Sleepiness, unable to ward off sleep Please share

Discussion in 'Fibromyalgia Main Forum' started by Goldyfm, Sep 27, 2006.

  1. Goldyfm

    Goldyfm New Member

    I was wondering if anyone has experienced uncontrollable sleep attacks. This is very bothersome to me as I have been a longtime insomniac who has required sleep aids for a number of years now. I have FM and was having trouble getting comfortable to fall asleep and would awaken several times a night when I would change positions. I had a sleep study recently and did not stay asleep long enough to finish the study. I was subsequently given requip for restless leg syndrome and continued with sleep aid and given an additional muscle relaxant to boost their potency. I still only sleep 4-5 hours and have not experienced any improvement of this malady.

    Recently I have had uncontrollable sleep attacks. I will fall asleep sitting up and not for a short time but for several hours and upon awakening I have trouble remembering what happened prior to my sleep attack. I have not driven in several months as I had one occasion where I had gone out to lunch and could hardly stay wake during that lunch meeting and upon leaving, I stopped by a friend's and had this uncontrollable urge to lie down. When I awoke it was 3 hours later and I was disoriented as I did not immediately remember where I was or why I was there.

    I went to the rheumatologist and he requested I not drive until evaluated by a sleep study doctor and neurologist. I have seen the sleep study doctor who spent all of 3 minutes and all he did was write a new antidepressant (which I advised the rheumie and he agreed with me that to change that was not in my best interest at this time) I can not see the Neurologist for another 3 weeks.

    I just wondered if this is a common occurance in those with FMS or if this is a red flag of some underlying cause. Any info on coping with this additional symptom and what treatment one may have received will be appreciated. I had a MS workup just a little over a year ago that was negative.

    I want to say that this happens whether I have slept the night before or not. I never feel rested whether I sleep or not. Just one more reason why I can't function outside of my home. :(
  2. sleepyinlalaland

    sleepyinlalaland New Member

    I so feel for you because I know what a frustrating and "invisible" burden it is to try to funcion on a professional level (or ANY level) when the sleep-deprived need to sleep is SO overwhelming.

    It is for this reason that I am finally on disability (I'm near 60). I am always SOOOO sleepy (due to insomnia) that I cannot function in any consitant way at all. The difference between us, is matter HOW sleepy...I am not actually able to SLEEP if given the chance to. Stuck in the twilight zone...not totally asleep, not fully awake. Purgatory.

    I have two daughters (early 20's) who have many functional issues...neither will complain of insomnia...yet both say they never feel refreshed by sleep. A family bummer.

    Your problem could be NAROOLEPSY. It is OFTEN (I think, usually) not diagnosed easily, or takes years to be diagnosed. There is a website you may find of narcolepssy "message board". I think you will find a helpful support group that way. It is pretty active, and I think you may find more support there.

    Best to you, sleepy (oh, sososleepy!)
  3. Goldyfm

    Goldyfm New Member

    I had a sleep study which was inconclusive as my sleeping pill only works for a few hours. I was instructed to stay in the bed by the technicians for a couple of hours to "complete the study" I knew from that study that I did have RLS but they saw no evidence of sleep apnea. I was wondering how others coped with this problem and whether any medication could help the symptoms. I have also filed for disability for the FM and accompanying IBS that leaves me pretty much homebound. I guess I should be grateful for being relieved somewhat of dealing with the daily symptoms at unscheduled times :) but I still would like to control some part of my life. Thanks to those who responded.
  4. mosherpit

    mosherpit New Member

    I do get these attacks, not as often as it appears you are having them. I just sleep and sleep and literally can not wake up, it scares my husband and daughter sometimes.

    In June of this year I started working part time instead of full time (due to day care issues) and these attacks happened less.

    I am noticing that I am more likely to have them just before my period each month. I would definitley encourage you to continue to pursue an answer from someone in the medical field as it is an interuption to life and you deserve to interact and enjoy your children and others in your life. Good luck.
  5. cct

    cct Member

    Hi goldyfm,

    I have sleep attacks also! It is a little like narcolepsy. I just cannot stay awake no matter how hard I try. It is almost like passing-out. One minute I am fatigued, but awake and the next minute I am sound asleep.

    These sleep attacks seem to come and go, just like all of my other CFS/FMS symptoms. Sometimes they are very prevelant and sometimes I can go for a few weeks without having an attack.
  6. BlueSky555

    BlueSky555 New Member

    Hi goldyfm,

    Yes, I have experienced this. There are a couple of differences; I am not lying down; I just sleep wherever I am. I have been falling asleep here at the computer, with my head falling down, hitting my forhead on the keyboard waking me up, and also sitting up in my recliner.

    I have even stood up, trying to stay awake to watch TV and fell over, barely caught myself, from falling into the TV.

    But, I don't sleep for long. I wake up within a few minutes, unless I am sitting in the recliner. There, I have slept a couple of hours.

    I also am aware of what I did but you stated that you don't. It's a terrible thing to go through, having no control over it.

    You are right not to drive until this is taken care of; I have also fallen asleep and ruined the 2 right rims on my car, driving on the edge of the ditch; fortunately, the noise woke me.

    I hope you get this issue resolved soon.

    Take care,

  7. mrdad

    mrdad New Member

    Did the problems get worse after new meds as that could
    be part of the problem. (??) I sleep a lot too but not
    the problem level you seem to experience.

    Hope you find an answer.
  8. monamea

    monamea New Member

    Hi Goldy,

    Yes I too fall asleep all of the time. I have sleep apnea and narcolepsy and can fall asleep anytime, it scares me alot, I have to drive because I have no one else to do it. I have learned to take water and fruit to eat, I know that if I were to have an accident I will be in big trouble, so I try to do everything in that one day so I don't have to go again. I'm unable to work and am afraid to babysit my grandkids because I'm afraid I'll fall asleep and drop them.
    I've had both for over 10 years so no matter how much sleep I get I'm still tired. Alot of people think I'm lazy but I know I'm not. I'm up at 3:30a.m. because of pain so I get all of my work done in the morning, this is the only way I can do it. I have lympfedema so this works out better I can sleep and keep my feet up at the same time.
  9. supergirl99

    supergirl99 New Member

    I can seep for hours, but not so much that I just fall asleep where I am . I have the urge (stronger than that but can't think of the word) and I have to get to bed and sometimes I can sleep for hours, I come round occasionally but it's like my eyes open and shut again and I can't wake up even if my brain seems consious! Think you are right to persue answers from medical people though and deffinately not to drive until it's sorted.

    Chin up
    [This Message was Edited on 09/30/2006]
  10. Marta608

    Marta608 Member

    I just posted to her thread about sleeping. I say if you can sleep, sleep! There may or may not be more to it but sleep will not hurt you unless you're operating large equipment, like a car.

  11. shootingstar

    shootingstar New Member

    I read somewhere that Xyrem can help with this. No experience with it myself.
  12. msbad66

    msbad66 New Member

    Yes goldyfm, I can relate. At least one to two days a month usually. I can not stay awake. But normally I can't go to sleep without medication. The days I can't stay awake just creep up on me with no warning.

    Those days I have to just go with it and sleep. No matter what else is going on during the day it has to wait now.

    After 4 years, I have grown used to this behavior now and my family just lives with it.

    from my crazy life,
  13. Goldyfm

    Goldyfm New Member

    No, I have not had a medication change in 6 months. I have multiple drug allergies and my doctor is very reluctant to add a new med until I have been on one for some time. This week I have slept most of the days away. I guess I am depressed thinking this may be the new norm for me. I can't decide which of the two is the lesser of two evils, sleeping all the time or not sleeping at all. So it goes.
    Thanks to all who shared.