Extreme Insomnia

Discussion in 'Fibromyalgia Main Forum' started by vivian53, Mar 11, 2009.

  1. vivian53

    vivian53 Member

    I am having so much trouble sleeping that I am stumbling around in a fog all day with burning eyes, achy body, and feeling like I could pass out at any moment. I really can't think straight and really need to do so. I have recently started caring for my elderly parents and need my wits about me and a lot of energy (not to mention patience).

    I am taking Lyrica, Elavil, and Lunesta to sleep. Sometimes I add Valium to the mix. It sounds like I'm going to OD or sleep, one or the other, but I'm not. They are not working. I am also practicing good "sleep hygiene" to no avail.

    Does anyone else have these problems? Anyone have a solution? What am I doing wrong. I am shaking so much I can barely type anymore.I really can't go on much longer on 2 to 3 hours of sleep. Any suggestions or comments wil be appreciated.

  2. nan2dance

    nan2dance New Member

    just for a day or two. I understand your responsibilities. if you're going to be there for them in the long haul, you need a manageable situation.
    in the short term is there anyone, even a professional, that can take over for a couple days until you're feeling sane again?
    in the long term, is there anyone you can delegate part of your responsibilities to? even if you don't want to ask or relinquish? or don't think they would help? ask anyway.

    so sorry you're in this Vivian. I've been there climbing the walls crazed with lack of sleep. it is awful. and it is temporary.

    if the drugs don't work and you can NOT take them, don't. really. you said they are not working. so don't take them.

    if you can get a couple days, just a couple to float weary and free do it. clear out as much as you can, ditch as much as you can, delegate, and ask for help, and then lie around as much as you can/want to. give up on sleep. just rest and pamper. keep no schedule. to heck with sleep hygeine. not now. If you get a little sleep here and there, good. lie and listen to music. eat and watch boring tv. stare into space. float and rest and know that change will come. give up on sleep and just make yourself as comfortable and relaxed as possible.

    sometimes the only thing to do is nothing.

    this is temporary. in the meantime, take care of yourself.

    man, does that sound lame. but i mean these exact words. life is suspended when you're underslept. go with it. suspend your responsibilities as much as possible and float in the twilight world. make that the place you inhabit and float there as healthfully and comfortably as possible.

    it always passes...eventually.

    hang in there,

  3. zenouchy

    zenouchy Member

    I don't know your medical history or why you are taking the meds you are taking. However, one possibility is that you could be OVER medicated. I have never heard of someone taking 3 meds for sleep and then sometimes adding a 4th. One or two should do the trick. Since these aren't working, *talk to your doc* and get help! Sleep meds aren't always the answer to a good night's sleep unfortunately.

    I got a sleep study recently, and my doc says that sleep meds will help PUT you to sleep. However, they don't give you deep, refreshing sleep. That's so tough for folks who can't get to sleep like me. I'm trying to figure out what to do on that one! No easy answers there. Technically the sleep meds aren't good sleep hygiene! Such a Catch 22.

    Also, do you exercise? It helps TONS with sleep. Unless your doc says you can't, it helps a lot. You don't have to run any marathons, but building up gradually and even doing gentle stretching or yoga really helps!!

    Lastly, Vivian, I'm wondering if you might possibly have sleep apnea. Daytime exhaustion is a key symptom. I would strongly recommend getting a sleep study and to find out what's going on. You deserve a good night's sleep!

    All the best,


    [This Message was Edited on 03/11/2009]
  4. hensue

    hensue New Member

    On good days eating right not totally distressed or hurting it works pretty good. I also wear earplugs any outside noise and I am up.
    When we are up we are up for good. My whole family brother and sisters do not sleep so what is the deal?
    I do know that if i dont sleep I hurt a lot and will be so fatigued.
    Take care
    my sister who was taking lunesta and something else says of all things ambien cr works for her.
    Trial and error I guess
    Take care and goodnight
  5. Nanie46

    Nanie46 Moderator


    I also had extreme insomnia....got worse in the last few years. Something to consider/rule out would be babesia infection which is known for causing a racing mind that won't turn off, borrelia infection, bartonella infection. They can occur in combination too.
  6. vivian53

    vivian53 Member

    I want to thank you all for your suggestions and encouraging words. Your responses alone have helped me feel better, sleep or no. I am going to cut back on all of the meds, slowly but surely. They aren't working and I do feel doped up all day. I have also asked my SE (spousal equivalent, he hates the term :) ) to help me care for my parents and he is.

  7. zenouchy

    zenouchy Member

    My pleasure to try to help. PLEASE ask your doctor before you taper off the meds. I think it will help, but I'm obviously no doc and don't know your medical background!

    Also, you might consider seeing a new doctor for a better treatment plan. It sounds like your existing doctor might have not known what to do see he/she just gave you a lot of drugs to take. There's nothing wrong with taking a drug or two with a specific goal in mind, but taking so many at once just for sleeping to me raises a red flag. Just remember too that you should always tell your doctor if a drug doesn't work anymore or if you have bad side effects. FEEL BETTER!

    Warm hugs,


    [This Message was Edited on 03/12/2009]
  8. vivian53

    vivian53 Member

    Hi Erica and nofool. I am not a doctor but have spent many years working with people on psychotropic medication. I will see a doc about cutting down on my meds. I added the Valium at night myself so I will d/c that now. But with Lunesta and Elavil... I will discuss the discontinuation of those with my new doc. I believe I have reached a tolerence level with the Lunesta and hate the side effects of Elavil; detached zoned out feelings with a mouth as dry as the Sahara. I only take 50 mgs. Also have seen too many people gain too much weight on this medication.

    I have never heard of microsleeps but thanks for the warning. My son has a new car with hand gears and is willing and able to drive me around for a while.

    I do walk on my treadmill about 4 times a week and do my Wii the other days. I am too ehausted and dizzy to do much the last couple of weeks though. I don't eat anything white but turnips and only lean meat. I take lots of vitamins and minerals. I am getting GSE today. Don't want to make too many changes at once or I won't know which is doing what.

    nofool I believe you are right (pharaphrasing here) it's going to get worse before it gets better.

    Assuming that there are no stupid questions let me ask this one: how do you accomplish a sleep study went the subject can't sleep?

    Thanks again for the thoughtful and valuable suggestions. I hope this post makes sense.

  9. vivian53

    vivian53 Member

    Hi Nanie46. Thanks for your response. I have no idea about infections or what method is used to diagnose the ones you mentioned. I don't think I have CFS even though I share symptoms with those who do. To be honest I don't really know.

    any more info on this will be appreciated.

  10. LadyCarol

    LadyCarol Member

    It's worth cutting out the vitamin & mineral supplements until you have stablized your sleep, it could be something in the supplements that is contributing to the insomnia, too much of certain vitamins can cause insomnia and/or contribute to insomnia. Simplify as much as possible your medications in consulation with your doctor.

    Eat whole foods and don't eat any processed foods and foods/drinks loaded with sugar and/or caffeine. Try not to eat meat and high protein foods for your late afternoon or evening meal, instead have a light carb based meal with some fresh fruit and a banana. Protein rich food is best eated in the morning as it takes a long time to digest. Light carbs & fruit help provide the right type of fuel & antioxidants for sleep contribution.

    Try to ensure you get sunlight and bright light during the morning if possible as this helps set the body clock which in turn helps the sleep process later in the day.
  11. Nanie46

    Nanie46 Moderator


    Babesia, borellia and bartonella are tick borne illnesses. Many people are infected with at least one of these infections and do not know it.

    To find out more, go to the Lyme board. Feel free to post over there for me and I will answer any questions you want. You may want to post your history and symptoms.

    I can tell you more there about testing, symptoms, diagnosis etc.

    I check the Lyme board regularly so I will watch to see if you post there.

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