

    Messages:
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    Canada
    Hi Julia,

    I agree, people just don't know how disabling these types of symptoms are. Your experience with your son sounds very much like mine with my son Jesse. He has been sick for 3 yrs. Fortunately he is much better than he was the first couple of years. His OI was crippling for a long time. He still is unable to do much outside of hanging out at home. Alot of time in his room, in bed, with his computer. But at least the OI has eased up considerably.

    You have my sympathy.
  3. Mya Symons

    Mya Symons Mya Symons

    Messages:
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    166
    Wyoming
    I had Vertigo and balance problems a few years ago. When I stood I often had to take a step backwards so I wouldn't fall. They seem to have gone away. (knock on wood)

    I have two big current problems that wake me up. One, I have muscle spasms or twitches all over my body (not just the legs), especially when I lie down to sleep. They are constantly waking me up. My husband has these too. So, we also wake eachother up. I have tried nerve medicine like Gabapentin for this, but it turned me into a Zombie, so I quit using it. Muscle relaxers seem to work better anyway, but not completely. The second problem is my irritable bladder. I am constantly getting up and going to the bathroom. I have tried many different medicines for this. They don't work. My doctor is sending me to bladder physical therapy. I have been putting it off because it seems a little weird to me. I wonder which came first: Did the sleeping problems cause the twitches or did the twitches cause the sleeping problems?
  4. Angel

    Angel

    Messages:
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    Likes:
    1
    an island in Florida
    Hi Mya:
    Although I have muscle spasms and twitches daily along with some nerve zingers, I believe it is not as bad as it was years ago. It used to be a major problem. When my nerves started crawling and being irritated causing loss of hours of sleep and making me feel constantly antsy, my Doc had me take different supplements to target the nerves and settle them down. I know I take magnesium to calm the muscles and Primrose oil, Omega 3's and Alpha Lipoic Acid for the nerves. There are others, but I am momentarily not remembering the specifics. Perhaps you could google neuropathy and see what supplements are recommended. Over a period of a few months I had a tremendous change.
    I also take low dose Naltrexone and it is helpful.
    NOw, about the irritable bladder. About 15 years ago I had this problem. I was receiving massage therapy from a physical therapist for Fibromyalgia. He told me that many FMS patients had this, and that if they would just have a few good massages in the low back area and the bladder area the problem would be relieved, as the muscles relaxed and were lengthened again.

    At that time I experienced relieve, and after only one month on the medication that the Doctor had put me on, I was able to go off of it. I met women that had the same problem, and their Doctors did surgery to fix the problem. The physical therapist said he thought a lot of surgeries could be avoided if people would try the massage therapy first. Since that time I have had the problem about 4 times. One of those times my urologist sent me to a physical therapist, and within a couple of weeks the problem went away. The other times I just found a massage therapist myself, described the problem and they targeted it. I'm not sure, but it might be related to the psoas muscles tightening up.

    Your Doctor is right on about the therapy taking care of the problem. The shortening muscles, and spasming muscles put pressure on the bladder, and then you think you always have to go.

    I also did a sleep study many years ago. They found that my twitching muscles in my legs woke me up every minute, preventing me from getting into REM. I do not take muscle relaxers any more, as they just didn't work, except to make me feel like a zombie. I use calcium, magnesium and potassium, and massage therapy, and other supplements to target twitching muscles. I feel better, and they aren't nearly as active as before. Before it was as if I had a full blown case of restless leg syndrome. I do not feel that way after using the supplements. Good luck with your research and finding a working solution for you and your hubby!
  5. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    876
    Salt Lake City
    Hi Angel amd Mya,

    The supplements that actually work to heal neuropathy are methylb12 (certain brands only retained sublingual for 45-120 minutes), adb12, Metafolin, omega3 oils, zinc, potassium, magnesium, C, E, A, D and maybe a few others. As most neuropathy appears to be caused by b12 deficiency (in the case of neuropathy studies have shown that the neuropathies are responsive to mb12 at intial serum levels of over 1500pg/ml) agressive daily supplementation of mb12 and all the other cofactors needed to form new cells and remyelinate the nerves. These also will usually correct the muscle spasms, fasiculations (lacking ALS paththology) and many other muscular, neurological, epithelial, endothelial, sleep disorder, personality and mood changes, hallucinations, sometimes psychosis, etc symptoms. There is a list of about 300
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,574
    Likes:
    1,208
    Florida
    I didn't see nocturnal myoclonus (jerking when entering REM) in this list and I thought it was common with CFS ... BTW. I'm awake because I ate waaaaaaaaay too much fresh coconut at 9 pm and it's still sitting in my stomach ... I wonder how often slow digestion interfers with sleep ... X
  7. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    876
    Salt Lake City
    Hi Xchocoholic,

    Hmmm. Nocturnal myoclonus, I've had that all my life. I still do even after my other symptoms are gone. I'm not sure that it is part of the sleep disturbances seen with CFS/FMS and B12 deficiencies. I occasionally take Reglan for the food sitting in the stomach business. I don't take it frequently or regurlalry enough to have any of the long term side effects. I only ned it about once a month but when I need it it works wonders.
  8. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,574
    Likes:
    1,208
    Florida
    Hi Fred,

    I thought seizure and seizure like symptoms were common in CFS/ME. I have petite mals and some yet unidentified TIA or seizure too that makes me slur my words. I know I've had petite mals all of my life but the NM just started, or at least go so bad that I couldn't get any sleep in 1990, when I came down with CFS/ME/FM.

    I'm not sure if my NM is due to a B12 problem or not. Enzymatic Theanine (calms glutamate receptors) always takes care of this for me but sometimes I have increase my normal dose of 50 mg to 300 mg ... I used to use Klonopin for this and it worked too. I suspect my hormones are playing a role in causing my insomnia and myoclonus to get worse. My hot flashes are always worse during this time ...

    My B12 was 700 + the last time it was tested so I think I'm good. I was taking Metagenics Vessel Care at the time of my last test. I had to stop taking the Vessel Care because it gives me UTI symptoms, leaking and urgency, every time now. I am going to pick up some Country Life Adb12 and Enzymatic B12 infusion today or tomorrow though. I've been reading your thread on B12. I'll let you know how it goes ... thanks ...

    thanks for the tip on the Reglan. Have you tried digestive enzymes, Betaine or Probiotics when this happens ? I tried several digestive enzymes last nite but non with lipase (for all the fat in coconut) so they didn't work. I finally wised up and took some probiotics ... I fell asleep pretty quickly after that.

    It's been a rough day for me so far though ... My body really just wants to go back to sleep ... X
  9. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    876
    Salt Lake City
    Hi Xchocoholic,

    I thought seizure and seizure like symptoms were common in CFS/ME.

    They are certainly common in b12 deficiency along with multisensory hallucinations.

    My B12 was 700 + the last time it was tested so I think I'm good

    Unfortunately a serum level of 700+pg/ml means no such thing. In one study of neurological symptoms the average level before treatment of people who responded to mb12 was 700+pg/ml with some over 1500pg/ml. What the serum level of 700 means is that you have approximate 4 mcg total cobalamin including inactive cobalamins and vegetable cobalamins, waste cobalamins being returned to the liver for disposal and various forms of active and temporary cobalamins in circulation. It does not mean that you have sufficiency of adb12 for the mitochondria, mb12 for DNA and neurology and it is completely independent of Cerebral Spinal Fluid coblamain levels and says nothing at all about whether the brain and cord have enough of either or both active cobalamins for their needs. Studies have shown that people with CFS/FMS/Alzheimer's have low CSF/CNS cobalamins independently of serum levels.

    In one study of neuropathy 63% of the responders had intial serum levels too high to be accdeprted in most studies, "normal uMMA and "normal" homocyctein.

    In practice with thousands of people in my experience serum level under at least 3000-6000 is not predictive of lack of response to adb12 and/or mb12.

    Be sure to get some Metafolin too. Again, serum folate levels are not predictive of lack of response to Metafolin.

    The range of "normal" folate and cobalamin levels is based on decades of study with inactive cobalamins (cycbl and hycbl) and inactive folate (folic acid) that at least 50% have some impairment in converting and nobody converts more than about 800-1000mcg. It's no wonder at all that levels produced with inactive forms of vitamins are not predictive of serum levels with active forms or response or lack of response to active b12s and folates.

    thanks for the tip on the Reglan. Have you tried digestive enzymes, Betaine or Probiotics when this happens

    I'm on morphine which has as an unpleasant side efect the ability to stop parastalsis. It only happens sometimes for me, once a month or so and quite unpredeictably. Nothing else works, and works in 15-30 minutes.
  10. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    6 of them for me.

    Sleep apnea and alpha-delta abnormalities may be unknown to the person. Unless a sleep study cleared them of it, there's a good chance. Maybe even RLS. Just pointing out that these have the lowest % but they are also the ones that may be undiagnosed/unknown.
  11. Becky

    Becky

    Messages:
    23
    Likes:
    0
    Lakewood Ranch Fl
    I participated in a sleep study about a year ago. The doctor who conducted the study also works with FM patients. He diagnosed me with alpha/delta sleep disorder and prescribed Xyrem. He told me this was a common disorder among fibromyalgia patients. The Xyrem did help with the trigger point pain and I slept great. However, once the FDA trials were completed and Xyrem was denied as a drug for FM or alpha/delta sleep, my insurance would no longer cover it. In order to get it I could pay for it myself, $1,600 a month. I haven't won the lottery yet, so I can't afford it.

    The trigger point pain was gone and still is, however, I still had the muscle ache, tired, run down flu like symptoms and those are now compounded by the lack of sleep. Thanks FDA.
  12. chichi

    chichi

    Messages:
    1
    Likes:
    0
    Suburbs of baltimore
    can you add hypersomnia as an option as well?
  13. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    insomnia is the worst, if i make the effort to go to bed early it can take me hours to get to sleep and i end up getting less sleep than i would have got going to bed later
  14. u&iraok

    u&iraok Senior Member

    Messages:
    151
    Likes:
    27
    U.S.
    One of my multiple wakings usually occurs during the 5:00 hour. If I awake during this hour and no other hour, I often can't go back to sleep and I feel yukky physically and I am anxious and negative and worry about everything. Anyone know why that is? Someone has mentioned adrenals, could that be why? I have supposedly 'fixed' them but I think they're permanently damaged.
  15. Mya Symons

    Mya Symons Mya Symons

    Messages:
    833
    Likes:
    166
    Wyoming
    Cort, a lot of people don't just have the restlessness in their legs, but also have muscle spasms all over their body. Often, this keeps me and my husband awake at night. We actually had to get a memory foam mattress because his twitching also woke me up and mine woke him up. (There is also a snoring issue, but that is another story :D Anyway, I think it might be a good idea to add that to your poll if it is not too late.
  16. springblossom

    springblossom

    Messages:
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    Likes:
    0
    Norfolk, UK
    I have the muscle spasms all over - I frequently wake up during the night and am convinced it's because I am having episodes in my sleep. I'm also glad I'm not the only one with wild dreams - I have such vivid and strange streams I swear I wake up tired because I'm running around in my dreams!
  17. Calathea

    Calathea Darkness therapy

    Messages:
    1,083
    Likes:
    533
    Scotland
    Anyone else with circadian rhythm disturbances? I get the impression they're very common in ME, especially once people are housebound or near-housebound. Humans did evolve under a lot of bright daylight in the daytime and proper darkness at night, after all, and most healthy people aren't getting enough of both, let alone those of us who rarely get out to see the sun and have the computer or TV on after dark. Anyway, I ended up with Delayed Sleep Phase Syndrome (falling asleep at 4 am or so) which gradually worsened into Non-24 Sleep-Wake Disorder (running on a 25 body clock, falling asleep an hour later every day).

    The sleep study was absolutely useless, they were only interested in sleep apnoea or narcolepsy and the lab techs hadn't even heard of circadian rhythm disorders. They put me to bed far too early, got me up FAR too early, failed to get me proper food, wouldn't let me lie down during the day, and didn't so much as call a doctor when I collapsed on the floor due to the symptom flare-up caused by the sleep deprivation. I'd turned up to the consultation beforehand with a year's worth of sleep diaries beautifully showing the N24, and how it stopped dead and reverted to DSPS once I started using a bright lightbox, but the letter I got after the sleep study (I wasn't even given a follow-up consultation) made a couple of sniffy remarks about insomnia and mentioned in passing that I didn't get much deep sleep, but that was it. I found out later that my local sleep clinic has a poor reputation.

    Anyway, I can use 20mg temazepam (works beautifully) for emergencies but never for more than 3 days in a row due to ending up with rebound insomnia if I use it for too long. Ambien makes me hallucinate badly and then be really ill for a week. Amitriptyline worked years ago, but this year it actually gave me insomnia (and also caused appetite loss - I hear it usually does the opposite in both cases, but it was lucky for me, it got me started on much-needed weight loss). Antihistamines didn't do a thing. Gabapentin seems to be helping a bit, although this is on top of the other stuff that works for me, which I'll get to in a minute, and I'm generally having a strange time on gabapentin and don't know if I'll stay on it once we finish playing with the dose.

    Using a bright light box in the morning works immediately for me to keep my body clock at 24h, but I still tend to fall asleep far too late, and over time my sleep pattern can drift later still. A few years after I discovered light therapy, I started reading up on darkness therapy. It's nowhere near as well-known, and the research so far has been about various things including bipolar disorder, but it made sense to me to try it, and it works as well as a good sleeping tablet for me. One nice thing about is that once my orange specs are on, I can still use the computer late, as it was the blue light from the screen that was keeping me awake.

    I'm still finding napping can be a bit tricky. Some days I need a siesta, others I don't. I was doing OK with it for a while, but at the moment I tend to have trouble getting to sleep at my normal bedtime if I have a siesta, which is bloody annoying. I'm not having siestas too often at the moment, so I'm just taking a few capsules of valerian in the evening when I do. (This is about cost rather than worrying about getting addicted to valerian, I've taken it for extended periods in the past without problems.) Of course, I need to remember to take the valerian in the first place...
  18. Cath1972

    Cath1972

    Messages:
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    Likes:
    3
    Oxted, Surrey, UK
    I used to have problems staying asleep, I would ping awake at 3 in the morning and be wide awake for 2-3 hours and then of course knackered all day. That resolved itself. Now I tend to have sleep problems as I am dropping off. Ie that moment somewhere between consciousness and unconsciousness. Just as you are going over the egde in to full dream mode I will feel a surge of (irrational) anxiety followed by a strange taste /tingling of tongue. This can happen several times before finally going off.

    If I have a good nights sleep ie no disturbances, but wake to an alarm (normally 7.30am), I feel groggy and weak in the morning. If I am allowed to sleep in (like very very rarely ) and am not woken in any way, then I can easily sleep to 10.30 and feel good. If I have had a particularly bad run of it, I feel like a bus has hit me for days regardless of any sleep.
  19. Rory_5

    Rory_5

    Messages:
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    Likes:
    6
    My sleep became disturbed during my initial flu-like illness. I started waking earlier and earlier, having lighter and poorer quality sleep. Eventually I couldn't sleep at all--this lasted a few days, and I was a complete wreck.

    I had a sleep study done--to make sure I would actually sleep I took a fairly high dose of sleep meds. I slept without any deep sleep whatsoever, only stage one sleep the entire night. Also I had a lot of leg movement which is a new problem, but it goes with some other neurological problems I've had like muscle twitching even when awake.

    Since then (it's been just over a month) I've started using high doses of melatonin, and my sleep has improved greatly. It's still not the greatest, most refreshing sleep. But it's sleep. I need about ten hours just to feel functional the next day.
  20. alex3619

    alex3619 Senior Member

    Messages:
    6,888
    Likes:
    10,524
    Logan, Queensland, Australia
    My biggest sleep issues aren't listed. While I have severe obstructive sleep apnoea and non-refreshing sleep, my non-24 hour circadian problem is severe (not just insomnia), threatening at times to become something resembling narcolepsy - sleep/wake cycles of only hours. I also get respiratory problems while asleep, especially a kind of hyper-reactivity that is induced by breathing stomach acid fumes.

    Bye, Alex

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