Is sleep a lost cause?

Discussion in 'Fibromyalgia Main Forum' started by daynakb, Aug 6, 2009.

  1. daynakb

    daynakb New Member

    It seems I've been fighting to get a good night's sleep for what seems like forever. I know it's part of the fibromyalgia but it's the part that really gets on my nerves! I went years without getting any sleep. Doctors sent me to psychiatrists who insisted that talk therapy would help de-stress me. They insisted that I needed a natural sleep, not chemically induced. Well, like I told them, that didn't help. Following so-called "sleep hygiene" never helped. Exercise, watching my diet, trying to manage stress, hot baths, no TV after a certain time, no lights in the bedroom, ambient noise, etc. Nothing worked. I never wanted sleeping pills but the my doctor finally prescribed Ambien. That helped for a week, then back to insomnia. My doctor told me to take Melatonin and Ambien. That's been helping. I still don't sleep well, but I was sleeping some. Now I'm back to not sleeping again. I'm on a new medication for complications from gall bladder removal but the doctor says that shouldn't be causing a problem. He says that taking Lyrica, Lexapro, Topamax, Percocet should make me tired. What I can't seem to get through to him is that I am tired - very tired. I just sleep. I'm out of ideas.

    Does anyone here have any suggestions?
  2. heapsreal

    heapsreal New Member

    I would suggest to have 3 or so sleep meds on hand and rotate between them. I find most sleep meds work but not 2 nights in a row, maybe use once or twice a week. This helps avoid tolerance to the meds so they dont stop working.

    I use seroquel 1-2 times a week (there seems to be a stigma about this med and side effects etc but i havent had any, maybe because i use it intermittently). Imovane/zopiclone 1-2 times a week. The other nights i use an antihistamine with lyrica or add some herbal supplements to it like valerian etc. Occassionally use doxepine.

    I use melatonin when i feel my sleep cycle is changing like when i want to sleep during the day instead of night etc and i find it helps shift it back to normal, doesnt really help me sleep as such though.

    Also another good supplement i have found is called phenibut, mostly it is recommended at 500mg-1000mg but i have found 3000mg is helpful for sleep, google it and read up on it.

    When i look at what and how i use sleep meds i feel like a bit of a druggy, but i think alternating between different meds actually helps avoid addiction etc. Sleep is so important in cfs, its not a cure but without sleep its 'alot' worse.

    good luck, sweet dreams
  3. daynakb

    daynakb New Member

    How do you get the doctor to agree to more than one sleep med? I guess with herbals you don't need a doctor's permission, but my doctor gets snippy when I take anything he doesn't authorize. I've come to see that docs are great at handing out the Lyrica, which does not help me sleep, but constantly prattle on about "natural" sleep, which would be great except I'm not getting any! Sorry about the negativity, but I've been on this merry-go-round for a very long time.
  4. paulac7

    paulac7 Member

    I too have sleep problems--tried LSD (ambien), but the wacky dreams were a little much. I found that using plain old Benadryl (diphenhydramine) will put me out like a light in around 20 mins, and doesn't have any 'morning after' residuals. Doesn't seem to interfere with my other meds either.

    Good luck!!

  5. heapsreal

    heapsreal New Member

    the only actual sleep med scripts are zopiclone, seroquel is off label. Lyrica only helps me sleep better when i take it with something else. I explain to my doc what im doing and he is happy with that, plus he can tell if i was going overboard by how often i ask for scripts. A script of zopiclonex30 lasts me 2 months plus, so its not overboard. I think docs are more fuuny about benzo sleep meds. Sedating antidepressants(doxepine) etc arent a concern as they arent addicitive like benzos. So when having 3 or so sleep meds i would only have 1 benzo type sleep med, the others are from other drug classes. Just have to be careful with drug interactions.

    The cfs book 'from fatigue to fantastic' recommends a similar plan for sleep meds. Its not perfect but its all we got. yeah i hate insomnia too. cfs with shift work doesnt help
  6. musicnar81

    musicnar81 New Member

    have you tried acupuncture?
  7. sleep what is that! IF I sleep 2 or 3 hrs that is alot. When I first went to my rheum. dr he gave me a script for sonata and it was great, and no morning after effects. He said sleep is important for fibro patients. Now yrs later when I asked again, he says we all have trouble sleeping. HELLO! Don't say get a new dr as where I live rheumalogists are just two groups. I have found no drs really understand fibro. I might try benedryl.
  8. hubcap_halo

    hubcap_halo New Member

    I'm so sorry you are having continued sleep problems. It's the worst. Here's what's helped me.

    One responder suggested rotating meds and herbals. Excellent idea and doctor recommended. The other is low doses of several sleep meds, often combined with herbals.

    If you haven't been taking too many sleep drugs, you may be pleasantly surprised. I started with Klonopin 1mg and my doctor kept upping it until I was on 3mg a night but I was sleeping 6 hours straight, waking and then falling back for another 3 or 4.

    This past year my sleep got really bad.

    It's finally getting better and I'm basically taking the medicine cabinet, but I'm FINALLY sleeping 6 hours straight, waking and then sleeping more, enough to feel more rested. I'm not worried about the meds, because I've found that my sleeping self is like a dog. It can be trained. Not sleeping has become a habit, and now I'm making a new habit--sleeping! Once you're sleeping better you can wean off the meds to the essentials at lowest doses. After a relapse, the process has to be revisited. Of course, check with your doc concerning your gall bladder and meds.

    Revitalizing Sleep Formula: 2 at bedtime, and 1 when I wake around 4am
    Klonopin: 2.5mg at bedtime and 1/2 when I wake at 4am
    Melatonin 1.5 mg at bedtime
    5 HTP 200mg at bedtime
    trazedone 12.5 mg at bedtime (smallest dose is 25, so I bite in half)
    ambien 2.5 mg at bedtime (smallest dose is 5 mg, but I just bite in half)

    It seems like a lot, but it's all small doses (except the Klonopin, but I've found that essential)

    Good luck. Keep trying. Sleep can be restored. Your body can be retrained. I've done it several times. For me it's a been a long road of trial and error.


  9. FibroFay

    FibroFay New Member

    Isn't it the pits?

    At times I can find a sleep aid that works for a few nights, then nothing works again for a long time. The more I stress out about not sleeping the worse my sleeplessness gets. I've never tried Benedryl but I've heard it's safe and relatively cheap.

    I just wanted to caution you about mixing OTC meds or supplements with your RX meds. There can be bad interactions. Always talk with your doctor or pharmacist about this.

    Stay safe.

  10. nanna4550

    nanna4550 New Member

    I was taking Ambien CR for sleep until my insurance changed and it was going to cost me 170.00/mo. My doctor put me on Gabapentin and Trazadone (smallest dose of each) and I am sleeping through the night. The combined cost is only 24.00/mo. I'm thrilled.
  11. mbofov

    mbofov Active Member

    If your cortisol levels are high at night, it can cause severe insomnia. Not everyone with CFS has low cortisol as some people say. Mine was high in the middle of the night, had very bad insomnia. I was given Seriphos (phosphorylated serine) to normalize my cortisol levels and it worked like a charm, I started sleeping better immediately.

    A good test for cortisol levels is the Adrenal STress Index Test - it's a saliva test and measures cortisol levels throughout the day and evening (based on 4 saliva samples). Any doctor can order it. If your doctor won't, I'd suggest finding another, maybe a naturopath, who will. If your doctor gets snippy about something like this, I think it mgiht be time to find another one.

    Since fixing my cortisol levels, the following lets me get a decent night sleep:

    One hour before bed:

    3 mg. melatonin before bed
    200 mg. l-theanine (amino acid, naturally calming, helps brain produce GABA)
    calcium and magnesium
    150 mg. 5-htp (5-htp is an amino acid that helps the brain produce serotonin - but you shouldn't add 5-htp if you're taking an SSRI like Lexapro, you may develop serotonin syndrome, too much serotonin, which can be dangerous)

    If I still have a little middle of the night insomnia, I take 0.5 mg. lorazepam and 25 mg. benadryl as needed.

    I know, it sounds like a lot, but I'm sleeping around 9 hours a night, which I seem to need, and am not drugged or sedated in the morning. Before I fixed my high cortisol, nothing would touch the insomnia.

  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    xyrem is highly recommended for people with FM and CFS.

  13. jole

    jole Member

    For me it is. I will go forever on 1-5 hours of sleep/night, then suddenly crash and sleep 12-16 hours a day for a few days to catch up. I can't take sleeping pills or antihistamines...they have the opposite effect, as do some supplements, and really wire me, so they're out of the question.

    I take gabapentin, Lexapro, two antidepressants, a muscle relaxer, and my neurologist says it's a wonder I ever wake up!! Yeah, right! Nothing helps me sleep.

    And it's true, please do be careful when mixing prescription meds with supplements. Even though they are natural does not mean they are harmless. They can still cause interactions with meds.

    Hope you find an answer...wish I could too................Jole
  14. wenchwomyn

    wenchwomyn Member

    Hello I have been sick with FMS for 3 years now and really think the last 3 years I have maybe have gotton 2-4 hrs per week. I have been on all kind sof sleeping pills and they have not done anything for me.
    About six months ago I went in told my Dr that I has to sleep or I was going to die and he said let's try this .
    1-2 Trazodone 100 mgs
    1-2 Soma 350 mgs
    1 Nortriptyline 10 mgs
    I am now sleeping like a baby 5-8 hours per night and no hangover feeling in the am. I just hope it keeps working

    Good luck to you all

    [This Message was Edited on 12/01/2009]
  15. hensue

    hensue New Member

    It is the key for sleep for me

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