HELP -anyone with severely altered sleep wake patterns????

Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Dec 30, 2005.

  1. Bunchy

    Bunchy New Member

    I have been ill 18 years - first slept a lot but couldn't get up early anymore.

    Since getting sicker have got up later and later due to severe drugged feeling when trying to wake up and also due to the onset of severe insomnia two years ago.

    Now I get to sleep between 3 and 4am if I am lucky and try to start dragging myself out of bed shortly before midday.

    In a mess with benzos and sleeping tablets (getting help from another forum for this) which don't work anymore but which, if reduced, worsen the situation further.

    Anyone in the same boat?? If so I'd be reaaaaaaally grateful to hear from you pleeaaaase.

    BTW sleep scheduling was uselees for me and only made me sicker through lack of sleep.

    On that happy note (lol) I wish you all a happy new year.

    Love Bunchy x
  2. sdown

    sdown New Member

    Yes, I had severe insomnia when I first took ill 5 years ago. I would sleep till 0300 then be up till 0500 for example. It was awful. Dr. Carol Ann Ryser in Kansas City, Missouri placed me on blood thinners (heparin) for 18 months. She said over 90% of her CFS and FM patients get placed on blood thinners because they have poor circulation. Ask the doc to check your sed rate. I also had the HHV6 virus. The doc said alot of her patients have viral or bacterial activity or both. I was on biaxin for 18 months. My adrenals were wiped. I take 25 mg of cortef a day and 25 mg of DHEA a day. I have Addison's disease which is also known as adrenal gland exhaustion. I am anemic and take B12 sublingual drops under the tongue. After 3 weeks on the blood thinners my dizziness stopped which was wonderful. I sleep really good now unless I have an infection or the flu. You can check out her website by typing in Dr Carol Ann Ryser, Kansas City, Missouri, Health Centers of America and do a search on her. Good luck!
  3. LittleBluestem

    LittleBluestem New Member

    Does it matter what time of day you go outside?
  4. PVLady

    PVLady New Member

    I definitely have a problem with insomnia. I only sleep a couple of hours at a time each night, but I do go back to sleep. I take Ambien which helps.

    I do get up fairly early each day, usually by 7:30 am. If I had a bad night I will take short naps during the day.

    I think many of us here have problems with sleep, perhaps it goes along with fibro.



  5. tansy

    tansy New Member

    practices did not work for me either. I'm pleased you are getting advice elsewhere too this is a horrible problem. It was after about the same number of years that I developed profound insomnia, zopliclone worked better than anything else, but there were many times when it had only a minimal effect.

    As result of die off from taking samento etc, I developed a weird kind of energy, the kind normally associated with hyperthryoidism, and the standard dose of zopiclone no longer worked. Doubling the dose was slightly better but it took dealing with other issues to make the levels and consequences of herxing less severe resulitng in my sleep med being more effective.

    All I can add is hang in there, because a few months ago the max dose of zopiclone started to work much better and at long last I was able to benefit from restorative sleep.

    My circadian cycle is still skewed and my adrenals clearly not recovered sufficiently to make trying to adjust my sleep/wake cycles wise. So now whenever possible I go with the flow.

    love, Tansy [This Message was Edited on 12/31/2005]
  6. mbofov

    mbofov Active Member

    I used to have horrible insomnia, waking up at 1:00 or 2:00 and being awake for 2-4 hours.

    A few years ago a saliva test revealed high cortisol which was interfering with middle of the night sleeping. I started taking Seriphos and that helped enormously. I found it was important to take it in the morning, not at night.

    Also, amino acid 5-htp helped a lot with sleep also. It naturally raises serotonin levels without the side effects of prescription AD's.

    Mary