The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

Sleep behavourial problems

Discussion in 'Sleep' started by silvermaneuk, Jan 7, 2011.

  1. I wondered if anyone suffered with this.

    I have always had very very vivid dreams, I seem to dream all night, I can dream 4-5 different types of dreams, very involved, very vivid, and full of detail, and quite often very bizarre!!

    I find them a bit exhausting. Anyway, my partner , bless her has had to put up with me being very active at night. I move all over the place, have accidentally hit her, tried to kick her out of bed, climbed all over her, sat up in bed and yelled. All without having a clue I am doing any of this. I wake up exhausted, which obviously doesn't make her feel any better, because she has had a terribly restful sleep..NOT. It can make life a little strained :(

    I was never this bad, always had very vivid dreams, but was jst told this was part of my M.E, the behavioural sleep thing has steadily got worse over the last 4 months.

    Went to my GP, he thought it might be some of the drugs I was on, so he took me off them, for set amounts of times, which didn't make any difference. I am not on anything major, I take thyroxine, Pariet (reflux) and vesicare (overactive bladder) and a daily antihistimine (severe pollen/dust allergies) viscotears (i dont produce tears). I was on tons of other drugs but like many of us, I have too many sensitivities, and a lot of them made me more ill, I have to deal with pain on a daily basis, but have no relief from it, cos everything they gave me, made me feel dreadful!

    I went back to him about it, and basically he fobbed me off, said that I could have retraining of my brain done, or something like that but would have to be private (which I cant afford to do). He was I feel unsympathetic, he didnt even want to refer me back to my neuro because my vertigo has been worse, with double vision, and basically said there wasnt a lot of point, because they cant treat it.

    Anyway, does anyone else get sleep behaviour problems? Have you done anything to help it, I mentioned melatonin (not sure of right word) to him, and he didnt think it worked. Also I am getting a bit narked off with people ignoring my illness, as if I should just put up with it. Surely they can 'do' something?? I am sick of being the one who is always in charge of my illness......isnt this their job?

    So any suggestions how to handle, my normally, 'good' doctor would be great!? :)
  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi silvermaneuk,

    They probably don't have a clue how to treat it, not one. The worst thing about this illness is that its been on the bottom rung of the priority ladder for half a century or more. Only in the last year and a half are we getting much attention, and research takes time.

    I don't have an answer for your sleep and dream problems. It could still be the medications, short elimination of each drug might not show the problem, particularly if there are one or more interactions between the drugs.

    If you do find an answer to the problem, then please post it on these forums as it may help others. Of course, since I am the first to respond, there might be a dozen or more people yet who have positive advice to give. Here's hoping for that.

  3. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA

    Time for a sleep study?

  4. floydguy

    floydguy Senior Member

    It might be interesting to set up a video camera and record your sleep. You could edit the "interesting" parts and show to your doc and catalog how much you turn over, sit up etc. If you go for a sleep study, I highly recommend that you do some research and make a suggestion to your MD (if possible). I think there can be a big difference between some sleep centers.

    As Alex has stated, 99% of the doctors out there know less about CFS than most people on this board. So don't expect most docs to lead you through this. It is the other way around.
  5. *GG*

    *GG* senior member

    Concord, NH
    I have heard that a person can take Melatonin up to 12 or 15mgs? Perhaps you could try this? Sorry, most Dr's are useless with this, so you need to do the work!

  6. leaves

    leaves Senior Member

    Interesting i lost my ability to dream, with p5p, Sam-e, activatrd thiamin and methylfolate i can restore my dreams, with ldn too. A lot of me patients complain about lack of dreams Ot excess vivid dreams, I think it Is a key symptom.
    Vivid dreams is a common side effect of vitamin b6 supplementation.
    Do you take a lot of vitamin b6? Maybe shifting the balance to b12 can help?
    Eta: Hey this suggests im making sense with the b6...
    You may also want to work on balancing your blood sugar.

    Btw one side effect of melatonin is .. Vivid dreams.
  7. Hey Leaves I only take B12 at the moment, because of my Bells Palsy, as it was recommended. Otherwise I don't take supplements, been there done that worn the t-shirt lol I have my blood sugar regularly checked and its always been normal.

    I think like you guys have said I am going to have to try and educate my doctor, its just annoying because I want help with it! Should just be able to go there and have it dealt with!
  8. Enid

    Enid Senior Member

    I'm afraid I cannot help much except to say all you speak of is very familiar. My GP gave me up long time ago after a useless trial of one antibiotic. Vivid dreams I recall came very early on (as Royal Free) for a spell - accompanied by visual and aural disturbance (pretty ill). It left on its own I think after Gabapentin (prescribed low dose for pain only I raised to full epileptic dosage which allowed long sleeps). No cure but did aid. Hope someone here can throw more light on things for you. Gabapentin/Neurontin - must discuss with you Doctor first.
  9. justy

    justy Donate Advocate Demonstrate

    I have had the very vivid and often disturbing dreams for years. It was one of my first symptoms 15 years ago. When i went into remmission they calmed down a bit, but for the past 3 years as i have got worse so have they. I find them utterly exhausting both physically and emotionally. I read years ago that they were a symptom of M.E, but im not really sure as i havent seen much about it in recent years.
    I have many epic technicolour dreams in one night. I also have horrific, violent evil nightmares which i find very distressing as i am a gentle person and i avoid horror films as they upset me. Pretty nasty having my own mind dream them up for me though!

    I wonder if it is to do with not getting into the deepest stages of sleep. I am sure i have had this problem as i sleep very light and wake up continuously throughout the night, sometimes once an hour or so.
    I dont know what you can do about it, but i do sympathise.x
  10. Enid

    Enid Senior Member

    I'm pretty certain of the loss of the deep sleep phase. Now I,m able to take a glass of wine or two occasionally with dinner (extra sleepy making) I noticed extra deep sleep and a feeling of refreshment/well being when waking. Not suggesting red wine is any answer for obvious reasons but wonder if there are any suitable sleeping pill that does not leave one day time drowsy whilst restoring deep refreshing sleep.
  11. Thanks guys for your input, Justy I totally related to your story, re- horrible dreams :-(

See more popular forum discussions.

Share This Page