Help with chronic insomnia

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Mar 22, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi everyone

    I'm just wondering what others with CFS do to assist with getting decent sleep.

    When I had the first onset of CFS I couldnt get out of bed and would sleep for 16 hours a day or more, still feeling tired all the time. Over the last 2 years this has completely reversed to the point where I now have chronic insomnia.

    Most nights I get about 3 hours of very light sleep. Some nights I dont sleep at all. It's horrible when this happens as I get very bad leg pain for the next 2 or 3 days from it. I cant remember the last time I had a good deep sleep.

    These are the meds I'm taking:
    - 50mg nortryptiline at 5pm.
    - 20mg Phenerghan 1 hour before bed (I've only been taking this for 2 weeks)
    - 1 Imovane before bed, and another one at 2pm if I'm still awake or wake up.

    Even with all of this I still only get a few hours a night.

    What do others do/ take to help with sleep?

    I have an appointment with an insomnia specialist this Friday (at the cost of $400) and I'm hoping he can help me, as I believe getting good sleep is the key to getting everything else under control.

    Thanks.
  2. spiritsky

    spiritsky Member

    I take tryptophan with GABA and melatonin. My sleep has made a huge improvement and I no longer need Ambien or other sleep meds.

    For this to work I take 1000mg Tryptophan 2 hours before bed on an empty stomach. It takes a while for it to get absorbed so by the time your ready for bed you are primed for sleep.

    Then at bedtime I take 1000mg GABA with 1mg melatonin. Both get absorbed quickly.

    I Get to sleep easily and sleep generally through the night and if I wake up, I fall back to sleep pretty quickly again.

    good luck.
  3. spiritsky

    spiritsky Member

    You have to find the dose that works for you. Basically they don't really affect me, but if I take more tryptophan then yes, I'll feel sleepy the next day.

    From what I've heard, most people are not affected by tryptophan, just a small percentage of people will get a bit groggy the next day and only if you take too much - I'm one of them.

    This protocol has really helped me finally get decent sleep.
  4. krishna3

    krishna3 New Member




    i was finally able to sleep immediately after taking homeopathic dhea, a natural hormone.......do work with an knowledgeable practioner when taking it.........it took me 3 different forms till i found the one that worked for me

    and then i slept like a baby.........and since 100 percent of cfs sufferers have hypothyroid, i have to say i noticed a big diffference when i got on natural reverse t-3

    it changed my world when i had a comprehensive hormone panel done and took the natural hormones

    there are cfs and fm centers sho specialize in treating it naturally and effectively look it up on a web site for one near you.......worth the trip and time

    as ive been an alternative practioner for years as an herbalist and it was not until i had all this bloodwork done that i finally knew what i was actually dealing with
  5. Kryssi

    Kryssi New Member

    I have had Chronic Fatigue for 3 years and getting worse all the time. Dr's were only treating the symptoms and with CFS it becomes a horrible catch-22 in that one thing feeds another. I have just started a whole treatment that's been in research since the 70's by a Dr. Tietelbaum. I found a local doctor who offers this treatment of both RX and herbal medications. One thing that is emphasised over and over is that you MUST get 7-9 hours UNINTERRUPTED sleep in order for your body to start healing and if you ever have hope of recovery. My doctor says he has a 15% CURE rate on this treatment!!! While 70% of the others have significant improvment. Thats 85%!! I've been on the treatment a week and feel SO MUCH BETTER. I have more energy, can think more clearly, and I'm still working on the meds for the sleep part with my Dr but the key (according to the treatment protocol) is to take several medications at low doses. They work in conjuction with one another but leave your system better than if you take one big dose of something. (so you wont be hungover) Right now I'm on Ambien and Klonopin and tomorrow adding another. I had one FULL NIGHTS SLEEP so far. Ahhh. It was heaven. I also have hypothyroid and am on Armour Thyroid and a cocktail of some other things too. The treatment is individualised based on your symptoms and blood tests. You should really look into it. My doctor says that as the treatment progress my body will kick back in and we'll slowly come off all the meds and herbs. It takes 6-18 months. If I were you I would rather spend the money on a treatment like this that would make you feel better as a whole, including the insomnia, rather than on just someone who can help with the sleep part. There is a book out there you can get to take to your local doctor that can go through the whole treatment protocol in a way that a doctor can understand and use as a guideline. I'm so thankful I found this and I just want to get the word out so others can start feeling better too.
  6. Michelle_NZ

    Michelle_NZ New Member

    Thanks for your suggestions everyone, I thought I would update you on my appointment with the Insomnia specialist.

    It was a 2 hour appointment so I guess I got my $400 worth. He was quite knowledgeable about CFS and sleep disorders. He said that treating chronic insomnia is actually not difficult, and he has a 60 - 90% success rate with a number of different regimes (which I will outline for you all below).

    But (there is always a but), he said things get very complex with CFS and the insomnia is much more difficult to treat. There are basically 4 options, as follows:

    1) Tricylics - which it seems most of us are already on. He did say that he thought amitryptiline was a better one than nortryptiline. (I think amitryptiline is called Elavil in the USA)

    2) Other sleep meds - I'm sure you've all been down this path. I told him I was desperate for sleep and needed some drugs to help me over the next few weeks, so I am trying Temazepam. I have found this to be good in the past (before I had CFS), but I took 40 mg last night, and still didnt get a good sleep, just 2 hours of light dozing, and I feel like crap today.

    3) Sleep restriction - this sounds horrible and I am against it. Basically you only stay in bed the number of hours that you actually sleep. So if you are only sleeping 3 hours and gtting up at 7am, then you would stay awake till 4am and then go to bed. I'm simplifying the explanation, so do a google if you want to know more. I dont want to do this. If I tried to stay up that late I would just feel awful, still be awake and have no chance of sleep. My thinnking is that at least if I am lying flat in bed there is some chance of sleep.

    4) Light therapy - there is good research that suggests that people with CFS have their biorythymns all messed up. Exposing your eyes to intense bright light at the same time each day (say 7am) for half an hour can help reset them. you also need to eat at the same time each day, exercise at the same time (if you can), and go to bed. The light needs to be very bright (10,000 lux). I am ringing on Monday to order one over the phone (check out www.sunbox.com)

    There are different types of box, but the one I am going to get is like a hat and you wear it while you go about your business in the morning, rather than a box that you need to sit in front of. It costs about $350 NZ. ($200 US)

    The doctor himself uses one and says it works very well for alot of people.

    So - I hope that info is helpful. I will let you all know how I get on with the light therapy. Cheers
  7. mrstyedawg

    mrstyedawg Member

    you sound just like me. when i fist became ill with CFS 21 years ago i could sleep 16 hours a day also. it was such a deep sleep. the past 5 years i have done a complete turn around. i have tried everything ambien, lunesta, ambiencr, sonota, melatonin. The thing that I have found that helps me the most is a xanax.

    Does it feel as if your mind can not shut off? That it is racing. I thought sleeping all the time was bad but this is worse. I know exactly how you feel. When I get a good nights sleep it really helps me get through the day. When I try to sleep without the Xanax, it is like I am asleep but still awake, no deep sleep here.
  8. Michelle_NZ

    Michelle_NZ New Member

    that is exactly like me. Even when I am "asleep" I am half awake. When I am dreaming, I know I am dreaming and I could open my eyes at any time and be fully awake.

    It is horrible. I am having a bad day and feeling very sorry for myself. This sleep deprivation is making desperate and at times I feel like I am going crazy with it.

    If I have a night of no sleep or little sleep (less than 2 hrs) I am in so much pain for the next few days. I dread it.

    the sleep meds dont seem to do much at all - I feel drugged up, but still cant sleep.
  9. mrstyedawg

    mrstyedawg Member

    Hey what is New Zealand like? Just read your bio.
  10. remarkb

    remarkb New Member

    I just started taking clonazepam 1mg 1 hour before bed. It has a much longer half life than Xanax, so it will not wear off and you wont wake up too soon. Plus you dont get short acting withdraw symptoms. I have taken Xanax in the past for a couple of yrs and while it did help me sleep, I started have bad withdrawal early in the day. The Clonazepam is the same type drug, but works better for me. I also recently purchased a sleep number bed and that has help a great deal. Another think is to take Provigil in the daytime. It is a good idea to relax for a while before going to bed... do a search for sleep hygene and get some tips on making your sleep deeper and longer.

    Hope this helps
    Brian
  11. Michelle_NZ

    Michelle_NZ New Member

    I havent travelled much, but I love living here in Auckland. I did spend some time in the States in Chico, CA (which I hated!) and I was blown away by how beautiful Auckland was when I got home.
  12. Michelle_NZ

    Michelle_NZ New Member

    I'm sorry to hear you are having such a tough time.

    It sounds like your circadian rhythms are completely reversed.

    Apparently the bright light therapy works for the type of sleeping disorder you describe. I can't vouch for it personally, but I am also so desperate that I'm going to try it.

    I hope things get better for you soon.
  13. Jgavi

    Jgavi New Member

    Seems you need something that will work for sure...

    Read about "sodium oxybate" in the Journal of Rheumatology -you can sign up for free online their website-

    People need to read this and other great articles from the "Journal of Rheumatology"..this is were all our Drs go and get the information! Sad thing is many Drs dont keep up on whats the latest for FMS. It has an excellent article on research done on Fibromyalgia and sleep.

    This is a drug that is strong but if nothing helps you I suggest reading up on it...a low dose can work wonders!

    Without out our deep sleep you will never ever have lower pain, rested feeling or a life!

    www.medscape.com search "soduim oxybate"

    The Effects of Sodium Oxybate on Clinical Symptoms and Sleep Patterns in Patients With Fibromyalgia
    Scharf MB, Baumann M, Berkowitz DV
    Journal of Rheumatology. 2003;30(5):1070-1074

    jgavi[This Message was Edited on 03/26/2006]
    [This Message was Edited on 03/26/2006]
  14. Empower

    Empower New Member

    Maybe it is the Nortriptylene keeping you awake.

    I took it for awhile and while it put me to sleep, I got awake 3 hours after taking it with my heart racing. Same thing happened with Effexor
  15. auntyemnga

    auntyemnga New Member

    Has anyone tried reflexology? I went to a very good reflexologist last Thursday. He was able to detect my insomnia, lower back pain, sinus & allergies and sluggish lymph system. He then went ahead with a 30 minute treatment.

    Anyway, I've been sleeping better since receiving this treatment.

    Just a thought,
    Auntyem
  16. Michelle_NZ

    Michelle_NZ New Member

    Hi, I thought I would update you all on how I am getting on with the Light Therapy and the Melatonin.

    I started both about 2 weeks ago, and this is what I have noticed.

    I am now falling asleep MUCH better and earlier. Previously I was sometimes awake until 2 or 3 am even with sleeping pills.

    I am taking 3mg of Melatonin at 9pm, and 2 x Imovane (Zopiclone) when I actually jump into bed, which has been anywhere from 9pm - 11.30pm. I am trying to go to bed at the same time each night, but I havent manaaged it very well. I have been getting quite sleepy early in the evenings (a side effect of the light) and I may need to change the time of day that I use it to counter this.

    The good news is that I am now getting about 4 or 5 hours of sleep instead of 0 - 3 hours.

    During this time, I have noticed a big decrease in body pain, espeically in my legs.

    There have also been some negative side effects which I am working through at the moment, as follows.

    I had been using the light for about 10 days and keeping a journal of all my symptoms, meds, activities, emotions etc. Anyway, I was getting very painful migraine headaches almost every day from about lunch time onwards. I did some research and found out that one of the potential side effects of bright light thereapy is headaches. I called my specialist and he suggested I cut the light treatment for 2 - 3 days to see if they went away. If they did, he said I would need to try the lower light intensity for a shorter time.

    So, I did stop if for 2 days and no more migraine, so now I am ressuming the light treatment on a lower intesity and shorter duration. I will need to experiement to find the right dose so to speak.

    My sleep is still far from normal, but I am please that I am now getting a few more hours of it.

    I would recommend trying this treatment if you have bad insomnia and nothing else is working for you. I was getting so desperate, and I am now feeling somewhat hopeful.

    I am actually using a Bright Light sunvisor instead of a light box, this means that I can walk around in the morning while wearing the visor and I dont have to sit in one place in front of the light box.