What to do when all sleep meds stop working????

Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Apr 3, 2006.

  1. Bunchy

    Bunchy New Member

    Trying to wean off of sleep meds.

    Have taken them for 5 years + now - initially just a small dose of Lunesta then the larger dose. Added in Diazepam for nervous system sensory symptoms and anxiety. Ambien was also given to me to alternate with Lunesta. I have also used Klonopin only once a week for a while but from 2-4mg at a time just to try to get a decent night's sleep.

    I went through an awful time and started to up the meds just to cope mentally - have since weaned down but nothing works now.

    Currently taking one small Lunesta and 10mg Diazepam a night which is part of the taper plan. But since doc is very happy to prescribe me anything anytime I have lots of spare so when stressed or awake most of night (happens quite often) I just take more pills, whatever I have most of. Sometimes more Lunesta, other times a lot of Ambien etc etc.

    Circadian cycle is skewed as well - sleep time between 4-5am and wake time between 11-12am.

    Can't get myself sleepy at night - have tried Valerian, does nothing. Melatonin affects allergies and makes me feel sick and headachy.

    Build tolerance to higher doses of any med including Trazadone very quickly.

    I thought of asking doc to switch me to Xanax or Ativan but I know I'll get used to it within a week and that they are even heavier meds.

    In process of moving house so extra stress and more wakeful at night so exhausted in day.

    What's a girl to do???

    Love Bunchy x
  2. Shannonsparkles

    Shannonsparkles New Member

    My circadian rhythm was so bad that I'd be up a few hours later every night, until I was awake all night and slept all day. Finally, I pushed to stay up even later, until I was up during the day again. But I keep on sliding forward, getting to bed later and later.

    I guess something in our brains is damaged. The pineal gland is supposed to regulate out sleep/wake cycle so that we're awake during the day and asleep at night. My naturopath gave me a product called TPIN, which is a pineal extract. As far as I could tell, I got worsened mood symptoms and nightmares on it. I also got a "no" feeling intuitively when I'd pop the pill; I trust my gut on a lot of things. But it's supposed to be good for CFS and even jet lag. If anyone has sucess with it, I'd like to hear about it.

    I sleep badly and at strange hours and on an irregular schedule. As long as I can see some daylight, after all those weeks of darkness, I'm content. I use herbal sleep aids, but they only help me to sleep if my body's really ready to sleep. I keep hoping that this is a symptom that will improve if I get the right treatment for it.

    I'm trying melatonin presently. At first I used .5mg, but that made me wake up at night. My ND explained that my body WAS using the stuff, but then runing out and waking up because the dose was too small. So I'm up to 1mg... and sleeping just as badly as before I started. Can't I just buy a bottle of knock out drops for emmergencies? ;)

    Bunchy, you must be feeling frustrated. If you took a different medication every night, like, cycled them, would the tollerance still build up? I wish there was something I could do to help - short of the knock out drops or a big ol' rubber mallet. Please tell us if you get anything that helps?
    (((wishing you zzzz))) Shannon
  3. NyroFan

    NyroFan New Member


    For sleep I take: Klonopin, Ambien and Elavil.

    It works for me.

    A glass of milk is also supposed to help before bedtime.

  4. JewelRA

    JewelRA New Member

    I have found that if I take ANYTHING every night I will build a tolerance to it. I try to alternate Ambien, Tylenol PM and valerian root and some nights not take anything.
  5. Chermione

    Chermione New Member

    I build tolerance too quickly. Alternating is the only thing I've figured out gives me my best shot, although not full proof. You just never know if it will work this time or not. It sucks. I do try the Sleeping Time Celestial seasons tea and mentally preparing for bed an hour ahead of time if I can. That helps whatever sleep aid I take. It's a huge process. Can't just go lay down and shut my eyes whenever I want.
  6. Michelle_NZ

    Michelle_NZ New Member

    I feel for you... I've been in a similar position myself. I have a number of different meds I'm taking when I go to bed, and usually another handful at 2am. Nothing really works well, but I find that after about 3 days of getting 2 hours of light sleep a night, I might get a night of about 5 hours.

    I am so sleep deprived. Things have been very bad since September last year and I am certain that if I could improve my sleep then the other CFS symmptoms would reduce.

    I went to a sleep therapist about 2 weeks ago and he suggested bright light therapy. Apparently if you expose your eyes to bright light (10,000 lux) at the same time each day for 30 - 60 mins it can help reset your body clock and biorhythms. There is lots of research that suggests people with CFS have their biiorhythms messed up.

    Anyway, I have ordered a sun box (actually its a visor and I wear it like a hat) and it should arrive tomorrow. Have a look at wwww.sunbox.com

    My doctor has told me to do the following with the visor:
    - Make sure the light is shining into my eyes
    - Wear it from 7.30am each morning for 30 - 60 minutes
    - Try to eat at the same time each day
    - If you do exercise (I cant) do that at the same time each day
    - Go to bed at the same time each day.
    - Take 3 mg of melatonin 2 hours before you want to be sleeping each night.

    I myself am getting so desperate about my sleep and I am starting this light therapy within the next few days as soon as the visor arrives, and I can get a prescription for the melatonin.

    I'll keep you updated with my progress. The trial is for 2 - 4 weeks.
  7. Michelle_NZ

    Michelle_NZ New Member

    The other therapy he suggested is Sleep REstriction. Basically you keep track of how many hours you actually sleep while you are in bed - for me its about 2 or 3. Then you put forward your go to bed time till say 4am, if you are getting up at 7am.

    You keep doing this until your boday becomes so thirsty for deep sleep that you drop into this as soon as you go to bed at 4am. Keep doing this until it is consistent, then try pulling the go to bed time back slowly.

    Suggest you google this if you want to know more, as my description is probably not that great.

    What I can tell you tho, is that I really dont want to try this therapy myself. I cant imagine trying to stay out of bed till 4am - I think its too aggressive, and I will just end up spending more time awake and feelingn worse than I already do.

    But apparently, it works for 60 - 90% of people who just have chronic insomnia. The specialist I saw did say that with CFS its very complex and the sleep disorder is very hard to treat.
  8. neeter1

    neeter1 New Member

    I have been taking Melatonin for years..it really helps..but, recently experiencing waking up on and off...so added Benedryl (1) to my nighttime pills (I also have itching terribly from meds) am SLEEPING AND DREAMING!! Which means am going into the 4th stage of sleep most of us don't get too...

  9. caroleye

    caroleye New Member

    I've alternated them all, and still can only get 3-4 hours sleep w/ZMA, Cal/Mag & Calms Forte. Last night was so bad I was taking everything I could lay my hands on.....not good.

    But discovered something in my last couple of neurofeedback sessions. My provider hit a site that worsened my sleep even more..........took me into racing brain syndrome.

    So I looked back at my notes, and found another site that actually gave me the best sleep I've had in years. So now tomorrow I'll have her hit that site.

    Problem with this for me is that I can only tolerate one second at a time, so have to travel each week for that short session.

    But it's worth it, as it's improving my mood & energy.

  10. Bunchy

    Bunchy New Member

    I had no idea so many were in the same situation.

    Yes I think rotating meds is also the best thing I can come up with at the moment and trying to keep doses as low as possible on the "good" nights.

    Interesting, too, that some of you have that skewed circadian cycle. I am the same, sleep scheduling is impossible for me and if I follow my body, I just sleep later and later and end up going round the clock again and again - it really is a struggle to try to keep any kind of routine when my body is not interested...LOL

    I hope one day soon, they can come up with an effective sleep med that one doesn't build tolerance to and has few side effects.

    Hope you all get some decent sleep tonight!

    Thanks again, I will bookmark this thread so when I am tearing my hair out from not sleeping I can read all your nice posts :)

    Love Bunchy x

  11. lurkernomore

    lurkernomore New Member

    Hubby and I are leaving town for the weekend and I am all a-jitter for this very reason. He sleeps, every night and is so disciplined (or should I say BLESSED) that by 11, he thinks all lights should be off and everyone in bed. MMMKay! Which has sort of forced me to sleep in another room, I admit with some embarrassment.

    In the past, we have rented a small cabin or home during these getaways and it is due to the fact that I am a nocturnal house roamer. But this year, he went online and rented us a regular, albeit rather large, hotel room.

    I know I am probably setting myself up for sleepless nights by fearing that I will be miserable, unable to sleep, as he lies there snoring away, but I can't seem to help it. My sleep med I have taken for well over a decade now, is no longer effective and what should be a lovely, romantic weekend is turning into something of dread for me now. What to do, what to do!

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